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
Margot49 Tumtum1963
Posted
morelia100 Tumtum1963
Posted
Hi Tumtum,
I was diagnosed with Sjogrens about 3 years ago. Since then, I have done much reading on the topic of autoimmune disease. Despite all my reading and research, I feel like I have only scratched the surface. However, I get the sense that most medications help only with the immediate symptoms but don't take care of the underlying causes. Also, because they are chemicles they do create a hardship for our bodies to process them. I have also read that there are numerous side-effects. The good news is that I have come across so many stories of people with autoimmune disease who were able to reverse their symptoms through natural methods -- such as reducing stress, altering their diet, sleep, moderate exercise, meditation. It does work for many people. It's so tough because we are all so individual and sometimes there has been so much damage to your body, that you are left with no other choice but to use medications. Whether you are on medication or not, I know that it is risk free to try modifying a diet, or changing your lifestyle to one that will support your health. Maybe you already are doing these things -- so then you already know, but I always feel like I have to share what has helped me. I am happy to report that I no longer suffer an joint pain at all. I have much more energy. I still have slight symptoms of dry mouth and eyes -- but mainly at night and not all the time. So there is hope! Hang in there
I really hope that by sharing information, we can, as one big group, figure it all out so that in the future no one has to suffer like this. If you want more specifics -- then I would consider going sugar free (I feel like it is one of the biggest culprits), gluten-free -- and check your B12 levels -- and find a naturopath who can help you with all this as it can feel overwhelming. Consider checking out the paleo for autoimmune -- tons of books out there on this. Best of luck!
aitarg35939 Tumtum1963
Posted
Hi Tumtum
I've always been very sensitive to meds, with now many true allergic reactions and tons of paradoxical reactions. I have never been able to take sulfa drugs, and when it comes to corticosteroids, i can inhale them for my lungs and put them on my skin but can't ingest them or have them in a shot ,,, though I used to be able to have both tablets (for respiratory problems & shingles) and injections (in an SI joint). Many numbskull docs say steroids are naturally occurring substances in the human body therefore one can't have an allergic reaction to them - Bull Corn! If women can have allergic reactions to sperm, anything is possible.
It is also possible that we have more problems because our enzymes just ain't what they should be. I believe there was a conversation along those lines back in May or June.
Another conversation we've had is about blood type. It seems that a disproportionate number of those of us responding to the query here have B+ blood.
morelia100 aitarg35939
Posted
Aitarg,
I had a mild case of perioral dermatitis -- the doctor prescribed a corticosteroid cream. The cream aggravated my condition and made it 10 times worse. I finally took matters into my own hands and did my own research and discovered that the steroids did actually aggravate this condition. Also, in the past I have used creams to alleviate mosquito bites, only to find that the cream triggered multiple autoimmune symptoms. So now, I stay far away from steroids and most chemicals. I feel like my body just can't handle them.
Tumtum1963 aitarg35939
Posted
Tumtum1963 morelia100
Posted
Thanks Morelia - I'm just like this and always have been highly allergic to random things. I think my small fibre neuropathy is also a kind of giant of an allergy. I wonder if it's to do with my old fillings from childhood? I find myself wondering about this often since I've had my diagnosis of SS!
aitarg35939 Tumtum1963
Posted
We don't knows that there is one. Someone in this forum just asked the question and it was interesting to see the reply.
You can look back through forum postings.
aitarg35939 morelia100
Posted
aitarg35939 morelia100
Posted
Speak of the devil: right now I've got contact dermatitis from arnica ointment. All I wanted was to heal some bruises on my shins before a Sunday night wedding, and now I've got bright red areas with bumps! If it ain't a reaction to one drug ,,, all I'm doing is keeping it clean, afraid to touch it with any other Ned lol.,
mandy95 Tumtum1963
Posted
I had the same medication as you all with did allergic reactions. I have since found out that around 50% of Sjorgrens patients have Fibromyalgia. I was just st a meeting given by my RA specialist to a group of Sjorgrens Patients, and I asked the question if all my allergies where caused by the Sjorgrens. ZHer reply was no (she is a Sjorgrens Specialist) on her clinic she found that a lot of her patients with such allergies all hot Fibromyalgia. She said it was that that cause the allergies because your body becomes hypo sensitive to just about everything. She has taken me off all medications for the next 6 months.
