Sulfa (Bactrim) allergy - Start of Autoimmune issues, now Sjogrens and more

[MichBlueEagle]

I was prescribed Sulfa two years ago. It seemingly started me on Autoimmune disorder journey.

I have never had any antibiotic's allergies. Two years ago I was prescribed Sulfa, and I had a very adverse reaction. I developed a severe rash covering my entire body, a extremely red face from the neck up, a fever of 103.5, numb hands and feet, weakness, and I was hospitalized for 4 days.

About six months later I started with my long road to a Sjogrens diagnosis. Although I do not have Sicca (dry eyes and mouth).

I've read former threads of people saying they were diagnosed with Sjogrens after an allergic reaction to Sulfa.

I may be way off base here, but-

Does anyone think there might be a correlation? Between Sulfa and Sjogrens? Or Autoimmune for that mater?
I also now have been diagnosed with Neuropathies in my legs and hands, Raynaud's, and a Myopathy

Please let me hear your thoughts!

[litliwlowa]

Hi MichBlueEagle and welcome

I don't know if there is a correlation but the question certainly interests me. I have sulfa allergy too. Bactrim was horrid by second dose of very first time it was prescribed. Ugh, I still remember the horrid rash that felt like a gazillion ants all over me biting.

But allergy for me was well before SJS diagnosis by about 20 years roughly.

It would appear from reading the experiences of many of us that we can in some way correlate the development of SJS symptoms following some kind of trauma or other stress event whether by months or years prior. I correlate mine as part of a domino effect precipitated by a near fatal headon vehicular collision...domino effect for me that began then.

Amanda

[Carolina]

Interesting Mich,

My first real 'allergy' to a medication was to Sulfa, in 1999.  In 2002 I was diagnosed with Sjogren's. 

Now I've always had sero normal (negative) blood serum and had no lip biopsy etc.

It turns out I don't have 'real' allergies, or 'real' Sjogren's, because I don't have enough IgE to have an allergy or any auto antibodies to produce an autoimmune condition.

It is actually just my basic immune system throwing a fit over certain things (like Sulfa) and attacking my tear/saliva system, and others parts of my body,. causing Sjogren's-like damage.

Anyway, it's interesting that the first thing that showed up (aside from Severe Eczema and bronchial problems as a from infancy) was a reaction to Sulfa.

And from there, the Sjogren's (like) and more and more, snowballing into Neuropathies, Deafness, anemia, Interstitial Cystitis, copper deficiency, blah blah blah.

I happen to think that something shows up because it is the 'leading edge' of the dysfunctional immune system.

It isn't the CAUSE,  it's just the first thing that shows up.  I do agree with litilwiowa that a very stressful incident, accident, illness can weaken our systems and trigger the appearance of what was already lurking, just needing a 'gap' to jump into and start making trouble.

I, personally, think we carry the Immune Disorder/dysfunction with us from the beginning.  WHEN and why it shows up?  Well when I became allergic to Sulfa, I had had a major hysterectomy, shoulder surgery, cardiac angioplasties and stents, and had major abscesses in my bladder related to the surgery.  I had been in the operating room 4 times in 4 months.  (I would end up going in two more times).  I think that is the reason my system weakened enough for the immune deficiency, disorder whatever to take over.  I even had hand surgery 2 years after all the earlier surgery and before the Sjogren's.

In fact, people have been tested for Sjogren's, and turn out to test positive without even KNOWING they have it,because they have Neuropathy and it's so much more bothersome they pay no attention to the dryness.

And the dryness of Sjogren's can be fairly benign.  I know that sounds odd to those of us who suffer with sandpaper eyes and mouth.. But Sjogren's can have lots of other autoimmune conditions come with it, AND Sjogren's can do so much more damage than the dryness.  Tho' I am NOT discounting the misery of the dryness, and the damage it can do.

I know, that my immune system has always been dysfunctional.  If I had not survived my very severe coronary artery disease, I would have never even known about all the other things, and never been diagnosed with Primary Immune Deficiency Disorder (PIDD) and started treatment with IVIG.

Hang in there MichBlueEagle. What ever develops, we are here to show you that you CAN COPE.

Hugs,  Elaine

PS I have developed reactions to all codeine products which is pretty difficult to deal with.

[Joe S.]

Welcome to our forum. I don't have any advice for you today. I found "spoon theory" helpful to understanding good and bad days.

