Prednisone, Imuran – is it worth the risk?

Hi Alex ~ only you can decide if something is worth the risk. As one on my docs told me “the choice is to live with prednisone or die”. I lived with prednisone for 7.5 years and it was a nightmare but I’m still here! I was told that I would never get off of it but it’s now been 5 years 😀 Also, I did Imuran and a chemo drug. Not pleasant but appeared to be necessary . . .

The only Rx I take now is neurontin. I manage the rest of me with diet (the kinds of foods I eat, like organic as much as possible, etc) supplements, accupuncture, yoga and determination! I never stop researching and “listening” for things that can make a quality-of-life difference.

I have GBS and never had IvIg so cannot speak to CIDP. Good luck 🙂

Hi Alex,

My CIDP has been treated with only prednisone for 7 years. My only side effect is a permanent 20 lb weight gain. (I also take Lyrica for pain.)

Within weeks of starting the prednisone my foot drop was corrected, my coordination and stength increased and my pain diminished. My neurologist has me taking as low a dose as possible; unfortunately every time I catch a cold I have to return to a high dose and start the decreasing dosage schedule all over again.

You do need to be aware of the possible side effects, while realizing that not everyone gets all or even any of them. You will need regular checkups of your eyes and bones. Plus you will need to carefully watch your diet (avoiding the “whites” as much as possible – salt, sugar, fat, bread).

I am very lucky that prednisone has helped so long. And it is good to know that I can try other treatments when the steroids no longer work.

Good luck,
Flossie

Alex,
I have Lewis-Sumner variant, steriods don’t usual work but I tried them for about a 6 month period anyway. Was doing the solumedrol IV, 1000mg every 4 weeks. They did help a little but the screamin’ meanies I got with them wasn’t worth that little bit {not so bad for me I guess but horrid for everyone around me}. I did blood work constantly but the only real damage I received was quite a bit of bone loss {this was with calcium 600 D, 3 times a day and flosamax once a week}, and a twenty pound weight gain.
I’m now doing 1000mg of Cellcept twice a day plus IVIg every 5 weeks. The only problem I have with the treatment now is the aspetic meningitis but as long as I pretreat before the infusion I can keep that down to a dull roar. I’m not out running any races but it’s kept the CIDP to where I feel I can handle it. Everybody is so different, it’s hard to know what to try and what not to. Good luck with what ever you try.
Pattie

Hi,

I have taken both prednisone and Imuran. I was dx 4 years ago with CIDP,
my current method of treatment I have been on for the past 14 months is 50 mg of Imuran 2x’s a day and weekly IVIG infuions. At this point in the process I have been more stable and healthier since I started this regimen. Out of all the immunosupressants I have tried so far I toleratethe Imuran the best.

I have come from being a complete quad on a vent and feeding tube to being able to move freely without assistance, they even told me I would probably never walk again and breathe without the vent if I even made it through. I made it through and proved all of them wrong.

The prednisone and IVsteroids were all tried on me in the previous 10 months before I coded and had to be vented. I would rather take them then die, but unfortunatly I had bad side effects with outrageous mood swings and I gained 100lbs on my tiny petite frame of 5ft , but lost all of it and more after I quit taking them. I also did not benefit from them enough that they were worth the side effects.

Unfortunatly no one knows how you will react to either one of them until you try them, Good Luck to You.

Emily

Alex,

Though I’ve only been on imuran a short time (though, long enough apparently to see some of my hair go by the wayside) I consider it a complete quality-of-life saver.

I was considering leaving school before I started it: I was in so much pain, so swollen, so tired, I could hardly get out of bed. Though I’m on the cusp of the time takes to saturate the system to the point of working, I already feel the difference – and really feel it when I accidently forget to take it!

I’m in SO much less pain its astounding.

While I know the scary imuran stories, thus far the worst I’ve experience was three weeks of pretty unfortunate nausea (which has thankfully subsided). But given how far I’ve come, I feel that for me personally it was worth it.

Alex,

Remember that we have Chronic Inflammatory Demyelinating Polyneuropathy. The key word here is Chronic. The Immune system will continue to make its attack unless you make some type of intervention. Some are relapse/remitting, where the attack and subsequent remission happen in cycle. IVIG can significantly shorten the attack part, and hasten recovery. In fact, most people take the IVIG in a pre-emptive strike kind of way, trying to get the IVIG BEFORE the attack, lessening the effects.

IVIG was not very effective for me. But I did take both Imuran and prednisone at one time or another. The point is, if you are doing nothing to suppress the immune system, the attack will continue.

Anabloic steroids do not do the same things as prednisone. Different function.

As far as successes and failures. there are many of each on the forum. Good luck in your treatment

Dick S

Alex,
I have what you want to hear. 4 1/2 years I have been on I V I G monthly, Prednisone, Imuran and Neurontin. I have not had weight gain more than 3/4 pounds, no diabetes, and some bone loss that is covered by Actone and 500 mg calcium x3 daily. I have been blessed. I am trying to reduce the pred. My dosage started out at 80 Mg every other day. Now 4 years later I am at 36 mg e.o.d. This is an energy producer for me and difficult to reduce. When I find it keeps me awake at night, I reduce it by one mg. If I tolerate that, I reduce it one more mg. At the rate I am going I may be 125 years old before I am rid of it! The point for you is that each medication affects each person in different ways. But you will never know if you don’t try. God bless you I wish the best for you.

Alex,
What I forgot to tell you in the first message is that in the beginning I was wheelchair bound for severl months. The meds kicked in and I was walking in 4 months and driving in two or three more months. I have continued on the same regimine until May of this year after I saw Dr. Cornblath at Johns Hopkins and he confirmed what my local Neuro said . It was time to reduce meds slowly, watching for relapse. Hopefully I will be able to eventually become med free.
Mary Ann

I think there are a lot of myths around steroids. I tooki it for 6 months and it did nothing to my neuropahty, It only gave me a horrible acne that fortunately is dissapearing now, some kilos or pounds, and a horrible mood…. But prednisone has been a life saver for many, not only with CIDP, but with plenty other illnesses. Take it if your doctor prescribes it, if you see no difference in your condition after three months, then you can start thinking about an other treatment.

Regarding to Immuran, i don’t know what horror stories you’ve heard of it, but let me tell you i have been on it for three months now and all i have noticed is hair loss too… not that i like it, but i certainly don’t think that is a reason to stop taking something that helps my condition. I really recommend you take it. You just need to have your blood and your liver checked every month, to see nothing is wrong with them. If the tests come out ok, continue taking it. Good luck!

Good l