Hope this helps.
Mandy
Tumtum1963 mandy95
Posted
Interesting. I certainly don't believe I've got Fibromyalgia and have never had this diagnosed or would allow it to be. I think my allergies abs sjogrens go right back to childhood because I had both when little and there were booster injections they wouldn't give me. They say small fibre neuropathy is linked to Fibro but all they mean with Fibro is functional chronic pain - not something they understand yet so they tell us it's us over responding to painful joints and nerves rather than try to learn more and slow down the disease.
My neurologist says mine is progressing into large nerve fibres now and if it does then I may need another immunesusprressant. My instincts say that all my allergies and the RA that was Sjogrens are all part of one immune mediated process. I still believe the lack of moisture our bodies means that our hold onto other chemicals too long as we can't flush them away so well. This makes more logical sense to me than your visiting doctor's Fibro theory!
mandy95 Tumtum1963
Posted
Mandy
Tumtum1963 mandy95
Posted
That's fine if it makes sense to you Mandy. But for me the medical profession have created a condition that, along with CFS/ ME - they can attach meaning to within their own sub codes i.e. "People who are oversensitive types, often menopausal women, too anxious/overstressed etc - leave the on a high shelf to manage research while we concern ourselves with real diseases". So I still think my hunch about those of us with Sjogrens not being able to tolerate chemicals well is because of lack of moisture. It's about how we get medical searchers to help us find a non drug intervention that we can trial such as vagus nerve stimulator. This has been trialed on many other groups of people with MS and RA and Lupus with great success but not yet on Sjogrens? If we can show that we are the most drug intolerant group then maybe they will trial the vagus nerve stimulator on us. This is what I would like to see happen the most. I live in
Scotland and haven't found food eliminations to make any difference at all to me so I now just eat very healthy balance of most non refined fooods.
Margot49 Tumtum1963
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kristyk Tumtum1963
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Hi. People who have been diagnosed with Sjogrens have chemical sensitivities. Besides with medications which i am afraid to start a new one because of my sensatives. We are sensative to the environment. I cant bearound someone who is wearing too much perfume or cologne. My throat will burn like crazy and my eyes will burn and tear terribly. Non Hodgkins Lumphoma is a very small percentage, I cant remember exactly but 7- 10 % chance that a person with Sjogrens will develop it. Our glandsare definately involved with thisdisease. There are many GP's who dont know what Sjogrens is. Itused to take 10 plus years to diagnose it. It now takes 3-5 years so many more doctors are aware of it. The bad part is it can basically attack any organor part of our bodies. My mother now has it in her lungs and has been hospitalized several times in the last year. I have the joint pain,, muscle pain, fatigue. The neuropathy and circulation issue now. Its becoming moreof a household name which is so important for funding for reasearch of treatment of this disease.
God bless you
kristyk
Tumtum1963 kristyk
Posted
Yes I fully agree Kristyk. I use other forums for related diseases Lupus, vasculitis and Scleroderma and often find that people with these diseases assume that secondary sjogrens is just dry eyes and mouth but have no idea that the IT brings a significantly increased risk of Lymphoma and organ involvement as well as CNS and PNS problems such as mine. I find it so hard to tell friends and family that I have it because they assume I'm exaggerating how badly a disease they have barely heard of before can impact on me so badly. Being rediagnosed after five years of being treated for RA has made me realise how relatively little is still known about Sjogrens as an autoimmune disease. If you read up using google most of the main public information sites emphasise that it's the dry eye disease and make it sound like it's really just a nuisance disease. Maybe it is for some, but so far it hasn't been for me!
Margot49 Tumtum1963
Posted
So true. It was an ENT doctor that finally did a lip biopsy on me that was negative. Another ENT Doctor did a parotid glad biopsy, negative. A Rheumatologist I am seeing feels I have SS but says there isn't much to but treat symptoms. Anyone take the med (Evovax (?) or Salagen for saliva production? He prescribed it but I am afraid to try it. Pain clinic at Stanford wanted me to try Kyrica but afraid to take that too. I already have a list of about 22 meds I can't take. They mentioned Fibromyalgia too. I assisted at Dusability Hearings fir some years and saw many cases of Fibromyalgia that used to basically be called Chronic Fatigue Syndrome. All the years I did that job, I think I saw one man with Fibromyalgia. All were women. Makes one wonder.
