Are drug intolerances particularly common in people with Sjogrens?

Hi Tumtum1963, 

In relation to your drug sensitivity, I know for a fact that I am super sensitive to any medication since my diagnosis with Sjogrens Syndrome. 

Since finding out that I had Sjogrens Syndrome I can't handle any antibiotics, anti-virals, antiinflammatories, or strong pain medication. I have ended up in A&E a couple of times straight after ingesting medication as i suffer severe abdominal/gastro upset. 

Any time I have to take antibiotics or anti-virals i panic as I am miserable for weeks after with stomach/bowel issues. 

I didn't think about the correlation between SS and drug sensitivity but after reading your post I can see how they would link. I have read a lot about gut health and how that can directly influence autoimmune diseases and drug tolerance. 

Hi Tumtum

Either you or someone else posed the question/belief recently that drug intolerance is due to SS. I doubt that our lack of scientific knowledge and willingness to ignore the distinction between causality and coincidence has changed since then, lol.

As to the lymphoma link, it is publicized in the States by the Sjogren's Syndrome Foundation which is linked to Johns Hopkins, so I can't help thinking it's a real possibility. One would have to check with them or the UK SS group for percentages and whether there's a difference for primary or secondary.

All the meds you mention are heavy duty stuff. Here in the States it is always worth noting that drug testing on women is a recent thing

I have SS. Only confirmed last year. I have read articles published recently that support your belief that we are in fact, overly sensitive or highly sensitive, to medications. We also have a keen sense of smell. I can take a Tylenol and sleep 4 hours. I also have a probelm with perfumes, strong scents and I avoid all chemicals or pesticides. I have done that for years. I don't think a cause to our sensitivity was stated but if I find the article I will copy the info and link.

I am very conservative with my meds. I take Fludrocortisone for bp, topical steroid cream for skin issues, Synthroid, Nexium, Lexapro and Klonopin. The latter really help with anxiety and neuropathy. I would have to be very bad to try Gabapenten or other drugs in that class. I do agree that polypharmacy is a nightmare. I am on oxygen. That helps.

I have wondered about immunosuppressants and Lymphoma. It's almost like the devil you know vs. the devil you don't. I may have to change my mind as my condition worsens. I will keep in touch. Good exchange of information.

Thanks all who responded to my post about drug imtolleremces with Sjögren's. I think I posted this about four or five months ago. Since this time I agreed to try Mycophenolate/ Cellcept in the hope that it will bring my wayward immune system back on track.

I cannot really say if it is or is not working because I'm in the midst of a major relocation and setting up a new business so, inevitably, I'm flaring quite a lot. But the main thing so far is that tolerating it extremely well - bloods all good and no side effects at all.

I am less concerned now about the possibility of Lymphoma for myself, because I'm told being seronegative (i.e lip biopsy positive) makes me less vulnerable than those who are SSA or SSB positive - although there's still a risk of course.

But I have also learned that those of us with seronegative Sjögren's are more likely to suffer from neurological symptoms and Vasculitis so its swings and roundabouts. I have lots of toothache pain in my legs and arms and recently confirmed arthritis in my jaw as well as neck, hips, lumbar discs and probably in my knees. The neuropathic pain is flaring a lot in my legs and my arms feel very weak - despite nerve conduction studies being fine. I have very active sicca too in mouth, nose and eyes - not helped by high dust levels in new house - unpacking etc.

I am also trying heat pads and massage for Meibonian Gland Disease, taking Ranitidine twice a day for reflux (longstanding sour taste has all but gone) and trying to rest up and drink a lot of water or herbal tea All through the day.

My next health related project, once things are more settled, is to try the AI protocol diet and hopefully lose some weight in the process too. Nothing to lose by trying this out but o have to wait until I'm living in one place properly - frlom about six weeks time. I also plan to start attending a good Pilates class.