New Reluctant CIDP Member/Relapse?
March 20, 2013 at 3:48 pm
Just diagnoised this Feb, landed in Seattle Swedish Cherry Hill. Medically stabilized (5 days) and then transferred to the Swedish Intensive Rehab. Made amazing progressive thru Feb early March and was scheduled to go home 3/18, but had a major relapse starting 3/14 and continuing to today. It really has gotten to me. The Docs here seem to think it was caused by reducing my predasone dosage and maybe the start of a preventive antibiotic Dapsone. The upped dosage of predasone back to 40 mg orally per day and stopped the dapsone and are considering adding Imuran. I have went from independent to dependent and after a month plus I believe I am out of benefits and just don’t know what to do or anything – a very scarey time for me. Please advise (1st posting here)
March 20, 2013 at 4:09 pm
When you say you are relapsing, do you mean you are getting progressively weaker? This is definitely a scary experience and an extremely serious medical emergency. Usually the treatment is IvIg or plasma exchange. I had both, because the IvIg didn’t arrest the progress of the disease for me. I also has prednisone, but this was a temporary (one year) treatment during recovery while I transitioned to another drug (Cellcept).
Everyone responds to the various treatments differently. Treatment of CIDP often requires a little experimentation to find the best treatment. But if you are having an acute weakening, you need intensive treatment to minimize the damage to the nerves. For me, that was plasma exchange — I had nine treatments in a hospital, after which I have been progressively recovering.
Good insurance is very important with this disease, because the early intensive treatments which are sometimes required are expensive. If you are not covered for them, you need to find an alternative. Perhaps others who come here have some experience with that.
Are you seeing a neurologist now? Is he or she experienced with treating CIDP?
March 20, 2013 at 5:31 pm
Yes, I am seeing a Neuro Doc’s here on staff. I agree that I need immediate & intensive intervention. What has now been 5 days of decline with upping my oral predisone to 4o mg per day. Also stopped Dapsone. Neuro Doc’s discussing w/o concensus, adding Imran. One doc is advising patience, give it 3 – 5 days to “Kick In.” I would like to go back on the IV Predeisone quickly to get the shocking effect sooner. Am I getting too anixious/impatience?
March 20, 2013 at 5:49 pm
No, I don’t think you are being too anxious or impatient. This is a serious matter. Have you discussed IvIg with your neuro? I was put on that the day after I was diagnosed.
March 20, 2013 at 5:57 pm
I didn’t start an immunosuppresant until I had started recovery. Mine (mycophenolate mofetil) takes a few months to reach full effect. I have not had azathioprene (Imuran), but have read that it has a similar limitation.
I suggest you read this summary of treatments thoroughly and discuss them with your neurologist.
Keep in mind that early treatment during the active phase, when you are getting weaker, generally leads to a better recovery
March 21, 2013 at 1:21 am
I am now back to the hospital side of Swedish for the purpose of 5 days of IVIg. Will report daily any effects.
March 25, 2013 at 11:32 pm
Sorry for the lateness in posting an update. Complete 5 days/doses of IVIg, 2 days/doses (with one more to go) of IV Predeisone. Seemsw to have halted the relapse. Touch feeling improving, fine motor skills went almost to zero but now improving. Doesn’t look like I lost all strength I gained in Swedish Rehab, so at least I’ll have something to build on. The single thing that worries me the most is being able to quickly detect any future relapses and quickly get hooked up to halt it. One of my Neuro Doc’s said I’ll probably be on “maintanance doses” of IVIg every 4 weeks as a preventative.
Any thoughts from folks who have already gone through relapses?
March 26, 2013 at 12:04 am
I’m glad you got appropriate treatment and are doing better. I have not had relapses, and do not take IvIg, so cannot compare. But I understand that the trick, if maintenance IvIg works for you, is to find the optimal schedule. In the meantime, you can check you strength daily just by doing a few exercizes in a consistent way. I used light dumbells and Thera-bands of various strengths.
May 1, 2013 at 3:46 pm
Another Update, discharged from Swedish 4/11/13 & went home. A few adjustments around the home and everything seemed to be fine up until two days ago when I started to get tingling in my left hand and forearm. Panic thoughts of another relapse far away from Swedish. Started calling, first my local GP, who suggested calling the docs at Swedish which I did who informed me that technically I was not an Outpatient yet and I should call my local GP. Which I did (again) qand by this time I was almost in full panic mode. At least my GP suggested that I kick up my oral doseage of Predisone from 50mg to 100mg which I did. Seems to have helped a bit because the tingling left my left forearm but still is in my hands, left more than right. So far, leg strength seems to be holding and I can still sit to stand in my walker so I can be mobile in the house.
I have been building doseage on the Immuran/Azothioprine from 50mg to 100mg. Scheduled to go to 150mg 5/8/13 and another 2 weeks after that to 200mg daily. Then start tapering off the Predisone. This stuff scares the daylights out of me!!!! Any thoughts on how to deal with the Health Care Monolith???
May 1, 2013 at 5:15 pm
Sounds to me like the IVIG worked well. Why don’t they keep you on it? It seems like they would try IVIG once every 3 weeks after the 5 day load and if it works then maybe try stretching out the time. I am scared of prednisone. My neuro said the end result of a few years on prednisone was worse than CIDP.
May 1, 2013 at 8:32 pm
Prednisone doesn’t have to be a permanent treatment to be useful. My prednisone treatment was tapered down from the initial dose to zero over a period of about a yeat. During that time, I started another immunosuppressant treatment, which I still take. I have had no side effects from either drug.
May 1, 2013 at 9:32 pm
Bill, the IVIg only gave me partial relief & the reason they put me back on IV Predisone. They are now considering the IV Predisone if I do not improve by Friday. That’s two more days of relapsing which takes far more to rehab from, i.e., in home mobility. My wife & I are in our late sixties and struggling to be able to physically cope.
May 8, 2013 at 8:01 pm
Update, 5 days of IV Steroids, and now day 2 of IVIg, still losing strength, very worried/scared. Hopefully day/doseage of the IVIg will see an improvement.
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