[Pisces24]

Weird because I am allergic to sulfa too. My reaction wasn't as bad as yours. I had 10 days worth and on the 9th day broke out badly around my ankles and a bit above. I about scratched my hide off for 3 days. I just thought I got into something but went to dr again and he said: No, you are allergic to it.

This was a good 10 years or more before I developed any "issues" that came to be Sjogrens related so I can't say if that is it or not.  I had Hashimoto's at age 21 though.

[Head2Toe]

I am also allergic to Sulpha, but mine arose last year almost exactly in the middle of a five month flare.  I was prescribed Bactrim for bronchitis and pneumonia - and about 4 days into the prescription my hands and fingers suddenly went blood red and I broke out in hives from my ankles to my waist.  I am embarrassed to admit that I had developed so many mysterious symptoms over the preceding months that I didn't even make the connection between the meds and what was going on with my body in that moment  

Thankfully my husband was paying attention, and he became immediately alarmed when he noticed the colour of my hands, and then a few minutes later when I discovered the hives he understood what was going on - so insisted that I take Benadryl.  Within an hour the welts went away and my hands went back to 'normal'.  Although I didn't take any more of the Bactrim, the welts came and went for about a week afterwards, and the palms of my hands peeled. 

The palms of my hands have had a red flush for as long as I can remember, but now they are flushed AND have darker red/purple blotches that make them look stained or bruised...  I'm not sure if the blotches are a result of the Sulpha allergy - or if they have developed over the years and I just hadn't noticed until after my hands went abnormally red due to the allergic response.   

One thing is for sure - no more sulpha drugs for me!

[Carolina]

Also, sulfa shows up in lots of things, including some topical antibiotics creams.

I used to use the triple antibiotic cream and then my wound would get worse, and itching and oozing.

Turns out that was from the sulfa which is one of the three in triple!

Lots of things are analogs of sulfa, so you need to be on your toes.

Hugs, Elaine

[MichBlueEagle]

Wow-

A lot of responses in a short period of time! Thx everyone! - Thank You for your encouragement! Its funny how Meds affect us so very differently. Some in good ways and some in bad ways.

I didn't know what you meant by "The Spoons Theory" Joe. After a little searching I found it. I don't think I'm there yet, but some days I feel like I'm sinking in this sand. As time passes it the sand does seem to be getting deeper, and more fluid at the same time.

You know with Sjogrens and all the other stuff I have going on. For whatever reason, I keep thinking this will all be Ok. I'm going to be given some magical drug and everything will get better. Like some sort of miracle cure.... The miracle drug will make everything just go away... Maybe I've just now come to realize that's not the way this works! Everything we take as far as meds, every therapy we try IS NOT GONNA FIX THIS!!!! Why was I still believing something would?

I guess I've come to the realization that we all, for the most part, have no cure for our illnesses. We all must just mask our symptom's as well as we can. Yet we all will live our days to the fullest, and enjoy our families, and our lives as best as we can!     

[anita]

I too experienced sulfa as my first antibiotic allergy.

Now I have severe drug reactions to EVERY antibiotic out there, in every drug class.  We have tried every drug class and I get the same reaction...fluid filled blisters on all mucus membranes, including mouth, throat into small airways.

I too agree that those of us with immune deficiencies are not having true allergies...and that's why I used the term drug reactions, not allergies.  My sulfa reaction was different (broken blood vessels everywhere and they said that was a true allergy...who knows.  But now it just blisters.

Elaine,

Please tell us where you found this information about not being able to have allergies or autoimmune disease when immune deficient.  Did your immunologist explain this to you?  Can you provide any links to information on this.  Because Primaryimmune.org and all other sites say the exact opposite....that we are at higher risk of autoimmune problems and allergeric reactions.  I'm interested in your several comments about this and like I said above I don't think my antibiotic reactions are allergies...but they are an "immune mediated response".  Please fill us in on where you getting your information.

[irish]

If you do some searches you will find that sulfa allergies are quite common in people with lupus. Lupus is a second cousin to Sjogrens so it seems to me that nothing is impossible when it comes to autoimmune diseases.

I am also allergic to sulfa and got the allergy later in life. I was ill for about 40+ years before diagnosis plus diagosis of 3 other autoimmune diseases and severely low t-cells. I am also allergic to cephalexin, amoxicillin, Rifampin and Gammagard IVIG product. I think I have a few more but have forgotten them right now.

It is one of those things that what comes first the chicken or the egg. Doesn't make much difference either way cause once we have the allergy and the diseases we much cope and adjust to the whole shooting match. Not always fun, I might add. It does behoove us to pay attention to our drugs and keep track of any strange reactions. Good luck. Irish

[litliwlowa]

I too experienced sulfa as my first antibiotic allergy.