Tumtum1963 Margot49
Posted
I couldn't handle Gaberpentin at all but had a terrible time trying to get off Duloxetine (Cymbalta) last year. Now I've told all my doctors that I won't be taking any more drugs unless their is a good chance these will be worth the risks of side effects for. The only treatments I would consider would be IViG, Mycophhenolate/ Cymbalta or Rituximab. The neurologist feels that these are "sinister" and is discouraging me from trying them unless the neuropathy has moved into my larger nerve fibres (NCS to come). But to be honest I find Gaberpentin and Pregabalin and others more worrying than the antirheumatic drugs because they alter the brain pathways and it then can be very hard to stop taking them. Not to mention that Gabapebtin turned me into a dizzy, paranoid bundle of rage! No one monitors us on these drugs and they can't be stopped suddenly despite what we are told on the packet. Antirheumatuc drugs are always well monitored for potential toxicity and easy to stop without causing anything more than a possible flare up.
kristyk Tumtum1963
Posted
People do think we exagerate about any of these autoimmune diseases. I think alot of it is because it is "invisible" and no one sees it and so it doesnt exist. I heard someone say a while back, "THE BEST THING YOU COULD SAY TO A PERSON WITH AN INVISIBLE DISEASE IS, I BELIEVE YOU" You can get alot of valuable information from The Sjogrens Foundation. Sjogrens is so very different for each of us. Some of what we deal with is out of the ordinary.I also couldnt handle Gabapentin. It made me feel and act like I was drunk. I couldnt stand up or walk. I kept falling down. I was even sluring my words.It was kind of scarry.
I took Cymbalts for a numbervof years and all of a sudden had a reaction to it. It is almost impossible to get off of. I read an article that people trying to stop the drug experienced withdrawls. Our bodies became "addicted like" Our bodies had to have it. I guess many have even sued the manufacturer. Your experiences were just the same as mine. This forum is so helpful. Im so sorry you have SS but its nice to talk to thers who understand what you have dealt with or things you may be experiencing. Somedays its just hard to get out of bed. Those are the days I listen to my rheumy. She tells me to listen to my body. I do and i stay in my pj's and rest.
God bless you
kristyk
kristyk Margot49
Posted
God bless you
kristyk
Tumtum1963 kristyk
Posted
I agree it's good to have others to talk to about having SS. It's a lonely disease. I was diagnosed five years ago with RA and struggled for ages to try and come to terms with it -never did. And then when I was rediagnosed with SS I felt triumphant initially -but now it seems to be a disease that no one will treat. And lots of people say "oh I have dry eyes too" or "my teeth are terrible!". Then they ask how I was diagnosed and I explain that my blood was very positive for autoimmunity so I had a lip biopsy and bingo. That stops them in their tracks. But it's a lonely disease because no one has ever heard of it and nor can they pronounce it.
I think Fibro is often a precursor to an autoimmune disease such as RA or hypothyroidism. It doesn't seem fair to people to just tell them they have Fibro or ME because,certainly here in the U.K, they then often just dismiss these as anxiety disorders.
kristyk Tumtum1963
Posted
Hi Tumtum, I was diagnosed with Sjogrens 25 years ago also by lip biopsy. Your statement about Sjogrens being a lonely disease is so true. I have never heard that before how absolutely true true. Thank you for your responses. I appreciate all of the information people share with each other . Each time I'm on this forum I learn something new.
kristyk
aitarg35939 Margot49
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I use Evoxac, can't imagine life without it. Yes it may make my head sweat more than normal, but I've always had heavy perspiration anyway. I know I've been on it at least 14 years.
I also use gabapentin and have for 21 years
Tumtum1963 kristyk
Posted
Me too although I use other forums such as Sjogrens World more because I can go back and edit my comments. The trouble is that both are international sites and most users experience different criteria for treatments, different approaches to health economics and politics. There's no forum for U.K. sjogrens sufferers.