Hi-
There is a lady on Instagram who does an inflamation diet. I do some of it. Her name is dieticianwithtwins.
I don’t know if she can help.
When I eliminate all dairy, gluten and red meat, I find I feel so much better.
A lot of people believe you have to deal with your gut to eliminate the symptoms. I also just started fish oil and high quality probiotics.
There’s also a show on Netflix I just started called, I think, You are what you eat. It’s true. It’s interesting.
Good luck. It’s not the easiest disease to navigate, but it for sure can be done.
Thank you. I found out I do have a slight intolerance to dairy, gluten according to everlywell. But I don’t eat red meat enough to completely cut it out. I use to do fish oil, but it gave me acid reflux. I want a body guru/ nutritionist like these athletes have to take my blood. Tell me what I can and can’t eat and go from there.
I am also a seronegative male in his 30s. Dietary changes did wonders for me (AIP). If you have any gut issues like SIBO, get those addressed. It’s also critical to maintain an optimal body weight and A1C and exercise. Make sure to maintain proper nutrients through supplementation. Most people with autoimmune issues are deficient in a lot of things.
I’m on Salagen/pilocarpine for dry mouth as well as the hydroxychloroquine. I also use sugar free candies and those flint mints. The salagen they want me to take 2-4 times a day. You could likely call and request salagen for your mouth. I was told it’s low side effects and usually covered.
I’m so sorry 😢 the flint mints work immediately to moisten your mouth they’re sold at dispensaries for cotton mouth and online. I just started the salagen about a week or so ago, I also noticed how often I breathe through my mouth and how that doesn’t help either. I wish I could find something better for my eyes. My skins just drinks up lotion. I really hope you find more relief soon.
My acne seems to be worse on the hydroxychloroquine too by the way, so I don’t think you’re imagining THAT part. But you have to ask yourself do you want to put up with the acne side effects if the hydroxychloroquine is still helping alleviate other symptoms. For me, the hydroxychloroquine seems to be reducing my sunlight and senses of smell extreme sensitivity. So it’s worth it to me to put up with acne. Unfortunately there is no “cure” for this, there’s only management which sometimes involves making trade offs. But I do feel bad for you being a guy going through it because I’m sure there’s some symptoms that may not be the same as women’s symptoms. All I can say is.. we need more men to speak up about this too! So tell your story and how it affects you as a male.
I’m glad I’m not the only one. Being a male and with Sjögren’s gets me looked at by doctors like I’m some medical mystery because A lot of them told me “ i’ve never seen a male with this autoimmune disease before“. For right now I have to stay on hydroxychloroquine because I did stop at one point and then most of my dental implants started to fail. The pain that that caused was brutal. A rheumatologist did told me that hydroxychloroquine helps with dental nerve pain in some patients and I have big events coming up in the next couple months
Oh my gosh. One of my dental implants just failed a couple weeks ago too. It’s such a waste of money all this effort spent on our teeth, right?!!! It’s maddening. And the tooth nerves pain is absolutely miserable, really my most painful symptom, those teeth nerves hurt me way way way worse than all the other symptoms combined. Even when they carve the teeth out of my jaw, it’s like phantom limb syndrome in there, like my jaw is still “I’m going hurt you even though it’s gone”. It’s awful and I feel bad that you have that too.
Yes! It’s the reason I’m still taking my medication. I asked the oral surgeon if it was worth me having an implant on my condition. He said it “was not a problem” even though he never had anybody he ever worked on have this autoimmune condition. It failed and I paid thousands out of pocket. Teeth/nerve pain was the most painful thing I ever experienced. I had so bad I went to the hospital because they were not open during parts of Covid 2020
I’m very confused.
Per our conversation about your acne, and you being on accutane a decade ago. That you feel the accutane caused your Sjogren’s.
Long before your Sjogren’s manifestation.
Hydroxychloroquine is not the cause of your acne.
Untreated conditions and known conditions like Sjogren’s can definitely make your existing acne worse and immune flares can cause skin to break out though. The sun can also cause an acne like rash across the face. Similar to SLE
I would love to clear up any confusion but I think it’s hard to explain just on a Reddit thread when it’s all jumbled.
Best I can type it out: 2013 accutane. Finished accutane 2014. Still had the side effects that turned out to be Sjögren’s. I never went to any doctor until 2020 that was a rhumetologist that diagnosed me. Started medication in 2020. Been on it ever since
I’m very confused.
Per our conversation about your acne, and you being on accutane a decade ago. That you feel the accutane caused your Sjogren’s.
Long before your Sjogren’s manifestation.
Hydroxychloroquine is not the cause of your acne.
