Brian: And today we’re joined by Randy Klein, aka a Dude with Sjogren’s. How Ya doing, Randy?
Randy: I’m doing well, yourself?
Lupe: Great. Yeah.
Brian: Doing good. We appreciate you spending a little bit of your time with us this evening. We’ve got some cool questions outlined for you.
Randy: Perfect. I’ll do my best.
Lupe: Randy, if you don’t mind us asking, when did you finally get diagnosed with Sjogren’s?
Randy: I was diagnosed with Sjogren’s in my early 30’s. I’m 49 years old and I was diagnosed about, it was about 34 or 35 years old.
Brian: I spent some time reading some of your writings and you had said that you had symptoms from early childhood. Approximately how many years and how many doctors did you go through till one finally gave you that diagnosis?
Randy: I’ve been seeing doctors since I was a kid for a multitude of different issues. Problems with breathing, problems with my eyesight, problems with my stomach, problems with getting light headed. And uh, you know, my mother would go through the process for about a year, year and a half. And it’s typically a four or five year cycle, so, you know, after about four years the doctors are willing to go through the cycle again.
Randy: We did this till I was about 16 and I picked up the mantle after that. But uh, the dry eyes and the dry mouth, became very pronounced when I was about 10 years old, is when I remember the, dry mouth really showing up and getting worse through my teenage years. And around age, 18 or 19 is when the dry eyes went into overdrive and you know, I just basically went and put a pillow over my head for a good part of the day to try and keep my eyes hydrated.
Randy: I had problems with dysautonomia. I didn’t know this until recently. And I would go through periods of, you know, wanting to pass out or not feeling well. Just the things that go along with dysautonomia and other issues I had, such as cataplexy, which wasn’t diagnosed till about four or five years ago.
Randy: And then mass cell activation syndrome about two years ago. So when I was ah in my 30’s, I’d made a big push to get some of these problems dealt with and you know, I’d found out about a Sjogren’s Syndrome and I had been talking to doctors and gone through multiple doctors for tests. They tried to reload a bunch of things. I’d asked about Sjogren’s Syndrome, went through the eye test, went through the tests, you know, the scans, the blood tests and all that. And then I was finally diagnosed by an ENT when I was about 34, 35 years old.
Lupe: So you were the one who actually brought up Sjogren’s?
Randy: I did.
Randy: I found out because of a CELIAC Disease. A friend of mine had Sjogren’s Syndrome and said, you know, these other symptoms you’re talking about, they’re not common to CILIAC Disease, I’d been an advocate at that point. But they’re more common with Sjogren’s Syndrome. And that’s when I went down the path, you know, burying myself for honestly 4-5 hours a day, doing research.
Brian: And when you say eye test, are you talking about the moisture tests for the eyes?
Randy: Yes, yes. I had the, uh, the slit lamp test, and I’ve had the Shermer’s, which was quite common back then. And the Rose Bengal and the, I’m trying to remember the name of the other standing, you know, the common tests that were done back then.
Randy: At the same time I’d gone through for the nuclear test where they had me a suck on a piece of lemon. And they had to record how much saliva was produced during that timeframe.
Randy: As well as a multitude of other tests. And at that point, you know, they decided it’s a good chance that you have it. We’re going to watch you for a while. And honestly it was about 4 or 5 years ago, later, where she said to me one day, you know, you’ve got Sjogren’s Syndrome. And I said, thank God I finally have an answer.
Brian: It’s funny because that’s a question we normally ask when we’re talking to people is, it seems that the consensus is once you get a diagnosis, there’s such a relief, because you know, now.
Randy: Of course . There’s a real reason for it. It’s not mental illness.
Lupe: A lot of people think it is.
Lupe: I’ve never heard of that test with what you suck on a lemon. I’ve never heard of that.
Randy: So basically, I don’t know if they still do the test or not. They put a wedge of lemon between my teeth. And I think I had to have some dye injected at the same time, laid on my back. And I’m pretty sure it was a it was a nuclear test. They ran a test to see how fast saliva was produced. Maybe it’s called a saliva scan, t’s been a while. But that was a big test to see just how much saliva I produced. You know, with a pretty strong motivator, which was the lemon.
Lupe: Nowadays they’re doing that biopsy. Have you heard of that?
Randy: I’ve heard of it. My, uh, ENT has recommended against me getting it. She has seen a lot of damage in my mouth, uh, in my throat. Um, the funny thing she said to me is, I’d never heard this before. She says, you have a lot of mucus sitting on your voice box. And I said, well, what does that mean? She said, well, that’s actually a sign of Sjogren’s Syndrome. That should be cleared out regularly. Yours isn’t.
Randy: And it’s affects your voice and you know, you should be, have a much higher voice than what you do. But your voice is obviously lower as a result of the Sjogren’s Syndrome. So, you know, between the dry nose, the dry eyes, the dry ears, the dry throat, the dry skin, the dry everything, and all the tests that had happened there was just no reason to go any further. And that’s when the ENT said, we have a good conclusive evidence to prove this at this point. Let’s see what we can do for you to help you out.
Lupe: Good cause I hear that’s painful. And the pictures look awful.
Randy: Well and I’ve heard some people, that quite honestly have had botched ones. They’ve gone back, the one’s been positive, they’ve found the right spot. Some people do end up with some nerve damage inside their lip and some people don’t. You know, it’s luck of the draw. The problem is, in my case, I have nerve damage and for me to take that risk, they just didn’t think it was worth the value of doing the test.
Brian: It sounds like you’ve got a pretty supportive doctor.
