View Full Version : autoimmune disorders and ADHD


speedo
06-06-09, 02:24 PM
Last December I was diagnosed with cryoglobulinemia, a rare autoimmune disorder. What I discovered as time passed was that my ADHD was impacted significantly in a couple of ways.

I had to learn to accept my diagnosis, and I had to educate myself about the disorder itself, as well as the treatment and medications available. Another thing that happened was that as a side effect of the medications that were given to me to suppress my immune system (to keep it from attacking my own body), my ADHD medications seemed to be less effective.

Lastly there were new psychological issues that come with having a life threatening disorder. I had more anxiety, and I tended to be a little depressed.... probably a side effect of the prednisone that I take every day.
...and my OCD seems to be worse than ever.

So, my question is: Is there anyone else on the forums who has an autoimmune vasculitis, like wegener's granulomatosis or cryoglobulinemia ? have your experiences been similar to mine ? Did it impact the way your meds work and force a change in your medication schedule ? If, so what were the changes?... etc, etc.

Me :D

γ-quantum
06-08-09, 09:08 AM
i dont have autoimmune vasculitis, but i have autoimmune thyroid issues - hashimoto thyreoditis.

as only my thyroid is being destroyed by my body, and a thyroid can be easily replaced with medication, i am not taking cortisone or immune supressants, so i cannot really comment on that...

i think it is important to know about your disease and try to tell if the symptoms you are experiencing are from your autoimmune disease or from adhd or from the medications.

for example, i tried concerta (switching from ritalin), and thought i got too tired from it. i also noticed my blood pressure is too low, so i quit my hypertension medication, and tried strattera again. that made it better, but now i am still tired even without the hypertension meds, and i noticed my blood pressure is really, REALLY low, (110 / 70 this morning - this is still fine, but compared to my usual blood pressure, it's low)... and i'm completely off the hypertension meds for three days now.

this, in addition with more heart palpations, very cold hand and feet (which i usually dont have when it's over 23 degrees celcius in my room, like now), and fatigue, i guess i have to look into hypothyreodism, as that is becoming more likely than side-effects from adhd medication.


so, yeah, the only advice i can give you is... try and find out what causes the symptoms you experience. i was on likely a wrong path with concerta -> makes me calm -> lowers blood pressure -> gets me tried, as it seems, but it took until last weekend for me to notice that.


ps: my mother had SLE (systemic lupus erythematodes) as well as hashimoto, and as i had high ANA (anti-nucleus antibodies) with homogen fluorescence and joint pain a couple of times (but they just vanished again every time, oddly), it could be that i got an (inactive) SLE, too. it's a genetic disease, after all. i really, really hope i dont, but i'll have them antibodies checked again next month, as my TG-antibodies (thyroid) are rising and rising since months, so there is autoimmune activity. in case i ever need cortisol or something, i'll make sure to post on these forums / remember your thread.


i dont know what adhd medication you are on, but maybe a different kind would help you better in these times. i heard that, compared to drugs, methylphenidate / ritalin works more like cocaine, while adderall etc. work more like speed. so, my guess is that adderall could POSSIBLY relief physical fatigue better than ritalin, for example... though that's a bit of an off-label use, in theory.

feeling depressed may be due to your diagnosis as well as it may be a side-effect of your medication; i can hardly tell. maybe some sort of antidepressant - maybe a noradrenaline reuptake inhibitor that does not make you slow and drowsy, or maybe an SSRI because of your anxiety, i dont know - would be good, at least for a while until you got over the first 'shock' of the diagnosis? i guess it could be good to discuss this with your doctor.

do you sleep okay despite the diagnosis? if i dont get enough sleep, i get more 'ocd' than i was before (i am not diagnosed ocd, but i often double-check things because i confuse days in my calender, numbers in my phone, etc.). maybe a sleeping aid, taken for a short time, can help - or an antidepressant, taken only at night, which has the advantage of not being addictive like typical hypnotics (ambien etc.).

speedo
06-08-09, 05:42 PM
I'm not on cortisone, I'm on prednisone... still a cortical steroid....

I've been having tons of anxiety and my doc suggested that I tried increasing my dose of wellbutrin... which made the anxiety worse. So I reduced my dose of wellbutrin and the anxiety is a lot better. I think the wellbutrin is causing me to cycle slowly, over a period of days. This is a new feature for me... My doc said that the prednisone might cause some mood instability. I can increase my risperdal if I need to but I don't want to do that unless I absolutely must. I'm going to increase my morning dose of tenex to see if that helps with the anxiety. It has in the past....

I'm surprised that your doctor did not put you on steroids or an immunosuppressant for your autoimmune disorder. Oh well steroids are such a mixed blessing. Be glad that you don't have to deal with it...

