Welcome to the family…

April 25, 2009 at 2:36 pm

Hi Elihab,
Welcome to the krappy world of dealing with CIDP…
You have a rare disease–it happens in about 1 person per 100,000 people.
Because it is rare, not a lot of research is being done, however, there is a stem cell transplant research going on right now at Northwestern in Chicago, however, it is unfunded, and patients have to come up with the bucks to pay for it on their own, (approx. $250,000.00), as insurance companies will not cover “experimental procedures”. So it is discriminatory if you are not rich…

This stupid disease reacts differently in each person. The neuros have a protocol of treatments they follow for the CIDP. And if one treatment doesn’t work, then they go to the next step, or try giving you a combination of treatments. Personally, I failed at all the steps, and am on the last step of being treated with chemotherapy to just slow the downhill progression, as none of the treatments worked to put it into remission.
However, if you read through posts here, or I am sure more people will be coming along to add their hello’s, you will see that IVIG or steroids or combo of both, MANY TIMES will put it into remission. There is much hope for you in the beginning–it all depends on the person, and how much nerve damage there is.
Anyways, yes–your neuro is right on with his plan of treatment.
The normal protocol goes:
-High Steroids–which, yes, can be a problem if you are a diabetic, as they really throw off your blood sugars, especially if you are an insulin diabetic.
-Using IvIg–I can’t remember the normal dosing of this–someone will probably come along here to tell you that, as it was a long time ago I had tried IVIG.
-Then there is using immuno-supressents, such as azathioprine, Cellcept, etc. There are a few of them.
-Then there is using plasmaphereses.
-Then there is using chemotherapy, such as Cytoxin.
They will use any combination of the above, until they find out what might work for you. Don’t get depressed by this, as this will take a LONG time until they might hit it right for you.
You can google anything mentioned, as you have a lot to learn about it…
Okay–pills that might help you:
-Neuropathy pain-Gabapentin is usually the main med. I see he put you on 2700mg per day. That can be increased to see if more will work for you, if that dose doesn’t work. I am on it. Plus, I have Vicodin to fall back on. Some people take Cymbalta or Lyrica. Whatever will work for you…
-Muscle spasms, cramps, or contractures–if you get these–you may not. But, if you do, I am on Flexeril 10mg three times daily. That will work for many people. It didn’t quite work for me, and my doctor added another pill with it, a low dose of Valium 2mg three times daily–the combo worked for me.
There are nerve conduction tests to see how your CIDP has affected you.
If you continue to worsen, down the line, they may or may not opt for a nerve biopsy, or a skin biopsy. This again might be to see how much damage there is or being done, if you are not responding to treatment. Don’t wig out if either is ordered–they are simple procedures–one is done via surgery, (nerve biopsy), the other in a doctors office, (skin biopsy).
You will also probably experience great fatigue. Everybody here has it. You will find you will have to learn how much you body can do, and not do. Most people find that by resting alot, you can rejuvenate. Personally, my doctor has me on Ritalin so that I am not mostly bedridden. But, that is used only when the fatigue gets really bad.
There is also a chance, it might hit your autonomic system, if you continue to worsen. That shows up, if they do a nerve biopsy. And they would add medications as needed to treat what areas would become affected.
I have given you what good possibilities can happen. And I’ve given you some worse-case-scenarios, (I fall into the latter).
I do hope the IVIG will work for you, as it helps probably about at least 75% of the people with CIDP.
You will also see here, people talking about GBS, (Guillain Barre Syndrome), which is the acute form. CIDP is the chronic form. They are both related.
I hope this helps you start the learning stage. Come in here if you need to vent to–there are MANY friendly people here, who are going through what you are, and we all have our bad days…