Imuran?
 

Hello all! My neuro just got through telling me a bit about Imuran - apparently Cellcept doesn't do it for me - any thoughts about Imuran?

Thanks!
Erin

I have a friend who has been on it for a long LONG time and she loves it. I know one woman who had such a bad liver reaction to it that she became seriously ill and had to be hospitalized. I know others who are in between those reactions. As for its effectiveness with reducing MG symptoms...that varies as well.

Did your neuro tell you that it takes 9-12 months to even START to see good things with it (the bad stuff will show earlier)? Why did your neuro think the CC wasn't working? You haven't been on it very long (it can take 6-9 mos at 2-3000 mg a day dosage to start to see results) and you weren't having problems on it, were you?

Good luck!

Missy

Hi Erin,
I fully agree with Missygirl about the long onset of action of certain medications, especially the immunodepressors…
Imuran has been (and still is?) the more widely used long term treatment for MG.
You may consult this link to gey more info:
http://neuromuscular.wustl.edu/mtime/mgrx.html
Maurice.

Hey Missy!
 

Your friend with the problems - what were they? Do you think 150 mgs to start is high? You've dealt with this for a long time and I know you have the knowledge..........

Yep, Dr, I told me it would take a long time - not good news considering he bumped me back up to 60 mgs a day of pred - just got over my sideburns and fat face.......was starting to look human again!

I wasn;t having any bad reactions - in fact I was down to 15 mgs a day of pred, then I just kept getting sick and staying sick and my energy really tanked, but isn;t that part of MG - the energy thing?

Just had 5 days of phoresis - it sucked, but it did make me feel better.....now I just have to deal with it and not over do it again, otherwise my butt will be back @ the hosp again! There will soon be a Mike and ERin Hermes wing @ the Methodist - lol!

There was a lot of scar tissue in my jug from the last exchange and one of the nurses told me it was due to our disease and our high platelets - have you heard that?

I need to see an internist and ask him what to do about it.

Apparently my blood pressure is way low too, so I have to see a few other drs - the fun just never ends!!!!

How are you doing? Are you still feeling better?

:hug:Erin:hug:

Hey Maurice!
 

THanks for the info! How are you doing? Are you still feeling pretty good? You are on Imuran, right? Do you like it? I was told it was kind of a chemo drug - strange!!!!

I liked the Cellcept, but I just kept getting sick and my neuro felt it wasn;t doing enough for me.......sigh!

I was down to 15 mgs of pred @ one point, but after this last stay, he bumped me back to 60, so I"m gearing up for the mania..........hate that!!!

:hug:ERin:hug:

Some people can't metabolize Imuran and it builds up in your liver. there is a fairly easy blood test they can run before a person starts the medication that can determine if you have a genetic mutation to the enzyme thiopurine
S-methyltransferase (TPMT) that metabolizes thiopurines. If you have poor metabolism, the Imuran builds up and becomes toxic and can be very serious. There is a simple blood test that determines if you have the defective gene. They should do the blood test before starting the medication...in my case they didn't. I'm off the Imuran and started CellCept a year and a half ago. i don't think it is working
Here is a link that might explain the TPMT enzyme better.
http://www.specialtylabs.com/educati...DF/TN_1196.pdf

Hi Erin,
I'm on Imuran (well, the generic version Azathioprine) and take 150mg a day. I haven't had ANY negative side effects from it. It took about 7 months to notice any results though and I still experience weakness at times so it hasn't sent me into a medically-controlled remission or anything. I'm also still on 40 mg of pred every second day. I was trying to reduce further but the neuro wasn't happy as some of symptoms were becoming more obvious. The only thing you might want to consider with Imuran is the need for regular blood tests -I know how much you hate your needles! At first I had to go every week, then monthly and now (after a year) I'm down to once every three months. Thankfully all my blood work has been normal! Good luck with whatever you decide!
~Kathy

HEy Kathy!
 

I;ve only been on the Imuran for a few days now - can't wait for it to kick in!

Since I've been home, I've been trying to catch up on all the sleep I lost while in the hospital, but have been able to get some chores done and take care of my fellas..........

