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Post Your Experiences With Autoimmune Drugs.


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Jangle, after I tested positive for sfn by skin biopsy my neuro started me on plasmapheresis. It was part treatment part test. When I responded well to it. My bp/hr normalized an I felt much better rather quickly, that was until I got another infection and anemia, which is how we found the immune defecit. He felt that the fact that I responded to the pheresis proved it was autoimmune SFN. Of course we now know I have several auto's on board along with the cvid/hypogamma.

I posted all the labs he did on me a very long while back, if you do a search you can probably find those posts.

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Jangle,

I am sorry you have this decision to make. I did try IVIG and Predisone. Unfortunately, I didn't do well on both. I was allergic to both... The Predisone just made swell up like a balloon, hives, itchy, but nothing too terrible. IVIG, on the other hand, was disastrous for me but that was partly my fault. I had many signs of having an allergic reaction- but thought it was just normal reactions. I also had hives and itching but my doctor told me that I was having reaction to another med I begain.

The next week I went into an infusion center (outpatient) to get my infusion. All of my previous ones were done inpatient. I told the nurse about the symptoms I have and she felt unfomfortable right away and said those effects are POSSIBLE side effects but you shouldn't necessarily have them all. So we were going really slow with the rate... I asked her right away "Did you start the IVIG?" And she she said she just did... and I immediately had a headache and started itching... she turned it down lower. Within 5 min, I think???? Hard to remember... but I had complete anaphylactic reaction... So I went to the allergist and he was very against using IVIG for our condition. This was all done at my local hospital, not Mayo. My Mayo doctor was contacted and he wanted to try another brand and I said I was going to think about it. But my local doctor said they would not do it at their facility (liability). He sent me for some blood work and I got a call on my cell phone within an hours- I was in full rejection. So obviously that wasn't going to work. My autoimmune disorder was so agressive and had just taken over. Believe it or not... I am STILL trying to get it out of my boy. Everyone told me it would be gone within 6 weeks. I would never get fevers and when I would get sick to try to get rid of it and get it out of my body... yeah... mine is still in here..... July. I had the infusion in Dec/Jan. I will always know because I wake up with a face FULL of cold sores- lips, chin, up around my nose... no warning. I will be sick all day. Throwing up, feeling as if I have a horrible case of the flu. BUT for the first time I had a fever. NEVER have had one. It was 102... which for ME is very high because my base is 96-97, but each time since NO cold sore and has been less severe and I can literally live it leaving my body. SO YAY!!!

It would be so nice to really feel like I have my body back again.... even if I am not totally healthy..... it know this sounds silly... but I can FEEL it in me. I am sure it may just be "in my head" but I really did feel it there and now I feel it leaving. The doctors were sure that I have autoimmune mediated autonomic dysfunction neuropathy but unfortunately these two treatments actually made me worse rather than better. I will get better, I know it. I truly feel this and I don't know if there is a medication stronger than that.

Jen

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Jangle,

What has made you beloved that your POTS is autoimmune? I know you had done well with reconditioning for a while and I haven't been on the forum quite as much cause I haven't been too well so I think I missed something.

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Not to be repetitive on too many topics...but I did well with hydrocortisone. Originally did 10MG in the am and 10MG in the afternoon for about a week. Weaned to 5mg 3x/day every 4 hours. Recently weaned to 5mg 2x/day at 8am and 6pm. Goal is to get off but not at the cost of increased symptoms. Gave me the ability to breathe back. Also reduced R ear pain, R neck spasm near my carotid and helped me have a little break in feeling so ill. Lastly, the reduction of those symptoms namely the breathing problems helped me deal with and reduce my anxiety. If there's a next time I would possibly try an SSRI or something like it as I've seen people on this forum credit there symptom reduction to finding the right one for them.

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  • 2 months later...

Yeah, don't discount the possibility of mast cell issues causing autoimmune response.

I've only done the GastroCrom for one week now and not to the level the doc wants me. Going low and slow. So far --- so good!

Issie

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I've been off of HC totally for about 2 weeks. I recently had pituitary MRI - negative (ordered b/c I'm lactating - sorry gentlemen), and blood work that showed Low hematocrit, hemoglobin, ANA screen IFA - positive, ANA pattern - nucleolar, ANA titer - 1:40 H. No clue what this all means except maybe this years POTS was brought to me by autoimmune attack of some sort. Tests were done by a great endocrine but I'm guessing she'll refer me to Immunology...not sure my next path. I do miss HC - it really quieted my symptoms quickly. Im not feeling significantly worse without it but it did give me some boosts. Good luck all

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Jangle,

I take a mix of celestone/kenalog steriod shot in my hip.

I also have a history of mixed connective tissue disease(20 yrs ago...very elevated ANA and sed rate, that is now normal) and now have Hashimoto's Automimmue thyroid antibodies. I just know that I have a dramatic improvement for 2 1/2 weeks, but long term high dose steriods have side effects, so I have to weigh it out and only get the shots when I have to fly or am sick.

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Now doing a trial of hydrocortisone (instead of the prednisone I reacted to so badly.) Endocrinologist says its an experiment but that the hydrocortisone is a much more natural form of cortisol (prednisone is the synthetic) and that hydrocortisone's half life is much shorter than prednisone so he gets much less adverse reactions from patients that are sensitive. We started at a low dose and I take it to mimick a natural cortisol circadian rhythm. So far no major bad reactions...just hot flashes and some insomnia...not unreasonable for a steroid. I do have more energy and my joints hurt slightly less. I also started a gluten free diet around the same time, so we will have to determine what's what if I continue not to react adversely to the steroid and continue to feel improvements. Will prob go off the roids for a couple weeks and see what happens to differentiate between the two.

