Post Your Experiences With Autoimmune Drugs.

[jangle]

I've been searching the threads and I see a lot of people improving with drugs like prednisone, methotrexate, humira, etc. I'd like to aggregate people's experiences, so if you've taken autoimmune drugs in the past (or know someone who has) can you please share your experience whether positive or negative so that we can get a better idea of what types of cytokines and/or immunity cells we're dealing with.

There are literally no studies published on autoimmune drugs and POTS except of course for a few case studies on IVIG treatments for AAG patients.

[dsdmom]

I've been taking prednisone for 4 years. Not because I want to but because I CAN NOT get off it - I was put on it for a horrible migraine and that was it..coming off makes me so incredibly sick and all of my dysautonomia/cfs symptoms so much worse. To the point where I can not function. Starting ivig 20 months helped some and allowed me to decrease my prednisone - I got very low at one point but then a tough virus which meant I had to go back up...then I moved to a high altitude area which really did a number on me and I am still stuck on the prednisone. Have talked about trying other things such as methotrexate with the idea that what I'm dealing w/ is in some ways like RA or other autoimmune issues...with the hope that I could get off the steroids. But it looks like (fingers crossed) I may be trying Rituxan soon prescribed by my neurologist for my dysautonomia and am praying that helps. Time will tell...

[Chaos]

Have done 3 medrol (prednisone) bursts (6 days each time) with improvement of ANS symptoms for a few weeks each time. Didn't make all the symptoms go away though.

Edited July 11, 2012 by Chaos

[ramakentesh]

I know that Blair Grubb now gives courses of steroids to some POTS patients and claim many respond.

[ramakentesh]

I know of several patients with both OI and Ank Spond/ Crohns who found no improvement in their OI from Remicide - at least acutely.

[kluesyk]

I have a marked improvement when I receive a steriod shot in my hip of kenalog/celestone. It lasts about 2 1/2 weeks, but has overall bad long term side effects.

Recently been trying low dose naltrexone to try and reset the immune system as I also have very low CD4 and CD8 counts with negative HIV. Had good results for first 2 weeks, then shingles have returned on my back. Will see Dr tomorrow to decide whether to continue.

[jangle]

I know that Blair Grubb now gives courses of steroids to some POTS patients and claim many respond.

Dr. Grubb claims they respond or patients do? Did Grubb publish any of these?

[arizona girl]

My drugs have been dexamethesone, plaquenil, ivig, cellcept, steriod injections, suppositories and synthroid for hashimoto.

I'm currently on ivig, plaquenil, steriod suppository and synthroid for specific autoimmune issues. I'm on other meds for other issues that at least not yet are consider autoimmune,

Cellcept and dexamethesone caused very adverse responses. Steriod injections flared metabolic issues.

So far I seem to tolerating my current treatment plan well and labs are showing some improvements, some symptoms are improving. I still though don't feel well and struggle depending on the day. Still love to know what normal feels like and I haven't given up hope on that yet, as things seem to be moving in the right direction.

[julieph85]

I've been off and on plaquenil for my RA for years. Since I've gotten pots I've been on it for the last six months. It is hard to say of I've gotten improvement from it. It definitely helps my RA. I have noticed a slight reduction in heart rates over the last 3 months but I attribute that more to cutting out carbs.

[issie]

I did the prednisone steroid pack for 6 days also. It at first made me feel awful and then I thought it was helping and then I started having really bad dizziness. I thought I'd really messed myself up because it took a couple of weeks for the dizziness to get better.

I've also done the kenalog injections because of the alopecia - they inject it directly into the spots to try to stop the autoimmune attack. The day after the injections I felt worse and then I felt a whole lot better. I think if I do steroids again it will be this type.

At this time, knowing that I have autoimmune and autoantibody dysfunctions I'm using some herbals to see if they will modify my reactions. I want to try the more natural things first before any long term steroids with their complications. I am already noticing improvements, in two weeks time.