Now I have severe drug reactions to EVERY antibiotic out there, in every drug class.  We have tried every drug class and I get the same reaction...fluid filled blisters on all mucus membranes, including mouth, throat into small airways.

I too agree that those of us with immune deficiencies are not having true allergies...and that's why I used the term drug reactions, not allergies.  My sulfa reaction was different (broken blood vessels everywhere and they said that was a true allergy...who knows.  But now it just blisters.

Elaine,

Please tell us where you found this information about not being able to have allergies or autoimmune disease when immune deficient.  Did your immunologist explain this to you?  Can you provide any links to information on this.  Because Primaryimmune.org and all other sites say the exact opposite....that we are at higher risk of autoimmune problems and allergeric reactions.  I'm interested in your several comments about this and like I said above I don't think my antibiotic reactions are allergies...but they are an "immune mediated response".  Please fill us in on where you getting your information.

Elaine, I echo Anita's question.

Here is what Hopkins has to say about allergies:

http://www.hopkinsmedicine.org/healthlibrary/conditions/adult/allergy_and_asthma/allergies_and_the_immune_system_85,P00039/

~~~~~
As an "aside", FYI on sulfa/bactrim allergies which I found out the hard road way, make sure your pharmacists are aware of that allergy. Case in point, hydrochlorathiazide (HTCZ) is contraindicated for Bactrim/sulfa allergy. It's a common component of combination high blood pressure medications (HTCZ I believe is the diaretic component).

[LucyD]

Hi MichBlueEagle,
I, too am allergic to sulfa antibiotics. I had a bad reaction to it about two years ago when prescribed for a sinus infection. Eczema like sores all over my body - kept me awake at night itching.
Interesting.
LucyD

[Carolina]

Oh, Anita, I misspoke.

It is true that you can't have TRUE ALLERGIES if you have low or no IgE.

And it is TRUE that I don't  produce any auto antibodies and yet have auto immune type conditions (Sjogren's, Interstitial Cystitis, probably all of my neuropathies, Meniere's, maybe my anemia and copper deficiency?). 

I asked my Immunologist how I could have allergic type reactions with IgE of 5 (with 4 being the bottom of normal) and no auto antibodies...and she said that my Immune System itself is attacking my body.  It is 'acting like allergies' when things it doesn't like are introduced into my body: EG sulfa, codeine, IgG.  And it is directly attacking my saliva/tear producing system, damaging it, and directly attacks my bladder.

It isn't from high IgE or from auto antibodies, cause I don't have any.

I didn't mean to imply that if you are Immune Deficient you can't have auto antibodies.  In fact our immune system produces auto antibodies normally, and normally they are all destroyed immediately (why are they produced in the first  place, who knows).  For those with auto antibody disorders it is because the Immune system does NOT destroy those auto antibodies (again who knows why).

I don't have high IgE or auto antibodies.  That's just me.  I was puzzled about how I could have allergic type reactions (to wool, to lamb, to some insecticides, to ragweed, and several medications) or autoimmune type conditions, without IgE and auto antibodies.  That's when she explained that for ME it's the behavior of my Immune System acting alone, using Cytokines to attack either the substances it doesn't want and thereby making me sick, and also using Cytokines to attack my body.

I know that those here do test positive for Sjogren's, and other auto immune conditions and produce both auto antibodies and have an Immune Deficiency.

Those are the ones with both Plaquenil/Methotrexate, AND IVIG.

I didn't mean to confuse everyone.

Hugs,  Elaine

[Iris]

So far I haven't had any problems with Sulfa drugs.. Actually I ask if I can have Sulfa if I need an antibiotic.. If not I ask for Azithromycin.. Every other antibiotic causes yeast so bad in me I won't take them unless I just have to..  And then they have to give me Diflucan too to keep the yeast in check..

[Carolina]

Dearest Sjogren's Angels,

After reading the posts I realize how different and how much the same we are..   We are Zebras, which means when doctors are expecting horses, they get us, Zebras!

All it means is that we need doctors who pay attention to us, as individuals and stop trying to fit us into patterns.  Because we don't fit any patterns.

My Immunologist has 250 CVID patients and each one is different.  It makes her crazy because she's trying to do research, and what you WANT in research is a population of similar subjects.  That's why they breed rats that are all ALIKE.

Well, we aren't all alike.  We have to get used to it.  and  support each other.

Hugs Elaine