Randy: I do, oddly enough. But with having an ENT trying to support Sjogren’s Syndrome, they don’t see me very often. And outside of recommending some sprays and all that. It’s different from a rheumatologist ,recommended medications outside of Salagen, which is pilocarpine. Most of it is just treating the symptoms and not really getting into any other complex medications to treat it. So I’ve done the rest of the medications. They haven’t worked well for me, but she wasn’t the one that was able to recommend those medications.
Brian: Do you have a rheumatologist now?
Randy: I do have a rheumatologist and he is quite good. He, uh, struggles with the concept of Sjogren’s Syndrome. He still believes that Sjogren’s Syndrome and Sjogren’s disease are actually two different, uh, physical diseases, which I can’t seem to be able to convince out of it. That’s okay. He respects me. He knows that ah, I do my research. But a lot of times it’s like the rewind button has been pushed back and we’re back to a conversation that happened, you know, 4-5 years ago.
Randy: So I’ve had to do a lot of research myself and I’ve had to find a good specialists out there who understand this disease and other diseases. And understand how to separate it out. And they followed me down all the different rabbit holes until we’ve been able to figure out, you know, this is Sjogren’s Syndrome. This is Ehlers-Danlos Syndrome. This is mast cell disease. You know, all the different things we’ve been able to sort it out. But quite honestly it’s been the pursuing the doctors as opposed to the doctors pursuing the tests.
Lupe: So you’ve been diagnosed with all those?
Randy: Yes, I have.
Lupe: Oh. Wow.
Randy: And so for a person with Sjogren’s Syndrome and what we’re going to find, and this is my heart health belief and I will, consider it fact, until I’m proven otherwise. A lot of us will have overlapping diseases. Whether it’s the common Lupus or Rheumatoid Arthritis or Hashimoto’s Thyroiditis, Scleroderma, the typical diseases that we find alongside Sjogren’s Syndrome. But they’re finding strong ties, as well, into Ehlers-Danlos Syndrome, mass cell activation syndrome, even autism.
Randy: We’ve heard a lot of, you know, evidence that’s supporting that there seems to be some sort of familiar link or that there is a good chance that the person will end up with, you know, two or three of these diseases as opposed to just having Sjogren’s Syndrome alone. And realistically we’re open to a lot of other autoimmune diseases. But we still have to live our lives and move forward and not be afraid of all this stuff all the time.
Lupe: Live your best life. That’s what I tried to do. I’m afraid that I’m going to be diagnosed in the future with something else, as well? Because it seems that everybody, like you said, has a couple of auto-immune’s.
Randy: Well, and It’s typical. So we used to consider there were two different diagnoses. There was primary Sjogren’s Syndrome, which for all intents and purposes is just a categorization for research. that they can say you have primary Sjogren’s Syndrome, which means you don’t have other diseases. And you have secondary Sjogren’s Syndrome, which you means you have Sjogren’s plus a second autoimmune connective tissue disorder, which is fancy way of saying Lupus, rheumatoid arthritis, Scleroderma, CILIAC disease.
Randy: I mean we could go through a list of a bunch of these. But you know, realistically, most people will not live their whole life just being a primary Sjogren’s. They will develop a second autoimmune disease. And you know, like I said, I’m not going to live my life in fear of it. If I believe that it’s treated early and we get the symptoms under control, it’s not likely to proceed. But you know, my wife also has multiple autoimmune diseases and they do tend to hunt in packs.
Brian: That kind of makes sense, saying it that way because if your immune system isn’t functioning properly, you’re more likely to have additional auto immune issues than just one.
Randy: Well and complications. So it’s, gotten confusing and the struggle is to figure out what is opinion and what is fact. There’s a lot of immunological diseases like mess cell activation syndrome is one, where people are saying, do you have primary Sjogren’s or secondary Sjogren’s based on the mass cell activation syndrome. And it’s, well, what does that mean?
Randy: Well, which one caused the other one? How would I know? You know what, what difference does it make at that point? I mean, you’re living with a two disorders. They’re both challenging to say the least, but I really struggled with the chicken and the egg argument. It took me off course for a great many years. And you know, chasing that didn’t actually get me any better. And I never did really find out the cause.
Randy: Was it the Ecolab poisoning I had when I was a year old? Was it the mass cell or the asthma that had been kicking around since I was much younger? Did the Sjogren’s come first? And I had to come to a realization with myself that it didn’t really matter. I had to deal with it and the cause, if we ever found it a great. But it couldn’t be the driving force in me trying to get better.
Randy: That’s a tough one.
Lupe: Yeah. Do you know other males with Sjogren’s?
Randy: I do. And I’m actually meeting up with a friend, Raymond Hill ,who’s with the Sjogren’s Syndrome Foundation in the U.S. He’s meeting up with me in Boston, just before the Sjogren’s conference in April. And uh, I’m in two groups that are roughly about 80 or 100 each of men and there is some crossover. So it’s probably, you know, 120 guys between the two groups.
Randy: But men with Sjogren’s Syndrome are less likely to be diagnosed and they’re less likely to talk about their disorders. We have two other groups we’re involved with Facebook that are about 30,000 between the two of them. And there are men there, but them posting is very infrequent and when they do speak up it’s either profound or there’s a few words.
Lupe: Yeah. I’m a member of several groups and I’ve seen maybe less than a handful, you know, of guys interacting with the group.
Brian: Are any of these groups male only.