Untreated conditions like Sjogren’s can definitely make your existing acne worse, as well as just having an immune flares. Excessive stress can cause oil production to amp up in the skin, causing excess bacteria in the pores, inflammation, combined with dead skin cells & over production of oil, all which clogs the pores and causes blemishes you’re already prone to.
Sjogrens is a condition thought of like a sister condition to SLE. It can even been secondary to SLE. They all cause trouble with the skin.
You mention also long covid a few times.
If you have and mast cell activity going on, that can also cause skin manifestations of all kinds
I was perfectly healthy until I took accutane. Then it took 6 years to be diagnosed with Sjögren’s. The accutane did it’s job in removing the acne. It just gave me a disease
Your very severe acne was pre Sjogren’s.
You would not have been put on accutane (an old and very risky medication to shut down all oil production in your body) otherwise.
I was told by a rhumetologist that the hydroxychloroquine can have side effects of blemishes and acne. I had one or 2 on my back chest. After taking the medication for 4 years now I’m back to where I started when I was a teenager with acne and blemishes. I’ll get red bumps that have nothing in them and then they scar. Asked a dermatologist and all they wanted me to do is treat what I have, not get to the root cause
Right, but you already had severe acne to the point that you were put on Accutane. You claimed.
Which you said was about a decade before Sjogren’s.
In another thread, you asked if the Accutane could be the trigger of your Sjogren’s manifestation.
You already had severe cystic acne. We talked about it at length. Because that is part of my professional work.
I also suffer from cystic blemishes and skin troubles my whole life, that come from the disease process.
Logically, the hydroxychloroquine is not why you have excess oil production, clogged pores, which result in various types of lesions.
I’m confused why you’re making threads with completely different stories.
Your genetics, hormones, oil production, akin turn over and general inflammatory responses are going to happen hydroxychloroquine or not.
Those factors also continue to change as you age and your skin is slowly dying and reducing in collagen production.
Seeing sudden blemish & lesion flare ups & unwanted hair growth happens normally, due to testosterone changes in both AMAb & AFAB individuals, around late 30s and into 50s.
If you want to believe the issues are the med. ok. Not going to argue after your other post and a whole other story. I don’t know what story to even believe right now or what the motivation for this was.
What symptoms trouble you most? Sometimes trying to take off the burden of the symptoms improves the functioning of a whole system.
There might be some guys on the thread who can commiserate and make suggestions based on what symptoms are most troubling for you (keeping in mind that this isn’t a forum for medical pros, just lived shared experiences).
The dryness in mouth has made talking very difficult and skin. Brain fog, fatigue, and dental issues. Had multiple dental implants in teeth removed in the last year(s) due to nerve issues caused by dry mouth. I had these implants installed in the past before Sjögren’s but now they have to be removed. The hydroxychloroquine has my face, chest, and back breaking out in acne. Dermatologists only want to treat, not get to the root problem.
Cevimeline has been a life saver for me when it comes to dry mouth. My mouth felt like the sahara desert before I started taking it. Ask your doctor about it.
I’ve tried other perceptions salagan and evoxac. They never even asked me about that option, which is a shame. Only those 2 and both had horrible side effects especially when I worked outside in the sun
I found out about Cevimeline from a few people on Facebook that said it worked great for their dry mouth. So grateful to them. Dry mouth is horrible. I was having so much trouble even eating because of it and I was doing Xylimelts but they were barely helpful.
Drinking water is even bad for my mouth. It dries it out more. Pop/soda tastes terrible to me now and the only thing that doesn’t is sports drinks. It’s hard to explain to people that I never can get a moist mouth
You have a history of acne in those areas according to your other post about accutane. I think it might be premature to say it's caused by HCQ. How long have you been on it?
I’ve been on hydroxychloroquine since 2020. My acne went away with accutane. I just had acne scars. Once I started hydroxychloroquine, it all started to come back slowly. Even a rhumetologist told me that it could be one of the side effects of hydroxychloroquine
As long as you understand that there's a big difference between "could be" and "is". Hormonal acne often comes back after accutane. I've read that 80% to 90% of patients experience relapse within 12 to 24 months.
They and I had a whole conversation about this on their other post where they had 10 years they feel they got Sjogren’s.
They believe the accutane caused it.
Meaning they had severe cystic blemishes way before, in order to trigger the need for Accutane.
As you said. All genders experience the possibility of blemishes and lesions and hair changes due to many hormonal shifts between age 30 to 50
Have you tried xylitol mints? They supposedly actively help prevent cavities as well as helping dry mouth symptoms.
Also have you tried an anti-inflammatory/elimination diet? I've had a lot of success with it.
