Imuran and Vasculits Questions

Has anyone had good luck, bad luck with Imuran?  Has anyone had it lower their ANA?  I've been on it almost three weeks and the doctor says it could take 3-4 months to kick in.

Because of the Lupus I have Vasculitis around my heart (was in the hospital 4 days) and I am being treated with Prednisone, Digoxin, Toprol XL, Celebrex and Imuran.  I read that Vasculitis around the heart is not common. My heart races if I do any activity and I mean it could be as simple as walking across the room sometimes.  My pulse can easily go up to 150 or 160 just getting up off the couch and walking to the kitchen.  Oh and my ANA is 1:1280 and my sed rate is up.  The Cardiologist says the inflamation (inflammation) is causing the Vasculitis and also affecting the electrical system of my heart.  He can help control it (somewhat) with the heart meds but the only way to make it stop is to get the Lupus under control which we haven't been successful at for the last year and a half.  I hope we are on the right track now with Imuran.  I would love to hear about anyones experiences with Vasculitis and/or Imuran.  

Oh and my neck keeps swelling up and causing me to feel like I am choking, even though I am not.  I am thinking from the inflamation (inflammation) and/or steroid use??  Anyone else feel like they are choking sometimes?

Thanks,
Joni

[mercygracious]

Hi Joni,

I just put up a post on Vasculitis.  I am very concerned that this is what I have possibly with Lupus or without (not sure) and have yet to get any kind of dx from docs.  have been sick since 2003.  What parts of your body are affected?  I have a systemic type problem consisting of brain down to toes and everything in between.  I have had a fluctuating ANA , really really high 2 or 3 times and low the other couple of times.  I had an elevated sed rate of about 10 points last year at one time but now that is back to normal.  I had a rash on arms and legs last year.  Have you had a rash?  I have felt generally very ill several times over the past year.  I feel feverish alot but not actually running a temperature just get real hot.  Also, I have strange tingling throughout my body which kind of has a hurt to it along with some kind of a chill like sensation.  I have had strange sensations throughout my body and have all over twitching, some minor and other very large that shows through the skin.  My legs get extremely heavy, tired , weak and painful along with muscle cramps and vibrations and movement.  Most recently though I have been experiencing a strong pulse throughout my entire body and it is though I am always aware of my heart beat.  My heart races really fast sometimes and I have been having alot of fluttering in and around my heart which scares me to death.  I have felt feelings like something is being constricted or clenched in my arms, legs and abdomen area.  My symptoms started with tingling in my legs and arms along with pins and needles and burning sensations and then my brain started tingling, burning and itching.  I had balance problems, weakness in my legs, slurred speech at times , fatigue on occassion but rarely , maybe once a year or so and so on and so forth.  I went to Mayo clinic and they diaganosed me with somatoform disorder which is not the right diagnosis.  This is the diagnosis they give you when they can't come up with anything.  I do have some small white matter spots on my brain in different areas.  My MS doc doesnt think it is MS.  All my symptoms point to VASCULITIS!!!!  I am terrified that they are just letting me get worse as I know this can be a very deadly disease and sometimes I feel as though I won't live much longer because of all of this.  Any help by you or anyone else is GREATLY APPRECIATED!!!!!!!  GOD BLESS EVERYONE!!! WE ALL NEED TO PRAY FOR EACH OTHER!!!!  THANK YOU!!!!!

[mercygracious]

Also Joni, what are some of your symptoms if not all of your symptoms and how were you  dx'd with Lupus and then with Vasculitis?  I have heard that most of the time they have to do a biopsy on the affected area but I asked one doc about this and they wouldn't agree to do it.  I am going to ask my neurologist.  have been to 2 Rheumatologist that offered me no support whatsoever. I think once every one finds out you have been somewhere like Mayo clinic they don't want to fool with you anymore because they believe what Mayo says.  Really makes me wish I didn't go.  I guess I just need to stop telling them too.  You try to be honest and where does it get you...Ugh!!!  So frustrating!!!!