Randy: Yes, they are. I started one about a year and 1 1/2 – 2 years ago. I was in uh, both sex, Sjogren’s group. And I said to the person that was in charge of the group, I said, you know, there are men on this group. That group was around 12k-13k, at that point. I said, I’d like to launch a men’s group. Are you okay with me launching it through this group? I
Randy: ‘m not looking to, you know, remove members. I want to give these guys a chance to speak. Because they don’t speak a lot. And in the group with men, they’re more likely to talk about issues such as hormones or other male issues that may come up. The way it affects a man, can be in some ways, different from a woman. But you know, what? We don’t experience what a woman will feel as well too.
Randy: And I didn’t want to take these guys out of the group. Because we really do need to, we need to be a group as a whole. But the guys were more likely to talk with each other in the group. And that’s exactly what happened.
Randy: Then I found a second group and the person who started it, had sort of left the group on its own. And it’s sort of quieted down. So I sort of kick started that one and got things talking again. And both the men’s groups are, I’d say quite active. So you know, someone’s talking at least once a week. But compared to before, where nobody had talked in about five or six months, with about 60 guys. It’s kind of odd considering, you know, these guys feel that isolated, but nobody’s talking.
Brian: Well, that’s good. And that’s kind of the response I was hoping to get, that a male only group, they felt a little more comfortable opening up and talking about what they’re feeling.
Randy: Oh. And they do. And the funny part was, I expected, when I started this group for it to be mostly, you know, Canadian North American. But I had people show up from the Middle East. I had people that had joined from Asia. I think we have a fellow from Africa, as well, too. I mean it’s 80 or 100 people. It’s not a huge group. But considering most people have never met a person that’s male and has Sjogren’s Syndrome, it’s not bad.
Brian: How physically active have you been able to continue to be?
Randy: Well, I’m gonna tell you something. So, I was also hit by a car when I was about 19 years old. Broke both my hands, broke my shoulder, broke my arm, shattered my leg, broke my elbow. It was a very tough time. It took about three years to bounce back and they never figured that I’d walk without a cane. I’ve always been the guy that says, how do I push it to the next level?
Randy: And realistically I was told that I could be on disability, if I want it to be. I just can’t picture myself stopping. So, a lot of days are like marathons, if I can put it that way. It’s exhausting. My legs and my arms feel like I’ve run 10 or 20 miles. But I’m still fully employed running a company up in Canada and I’ve been doing it for 25 years.
Randy: But I had to get smart in the way I did things because I certainly can’t, I can’t do things the way that I did 20 or 25 years ago. My hands stopped working properly because of neuropathy about 20 years ago. I still work with computers. I still work with people. I still built systems. Not in the sense of building computers but building business solutions. But I had to get very smart in the way I did things and my business actually became a lot better and more prosperous. Because I really had to think about what I was going to do before I did it. So it’s been a blessing for me, in a way. And that’s probably about the oddest statement I’m going to say tonight.
Lupe: You keep moving along and living, that’s what it’s all about.
Randy: Well, and that’s the way I looked at it. I have a lot of things I want to do in my life. I’ve, you know, I’ve been successful a lot of things. I was very successful at things, younger in life. I’m still doing the things I want to. I’m learning stuff with music. I’m writing. You know, I’m not as physical as I’d like to be, but you know, that’s the reality of living with a systemic disease.
Lupe: Some days are hard. Definitely.
Randy: Well, you know what’s funny, every day was very hard, once, I got the other diagnoses, as well. Because it’s kind of funny, living with Sjogren’s, anything that comes along, you’ve got a systemic disease automatically gets stapled onto Sjogren’s Syndrome. And it makes it very difficult because most of us aren’t just going to have one disorder.
Randy: So, I had to get very smart and I had to figure ways to get around the medical system, so that I could get other tests done. And in some cases go from doctor to doctor and go from private system to the public system we have up here. To find ways to get the test done. And in some cases going down to the states, uh, to get blood tests done to, get confirmation for things. During this time, my wife was very active as an autism advocate and found out from a lot of other people that they had Sjogren’s or they had some of the other diseases. And was able to locate other people who recommended very good specialists.
Randy: And at the same time she was able to get into genetics. She found a study linking Autism with some other autoimmune diseases. She got in. They got me in on an unrelated thing, but once I got in there, they were able to me some information. And based on my questions, they were able to recommend tests. And they were able to recommend doctors, that I could go back to my family physician, with a genetic test and saying, you know, this is what they would like you guys to refer. Because they don’t directly recommend patients to the specialists. They’re looking specifically for blood markers. They haven’t found them yet, but this is what they believe you’re going to find. And they agreed with that. And you know, it’s been a really fun trip for the last, I’d say four or five years, but I’ve had a lot of success. But it’s been a lot of me and my wife pushing really hard to find out what’s going on with us and what’s going on with our child. Our child is autistic and has Ehlers Danlos as well, too.
Brian: Wow, that’s tough. I’ve got a buddy with a child who’s artistic and he discusses some of the challenges with that, with me frequently.
Randy: We’ve been blessed. We’ve got a child that, uh, it’s now 18 years old. Loves music. Loves to draw. Is in the top of their class. And to be honest, you know, these are normal classes, high-high marks with a choice of where they want to go to university next year.
Brian: Oh, that’s awesome.
Randy: It’s awesome. But it’s been a real challenge trying to balance the special needs program and having a service dog at one point. And you know, just getting the right people in place and understanding what advocacy is. And living with an autistic child actually helped me to become a much stronger advocate for myself and for my wife. And same with my wife. For me.
Randy: What have you found to be the biggest help in managing your symptoms?