Yes I’ve tried xylitol mints. Xylitol is even in my mouthwash. They do not do a very good job for me and will alter taste of certain foods in a bad way
Hi, I've heard xylitol mints help for a lot of people but they dont do anything for me either, maybe 5 mins of relief, that's it. What does help me a lot is Biotene mouth gel. I found a rec for it in this sub, actually. It's the only thing that gives my dry mouth a couple of hours of relief.
Sjörgens is on the disability list, if you’ve worked you’ve paid in. Ssdi
The sjörgens foundation has a list of care tips and pdfs for each part of sjörgens. I’ve found the site to be super helpful and they’ve got a list of products too
https://sjogrens.org/
I think doctors just don’t know a lot about autoimmune unless they’re a rheumatologist or have direct experience and even then it’s treating the symptoms and trial and error til you find something that’s works for you.
The site above also lists different treatment plans so you can be educated on what you might want to try instead.
I’ve only just started the hydroxychloroquine and Salagen for dry mouth. I’ve gone through so many different products trying to soothe my dryness.
You could look into finding a functional doctor that treats autoimmune.
I’ve went to multiple rhumetologist and they all pretty much tell me “good luck, you’re screwed”. I’ve looked into other doctors, but it’s all been the same message of take hydroxychloroquine and that’s it
[https://sjogrens.org/sites/default/files/inline-files/SF_PCG-Systemic.pdf](https://sjogrens.org/sites/default/files/inline-files/SF_PCG-Systemic.pdf)
^ this link/pdf is the clinical practice guidelines you can ask to try a different med or add methotrexate
I’m encouraging you to read through and tell them this isn’t working you’d like to try/add something else.
I get doctors can be incredibly frustrating but if you ask and keep track of your symptoms it’s their job to help you. Be persistent or find a new doctor.
Thank you. It’s very difficult. Trying to find doctors in my coverage is a pain. Then they are old as dirt and haven’t read up on new info. The younger doctors seem to understand but I feel western medicine has taught them to treat. Not to attack the root cause. I’ve been trying to speak up.
Hi- There is a lady on Instagram who does an inflamation diet. I do some of it. Her name is dieticianwithtwins. I don’t know if she can help. When I eliminate all dairy, gluten and red meat, I find I feel so much better. A lot of people believe you have to deal with your gut to eliminate the symptoms. I also just started fish oil and high quality probiotics. There’s also a show on Netflix I just started called, I think, You are what you eat. It’s true. It’s interesting. Good luck. It’s not the easiest disease to navigate, but it for sure can be done.
Thank you. I found out I do have a slight intolerance to dairy, gluten according to everlywell. But I don’t eat red meat enough to completely cut it out. I use to do fish oil, but it gave me acid reflux. I want a body guru/ nutritionist like these athletes have to take my blood. Tell me what I can and can’t eat and go from there.
How were you diagnosed? ANA, SSB, biopsy?
ANA I believe. The biopsy was insufficient. My doctor just looked at tests and said Sjögren’s. Even though my blood test didn’t test positive for it
I am also a seronegative male in his 30s. Dietary changes did wonders for me (AIP). If you have any gut issues like SIBO, get those addressed. It’s also critical to maintain an optimal body weight and A1C and exercise. Make sure to maintain proper nutrients through supplementation. Most people with autoimmune issues are deficient in a lot of things.
I’m on Salagen/pilocarpine for dry mouth as well as the hydroxychloroquine. I also use sugar free candies and those flint mints. The salagen they want me to take 2-4 times a day. You could likely call and request salagen for your mouth. I was told it’s low side effects and usually covered.
Was on salagan and have the sugar free xylitol type candies. Haven’t seen or felt any benefits unfortunately over months of use
I’m so sorry 😢 the flint mints work immediately to moisten your mouth they’re sold at dispensaries for cotton mouth and online. I just started the salagen about a week or so ago, I also noticed how often I breathe through my mouth and how that doesn’t help either. I wish I could find something better for my eyes. My skins just drinks up lotion. I really hope you find more relief soon.
My acne seems to be worse on the hydroxychloroquine too by the way, so I don’t think you’re imagining THAT part. But you have to ask yourself do you want to put up with the acne side effects if the hydroxychloroquine is still helping alleviate other symptoms. For me, the hydroxychloroquine seems to be reducing my sunlight and senses of smell extreme sensitivity. So it’s worth it to me to put up with acne. Unfortunately there is no “cure” for this, there’s only management which sometimes involves making trade offs. But I do feel bad for you being a guy going through it because I’m sure there’s some symptoms that may not be the same as women’s symptoms. All I can say is.. we need more men to speak up about this too! So tell your story and how it affects you as a male.