Issie

[Katybug]

Because my docs think I have an underlying immune and/or inflammatory disease, I did high dose predisone (40 mg/day) for two weeks in Feb. By the 36 hr mark, I felt great...I mean WELL, actually WELL...all symptoms were alleviated! At the two week mark, I had an adverse reaction to the prednisone which included severe swelling (like, I looked like I was stung in the face, swelling), severe shooting pain in my bones (I have never experienced pain as severe as this even with my 2 back injuries), and my skin looked and felt sunburned. I stopped taking it immediately and over the course of 3 wks, the symptoms from the adverse reaction slowly left and all my usual symptoms gradually returned. Six weeks after stopping the high dose prednisone (to be sure all my adverse reactions were gone), my doc tried me on low dose prednisone (first 5 mg/day, then 10 mg/day) to see if I gained the same benefits without the adverse reactions. I was on the low dose for for almost 3 months but had very minimal relief from my symptoms. I experienced significant weight gain from the steroid use and have now been off of it for almost 3 weeks because my docs finally agreed (I had been saying it for weeks) that I was developing a Cushingoid-look to my face and definitely developed what is referred to as a buffalo hump at the base of my neck in the back.

Now we have to wait and see if we fried my adrenal glands or if the Cushingoid symptoms will go away. I know that doesn't sound like positive results but I don't regret trying it for a minute. It helped confirm our theory that there is some underlying condition and that it is causing/affecting my POTS. I am awaiting a call from a new rheumy's office at Hopkins to see if they will see me. (I and my immunologist weren't impressed with the results I am getting from my first one as she wants to treat me for fibromyalgia which she tried 4 years ago with no results. I thought I'd give her another try but that really was a mistake.) The immunologist thinks that it is likely that the only treatments that will help me are autoimmune drugs/biologics but wants a rheumy on board.

[jangle]

Katybug, your experience definitely supports the idea that POTS is autoimmune mediated. Unfortunately Prednisone isn't very specific to what needs to be treated. Yes it greatly suppresses cytokines, but it also suppresses many other things associated with inflammation so it's hard to tell through what path it is helping.

I agree with your immunologist about autoimmune drugs/biologics. I really wish I could find such a proactive immunologist, can I ask if your immunologist is mostly concerned with your POTS or do you significant other autoimmune issues that the immunologist is recommending the biologics for.

[kluesyk]

Katybug,

I too have a remarkable improvement with steriod shot but not so with oral medrol or prednisone. I had similair reactions as you with the oral steriods. I told my drs after the shot that this is the fix for the problem, but they have yet to pinpoint what it is helping. My neurologist told me at last appointment that I should donate my body to science when I die....might answer a lot of questions as my health issues are so complex.

I have autoimmune thyroid and 20 yrs ago a high ANA and sed rate(mixed connective tissue disease) that went into remission after three years. At least it appeared to....the ANA went negative and sed rate normal. Still my ANA is neg today, but have amazing results with steriod shot.

If I know I have to function well or fly in an airplane, I take a steriod shot. It gives me a good 2 1/2 weeks.

[issie]

Interesting discussion. I've had to do cortisol IV with all my surgeries or I crash. Before they figured out this would help me - I did horrible with a few surgeries. I've also had to use cortisol a few times orally. It didn't seem as effective as the shots. Interesting that it helps you with flying - got any ideas why - other than stress response?

Issie

[Katybug]

Hey jangle!

We know in my case that I have significantly elevated C4a but I just don't test positive for any of the usual suspects. I do agree that my and some other people's POTS is immune mediated, but, I think everyone should be careful not to assume that that is their issue as I also beleive that POTS can come from various origins: neurologic damage, deconditioning, etc. I think we all need to look at our own lab work and clinical presentation for clues on pursuing diagnosis and treatment. (I did get lucky with my immuno...he actually used to do research at NIH on immune complexes so he knew my C4a being that high was really bad news.)

As far as where his concern lies, he is very old school and visionary by today's standards all at the same time. He looks at my POTS as part of a conglomerate of clinical symptoms that, in conjunction with my lab work, point to some sort of immune mediated inflammatory connective tissue disease. He has flat out said to me that there is more that is unknown in immumology than is known and that there are hundreds if not thousands of autoimmune or inflammatory diseases we haven't ID'ed yet. He also says we may never have a name for what I have and that he just wants to get me off the disabled list. So, he goes back to the old theory...if it walks like a chicken, and sounds like a chicken, and acts like a chicken...treat it like chicken.

[Katybug]

kluesyk - That's funny...my pre-med friend always tells me she wants to be at my autopsy so she can be there when they figure out what has been wrong with me all these years (she means it lovingly, not morbidly.)