Me :D

γ-quantum
06-10-09, 06:43 AM
I'm surprised that your doctor did not put you on steroids or an immunosuppressant for your autoimmune disorder.

well, that's because the side-effects of steroids would BY FAR be worse than the disease itself; if the hormone levels are under control, it doesnt really matter that the thyroid is being destroyed. you can just remove the thyroid (surgery or radioiodinetherapy) and replace it with medication; it's comparable to having diabetes, i think.

anyway, how are you doing? did you change any of your meds?

ps: oops, sorry about the prednisone. i thought that was the brand name for a cortisone, didnt check.

crazycat1990
09-01-09, 07:04 AM
I am in the process of possibly being diagnosed with some sort of autoimmune disorder, though I don't know what!

I have a lot of symtpoms of hyperthyroidism, had a blood test recently but my thyroid levels are bang in the middle. So it's not that.

This left me feeling pretty depressed and lost, because it would have made so much sense! Would have explained my symptoms and everything :(

Having more tests done next week. I'm having:

ECG for my heart
Urea & electrolytes & creatinine test
Liver function test
Full blood count
ESR test

Fun! :p

The symptoms I have are rapid heart rate, unintentional weight loss, occassional palpitations, sometimes feeling like I'm not getting enough air and need to breathe deeper, and sometimes my hands/arms feel weak and shaky (tremor).

All of these except the weight loss started since I fainted on the tube in London. The weight loss started a few months ago - well I don't know for sure, but it was a few months ago that it was first noticed, because I looked thin. I may have been losing weight slowly for the whole year for all I know! But it did seem pretty rapid - within a few weeks of first noticing, I lost even more weight!
The fainting could easily be nothing to worry about - it's the tube, it always gets ridiculously hot down there, and it was the morning rush hour, AND it was even busier because the overground trains had major problems.
But it's just so odd that since it happened, I have these heart and breathing problems! Infact before I fainted my heart rate went up and I felt shaky and short of breath. It's almost like the symptoms I have had since are minor versions of what I felt before I fainted...if that makes any sense! :o

It's not any meds I'm taking, because the only meds I take are Concerta but the symptoms started before I started it, waaaay before i started it. And I'm on the mini-Pill, but my doc said it wouldn't cause those symptoms...and they started before I went on it anyway.

So it's a bit of a mystery! I just hope it's nothing too serious :(

Oh and for the past few weeks I haven't been able to sleep like I normally do. Normally I fall asleep within minutes and sleep fine. But lately I just feel so awake all night, and I often wake up during the night. I know this is a common side effect of ADHD meds but I've been on them for nearly 2 months! I forgot to mention it to the doc but it could just be the meds, or it could be cos I have so much on my mind right now. Having said that, this isn't the first time in my life I'd have loads on my mind but it's never affected my sleep in the past. :confused:

Addr68
09-01-09, 10:40 AM
Hey speedo, my thoughts go out to you :)

I dont have have an autoimmune disorder, but I sure went through a lot of testing by many specialist to find that out.. I know this is trying times, I can only partly imagine what your going through. We are here for you speedo :)

I have been given an unoffical dx for a rare neuro syndrome..but its benign.

I found out more this month..

I will be on meds for the rest of my life..no cure, only treatments..


Sounds like you have done a lot of research on your dx...This is good to know.

I found a site that covers all rare disorders, diseases and syndrome. You might of run across this page before, but if I may..I like to post this link on your thread..

In my thoughts speedo and everyone else dealing with what speedo is going through... hope

Bry :)

"The NORD Rare Disease Support Community connects patients, families, friends and caregivers for support and inspiration... "

Link:

http://www.inspire.com/groups/rare-disease/

speedo
09-01-09, 05:35 PM
In the time since I first posted my ADHD meds have been readjusted. I've doubled my dose of tenex and stopped taking wellbutrin as it was not helping at all and seemed to be causing problems with anxiety that worsened my ocd. Things are a lot better now.

I've been adapting and learning to live with having an autoimmune disorder. It is an exercise in vigilance as I have to be alert to the early symptoms of vasculitis in order to seek treatment and thus avoid having all of the nasty problems that come with it. So far I've had one flareup and was able to adjust my medication to compensate for it.

My ADHD is doing a lot better on my new medication schedule. the oddity of having adhd and a new "incurable" disorder makes me pause to think. It's just that now I have one disorder (ADHD) that sometimes makes my life a little complicated, and now I have this autoimmune thing that totally dominates my life. I'm one of the lucky ones, I don't have a lot of the severe complications that some people have and I count my blessings there....It's just that it has taken some serious adjustment to come to terms with it all. I feel good for now, so life is good so far. I'm really grateful to have these forums as a place to share my experience and to read about the experience of others.


Me :D

Addr68
09-01-09, 06:28 PM
speedo: I feel good for now, so life is good so far. I'm really grateful to have these forums as a place to share my experience and to read about the experience of others.


Cheers! That is something to smile about :)

Imnapl
09-03-09, 01:47 PM
... My doc said that the prednisone might cause some mood instability.I can vouch for that. My family physician prescribed high doses of prednisone for a major flare in my inflammatory arthritis because he hadn't yet received the report from the specialist. I gained nine pounds in a five day period - talk about your fluid retention - which increased my joint pain and I couldn't sleep for the last two days. The worst part was I felt like I was going to seriously lose it mentally and emotionally. I have been on several auto-immune suppressant medications and none of them have messed with my mind except prednisone.

