Are drug intolerances particularly common in people with Sjogrens?
Posted , 11 users are following.
Having been misdiagnosed and treated for seronegative RA six years ago, I was rediagnosed with primary Sjogrens two months ago by +ANA and lip biopsy.
I'm seeing my new rheum at the end of this month and am under a neurologist too for small fibre neuropathy and Ganglionopathy as part of my SS.
Because of the RA I was put into Sulfasalazine then Methotrexate with Hydroxichloraquine followed by Azathioprine with courses of Prednisolone in between. I had pretty serious side effects with these and other drugs and these have given me a fear of all medications.
My sense is that these allergic reactions, including anaphylaxis and pancreatitis - are because I do not have enough moisture in my body to flush away the toxins from imunesuppressant medications and other drugs I've tried.
Does anyone know if my hunch has been researched and validated ever? If so is this one of the reasons that Sjogrens appears to be taken less seriously by rheumatologists and GPs than other rheumatic diseases are? Or have I just been very unlucky perhaps?
Also is it the case that immunesuppressants increase the risk of us developing non Hodgkin's Lymphoma or is this just speculative? I'm somewhat confused because with RA the emphasis was on remaining in these medications to slow down the disease and hopefully minimise the risk of erosion of synovial joints.
So can anyone explain to me why is it not thought as urgent or even possible to prevent or minimise the progress of Sjogrens related neuropathy -which in my case has led to issues with my balance/ equilibrium, because my nerves have died and cannot now be regenerated?
2 likes, 46 replies
morelia100 Tumtum1963
Posted
There is much information about the fact that autoimmune diseases primarily affect women. And yes, it is partially related to hormones -- because females naturallly have higher levels of estrogen then men. When we are exposed to environmental toxins (many of which simulate female hormones) -- it can cause our hormone levels to become unbalanced contributing to the autoimmune problems. Unfortunately, there is no single cause that has been identified, but there are multiple contributing factors. These include, exposure to toxins (all chemicals & pollutants, possibly tooth fillings containing mercury), amount of sleep, stress, diet, meditation. There has also been shown that there is a genetic link, showing that each new generation shows symptoms of autoimmune disease earlier and earlier. I have seen this in my own family with one member having fibromyalgia, one has IBS, one has Myasthenia Gravis, one has Vitiligo, asthma and Raynaud's phenomenon. Those of us who have made changes in our diet, even if we didn't do much else, have shown great improvment after about 6 months to a year. It's been amazing. I personally, also slowly got rid of chemicals in my home and tried to reduce exposure to pollutants. I did have my old tooth fillings replaced. I try to control stress. Try to get enough sleep--not too much -- and same with exercise. The best help I have found to date, besides finding great books on Paleo and autoimmune diseases, was the help I found through a qualified naturopath. I cannot stress enough, how helpful my naturopath was in believing me, understanding me, completely knowledgable and throrough with testing and treatment. I highly recommend fiding a naturopath if you can. The Rhematologist that I saw and my other traditional doctors recommended treating the symptoms with medications, but did not seem to understand the root cause. I didn't want a band-aid -- I wanted to get better. Although I think that the research on the Vagus nerve procedure sounds interesting and exciting that they have had some success -- I would still prefer to heal myself through natural means rather than have a device implanted or have to carry it around. Besides, the Vagus nerve procedure has been shown to work "only" with the symptom of "inflammation" (as related to autoimmune disorders). The root cause for us people with autoimmune system is that our autoimmune system is attacking our own bodies -- and sometimes these means inflammation, but it can also mean a whole other set of problems -- such as dry mouth, tinitus, psoriasis, anemia, etc. I think if our bodies get to a point where the symptoms are much more serious, then you may be left without a choice and be forced to use meds. But there is no reason that you can't make other changes while you are on the meds too. I hope we all can find the answers we are seeking, but I don't foresee a single blanket cure for this problem. I think that autoimmune disease can be as varied as the symptoms we all have. Best of luck to all.
Tumtum1963 morelia100
Posted
Tumtum1963
Posted
Ps would you recommend having fillings replaced even though I'm told my teeth and gums look on good shape? My SS was diagnosed by lip biopsy so I've assume that the neuropathy in my lips and gums relates to SS - but maybe my SS has come from having 7 old fillings?
morelia100 Tumtum1963
Posted
I doubt that fillings alone will cause the disease, but there is a chance they could contribute to it. If you have fillings that contain mercury and you are able to have them removed by an dentist who is experienced in how to remove thoses type of fillings as safely as possible, then I can't see the harm in it. I tried to heal myself at every angle I possibly could, which is why I had mine removed even though I am not sure if it has made a difference. But if you should choose to do this, make sure the person you see knows how to do this safely (there should be some sort of mechanism to keep airborne mercury partricles away from people as much as possible.) Also, you will want to follow up the procedure with some sort of metal chelation -- under a professional's guidance. It is inevitable that if you have the fillings removed, some mercury will escape into the air, possibly into your body -- so you want to drink lots of healthy fluids that day and the day after to help remove the possible metals from your body. I drank something with charcoal in it, I also drank some aloe water, and coconut water -- and flushed with lots of water during the day. It's been a while so I don't recall exactly. However, if you go to a natural supplement store, they should be able to guide you in how to flush your body out when you are trying to get rid of possible heavy metals you ingested. It is very important to cleanse your body because the heavy metals will take a heavy toll on your liver as your liver tries to clean it out. You must be careful when doing something like this, so please do look up information and/or find a professional to help guide you.
