Allergic reaction leading to bigger problems?

[flutterbee]

So, I've been thinking about this for some time. I know we aren't doctors and can't diagnose, but there is a wealth of knowledge and experience on this board and I want to get your thoughts.

As you know, we are still struggling to come up with a diagnosis. I don't seem to fit any one thing - rather have bits and pieces of various disorders - mostly of the autoimmune type.

I've had the lower back pain and right hip issues since childhood. I had some issues with my right hand and arm - with weakness - but it was much, much more subtle - no visible swelling - and it took a lot more than it does now for it to happen. I did have some significant muscle weakness in my legs before, but that could also be explained by the heart disease. Everything else has come on since after the heart attack and angioplasty.

Immediately following the angioplasty, I was started on the blood thinner Plavix. I started having an allergic reaction almost right away, but it started subtle and wasn't recognized. It started as an itch in the middle of my spine. It progressed to the hives, itching and swelling and the restless leg type symptoms with the back arching. I never had that until the Plavix. I also bled profusely on the Plavix. You bleed easier on blood thinners, but this was above and beyond. I would bleed through my clothes without even knowing I was injured. I still bleed easier - though not near as extreme. The purpura that I sometimes get when I scratch an itch is something else I never got before the Plavix.

Because the cardiologists I had at that time wouldn't take me off the Plavix, this reaction went on from mid-March until the end of April. I had to be on a blood thinner with 4 stents. They scared me into taking them. By the time I was off of them, my doctor at that time said the reaction went systemic. It took 3 steroid tapers to finally squash the reaction. 2 of them were after the drug was stopped.

Now, I did have the hemorrhage following angioplasty and I wasn't on Plavix then, but had been given Heparin.

Blood thinners can have some pretty scary adverse reactions that involve platelets that can be potentially life threatening. I didn't have that. My point in bringing that up is that it's not a benign drug. As with any drug, there are risks.

So, all of my other symptoms have come on since then. Previous symptoms are much, much worse. I would say at least 20 times worse. The restless leg and back arching thing has not gone away. I still get itchy from time to time. I've managed to take some skin off between my first and second knuckles on my right hand this evening from itching.

There is a thing called drug-induced lupus, but after the drug is stopped usually the lupus goes away.

I'm wondering if having this reaction for so long has caused a previous disposition to go haywire. If it caused my immune system or endocrine system to go haywire. And if so, can anything be done other than treat the symptoms? Just thoughts...

I just don't think it's a coincidence that things have happened the way they have. My issues before (other than the heart disease) have never been this debilitating and were only sometimes limiting.

I haven't been able to find much in terms of information. I've talked to my GP briefly about this and she didn't say much. I am going to talk to the rheumy about it at my next appointment.

If anyone has any thoughts on this, I'd be happy to hear them. Like I said, I am going to talk to the rheumy about this. But there is so much experience and knowledge on this board that I thought it would be nice to get some lay-person feedback.

TIA

 

[gcvmom]

Definitely not a doctor here, but the back arching and RLS sound almost like a drug-induced dystonia. Are you or have you been on anything that affects dopamine?

As for the itching, I know that our immune systems can change with time and also be triggered by environmental factors. We can outgrow allergies and develop new ones as we grow older. Perhaps a consult with an allergist/immunologist would also be helpful for you.

 

[Hound dog]

Well. I guess if the human brain can get stuck in "fight or flight" mode, the immune system can get stuck in ultra sensitive mode. That's the cause of autoimmune diseases. Or at least one theory anyway.

Do they have immune suppressor drugs for this sort of thing? Of course, then you'd have to worry about infections while on them.

I actually developed an allergic reaction to demerol. Took it on and off for a year without a problem, then WHAM! The reaction was so severe it nearly killed me.

Is there any chance there could be something still in your environment you're reacting to and not know it?

 

[flutterbee]

gcvmom - I tried Requip for about 2 weeks to treat my RLS symptoms, but they made it worse. However, those symptoms started with the Plavix reaction. They were the first symptoms of the reaction and intensified immensely while I was still on it. They have never gone away. Other than that, no drugs that affect dopamine.