[Joni686]

I have been ill since July '07.  It started with extreme fatigue and slowly other symptoms have appeared.  I seem to be getting worse, not better, despite all the doctors I have seen, meds I have taken and my hard headed desire to find answers and get well.  I have not been able to work for the last year and a half.  That has been hard enough.  I have had a positive ANA of 1:1280 for the whole year and a half.  I continually have fatigue, pains in different parts of my body, dizziness, swelling in joints, brain fog, terrible memory, can't find words at times when in the middle of a sentence, palpatations, irregular heart beat (missed beat according to cardiologist), hypothyroidism, osteopenia, buldging discs and various side effects from medications I am on.  For instance my neck and shoulders are swollen right now from steroids and I have a choking feeling almost constantly.  I was on cellcept (chemo) to try to lower my ANA but I had an allergic reaction and my face and neck swelled very big.  I had to stop taking it.  Then starting in November this last year I started having heart palpatations and my pulse was in the 170's.  I had to go to the hospital and I had low sodium and low potassium, so low I had to be in the hospital for four days.  Once month later (3 weeks ago) my pulse rate went up again evrytime I got up out of bed or off the couch.  My pulse was 166 and I had to go to the ER.  I was in there for three days before they figured out I have vasculitis around my heart.  It is causing my heart to have a difficult time beating if I do any activity even as small as walking to the kitchen from the couch.  They gave me strong IV steroids and put me on Imuran (chemo) to lower the ANA but the Imuran takes 3-4 months possibly to work.  At this point it is a daily struggle to even take a bath and wahs my hair withouth my heart rate going so high I almost pass out.  It could also cause a heart attack if I am not careful.  You can get vasculitis anywhere and I read that having it around your heart in very uncommon.  I guess I am the lucky one.
One thing I have learned is to be an advocate for myself.  I have notebooks full of info. and a calendar in which I write everything that happened that day.  If I don't trust a doctor, I find a new one and I finally think I have found a few good ones.  Surround yourself with a good Rheumy, Internal Med. Doc, Family Practitioner, and Neurologist.  You have to create your own team.  Just this week I found a good Wellness Doctor and I am also taking suppliments she has.  You must let all your doctors know what you are on though.  Oh and the wellness doc was the one to find my hypothyroidism.  Nobosy else found it this whole last year,  Honestly, I am in a real funk tonight and I feel ready to give up because I can't do anything but sit around and I couldn't even go tot the pharmacy for my meds today.  But you really can't give up and you have to fight for the right doctors and the right dx.
Good luck. I am here if you want to talk.
Joni

[mercygracious]

Joni,  I can't believe it .  I have finally found someone with the same kinds of symptoms I have.  I just couldn't believe it when I read your words.  Tears swelled up in my eyes.  I wish I could meet you in person to discuss this diagnosis.  I like you have been through so much.  I really want to stay in touch with you and hopefully we can confide in one another and find some kind of peace of mind... if there is such a thing.  Joni, my thyroid went crazy on me early in 2006 and I am just now finding out about the ostopenia.   Gosh, there is so much I have to say and so many things I want to ask that now that I have found you I don't even know where to start.  I have known for a long time that this is what I have but I can't get the dx.  What heart test did they perform on you to decide that is what you had?  Was it simply an xray of your heart?  I like you am having the exact same problems with my heart.  Do you  have a strong, forceful pulse through your body or did I already ask that(lol, if I did forgive me).  Do you come online often I would love to talk with you further about all of this.  Please let me know!!!!  I am so thankful I found you!!!!!!!!!!!!!  :)  PS.  Joni what kind of vasculitis do they say it is???

[Joni686]

I am glad we found each other too.  I have had no other contact with anyone that has or has had vasculitis.  Mine is around my heart and it is keeping me from doing anything other than lay around.  I am very tired of it and very tored of everything right now.  I have really had a difficult time (physically and emotionally) the last couple of weeks and mentally it is starting to really wear on me.  I am so tired tonight and I slept all day.  I don't want you to feel like I am putting you off but can we try to talk more tomorrow?  I think all these meds are keeping me asleep right now.  I just took half of one of my heart meds and am going to do the same tomorrow.  In order to keep my heart rate down to a safe level I am having to take two heart meds but they also lower my blood pressure and then I sleep all the time.  My boyfriend is worried I won't wake up because in the morning my blood pressure is like 80/45 which is too low but my pulse can shoot up to 160 if I take a bath or do any activity,  I think I have been pretty tough for the last year and a half but I am feeling very tired right now.  Can we chat on Saturday?  Take care.  PM me if you want and I will answer all the questions I can.  God Bless....  Joni