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  • 11 months later...

We haven't had much discussion about this in awhile so I was thinking about making a poll. Also what I found out was that in 2006 when my asthma and pots first appeared I went into remission with high dose inhaled steroids and a healthy diet. Now when my pots and asthma came back stronger my inhaled steroids no long worked and neither did high dose prednisone (50mg)

I found out about 5 months ago I have mild Sjogren's Syndrome and now I am looking into a vasculitis called Churg Strauss Syndrome. In my research on Sarcoidosis, another lung related autoimmune condition, I cam across a study that showed that autonomic neuropathy or Small fiber neuropathy patients no long responded to prednisone. This study was done at the Cleveland Clinic. I would be willing to bet that once the autonomic nerves are dysfunctioning that the signal response to prednisone is impaired. Perhaps those signals are actually how prednisone works. The nerves send a message to the brain and the brain sends more signals to the immune system.

There for other medicines are probably need instead. In the sarcoid study when prednisone no longer worked, IViG helped 66% of patients into remission.

In Churg Strauss luckily they know that it's Eosinophils that are causing all the damage to targeting them is what is most important to recovery. They usually start off with cyclophosphamide (a chemo drug) and high dose prednisone. Now they are also using Rituximab with similar success. Then they maintain with prednisone and mexotrexate. But now there is a new drug on the horizon with hardly any of those dangerous side effects that just lower Eosinophils.

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I had 2 rounds of IV solumedrol. Bad idea. Made my tachy so much worse, also my BP was higher than normal for almost 10 days. Also, the chest pain was absolutely unbelievable. This was part of my IVIG protocol for my first infusion. The second time around I refused it and I didn't have those problems anymore.

Rich, what drug do you have in mind? (the one with fewer side effects)

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My own experience of Prednisone definitely seems in contrast to many here! After being ill for a while at the start of the year, eventually to be diagnosed with Crohn's, I was put on 40mg tapering down over a couple of months. I know Prednisone can temporarily make people feel energised and motivated but for me that couple of months (and a fair while afterwards) was like one continuous and very intense panic attack. I've got a fair bit of experience with anxiety (to say the least) but this was on a whole new level, it was as though my body had a bountiful, never-ending supply of adrenaline constantly being pumped into it.

After my preliminary POTS diagnosis last month I figured the problems I had on it seemed fairly logical, I would've thought medications that can bump your heart rate up and mess with your BP would be problematic with POTS (especially since it seems to make people more sensitive to medications as well) so I'm surprised to see some do well with it, as great as that is!

The Prednisone did at least clear up the Crohn's flare and now I'm on Azathioprine for the foreseeable future.. I've had no ill effects from it so far (barring the expected ones that come with a suppressed immune system) but I don't feel better in a general way on it either so I'll have to assume it's not interacting with the POTS-y side of things at all thus far.

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Hi Rich,

Glad you brought this post back up. What I found interesting was that some people responded to steroids. However, steroids can make vocal or motor tics worse if used for more than a week. One of the things doctors use to help diagnosis PANDAS is called a Steroid Burst. If the symptoms clear up within two weeks, this is a tale, tale sign for the doctor. PANDAS is an autoimmune disease. I wonder if any patient with an autoimmune disease would react this way with a steroid burst. I don't think steroids is a cure by any means for an autoimmune disease. My son has been on steroids and he can tolerate them for a week. They are only used when he has a croupy cough that inflames his chest.

Rachel

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Terrier-prednisone actually mimics cortisol, which is a big hormonal part of the fight/flight response

Rachel- thank you :) i have heard from a bunch of ppl with all sorts of autoimmune issues that a few steroid bursts know their illness into remission. I think though that nerve damage could play a negative role in those results. The worse the damage less the steroids could work. Thats just based of of some studies I have read and other anecdotal evidence. Wish they would study it more.

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Hey Rich

Did you ever have the Paraneoplasic Autantibody test panel ran. It's a test through MAYO. Our insurance has approved this test for my son, so he is going to have the blood test done this week. Our cardiologist is trying to rule out some of the autoimmune stuff for us. We are hoping it comes back negative but with some of the neurological stuff going on, the doctor thought we might need to get this done and ruled out.

Rachel

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Rich I'm about to schedule to see a Dr Soloway. I have heard he's been good in diagnosing a few cases of PAF. I'm not that sick thank goodness but I think he's not afraid to try some new stuff. He's in Vineland NJ which is South, near me. I happened to come across a 3 hour long lecture he gave med students and I liked him. I'm running at around 85% improvement from the crash of 2012 (haha), and I've given Dr's a break for a while. But I need to keep my eyes open for the person who might just figure me out. His lecture is on FB. I'll try and share it

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Hey Rich,

Just want to let you know about my son's experience with Desmopressin. He tried this medication for about 4 weeks. Our cardiologist took him off his Midodrine totally to see if we could get some better blood pressure readings. It had the opposite affect. It raised his heart rate and lowered his blood pressure, even after we increased his salt levels. However, I have heard for some people this drug works wonders for them. Just wanted to let everyone know what our experience was with this medication. My son also had the paraneoplastic autoantibodies test ran this last week. Hoping this test comes back negative.

Rachel

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