Randy: What would be the one thing? Well, I can say that Salagen has allowed me to keep speaking. And I know a lot of people struggle with Salagen because of the sweating and some of the other types of features that they have. If I wasn’t using Salagen, we don’t have the other drug Evoxac or Eco Vac, here in Canada. We only have a pilocarpine and it allows me to, quite honestly, to speak and not get food and pills stuck in my throat all the time and not to be choking all the time. So it’s been good, but I do have the negative side effects of the excessive sweating, which makes my dysautonomia worse, as well, too.
Randy: Does that work for you? How many hours does that work for you?
Randy: I take four a day. I take a five milligram pill. I take one with breakfast, lunch, dinner, and before I go to bed at night. And I usually get about an hour and a half of positive saliva, each of the times that I take it. And when I first started taking it, it almost felt like I was drowning. Cause, I went, there’s so much saliva in my mouth. This pill, it must be too strong. And then I realized it had been so long since I’d had any saliva in my mouth. And I’d had that cotton feeling and the white foam, I’d forgotten what it felt like to have saliva in my mouth.
Lupe: That’s exactly how I felt. Yeah.
Randy: Yeah. But, but other people take it and it’s overwhelming for them. With me, I cut the pills in half. At one point I cut them into quarters. I did whatever I could to try and get that right balance. I’ve always been about, you know, how can I test this and push the limits. And I talked to doctors and they were okay with what I did, as long as I wasn’t passing the maximum amount. And for me to take more than a five milligram pill meant that I would almost pass out and feel like I was having a heart attack. So I had to limit it to five milligrams at a time.
Brian: Do the products with pilocarpine them help at all?
Randy: They help a lot of people quite a bit. The big struggle for some people, if the saliva glands are as badly damaged where they’re not producing saliva anymore. It’s very difficult for anything to produce something in a totally nonfunctioning saliva gland. I’ve got one that’s totally shot. That they talked about removing a few years ago. And they’d removed my mother’s saliva gland and they decided to just leave it.
Randy: So on the one side of my mouth, I don’t produce saliva at the front. At the back, I get stones there all the time, but I do find the Salagen works with my mouth. It works with my nose. It works with my ears a little bit and it definitely helps with my eyes. At one point I was using, you know, the individual Thera tear drops that they have, the sterilized version?
Lupe: Yes, yes.
Randy: Yeah. The box comes with a five or six packages and each package holds four droppers. I was going through a box every two days. And now I use a drop, I use four droppers to six droppers per day. And you know, other people would say that’s awful. You know, there must be a better way to go. Compared to using, honestly a half a box of droppers every day and still feeling like my eyes were on fire. It’s, once again, it’s a blessing for me because my eyes are, they said that considering where I’m at, my eyes are reasonably well. And that my teeth are doing okay. I had a root canal last year which was no fun. And a couple of cracked teeth from pain. But, uh, they said, considering where I’m at, I’m doing better than most people that they’ve come across with Sjogren’s.
Lupe: Yeah. A lot of people have to have their teeth pulled, so yeah that’s good .
Randy: Yeah. My Mom, I’ve been trying for years to get her to get tested for, for Sjogren’s. And in her case they removed the saliva gland and uh, she lived for a lot of years with dry mouth, as well, too. But, uh, you know, it’s funny. And just diagnosed with a, what’s it called again? Uh, my Bowlby gland dysfunction or what they call blepharitis. That’s where the eyelids don’t produce the right amount of oil. They get stopped up.
Randy: And so without getting too technical, the way an eye, the way a tear work is, if you don’t have this oil from the eyelids in there, the eyedrops evaporate too quickly. And so in this case, I’d love for her to get tested for Sjogren’s. Uh, I don’t know if it’s going to happen or not. But, uh, you know, all the same symptoms, but her teeth have crumbled pretty badly over the years because of the dry mouth, as well, too.
Lupe: All the reading that you’ve done, do you think that Sjogren’s Syndrome is hereditary?
Randy: I do. I also have an, you’ll love this one. I have an uncle who was diagnosed with Sjogren’s Syndrome.
Lupe: Oh wow.
Randy: So it’s and it’s funny, I mean, typically what they say is, well, you know, if one person has Sjogren’s, you probably got Lupus in the family. You’ve probably got rheumatoid arthritis or autoimmune thyroiditis or some other form of, you know, maybe graves’ disease, which is when your thyroid goes too fast instead of too slow. You’re likely to see stuff like that in the family. Not show runs with everybody, but to have two males in the same family, you know, one generation apart. That’s, to me, that’s a pretty substantial.
Lupe: Probably back in the day people didn’t even know how to test for it.
Randy: Well, he had a lot of problems back then. It was around five years ago, six years ago, and they actually ran tests on him for, for Sjogren’s. And he was diagnosed. I guess he would’ve been in his mid to late sixties.
Brian: What level of involvement do you have with the Sjogren’s Syndrome Foundation?
Randy: So it’s kind of funny. I love doing research. I love submitting articles and the Sjogren’s Syndrome Foundation to me is key to getting a lot of this information out there. I don’t work with them. I do work with them. Um, my logic is that they’ve got some good articles and at some point I hope to be helping them more down the road.
Randy: But at this point I don’t have any money coming from them to me. I don’t work for them, I just support them and I go to their conferences. And I worked with my buddy Raymond, as well, too, to work with the men in the states. And I’m also working hard to try to get the message of Sjogren’s out to more people. And the Sjogren’s Syndrome Foundation has a similar, I’ll say mandate. They want to get it out there and get people educated. We have a common goal there, so I worked with them for that. But I don’t work for them.
Brian: Do they have Sjogren’s support groups in your area, like they do here in southern California?