Imnapl
09-03-09, 02:17 PM
So, my question is: Is there anyone else on the forums who has an autoimmune vasculitis, like wegener's granulomatosis or cryoglobulinemia ? have your experiences been similar to mine ? Did it impact the way your meds work and force a change in your medication schedule ? If, so what were the changes?... etc, etc.

Me :DSpeedo, I am so sorry you have been ill.

I have inflammatory arthritis and have probably been experiencing a form of transitory vasculitis - according to the research I've done. Mine may be caused from the medications I am taking.

My disease is aggressive and stubborn, but in order to qualify for support for biologics, one must "fail" other medications in a set criteria which takes time. Fortunately, I have a friend who has the same disease and because she does not have ADHD, I can bounce things off her and figure out whether it's ADHD or arthritis related.

Because I am on summer break and don't take my Ritalin regularly, I had to start being more conscientious about taking it on schedule to see if lack of Ritalin was causing mental fatigue. When I was pretty sure it was inflammation related, I had a long talk with my friend who has been really struggling with the mental fatigue. She and I share the same symptoms, but I have ADHD and she does not; I am taking stimulant medication and she is not.

I have started a biological and even though it has only been a few weeks, the increased mental and physical energy is already noticeable. Fingers crossed it puts this puppy to sleep.

Speedo, would it help if we started a social group?

speedo
09-03-09, 06:27 PM
Imnappl
I've several comments on your post.

First of all, rheumatoid arthritis can cause vasculitis. If you are not sure whether or not your arthritis is caused by an autoimmune condition or not, I'd recommend getting it sorted out as the treatment is vastly different between osteoarthritis and rheumatoid arthritis.

Yes it is possible to have a hypersensitivity vasculitis caused by medication, toxic substances, and even some vaccines, so it is a good idea to get that sorted out if you can.

What you are calling "biologicals" I assume are naturopathic medications. You may want to be careful there as most of the so-called "natural" treatments are untested and can have significant risks, and questionable results. Johns Hopkins university is a leading authority on vasculitis and they say that diet is not treatment for vasculitis and they recommend a heart-healthy diet.

The thing that is properly called a "biological" in vasculits treatment are some of the newer treatments involving designer antibodies (such as rituximab) that are designed to preen unwanted cells from the immune system. These biologicals are in use in the treatment of a number of autoimmune disorders with varying results. they show promise for a low side effect profile treatment for autoimmunity.

At present, the gold standard for treating autoimme vasculitis is immunosuppression using drugs like prednisone, cyclophosphamide, imuran, methotrexate, as well as antimalarial drugs, and in severe cases plasmapheresis is sometimes opted for.

Oh and Johns Hopkins is working on a cure for autoimmune disorders. It basically involves rebuilding the patients immune system from scratch using stem cells collected from bone marrow. A few people with Multiple Sclerosis have had the treatment and appear to be "cured", but it is a long way from being generally available.


If you have a life threatening vasculitis, the homeopathic treatments are simply not on the menu. They are too speculative, the risks are not known and the cost of opting for the wrong treatment is just too high. Not to mention that they really don't work.....

If you are looking to start a social group, I suppose we could. I'm already active on a number of boards, but there is always room for one more.

Recent news that there may be a connection between autism and autoimmunity has researchers looking at the possibility of a connection between autoimmune disease and a variety of neuropsychological disorders. It will be interesting to see what turns up in the future. We already know about PANDAS causing OCD. It might be an interesting twist if it turns out there is a connection between autoimmunity and ADHD . :p

Me :D



Speedo, I am so sorry you have been ill.

I have inflammatory arthritis and have probably been experiencing a form of transitory vasculitis - according to the research I've done. Mine may be caused from the medications I am taking.

My disease is aggressive and stubborn, but in order to qualify for support for biologics, one must "fail" other medications in a set criteria which takes time. Fortunately, I have a friend who has the same disease and because she does not have ADHD, I can bounce things off her and figure out whether it's ADHD or arthritis related.

Because I am on summer break and don't take my Ritalin regularly, I had to start being more conscientious about taking it on schedule to see if lack of Ritalin was causing mental fatigue. When I was pretty sure it was inflammation related, I had a long talk with my friend who has been really struggling with the mental fatigue. She and I share the same symptoms, but I have ADHD and she does not; I am taking stimulant medication and she is not.

I have started a biological and even though it has only been a few weeks, the increased mental and physical energy is already noticeable. Fingers crossed it puts this puppy to sleep.

Speedo, would it help if we started a social group?

Imnapl
09-04-09, 03:43 PM
Speedo, here is some information about biologic response modifiers (http://arthritis.about.com/od/brms/a/TNFalphablocker.htm). Rheumatoid arthritis is not the only inflammatory arthritis, but it is the most common. Inflammatory arthritis (http://www.merck.com/mmhe/sec05/ch066/ch066c.html) is an autoimmune response that affects the joints and other organs.