Another New Member…
AnonymousJune 11, 2010 at 10:23 am
I’m sorry to notice so many ‘new members’ showing up in this forum… I’ve been doing a lot of reading too, and finally decided to post. My husband is the one with CIDP – diagnosed (finally by the 4th neurologist we went to) in October 2009.
He had just moved to Montana for a new job in May 2008 when problems began. I wasn’t able to join him (from Oregon) until November, and was shocked to see how much both lower legs had atrophied, and he couldn’t walk without a cane. (This man used to walk up ladders with furniture over his shoulders.) All the doctors said he had spinal stenosis, and recommended back surgery – which he had in April 2009, but of course it didn’t help and he kept getting worse.
We consider ourselves lucky to have found a neurologist that recognized CIDP…but really have no idea how good he is. He did not explain CIDP very well at all…and most of what I now know has come from reading these forums, and literature from the Foundation. My husband has never been sick before, and his back surgery was the first time he had ever been in a hospital.
The neuro had him get a 5 day IVIg treatment in October…but didn’t mention that he was supposed to followup with monthly treatments. There was some very slight improvement after 30 days, but by 60 days he was worse than ever with extreme pain. (The neuro said we were supposed to make our own follow-up appointments – I guess we were just expected us to know that?). So – – we started again in December, 5 day loading dose and then 2 day treatments each month thereafter.
He has not seen the neuro since 2nd treatments began – only his PA assuring us that the treatments must be working since he’s not in a wheelchair yet – but we were not seeing any improvement after 5 months of treatments. We were just getting ready to question the neuro about experimenting with other/additional treatments when…
Last week he suddenly started getting feeling in his feet, and said he felt less fatigued – it was huge! He still has no strength and no balance, but just the flicker of hope has changed his outlook immensely.
My husband thinks we should try steriod treatment in addition to the IVIg…to see if that will help increase his strength and accelerate improvement. We have yet to see the neuro to get his opinion (depends how long it will take to get an appointment) – – but I am wondering if anyone knows/has tried both IVIg and steriod treatment together, whether it is wise to try ‘mucking with’ his treatment when he is finally showing progress?
Sorry this is so long, but I would sure appreciate any feedback on our experiences so far…
AnonymousJune 11, 2010 at 3:34 pm
I am sorry that your husband has CIDP. I understand his desire to get better faster. With the right treatments, there is a reasonable chance that he can recover most of his functionality, but it may take a while to find the right treatments.
Remembering that I am not a medical doctor, just someone with CIDP offering his experience, I think your husband could be treated more aggressively with IVIg. Several people here found that they needed 5-day treatments for several months before the disease reversed its course. Because IVIg seems to be working, a month or two of 5-day treatments might show remarkable improvement. At the least, changing the dosing to a 1-day treatment every other week might show more rapid improvement. Your neurologist will have to work with you on this, but I would try increasing the IVIg dosing for a while and then tapering down the dose over the next several months.
That said, many find that they need a combination therapy. In my case, I now use plasmapheresis and an immunosuppressant. Others use IVIg and a steroid (prednisone, typically). Steroids definitely can be helpful, but they carry significant side effects. Again, I am just offering my experience, but where I found steroids most useful was in helping me improve while we tested immunosuppressants. Many of the immunosuppressants take several months to have significant effect and prednisone can stimulate improvement while waiting for them to work.
With respect to your neurologist, it is perfectly reasonable to ask about his background in peripheral neuropathy and demyelinating diseases in general, and in CIDP in particular. He won’t necessarily be a poor choice if he has limited experience, but he must be willing to learn about the disease. There are resources available to him, such as consultation with doctors at medical schools by phone or e-mail. For example, my neurologist has e-mailed a doctor at a teaching hospital for advice about a protocol we were considering.
Let me point you to this information from the Peripheral Nerve Society regarding treatment of CIDP: [URL/][COLOR=#000000]h[/COLOR]ttp://www.pnsociety.com/Guidelines_CIDP.pdf[/URL].
Godspeed in finding appropriate treatment and for more rapid recovery,
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