[mercygracious]

Hey Joni,

I have been doing more research on vasculitis and have found that there first line of therapy is usually Cytoxan and prednisone combo.  Then if this works good they usually switch you over to Imuran but only once the Cytoxan is showing alot of improvement.  They don't like you to stay on it too long because of the side effects of course like anything else but the vasculitis foundation website offers good info and links and I can provide you with other good websites if you would like.  Also you need to talk to kygirl59 she has vasculitis and she is on the autoimmune website.  She states that she is on Cytoxan and has taken it in the past when she had flares as she must have had the Vasculitis for a long time and her hair is falling out on the Cytoxan .  I told her she may want to try Imuran as it sounded as though she had tried just about everything else.  I told her about you as well.  Hope this helps a little.  :)
Your Friend,
Mercy

[Joni686]

Thank you so much.  You're a sweetheart.  I will send kygirl59 a message and talk to her.  Yes I have read about the cytoxin and steroid combination.  I was relieved to read that my doctor is doing the exact thing it says to online.  From what I was told Imuran is along the same line as Cytoxin but maybe not the bad side effects.  My doctor knows that I am freaked out about chemo type drugs and she tries to keep me on drugs that will help but not make me completely so sick that I give up.  It's funny because I have been sick since July of '07 and it has been difficult but until this last time around with the vasculitis and last week finding out I still have it and it may take 3-4 months to get it under control well that's when it really seemed to hit me and my boyfriend that I am really sick.  Before that the lupus was a lot of fatigue, pains etc.  But when it affects your heart it really wakes you up and makes you believe it's for real.  I still don't know what to do for my boyfriend.  He is having such a hard time and is so depressed because of how sick I have been.  I think the only thing that will help him is me getting better and I can't make that happen, at least not right now.
Anyway, thanks for looking all that stuff up for me sweetie.  You are awesome.
Tell me how you are doing.  Send me a message so we can talk aside from these posts.
Joni

[shelsta81]

Hi,
I have had lupus (or been dx since 2006) I have the same symptoms with the heart palpitations & the tiredness...hard to get things done etc. I was put on Imuran a few months ago, but had a few reactions. My liver enzymes went crazy, so just make sure you get your blood checked very frequently. My doc had me going every other week. And I had an allergic rx to it so they took me off. I do hope you have more luck with it than I did & stay strong!

I do think I am going to try and find a new rheumy tho b/c it always seems like I am bothering him when I am there. And i do feel like there is something else wrong that he doesn't even bother to try and find. Oh well wish me luck with that :) I hope you feel better soon

Michele

[Joni686]

Michele,
Thank you for the heads up on checking the liver enzymes.  When I got out of the hospital this last time after being in for four days my I Internest said for me to come back in a month for blood work.  Well, I had to go back within the first two weeks because I had/have a swollen neck.  She sent me for an ultrasound this last Friday and I guess I will hear about it by Tuesday or so.  Anyway, she has been awesome but this last time I was in her office I got a feeling that I was bothering her.  You know that gut feeling.  Anyway, I asked her when I should come back and she said 3-4 months.  I didn't say anything at the time because I didn't want to sound like I was whinning but I have read and she even told me we needed to see each other often and do blood work.  Now we are down to every 3-4 months?  I don't understand.  I know it takes the Imuran 3-4 months to start working, at least that's what she said but like you said it could be affecting other things like my red blood cells etc.  How long did the Imuran take to start working on you?  What are you on now?

Good luck finding a new Rheumy.  I have changed many times and I have learned you have to be your own advocate through this because you are the one that knows your body the best and you know when something is not right.  I keep copies of all my bloodwork etc. and I have even started putting them on a Medical USB that hangs on my keychain so if I am out somewhere alone and something happens or I have to go to a new doc. they will have everything on that USB and can look right at all my history.

God Bless,
Joni