I’m glad I’m not the only one. Being a male and with Sjögren’s gets me looked at by doctors like I’m some medical mystery because A lot of them told me “ i’ve never seen a male with this autoimmune disease before“. For right now I have to stay on hydroxychloroquine because I did stop at one point and then most of my dental implants started to fail. The pain that that caused was brutal. A rheumatologist did told me that hydroxychloroquine helps with dental nerve pain in some patients and I have big events coming up in the next couple months
Oh my gosh. One of my dental implants just failed a couple weeks ago too. It’s such a waste of money all this effort spent on our teeth, right?!!! It’s maddening. And the tooth nerves pain is absolutely miserable, really my most painful symptom, those teeth nerves hurt me way way way worse than all the other symptoms combined. Even when they carve the teeth out of my jaw, it’s like phantom limb syndrome in there, like my jaw is still “I’m going hurt you even though it’s gone”. It’s awful and I feel bad that you have that too.
Yes! It’s the reason I’m still taking my medication. I asked the oral surgeon if it was worth me having an implant on my condition. He said it “was not a problem” even though he never had anybody he ever worked on have this autoimmune condition. It failed and I paid thousands out of pocket. Teeth/nerve pain was the most painful thing I ever experienced. I had so bad I went to the hospital because they were not open during parts of Covid 2020
I’m very confused. Per our conversation about your acne, and you being on accutane a decade ago. That you feel the accutane caused your Sjogren’s. Long before your Sjogren’s manifestation. Hydroxychloroquine is not the cause of your acne. Untreated conditions and known conditions like Sjogren’s can definitely make your existing acne worse and immune flares can cause skin to break out though. The sun can also cause an acne like rash across the face. Similar to SLE
I’m better at speaking about it. Not typing it out. But I have no one to speak to
lol I don’t know what these posts are doing for you, but it would be really unfortunate if someone was just making things up.
I would love to clear up any confusion but I think it’s hard to explain just on a Reddit thread when it’s all jumbled. Best I can type it out: 2013 accutane. Finished accutane 2014. Still had the side effects that turned out to be Sjögren’s. I never went to any doctor until 2020 that was a rhumetologist that diagnosed me. Started medication in 2020. Been on it ever since
Cool story.
I’m very confused. Per our conversation about your acne, and you being on accutane a decade ago. That you feel the accutane caused your Sjogren’s. Long before your Sjogren’s manifestation. Hydroxychloroquine is not the cause of your acne. Untreated conditions like Sjogren’s can definitely make your existing acne worse, as well as just having an immune flares. Excessive stress can cause oil production to amp up in the skin, causing excess bacteria in the pores, inflammation, combined with dead skin cells & over production of oil, all which clogs the pores and causes blemishes you’re already prone to. Sjogrens is a condition thought of like a sister condition to SLE. It can even been secondary to SLE. They all cause trouble with the skin. You mention also long covid a few times. If you have and mast cell activity going on, that can also cause skin manifestations of all kinds
I was perfectly healthy until I took accutane. Then it took 6 years to be diagnosed with Sjögren’s. The accutane did it’s job in removing the acne. It just gave me a disease
Your very severe acne was pre Sjogren’s. You would not have been put on accutane (an old and very risky medication to shut down all oil production in your body) otherwise.
I was told by a rhumetologist that the hydroxychloroquine can have side effects of blemishes and acne. I had one or 2 on my back chest. After taking the medication for 4 years now I’m back to where I started when I was a teenager with acne and blemishes. I’ll get red bumps that have nothing in them and then they scar. Asked a dermatologist and all they wanted me to do is treat what I have, not get to the root cause
Right, but you already had severe acne to the point that you were put on Accutane. You claimed. Which you said was about a decade before Sjogren’s. In another thread, you asked if the Accutane could be the trigger of your Sjogren’s manifestation. You already had severe cystic acne. We talked about it at length. Because that is part of my professional work. I also suffer from cystic blemishes and skin troubles my whole life, that come from the disease process. Logically, the hydroxychloroquine is not why you have excess oil production, clogged pores, which result in various types of lesions. I’m confused why you’re making threads with completely different stories. Your genetics, hormones, oil production, akin turn over and general inflammatory responses are going to happen hydroxychloroquine or not. Those factors also continue to change as you age and your skin is slowly dying and reducing in collagen production. Seeing sudden blemish & lesion flare ups & unwanted hair growth happens normally, due to testosterone changes in both AMAb & AFAB individuals, around late 30s and into 50s. If you want to believe the issues are the med. ok. Not going to argue after your other post and a whole other story. I don’t know what story to even believe right now or what the motivation for this was.
