AnonymousSeptember 25, 2008 at 10:40 pm
Hi peoples! I’m looking for some input of the treatment I’ve been getting. I got CIDP for 9 years now and have been in about a yearly pattern of relapse/remission. For the first 7 years my neuro has been giving me prednisone on and off. It got to the point where the prednisone was no longer working. I think my adrenal gland is just worn out. For the last 2 years I’ve been getting IVIG for relapses (3 days a month for 3 months about once a year).
My questions are these: I read somewhere that each time we relapse, organ damage takes place. Does anyone have any info on this? Should I be on a maintenance schedule of IVIG instead of blasting it upon relapse?
Also, I’ve heard that there are new anti-inflammatory drugs out that don’t shut down the immune system. Has anyone heard anything? Something to ease the stiffness and muscle aches would be nice. I’m going to see my neuro on 9/29 so maybe with your help I’ll know what to ask for.
AnonymousSeptember 25, 2008 at 10:58 pm
Hi, I’ve been taking Gabapentin 1800mg per day since about February 2008 for nerve pain and Alprazolam 1.5 a day for stress and muscle pain, which helped but I started recently to have really bad muscle spasms and pain. About 3 weeks ago I started on Baclofen 30mg a day and it has helped some. Atleast taken the edge off. Hope this helps. Oh and REST as much as you can. :rolleyes: I know easier said than done. Best wishes!
AnonymousSeptember 25, 2008 at 11:36 pm
Waiting until a relapse to treat a chronic condition like CIDP isn’t really the best idea. Every time you relapse you get a little bit worse & eventually that adds up. My advice would be to get on a regular maintenance dose of IVIG – maybe once a month. That way you head off any relapse & the longer you go without a relapse the better off your chances are of going into permanent remission.
Organs are only sometimes attacked by CIDP. CIDP usually just attacks the peripheral nerves (arms, legs, etc). It can move to the autonomic nervous system & start damaging organs as well. Some dr’s still deny autonomic nerve involvement but many people here can tell you differently.
There are other drugs being used to treat CIDP. They are all chemo drugs. The idea is to completely knock out the immune system & then re-start it again. Hopefully by doing that you get rid of all of the bad antibodies which attack your body. However, those treatments are usually used only as a last resort due to their side effects.
Most dr’s treat CIDP with IVIG first. If that doesn’t work then they add steroids. Next comes plasmapheresis & then the chemo drugs are last.
AnonymousSeptember 26, 2008 at 10:32 pm
Thank you folks for your thoughts.
I think I’m going to ask my neuro to set up a maintenance plan once I get out of this relapse. It does seem like I’ve been slowly losing ground over the years.
Emily’s Mom, that is so sad; a 4 year old with CIDP. It just doesn’t seem fair for a child to have to go through this. God bless all you good people on here.
September 27, 2008 at 12:30 am
Hi Jersey Shore,
My son Kevin who is 11 has cidp. His organs did start to be affected by relapses. His bowels were not working properly, his bladder was affected and towards the end before the actual dx, his lungs were being affected neccesitating picu for ten days. However, once we started monthly loading doses, everything started to work out. It has been 8 months since and Kevin is pretty much back to 100% with ivig. You cannot wait for a relapse to occur and then get treatment. It is like loosing ground and it could be ground you never recover. By the time you FEEL symptoms, you have already started the process long before. The best way to get this under control and stabalize is to find a schedule that works best for you. If you were going every three months, maybe you could do once a month for a year until you stabalize and gain some ground and repair. If you felt better, you could start stretching out or reducing the amount, although most abstracts I read seem to be stressing frequency being more important thatn amount once a maint. schedule is established. Currently, after 8 months straight of loaading doses, Kevin is starting to decrease ivig by 10 grams every three months. Good luck.
DAwn Kevies mom
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