CIDP – Prednisone and IVIG
AnonymousMarch 17, 2008 at 9:38 pm
My father was recently diagnosed with CIDP. The neuro prefers to treat with prednisone and imuran (at least initially). It’s been 2.5 months and he’s now being weaned off of the prednisone. As for the imuran, the plan was that he would continue with this treatment for 18 months.
At this time, there has been no improvement and a number of negative side effects (he has fallen down several times, dizziness, loss of strength). As well, they called last week and asked him to stop the Imuran for a week (concern over the swelling in his feet and his nerve biopsy becoming infected). He was admitted to the hospital this morning (low blood pressure and low while blood cell counts). Hopefully, he’ll be released in another day or two.
I am trying to understand what’s a reasonable amount of time before seeing any improvement under this treatment scenario? Initially, the doc told my parents that they should begin to see improvement in two months. Granted, patience is not one of my strengths but there’s been no further talk of pursuing IVIG (it was discussed initially but the decision was made to go with the docs preferred course of treatment. I also sense the doc is not a fan of IVIG as a treatment option). My parents saw the doc last week and I was disappointed to learn that no discussion took place regarding “Plan B” (IVIG). While I did not expect that “Plan B” would start last week, I did expect that they would have a better understanding of “where we are in the process and when do we go with Plan B” (at least put a marker out there).
Based upon others experiences, I am interested in learning how long the prednisone/imuran treatment should take before seeing any benefits ? My father’s next appointment is not until May (I haven’t attended in the past as I am 6 hours away but am likely going to attend in May). I am keeping a positive attitude but want to ensure that we face the realities of the situation(always having a “Plan B” or a “Plan C” if necessary).
Thanks in advance for your feedback.
AnonymousMarch 17, 2008 at 9:52 pm
I think if it were me or my parents, I might want to get a second opinion just to feel better about the treatment plan. I have had instant success with IVIG. I started with that, added SoluMedrol and have now added Cellcept since the IVIG is not holding. But I am improved for about a week before regressing. Others have the IVIG and are good for weeks and months. So, I would see about consulting another neuro and suggest a trial of IVIG to see if it helps. I think the Imuran like the Cellcept takes a while to be effective. At least that is what I have understood. Good luck!
AnonymousMarch 17, 2008 at 11:31 pm
You need to tell your parents that they need to get a 2nd opinion. Let them know that there is absolutely nothing wrong with getting a 2nd opinion & it is expected in the medical community.
I have some concerns about the dr putting your father on Imuran right away. The usual course of treatment for CIDP is with IVIG then steroids, or steroids then IVIG, or a combination of the 2. If that does not get the desired results then drugs like Cellcept, Imuran & Methotrexate are added in conjunction with IVIG and/or steroids.
Steroids & IVIG are considered a first line defense in treating CIDP. If they don’t work then they “heavy duty” medications are called in. It seems that this dr has skipped a few steps in the normal treatment protocol.
There are some very serious risks associated with Imuran, especially when it is taken long term. If this dr knows anything about CIDP then he should know that it is a chronic condition & there are NO short term treatments for this disease. Putting a patient on a drug that has been known to cause cancer when used long term first just seems reckless to me.
I did a bit of research on Imuran & read that it takes 4-8 months for the drug to take effect. That’s 4-8 months that the bad anti-bodies could be attacking your father’s myelin. I think if this dr is hell bent on treating your father with Imuran then your parents need to insist that it is used in conjunction with IVIG.
I’m not sure how old your father is but if he is elderly then there is already an increased chance of infection for him. I don’t understand why a drug that reduces white blood cell count & increases infection chances is used as first line defense.
I also do not understand why he is being tapered off of steroids if he is not getting better. And now they want him off of the Imuran as well? That is going to leave him with no treatments until May? That is dangerous & careless in my opinion.
PS, Just to let you know, I am a very strong advocate of IVIG. I realize that it doesn’t work for everyone but I strongly believe that it should be used first in the treatment of CIDP.
AnonymousMarch 18, 2008 at 12:21 am
I agree with the others. Your dad may need to see another doctor.
IVIG has helped me have a somewhat normal life. If you can get to the doc with your parents and then you can express your concerns directly to doc.
Good Luck, I wouldn’t wait unitl May appt…get on it right away
Rhonda from Canada
AnonymousMarch 18, 2008 at 12:33 am
I am not sure, but I think I talked with your Dad over the phone the other day. Someone gave him my number and we talked for some time. He did talk about getting off of the steroids and moving forward.
There are two different ways that CIDP attacks people. Most have a relapse/remitting type of cycle. The CIDP attacks for a period of time, and then relents. During the remission phase, some remyelination occurs. Speaking strictly from experience and the way people here write in, IVIG works best on those relapse/remitting when it is administered just prior to a relapse. Usually the CIDP will settle down and cycle in a predictable time.
For the other 15 to 20 percent, CIDP is continual and progressive without and real “major attacks”. In these folks, the rate of progression may be fast or slow. Some people have progressive rapid attacks and are wheelchair bound in a matter of six months, while others may take years. I fall into the latter category. I am progressive, but slowly progressive.
If your father is slowly progressive, his treatment will probably be more conservative. The imuran is an immunosuppressant, and the prednisone will help with strength. This is a conservative beginning treatment. If the imuran doesn’t do the trick, there are other drugs that can be tried. If his progression becomes worse, there would always be IVIG to stem a bad attack. If the progression is manageable, he can handle it as it goes along.
Fashioning a treatment regimen for CIDP is difficult for a neurologist. The drugs we have to take are toxic. We sometimes have more drug side effects than we have CIDP effects. You want enough treatment to “stem the tide”, but not too much to trash the body. A Dr. will want to help you as much as possible, but not create more problems. The more extreme the CIDP is, the more extreme the treatment needs to be.
The best advice I can give is for you to do what you are doing ….read… read… read. The more you can learn about how CIDP works in the body, the better you can be in working with your Dad’s treatment. The Dr. needs to take in the input of the patient to work out a plan, and the better you are informed the better role you can take in the care. My neuro frequently asked me how I thought the treatment was working. If I wasn’t tuned in to my body and the treatment, I could not have helped him help me. Treatment can be a partnership when both are informed.
Help your Dad learn more about CIDP, and he will be a better patient. He also has my phone number, call me if you want.
AnonymousMarch 18, 2008 at 7:50 pm
Hi, I’m Eric
46, Diagnosed September
CIDP, forst the prednisone worked, well!
3c months later, it stopped working,
Now I’m onb 7 onther meds to counteract sideffects of the prendisone?
And just had my secomd load of IvIg (no positive results)
From all I’ve read, there are differing “orders” of treatment protocall, but a second opinion? sure cain’t hurt! Good luck w your Dad!
He can get Help, just don’t take “no” for an abswer;-)
BUT LISTEN- I told you I’m NEW here- so excuse me if I’m “stomping on a thtread”, but;
I’m just done w my second month’d treatment of OctaGam? No good results, no real reduction in Prendisone, I’m a little WORSE off actually. The Infusion Gal says I prolly WON’t respond (if no improvement after 5 day load, initial) the neuro says “all we can do is wait, we can try imuran after a month or three- I recommend you apply for SSDI”
I’m a self-employed, single-dad of two, do-it-yourselfer kinda guy in a big old house w a giant yard and a bunchy of half-finished projects! How does one “sit n wait” (not good for much else, but, still?!
Any thoughts, please reply
Happy Easter- He IS Risen!
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