Randy: Well, the funny part is the… I’m in Canada, so Canada actually… The person who started it was involved somehow with the Sjogren’s Syndrome Foundation. She started a group up here and it broke off and uh, she asked them, if it okay if I start up a, like a foundation or something similar in Canada? And they said, yeah, with our blessing, which is nice to hear, you know. It’s important to get the word out. So we do also have a… I’m trying remember the name of it, it’s different than the foundation, but we do have a Sjogren’s Society, I think is what they call it. The Canadian Sjogren’s Society or Sjogren’s Society of Canada. And they also do put on seminars and they do put on conferences once a year. They’ve done some web conferences, as well, too. And they’re working, get doctors educated here, as well.
Randy: And they’ve brought some real top notch talent to these conferences. A lot of it coming from the states. And you know, when I went to the one last year, that was in Canada, I was just blown away by the one speaker from the states that was talking about, you know, Sjogren’s being detected earlier outside of biopsy and an SSA using some other, uh, antibody tests. And then he started talking about men with Sjogren’s. And you know what, I was just blown away. I’d never seen anything like that any place. And I was glad I had gone to the conference. I do go to both the Canadian and the American conferences. So we do have support groups through the Sjogren’s, uh, I’m trying to remember what called, Sjogren’s Association or whatever it is here in Canada, but we don’t have as many groups as what they would have in the states.
Brian: Correct me if I’m wrong, you might know this, I don’t recall the Sjogren’s Syndrome Foundation, there’s documentation where they suspect 4 million people with Sjogren’s. Was that North America or is that America by itself?
Randy: Uh, just the US. So we figured that there’s about 350 million approximately people in the US. I think it’s about 35 or 40 million people in Canada and they were approximating about 4 million people. So that’s less than 100.
Randy: I was going to say, which brings up an interesting, an thought that, that I don’t think a lot of people have thought about if it’s that common where we’re under one in 100, you know, that’s pretty common. If you go to a school with 800 students, that means that there’s more than probably about 10 kids there that will developed Sjogren’s, right?
Randy: So what’s the likelihood of other diseases occurring with Sjogren’s because it’s so common, do you know what I mean? And it sounds funny, we’re having a conversation about disease that nobody seems to know about, but it turns out it’s quite common. And if that’s the case, how many other things go along with Sjogren’s that aren’t really part of Sjogren’s, but it’s just, there’s so many of us, it’s common for us to have these other diseases or to have these other conditions, that may or may not be part of Sjogren’s.
Brian: On that note, I’ve obviously been doing research and trying to find more and more research papers that are Sjogren’s specific. And it seems like the test pool is even pretty low numbers. I mean, I remember reading a study where it was like 27 participants and another one was 46 or something like that. In your research, have you found any research projects where there was a larger pool of participants with Sjogren’s?
Randy: It depends on what they’re studying. So most of the Sjogren’s, uh, studies that I’ve seen, I’ve been very specific. You know, Sjogren’s with let’s just say obesity, to be funny. But you know, Sjogren’s with obesity or Sjogren’s with thyroid or Sjogren’s with Lupus, They’re very, very specific. And typically most of these studies you’ll are smaller numbers.
Randy: But there are some bigger numbers studies that have come out of Europe and have also come out of, I believe it was Brazil or someplace in South America and as well as Asia. And I look and go, you know, if it’s that common, there’s so many of us out there, is it the fact that we’re not volunteering or it’s too difficult for us to get there or it’s not being recognized. Or a better question would be, what are the qualifications for determining who actually qualifies to be a candidate for a Sjogren’s study?
Randy: So, right now the Sjogren’s diagnosis drastically changed in 2016 to only include the SSA antibody. And to include, you know, a lip biopsy, one or the other. And some other criteria being, you know, you can demonstrate dry eyes and dry mouth with other specific tests that aren’t as critical as the SSA or the lip biopsy. And there’s all these other people out there that are in the 30 percent that don’t have the antibodies. And they may not have had a lip biopsy done, but at the same time they’ve still been diagnosed because the doctors are convinced beyond a doubt they have it. But they’ll never become good candidates for a research study. You know, what happens with those people? We’ve got a very small pool of people that are going to be SSA positive. Or in the case of a study they did in Canada, they only wanted candidates that had both a positive lip biopsy and positive antibodies. But 30 percent of us will never have positive antibodies.
Randy: And the latest, I was gonna say the latest thinking from the speaker that came in, an immunologist from the state said his research, he’d found that it seems to be more equal, male and female. But men typically do not have the SSA antibody, it’s a rarity. And I’ve met people that have it, so it’s not an impossibility. And a lot of times the testing stops at antibody testing. It never makes it to a lip biopsy and therefore people are ruled out for having Sjogren’s Syndrome because they didn’t have positive antibodies.
Lupe: Yeah, I’ve heard that a lot.
Randy: And the big struggle, there, is anybody trying to get diagnosed; if let’s say you do get the point of a rheumatologist. The rheumatologist will typically do the antibody test, but now we have to cross specialties and refer off to an ENT. How often are they going to do that and how often are they likely to say you don’t have the antibodies? Let’s stop.
Brian: Lupe, your general practitioner ran blood work in threw you straight to a rheumatologist.
Lupe: She threw me to an internal medicine doctor.
Brian: Okay. And then…
Lupe: But she already knew, but that’s why she pushed me to go.
Brian: Ok. Ok.
Brian: So yeah, no.
Randy: That’s good.
Brian: No ENT was…
Lupe: No ENT, they sent me… I had a really dry cough and it… I just had it for years and it wouldn’t go away. I couldn’t talk. I couldn’t do anything because I was coughing all the time and finally, they sent me to an ENT, and they gave me a pill called Gabapentin.