Lisa - Methotrexate is an immune suppressing drug that is used to treat various autoimmune disorders. You do have an increased risk of infection, but most people tolerate it pretty well. And with an autoimmune disorder, you're just more prone to infections anyway.

As far as environmental, I don't think so. I suppose anything is possible, though, and I'm open to any suggestions. I don't think I can afford to arbitrarily rule anything out. The letter from my rheumy reads, "Department of Rheumatology and Immunology", so I'm thinking he's a really good place to start with this...besides the rheumy aspect.

There is also a small possibility that I'm reacting to the stents. I did get some info on that last year when all of this was going on. There is a study being done out of the University of Texas, I believe.

Everyone says it's so rare and some doctors don't believe you can have an allergic reaction to the stents - which I find asinine because any time you introduce something to your body you can react. But, in any case, it's also rare to have an allergic reaction to Plavix and it's rare for someone my age to have severe coronary artery disease. So, I don't care about rare. It can be rare for the rest of the world, but if it's happening with me, then it's not rare for me, Know what I mean??

But when you look back at when everything really started to get bad, the timing is with the angioplasty and stents and the reaction to Plavix. Somehow it has to be all connected. Even if it's that the reason I had the reaction was because of an underlying disorder. There is just some sort of connection. Just have to figure out which came first - the chicken or the egg, you know.

 

[DammitJanet]

Heather...have you considered submitting yourself to Diagnosis X? or Mystery Diagnosis? LOL. Really though Im serious. Send in a letter with all this info to Discovery Health and see if they could see you and use you.

 

[Hound dog]

Janet, that's not a bad idea. I love both of those shows. Some awfully interesting dxes on there. Although I feel for the people having to go thru it.

 

[susiestar]

I am sorry you are having to cope with all of this. Rare is irrelevant if you are going through it, other than it causes major problems in getting someone to acknowledge the issues and treat them.

I would suggest an allergist AND an immunologist. Ask your rheumy if he is able to handle the immunology part or if there is an immunologist in his dept who could consult for better results.

Let the docs know how this is impacting your life and your ability to function. Don't be stoic, cry if you need to when discussing how scary this is and how it hurts and how you just can't do what you need to. I have found that being stoic, saying "I'm fine" when the doctor first walks in, etc... have really kept me from the treatments I need. When I tell the doctor Iam fine, etc.... from the beginning, then I get more responsive treatment.

My allergist wasvery interested in the long term effects of allergies, etc.... I think a very good allergist might be super helpful.

Hugs,

Susie

 

[TerryJ2]

Heather, you are defintely still reacting to something. And sometimes you can develop additional things because of one reaction, either a chain reaction or a larger reaction. So I agree with-you. However, which came first ... I don't know. I wish your GP were more interested. So sorry.
I'll ask my husband. He is sometimes good at this sort of thing. He's got major jet lag so it may be a day or two b4 I can get him to focus.

 

[TerryJ2]

Heather, I did a quick search and found this online. What kind of stents do you have? I would still not rule our Plavix, but this article is very interesting.

http://content.onlinejacc.org/cgi/content/full/j.jacc.2005.09.045v1

 

[flutterbee]

Janet, I watch those shows, too. Those ppl always have finally gotten a diagnosis before they appear on the shows, though.

Susie - I do need to be better about letting them know how I'm really feeling. I tend to do the "I'm fine" thing. For so many years I was treated like a hypochondriac so going to the doctor causes me quite a bit of angst. I really just need to lay my cards on the table and let them sort it out.

Terry - I have 4 drug-eluting stents. I wondered initially if I was reacting to the stents after it went on for so long after the Plavix was stopped. But my doctor at the time told me it was just that the reaction had gone on for so long and really thinks my reaction was to the Plavix. There is a forum on angioplasty.org that is geared to stent issues and is where I found out about the study. Thing is, if it is the stents, I don't think there is anything they can do about it. At least not without involving major surgery, although I have had thoughts that I just want them out when I'm feeling really bad. Like last night when 2 benadryl - which normally knocks me out - was barely doing anything. My GP is interested, she just doesn't have the knowledge on this subject to be able to really have any input.

Some days all of these thoughts and coincidences and how everything has played out runs through my head and I really want to get a handle on it. Other days I don't care what it is, I just want them to fix it.