Tumtum1963 morelia100
Posted
Thanks Morelia. I don't think my dentist would be up to it as he's very young and anyway it would cost too much as I'm in Scotland so no private health insurance. Ironically this was how I was finally diagnosed as I went to see him in astatecabout my burning mouth - having tried every other avenue including food eliminations galore etc. I asked if it could be a very neurological SS rather than or as well as RA - or whether it might be mercury intolerance? He said he was out of his depth so referred me to the university dental hospital nearby. By the time I saw the oral consultant my ANA had suddenly turned very positive with a nucleolar pattern and my IgG too. Inflammation markers always very high. So the very positive lip biopsy was requested by rheumatologist as well and all mention of mercury fillings went by the by. I don't know if I will see oral consultant again until summer of next year though but will ask. The reason I wondered is because, as a kid when my teeth were first filled (I had very poor teeth despite very little sugar in my diet) my hair dropped out entirely -and my eczema raged everywhere, especially around my lips and eyes. Hard to know now whether this is significant to my RA/pSjogrens now but I sense it is. I think I've had autoimmunity since I was a baby though so fillings maybe a consequence rather than other way around. Like you I try to think things through very hard and self manage. I've been quite successful at this with my hypothyroidism so feel I'll get there no I know I have SS as my main disease.
ihavenonickname Tumtum1963
Posted
Hi Tumtum,
I recommend you look up the Sjogren's Syndrome Foundation online.
Having Sjogren's is not a nice cut and dry diagnosis. That said, if you visit the foundation's website, you will find great explanations and support to live well despite dealing with Sjogren's...I have.
kind regards
judith
morelia100 ihavenonickname
Posted
I just visited the Sjogren's Syndrome Foundation online website. I read through some of the pages and can tell that it is definitely medical based, meaning that their view seen to be to treat the symptoms only. I looked at the diet recommendations and they seem to be aimed at helping you eat the same foods, but using different methods to make it easier despite dry mouth. This is fine if you want to continue dealing with your symptoms. If you actually want to heal yourself, then I would not use this website. I would search online using words like "paleo," or "healing," "autoimmune," through "foods or diet", or something like that. There are so many people getting better. There really is hope. It's just not going to be in the form of a pill. Wish it were that easy.
aitarg35939 morelia100
Posted
Every time I hear "paleo diet", I hear all my anthropologist & archaeologist friends chuckling, "yeah it's a great diet ,,, if you only want to live 35 years", tee hee tee hee.,
morelia100 aitarg35939
Posted
Yes, I know, I thought it sounded ridiculous when I first heard about it. But I suppose it is a simple way of just saying stay away from wheat, dairy, sugar, corn and soy. Eat lots of veggies, fruit, and eat fish, meat, healthy fats (nuts, coconut oil, avocados, sardines). Everything in moderation. Avoid processed foods. Whew...and that's not an extensive list. So much easier to say paleo. I think it's good as a guideline and then you tailor it to fit your specific needs. Wish it had a better name, like "Healing diet." But it is what it is.
Tumtum1963 morelia100
Posted
The thing is, that many people I know with AI diseases do this anyway. So symptoms continue despite us being vegan or Paleo or whatever suits. I have a great deal of (healthy) scepticism about both perspectives, functional and evidence based/ medical. I think the only way is to follow your own way with drugs, lifestyle and diet. I think it's wrong to work on the premise that total strangers on forums don't already eat a very healthy, well-thought out diet. It is my experience that specific diets work wel, for some but aren't enough for others. I guess what I'm saying is that I think the main thing is to keep an open mind and remember that one rule rarely fits all.
Tumtum1963 ihavenonickname
Posted
morelia100 Tumtum1963
Posted
I agree that an open mind should be maintained. I sure hope that I am not coming across like I think no one is eating a good diet -- but I do know what has worked for me. And so I share what has helped me the most. I have no problem with Traditional doctors for check-ups and if I need a prescription. But understanding my AI disease -- no way. Not one of the doctors I saw was helpful. Only my naturopath was -- and that was my own experience. When I first joined this forum, I knew nothing about diets or lifestyle changes that could be made and could possibly help. I felt completely hopeless. I am forever grateful that another member talked about diets and lifestyle changes so I could then look it up. It was awesome. By the way, your hair falling out and eczema as a child -- very, very possible you had AI since young. I don't doubt that exposure to Mercury may have contributed to your illness. So sorry about that. And about the burning in your moth --although -- I'm pretty sure you have already considered this, have you checked your toothpaste? That was something I had to change. For months, I couldn't figure out why the insides of my cheek were so sensitive and then I finally figured out it was the toothpaste that I had used for years. Now I use all natural (without Flouride) and I have no problems. The environment and the pollutants in the air and water are other things to consider so they can be avoided where possible. For example, we have been living in extremely polluted cities for the past few years (in Asia), and I have done my research on cleaning air and try to minimize my exposure knowing that this could have a negative impact on my AI disease. It's not possible to live a 100% clean life -- not in these modern times, but information is power and I like feeling like I can do something.
ihavenonickname morelia100
Posted
I the USA we have Biotene which we can purchase without a script. I am not familar with the UK trade name.
And Tumtum, and of you, I will use USA sites to research for any of you...just ask.
kind regards
judith
mandy95 ihavenonickname
Posted
ihavenonickname Tumtum1963
Posted
It is true...helps ti drink lots of water to flush things through...
Thank you