Randy: Gabapentin. Yep.
Lupe: Yeah. And I was on that for a long time and it did take my cough away, but it gave me really bad brain fog, after several years. And I just, I forgot all my words. I had to get off of it. It wasn’t a good pill for me after a lot of years.
Speaker 3: Well, I think it’s about 30 percent of US present with very strong, uh, neurological symptoms. And Gabapentin, it’s not a cure. A lot of people think that it is. What it does is it masks the symptoms of specific neurological disorders. They use it sometimes with bipolar, as well, too. They also have given it to elderly people to calm them down. They’ve used it in some cases with epilepsy.
Randy: I was on neurons and myself for about three or four years and I had one of the very rare side effects. It can actually affect your thinking and give you, they call it, what was it again, strange thinking. Which is, in my case, I’ve found that I really didn’t have much of a conscience anymore and it made me kind of aggressive, like kind of really aggressive and I didn’t feel bad about it.
Randy: And I said, something’s not right here. I’m a guy that recognizes patterns. If I’d never recognized that, I’d be in jail. And I said to the doctor, this drug works so well. I don’t want to give it up. The nerve pain is so bad and the nerve pain was coming from the Sjogren’s. We know that, uh, I have small fiber neuropathy, but the Neurontin works so well, but I was afraid I was going to hurt somebody.
Randy: And so I went off of it and they tried, Lyrica is another drug. But the way those two drugs work is, they mask the symptoms. They don’t actually deal with the problem, so it gets worse. And eventually, you know, a lot of us will lose the mobility in our arms and our legs and on her hands because the nerves just aren’t working properly.
Lupe: Oh, I didn’t k now that.
Randy: It’s a well drug. I mean, I tell you, no word of a lie. If I could take it, I would go on it the rest of my life. I had so many positive side effects to it. But I’m a family man. And uh, you know, family comes first, right?
Lupe: Correct. That’s correct. What other pills are you on? I know, I know it’s a lot, but like, um, I guess they, what’s, what am I trying to say? They put you on one pill and then it gives you a certain side effects. So, they kind of swap it out.
Randy: Yeah, it’s, a systemic disease. So, um, you know, Sjogren’s Syndrome is one of those. So it doesn’t just affect one part of the body. And that’s the nature of the type of disease we have. They have a whole bunch of different drugs that they try. So you know, I take Salagen, in some people it triggers their dysautonomia, which also goes along with Sjogren’s Syndrome.
New Speaker: And next thing you know, their blood pressure drops or if it goes too low and then it goes high or they feel woozy. And the Salagen may make it worse for some of those people. You know, now what are you doing? You’re increasing the salt in your diet to try and deal with the blood pressure issues. Next thing you know you’re on blood pressure medication. In my case I have ah, I had low blood pressure. It’s more under control now as a result of the dysautonomia from the Sjogren’s syndrome.
Randy: But I also ended up on a very high dose of testosterone because unfortunately this disease has caused problems with that and I’m on the highest dose you can take. I’m pretty normal I think, a guy being on this medication. But I look like an older football player as a result of being on this medication. But if I go off at the testosterone just tanks and the consensus is that the, the Sjogren’s Syndrome is one of the driving factors. It could also be, I’ve got psoriatic arthritis, it could be one of the two, but they all flare at the same time, unfortunately.
Brian: Yeah. I guess that makes for a pretty bad day.
Randy: Well, it can, but you know, if you’re pushing yourself hard enough and you’re motivated, you hit that wall and you try to keep going. Right?
Randy: Every day is a marathon.
Lupe: That’s right, for us, definitely! How are you feeling these days versus how you felt prior to being diagnosed?
Randy: I’m not gonna lie to you. It was a very dark time. I’d had some, uh, some very, very violent nerve pain. I, uh, I was dry. I couldn’t handle being outside because the light was, uh, was blinding to me. I was a door to door salesman at the time and you know, the dysautonomia was a big problem too. I didn’t know I had it. I was chugging coffee, I was smoking at the time and it was drawing the at worse and make me want to pass out. And it was not a good time in my life.
Randy: And to be honest, I was self-medicating with alcohol at the time too. I’ve been sober for 25 years now, but back then it was really bad. And you know, after we got married and I started looking for answers and found out eyedrops would help and special glasses would help with blue in them. And you know, drops in the mouth and finally Salagen. And, and drops in the ears and drops in the nose and creams for the skin. Things were better, but it was very, very bleak because it seemed no matter what I did every day something was being taken away from me. You know, and being hit by a car when I did in the car accident, I had that on top. So that was another convenient thing for them to say, this is all a result of your car accident.
Lupe: Oh, of course. Yeah.
Randy: Even though the symptoms predated it.
Brian: What research have you come across or has anybody, I’m sure somebody has done research, but the psychological effects of having a chronic illness, it’s something we’re starting to research a little more. Can you speak to that?
Randy: Well, I can speak to that personally because I did have some mental illness that arose from, you know, years and years of living with chronic pain and having a sleeping disorder. I was also diagnosed with something called Cataplexy. And cataplexy, you guys have probably heard about narcolepsy where, you know, it seems like people are just falling asleep all over the place and it’s a different disorder. Cataplexy goes along with that and what happens is you lose muscle control.
Randy: So here I am a guy, you know, struggling to make his way, recovering from a car accident, suffering with a chronic loss of muscle tone, trying to talk to people, struggling to speak, not being able to see clearly, anxiety going through the roof because of the dysautonomia from the Sjogren’s syndrome and the fear that I was going to black out.