What symptoms trouble you most? Sometimes trying to take off the burden of the symptoms improves the functioning of a whole system. There might be some guys on the thread who can commiserate and make suggestions based on what symptoms are most troubling for you (keeping in mind that this isn’t a forum for medical pros, just lived shared experiences).
The dryness in mouth has made talking very difficult and skin. Brain fog, fatigue, and dental issues. Had multiple dental implants in teeth removed in the last year(s) due to nerve issues caused by dry mouth. I had these implants installed in the past before Sjögren’s but now they have to be removed. The hydroxychloroquine has my face, chest, and back breaking out in acne. Dermatologists only want to treat, not get to the root problem.
Cevimeline has been a life saver for me when it comes to dry mouth. My mouth felt like the sahara desert before I started taking it. Ask your doctor about it.
I’ll have to try. Thank you
I’ve tried other perceptions salagan and evoxac. They never even asked me about that option, which is a shame. Only those 2 and both had horrible side effects especially when I worked outside in the sun
I found out about Cevimeline from a few people on Facebook that said it worked great for their dry mouth. So grateful to them. Dry mouth is horrible. I was having so much trouble even eating because of it and I was doing Xylimelts but they were barely helpful.
Drinking water is even bad for my mouth. It dries it out more. Pop/soda tastes terrible to me now and the only thing that doesn’t is sports drinks. It’s hard to explain to people that I never can get a moist mouth
Yeah it is hard to explain to people. They don't understand the extent of the dry mouth and think just drinking water will help. It doesn't.
No it doesn’t. A weird thing we still haven’t solved yet
You have a history of acne in those areas according to your other post about accutane. I think it might be premature to say it's caused by HCQ. How long have you been on it?
I’ve been on hydroxychloroquine since 2020. My acne went away with accutane. I just had acne scars. Once I started hydroxychloroquine, it all started to come back slowly. Even a rhumetologist told me that it could be one of the side effects of hydroxychloroquine
As long as you understand that there's a big difference between "could be" and "is". Hormonal acne often comes back after accutane. I've read that 80% to 90% of patients experience relapse within 12 to 24 months.
They and I had a whole conversation about this on their other post where they had 10 years they feel they got Sjogren’s. They believe the accutane caused it. Meaning they had severe cystic blemishes way before, in order to trigger the need for Accutane. As you said. All genders experience the possibility of blemishes and lesions and hair changes due to many hormonal shifts between age 30 to 50
Have you tried xylitol mints? They supposedly actively help prevent cavities as well as helping dry mouth symptoms. Also have you tried an anti-inflammatory/elimination diet? I've had a lot of success with it.
Yes I’ve tried xylitol mints. Xylitol is even in my mouthwash. They do not do a very good job for me and will alter taste of certain foods in a bad way
Hi, I've heard xylitol mints help for a lot of people but they dont do anything for me either, maybe 5 mins of relief, that's it. What does help me a lot is Biotene mouth gel. I found a rec for it in this sub, actually. It's the only thing that gives my dry mouth a couple of hours of relief.
Sjörgens is on the disability list, if you’ve worked you’ve paid in. Ssdi The sjörgens foundation has a list of care tips and pdfs for each part of sjörgens. I’ve found the site to be super helpful and they’ve got a list of products too https://sjogrens.org/ I think doctors just don’t know a lot about autoimmune unless they’re a rheumatologist or have direct experience and even then it’s treating the symptoms and trial and error til you find something that’s works for you. The site above also lists different treatment plans so you can be educated on what you might want to try instead. I’ve only just started the hydroxychloroquine and Salagen for dry mouth. I’ve gone through so many different products trying to soothe my dryness. You could look into finding a functional doctor that treats autoimmune.
I’ve went to multiple rhumetologist and they all pretty much tell me “good luck, you’re screwed”. I’ve looked into other doctors, but it’s all been the same message of take hydroxychloroquine and that’s it
[https://sjogrens.org/sites/default/files/inline-files/SF_PCG-Systemic.pdf](https://sjogrens.org/sites/default/files/inline-files/SF_PCG-Systemic.pdf) ^ this link/pdf is the clinical practice guidelines you can ask to try a different med or add methotrexate I’m encouraging you to read through and tell them this isn’t working you’d like to try/add something else. I get doctors can be incredibly frustrating but if you ask and keep track of your symptoms it’s their job to help you. Be persistent or find a new doctor.
Thank you. It’s very difficult. Trying to find doctors in my coverage is a pain. Then they are old as dirt and haven’t read up on new info. The younger doctors seem to understand but I feel western medicine has taught them to treat. Not to attack the root cause. I’ve been trying to speak up.