Ran into a dog today and now have a new pet - unfortunately iy is a pit bull mix - she seems really sweet and passive, but I just do not like the breed - I have 4 other little dogs that went BONKERS when they saw her and tried to attack her.......she was so emaciated and grateful to be picked up that she put her head on my lap in the car......really cute.....

I'm still weary though........

My son is totally in love with her and she seems to feel the same way - plus she is trained - something my little dogs are not!

I plan on getting her a big crate tomorrow for night time....I am glad I saw her today b.c tonight is going to be cold (by SA's standards) 32 degrees and she is skin and bone........

It stinks that I'm back up to 60 but I know it will go down really soon - the nurses were shocked @ how quickly I responded in the hospital - good news!!!!

How are you?

Hugs!
Erin

Hey Gabe!
 

Thanks for the info! I'm going to have to go in every week for a few months just to make sure - hate the blood work, but am finally getting used to it!

Why do you think the cellcept isn't working? How much pred are you on? Any other meds?

The hospital did tons of blood work b/4 they started me on the Imuran so I hope all goes well! Only time will tell!

How are you doing? Are you feeling better?

hugs!
Erin

Hey Erin
 

No, I' m not on Imuran but on Cellcept (1.5 g/d)…
My neurologist nephew told me he usually gets good results with Imuran.
I' m doing rather fine, just that leg weakness which limits my walking autonomy, specially when stairs have to be climbed…but compared to some others, I' m privileged!
I still take 15 mg/d Pred, I have some blood and bone density tests scheduled for next week with an appointment with my neuro, I hope she will continue the steroid taper, maybe 13 mg next month?
I have also planned for February an eye surgery (cataract, steroid side effect…) and I see my ophtalmo to-morrow to set the details.
I' m glad to read that plasma exchange works for you but it is difficult for me to understand the needle phobia some of you have, but once again, I must be privileged as I have always heard "oh you have large veins, that will be easy…"
Maurice.

I was on Imuran for quite a while with good results. Waaaaay better with the side effects than the Prednisone.

Alas....it was too good to be true....eventually I became too anemic on my dosage......

Just keep on top of your regular bloodwork - there are a LOT of secrets in that red gold that we have.

:)

Lydia

Hey there!
 

Were you on the ferrous sulfate while you were on the Imuran? Apparently, I was so anemic that I needed a blood transfusion and my ferritin level was @ 10 @ ONE POINT........

I still take the ferrous sulfate now - 2 a day - and am going to need blood work every week for the next couple of months - yuck!!!!

I am really hoping this will work - my body is already starting to swell a lot and my hands and feet hurt like hell!!!!

I hate the fact that I'm back up to 60, but know it will all work out in the long run........

How are YOU? Are you feeling well? How is your family?

Take care!
ERin:D

Hi Erin - Sorry it has taken me so long to respond. I do not know why CellCept isn't working. Guess it doesn't for everyone. I am off Prednisone - usually wind up back on it when it gets hot and humid - I can't imagine living in Texas - I would be taking it all of the time - I guess that is an advatage to living in the frozen wasteland of Minnesota. I get IViG every three weeks and that is what keeps me going. I don't need it quite as often in the Winter which I am quite happy about. I have way more energy and can do a lot more when it is cold.

How are things going for you?
Gabrielle

Hi Gabrielle!
 

Hey there! I was so glad to hear from you!!!!! Yep, Texas is miserable hot - but I"ve been here my entire life and really, really love it!

My hubby is from Chicago, but he loves it here, too! The people are very friendly...........


I am so happy to hear you are off the prednisone! Awful stuff! I have a serious love/hate relationship with it - love how I feel on it - tons of energy overall - hate the side effects - swelling all over!!!!!

The Texas heat can be unbearable @ times..........:(

I hope the Imuran works.......I would really love to be able to get off the pred here soon!:D

The last plasma exchange wasn't too bad - 5 days - so hopefully it will be a much better year!!!!!

Take care!
Erin

I love the cold, too! Keep my house like a meat locker! It is the only was to get relief from my symptoms!:D