Randy: It was a very, uh, from a mental illness point of view, it was really, really hard on the confidence. And the anxiety was just through the roof, you know. And you’ve got to think that a person that has hope. So guess what, I’ve got a diagnosis now, that means that maybe they’ll find some treatment. Or you know, you’ve told me there was a diagnosis, there must be some sort of treatment, is very different than the person who’s being told on a regular basis. It’s mental illness that they have, even though it’s not the mental illness, but over time you start to believe that as well, too.
Brian: You know, I grew up, we’re about the same age, but it seems that more and more people, especially in the younger generation are a little more talkative about mental illness. And it’s really opened my eyes in the last, I don’t know, 6-7 years and I don’t want to say that it’s more accepted, but I think it’s more understood, these days. But it’s an area I’m not all that familiar with and it intrigues me. I want to know more. So that’s what prompted that question. I appreciate you sharing your personal experience.
Randy: Well, and I’ll share this with you, as well too. And I’ll go back to childhood and being a child that had been hospitalized. That too, with not being able to breathe and having E. coli poisoning. We moved a lot because my dad was with the bank. And honestly, that was, part of the promotion was you went to another branch.
Randy: So we moved from town to town and get different doctors. And the whole thing would start all over. Over and over again. While my mother was trying to get me diagnosed, they’d forget the test had been run someplace else. And the next step is, you know, is it a mental illness?
Randy: And the question becomes, is the parent driving this? Does the parent have a mental illness? Does the child have a mental illness? Now when the kid gets passed age 16, the cuteness starts to wear off. You’re now becoming an adult, 17-18. Now the labels on you, that you have a mental illness because they can’t find an answer. And that’s really difficult.
Randy: Now, you’re trying out every antidepressant that’s out there. That’s what I went through and reacted violently to a lot of them. Trying all the different anxiety medications, trying to get it under control. And to be honest with you, it, uh, it’s very, very difficult and it’s very hard to break out of that, uh, that mold of being diagnosed as being mentally ill. And you know, some people stay in there and some people want to get out of it. But it’s like having a black mark on your file. As soon as they see any sort of mental illness on a medical file, the first question is always, you know, are you sure that this isn’t part of your mental illness?
Randy: I went into see a doctor about two months ago and he’s known me for a while and I came in and he said, you’re talking very quickly. And I said, well, if you talked to anybody who knows me, I do talk quickly. I think very fast. He goes, I think you’re going manic and you need to go see the specialist.
Randy: I said, I’ve talked to him and he said to me, I don’t need to, but here’s his phone number, if you want to give him a call. As soon as they see that, that’s the first thing they always gravitate to. Guess what? There’s been a diagnosis of mental illness. On top of that, there’s unexplained symptoms, they’re unexplained. He seen the top doctors everywhere. If they can’t figure it out. And some of these specialists have also suspected mental illness. That’s the answer. And I still fight that, to be honest with you.
Brian: Yeah. And I can see the how. Are the majority of your doctors older or is it a younger generation coming up through the ranks?
Randy: Well, it’s funny. So the older doctors and the younger doctors, you can still have that same thinking. The specialists on the team I’ve built around me right now, um, to be honest, are nothing like the other doctors I’ve seen. These guys are very well known with the different, uh, areas that they’re covering. Whether it’s dysautonomia or mass cell.
Randy: With Sjogren’s Syndrome, it’s kind of hard. There doesn’t seem to be one specialist who covers all of it. So you know, you find the guys that are good in the ear area or the mouth area or this guy is very good with hormones or this person is very good with skin. There doesn’t seem to be one that knows it all.
New Speaker: But the doctors I have right now, we’re good. But I still have to educate every doctor. And last night I saw a doctor and I had to reeducate him again. About, you know, you’ve known me for years and you fought for me on my side and now you’re saying to me, I’m not trying hard enough, that’s why I’m sick. And not a negative thing. It’s a reinforcement to me. The reason we have to keep educating people is because they forget, right? And it’s a chronic battle.
Randy: That was last night.
Brian: Randy, I spent quite a bit of time on, on your Facebook page and love the new website and did quite a bit of reading. And you’re very well written and I did some learning on your writings, which was very cool. And what inspires you and motivates you to write what it is you’re writing.
Randy: So, I’m gonna give you a multipart answer to it, but I’ll keep it simple. I am a system builder. I’ve always been a person that looks at problems, tries to look outside of what everybody’s thinking and try to find a way to present it to people simply and to have it known. And then have people adopt it. So the Dude with Sjogren’s website is a system, that’s the funny part.
Randy: It’s been designed to use simple language that at a grade seven, grade eight level that people can read through quickly. It delivers a lot of, uh, knowledge quickly, but you don’t need to spend more than about four or five minutes reading an article. Um, I’ve got people across the planet that are now using it to teach English as a second language because they’ve said, you know, this makes much easier to translate into our language.
Randy: I said, well, you know, that’s part of the goal of this was to create something that could be understood quickly and didn’t take a lot of thought or have great big complex terms without a good explanations. But the driving force behind this, as I want to be understood and all the stuff that I’ve gone through, I don’t want other people to have to go through it if they don’t have to. And all the research and time I’ve put into this, you know, I’ll say it this way, for God’s sake, it better be put to good use. I don’t want this to be lost. It’s been a lot of effort put into this.
Brian: I’m reading something on Sjogren’s almost every day and there’s a lot of information out there and some of these studies… daughter sent me some studies that she had access to and I basically said, you need to dumb this down for me. I’ve got no clue what this ism even referring to.