I also have an appt with an endocrinologist that works with several of my POTS neuro's patients coming up in Sept. I think my endocrine system is also being affected by the nasty levels of inflammation in my body. In fact, I think for me, the control of the inflammation is the key. I have so much inflammation in my body I can literally feel it in my skin, joints, and GI tract at times. It has been known for years how damaging inflammation is. I think that having uncontrolled inflammation for so long has started affecting my whole body including my nervous system, resulting in the POTS part of my presentation. (It's just my own working theory that makes me feel smart. )

[issie]

Ha! Dr. G's nurse just told me the same thing day before yesterday ----need to be donated to science.

As for the inflammation - I feel the same way. I have been using some herbals for inflammation and I'm not in near as much pain. It also works on the autoimmune system and helps with cytokines. I'm using ginger, tumeric, astragulus and just got in a mushroom complex that I just started. But, the first three herbs in two weeks I can notice a difference.

Issie

[jangle]

So I take it that steroid shots seemed to produce good effects in people. Do you think a reasonable method for diagnosing autoimmune POTS would be to just receive a dose and see how it affects symptoms/HR?

[issie]

I think that most of us here that have taken some sort of thing for the autoimmune issues - have had some definite markers/test/symptoms of an autoimmune disorder. I'm not thinking any doctor would randomly give you an injection --because you wonder if it would help. He might would get in trouble for that. But, if you have some test or symptoms of some sort of attack on your body - then maybe. (Not thinking they would think POTS would qualify as a reason. Since it's so new in the research on this. But, maybe if all else has been exhausted - than you might find one willing to give it a go.)

Issie

[kluesyk]

It would seem to be reasonable to me....but that which the doctors do not understand they do not embrace. You will only find one willing to look outside of the acceptible box (you should fit into, which we don't) only IF they are interested in research themselves.

I do believe that POTS is multi faceted in it's causes and therefore very difficult to find one solution, however when you have a dramatic improvement after a steriod shot (much more than, "Oh it made me feel better and I had more energy") then I DO feel it indicates autoimmune. I am able to talk longer without shortness of breath, can walk farther without the increase in HR and BP, can use my muscles more without the horrible shaking and pain that happens after. But I know my repreave is limited. I always go back to where I was in 2 1/2 weeks.

[issie]

kluesyk,

Have you tried oral steroids of cortisol or transdermal?

Issie

[kluesyk]

Issie,

I take a replacement dose (30mg) of (hydrocortisone)cortisol for the adrenal failure (addison's) which I absorb better sublingually.

I did not do well on prednisone (had too many side effects). My dr had me add extra medrol 2mg along with the hydrocortisone which helped for a couple of weeks then I got abdominal swelling, weight gain (all symtoms of too much). I haven't tried the transdermal.

Is it a patch?

[jangle]

What I would give for a doctor who would fight for me.

[issie]

What I would give for a doctor who would fight for me.

Jangle, your first post came through on e-mail (the one you deleted and replaced this one with) ----ha!ha! Sorry, darlin ---just be patient and keep fighting. You will figure it out and you will get some answers. We all are fighting and it's not easy and it's very tiring. Maybe you could try some of the herbals and see if they make a difference. If they do then maybe it will be enough of a difference.

Why'd you come off the Lorsartan?

Issie

[issie]

Issie,

I take a replacement dose (30mg) of (hydrocortisone)cortisol for the adrenal failure (addison's) which I absorb better sublingually.

I did not do well on prednisone (had too many side effects). My dr had me add extra medrol 2mg along with the hydrocortisone which helped for a couple of weeks then I got abdominal swelling, weight gain (all symtoms of too much). I haven't tried the transdermal.

Is it a patch?

I didn't do real well on the prednisone either. I took cortisol orally a couple of times, it was a long time ago and I tested low for cortisol back then - with a saliva test. Most endo's won't treat you unless you're in complete failure - but, I had a doc who was into alternative testing and believed it to be more accurate. I haven't been tested in awhile for that issue, but believe it is still there and a problem.

The transdermal form of it has to be compounded by a pharmacy and I was talking with a pharmacist (when I had my ideas about aldosterone deficiency and using it transdermal), he wondered if transdermal cortisol might not be a better option. So, wondering about this and with the latest info I'm uncovering in regard to autoimmune issues - wondering if this might not be a good thing to try. Now, to find someone willing to let you. (See Jangle, you're not alone in this.) I know the pharmacy I use for my transdermal hormones - also make the transdermal cortisol. It by passes the liver and would go into the blood stream more like an injection would - doesn't have to bypass the liver like oral.

Issie