Randy: That’s right,
Brian: And reading your stuff was easy to read, easy to understand. And I felt I took something out of it. So I want to thank you for that.
Lupe: I agree too. I read a few articles and I’m like, okay, I understand all of this. You know, all the words you used. Yeah, it was awesome.
Randy: I was going to say to you, the trick in the evolution of my writing was when I first started, I would try to introduce a couple of ideas and try to keep it simple. Then I realized one idea, one article.
Brian: Yep, that makes perfect sense.
Randy: It needs to be four or five parts. You know what? So be it. If it needs to be, in most cases less than a page. And it needs to be simple to understand, but it needs to lead people asking questions. So even though I’m answering stuff, I’m asking people questions as they read it. And they’re thinking, as they’re going through it, but what does this mean? Oh, there’s another article.
Randy: Yeah. Randy, what advice, if any, do you have for our listeners?
Randy: Well, it’s going to sound funny, but the first one is, to always be open to education. You know, always look to see if you have the most up to date information because it does change it. We need to be open to the fact that yes, we have Sjogren’s and this was the game changer for me, but that doesn’t mean that every symptom I have is Sjogren’s Syndrome,
Randy: And the reason I’m saying that to you is, I went from neurologist to neurologist trying to get answers and I went to different doctors and I was… I would basically say to them, but I have Sjogren’s. They say, oh yeah, you have Sjogren’s, and then they’d send me away.
Randy: The reason that I went back these doctors with a different perspective was, there are other medications used to treat other, uh, symptoms or other diseases that overlap with Sjogren’s Syndrome and we may be preventing ourselves from getting proper treatment because we’re busy telling the doctors that we have Sjogren’s Syndrome, instead of saying, I have Sjogren’s Syndrome, but what else can you do to help me with those symptoms because I’m not getting any help.
Randy: Maybe its secondary. And the big one is people don’t realize that there’s an overlap between diseases. So it’s not just Lupus, it’s not just rheumatoid arthritis. There are a bunch of diseases that have common symptoms to Sjogren’s Syndrome. And like I said, there’s medications that treat them successfully.
Randy: Yeah, that’s great advice. If our listeners want to reach out to you, what is your preferred method of being contacted?
Randy: You know, Facebook is fine. The new website is an excellent venue, as well, too. I mean, I’m still working a full time and running a business so I am kind of limited by time, but I do my best to answer every question. And to be honest, I have so far. You know, I’ve got a lot of people that have reached out to me, but at the same time I get people that ask me questions and they’re not asking me questions. They’re telling the answers and I’m going, what would you like me to do for you?
Speaker 2: You know, I had one person ask me about, the latest criteria and I explained how secondary Sjogren’s, they basically dropped it as a term, which is really confusing how they have Sjogren’s and primary Sjogren’s now. But they got angry because they figured if SSB has gone, my diagnosis is gone. I’m back to the stage. I don’t have a diagnosis.
Randy: And I said, I never told you need to get re-diagnosed. They’ve come up with the new criteria though. You need to be aware of this. I’m not going to get re-diagnosed. I have no interest in it. I have my diagnosis. I think as patients we need to be aware of, when doctors can’t explain symptoms, I’ve been through this as well too, they tend to throw out the diagnosis and try and start again. And when we get new doctors, and this is critical, new doctor will do his best to try and prove the disease again. And I’ve said to several doctors, stopped trying to re-diagnosed me. I have a diagnosis, I have several. I don’t want to be back at the stage where I have no help and no support anymore.
Brian: For the listeners, there will be links to Dude with Sjogren’s Facebook page and the website in the show notes below, that you’ll be able to find. And, do you have any parting words you’d like to leave with us?
Randy: Just very, very simple, stay hydrated.
Lupe: That’s what I always say. Sip constantly and stay hydrated. Yes.
Randy: Well, and you know, it’s funny, I mean the biggest struggle for me is reading these articles over and over again just about dry mouth and dry eyes, but to be really honest, people don’t drink enough water and drinking coffee and tea actually make you drier than substituting it for water. We got to drink of water.
Lupe: Yeah. Sometimes when it’s cold, you feel like, I don’t need it, you know. But you always need it, but it’s just cold, you don’t want to drink water.
Lupe: Yeah. Yeah.
Randy: I was just thinking about, uh, you know, for a lot of the people that are out there as well too, you know, they may not have Sjogren’s. But uh, for me the longest time was I knew that I had a possible answer and I held onto that, until I got the next answer. But I did get my diagnosis of Sjogren’s. But you know, if we figured that a diagnosis takes ah, you know, used to take about 10 years and seeing multiple doctors, that means that some of them are going to get it wrong.
Lupe: Exactly. Because you go to a different doctor for a different symptom.
Lupe: And they never put it together.
Randy: No, because it’s across multiple practices and even the family doctor in most cases, once he’s read the specialist report, he’s not going to try and compare them against each other because they’re different practices.
Lupe: Yeah, correct.
Brian: Well, Randy, we appreciate you coming on the show and for helping to shine a light on Sjogren’s. We really appreciate your time
Randy: And thank you. It was a lot of fun.
Lupe: I want to highlight two takeaways from Randy. The first being not everything you feel or experience is Sjogren’s related and you need to be your biggest advocate ensuring your doctors don’t lump all your complaints under Sjogren’s. As the diagnoses process improves, we are learning that anyone can have Sjogren’s, men, women, and children. Read the latest materials. Be in tune with your own body and speak openly and honestly with your doctors too.
Lupe: Till next time, SIP CONSTANTLY AND STAY HYDRATED.
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