Any Insight would be so appreciated :)

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Hello there,

I am a new member here struggling with watching my mother slowly deteriorate as her CIDP progresses with no signs of letting up.

A year ago she experienced a foot drop. At first it was assumed to be a pinch nerve but weeks later the pain began. The pain was so excruciating in her leg that she was wheelchair bound for months. Not long after she experienced a wrist drop. Again doctors said it was a pinched nerve.
To make a VERY long story much shorter, she has had every test you can imagine (multiple EMG’s, muscle tests, bloodwork, lumbar puncture etc.) Everything yielded inconclusive results so her neuro ordered a nerve biopsy in January of 2015. The pathologist’s final diagnosis was CIDP.

Her foot drop resolves sometimes but always returns. Her wrist drop resolved but she has permanent nerve damage in her hand and cannot use the 3 of the fingers (significant muscle wasting and it’s caving in). Her newest symptom is muscle wasting in her calves. The pain in both of her legs, from the knee down, is absolutely excruciating on a daily basis. She is on such high doses of pain meds (Hydromorph Contin, hydromorphone, percocet, lyrica etc) and it doesn’t help.

She has been on Cyclophosphomide since March (100mg daily, with a 3 week break because of low WBC).

Aside from the cytoxan, no other treatments have been discussed or considered. Is this normal? Her neurologist is VERY well known but I don’t feel enough is being done. Her legs are wasting away, the pain is unbearable and I think she is getting tired of fighting this with no end in sight. She has gone from a relatively independent 60 year old woman to unable to do much of anything for herself.

Thank you for reading and for allowing me to talk about this in your community.

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I forgot to add that she has been on 30mg of Prednisone for about a year now as well. But it’s having some serious consequences in terms of her osteoporosis.

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Minus the pain I had all of the same symptoms. I was originally getting IVIG infusions twice per month with little to no progress. Eventually I was completely bed-ridden, then it weakened my diaphragm and needed a breathing machine 10 hours a day. At that point my neurologist turned me into a guinea pig prescribing IVIG at the rate of 5 infusions one week, then one the next on a continual rotation I'm still currently on. For example, this month I will receive 13 IVIG infusions. This seems to be working a little bit as I no longer require a breathing machine and I can move my arms enough to use a tablet again. I'm still bed-ridden but much better than I was 6 months ago.

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I'm surprised that no IVIG treatment has been tried. It seems to be the first think that most Dr.s are prescribing these days.

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Where are you living? Having a good doctor (or doctors) and a good support system is crucial. 35 years ago it took me 7 years to be diagnosed, so I know how that feels...I was helped by prednisone first and then imuran (immune suppressant) for 20+ years, but when menopause came, the CIDP flared and was no longer controllable by the meds, so my neuro took me off them. Eventually I will probably use prednisone, but the effect on my diabetes and osteoporosis is significant, so I'm waiting as long as I can. I have been blessed by a fairly mild case, but in recent years I have had much pain, cramping and twitching (fasciculations) in my legs and arms. Like your mother, I have muscle wasting and permanent nerve damage in one of my hands, which is challenging to accommodate, but the pain is the worst. I take Lyrica, hydromorphone and Norco to manage my pain and my moods, and it is discouraging to have such symptoms at an early age (60 is definitely not "old", except to my 10 yr old grandson!). I will pray for you and your mom to get the answers you need, and I'm willing to talk anytime if I can help. .

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I HAVE HAD GOOD RESPONSE TO IVIG GAMMUNEX C OVER THE LAST THREE & 1/2 YEARS. STARTED OUT EVERY THREE WEEKS, NOW DOWN TO ONCE-A-MONTH WITH WHAT I CONSIDER EXCELLENT RESULTS.

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Hi Tanya

I have had CIDP for 15 years now and the first sign was in my right hand, mine has never really gained its full use although I have learnt what it is able to do and what it can not do I use my left hand for, the muscle wasting is under my thumb, this area is very painful if I bang it as there is little padding. The muscle wasting in her calves is common, and this should return once she is back on the road to recovery, also she may have more muscle wasting in her thighs. The legs can become quiet different in their appearance and the weakness is hard to handle at first, speaking from experience I have on many occasions regained the muscle but have learnt to live with the leg pain. No doubt your Mum feels like smashing her legs up against a wall just for something to do to get on top of it, this pain is very unpleasant . This condition is very hard to understand at first it really feels like you are going mad with all the strange feelings and loss of feelings that we experience, and really no two people have the same. It is hard to feel that you are not the person you once was, although our bodies can recover fully and if not we learn to tweek most situations so we can lead a full life. Your Mum will probably at this early stage need to learn to listen to her body and not fight, she wont win just yet, if she needs to rest or needs to sleep go with it, she will know when its time to start and regain her strength, I always say you have to hit bottom before you can start the climb, (which is hard to do). There is no quick fix here, there are aids that she can use to help her through (jar openers, and other things to help in the kitchen, leg braces or a stick) and once she is feeling better these things can be put to the back of the cupboard, just in case they are needed again.

It is a very scary time for you both trying to come to terms with this but you will get there, believe your Mum will improve and be prepared to dodge the emotions that she will go through. There are many of us who have lived with this condition for many years and like nothing better than giving it a good hard kick in the butt when we have the upper hand.

Sending you both lots of strength.

Kim

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hi i am 57 and had cidp for 4 years i too had every test there is it seemed it took the doctors awile to figure it out.i have been taking 1 gram of solumedrol through iv once a month for about 3 years (luckily my wife is a nurse i do it at home)except for a couple of early relapses this has kept it at bay this is basicaly the only drug i take except aleve but my legs from the knee are shot but i can still walk thank god i would rather feel the pain than to feel like a zombie from all the other meds i have tried so you gotta try to stay active

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I'm sure you will get many replies, but let me add my experiences.

First, as has been said already, IVIG seems to be the gold standard for treatment. As I have said on this forum previously, it was almost like a miracle for me. I was on IVIG every three weeks for some some time, then gradually was weaned off it. The effects were dramatic after I had a treatment, and I saw benefits within days.

Having said that, one of the things you will learn is that everyone responds differently to this mysterious disease. Some people do not seem to respond to IVIG, while others are like me. However, it is certainly something you should ask about.

Prednisone works well for some people. It did nothing for me, and I just continually went downhill while I was on it. However, it is easy and inexpensive to try, and I would certainly ask about that, too. I believe prednisone can be used at the same time as IVIG.

You mention muscle wasting. I went through a bad period in which I was in and out of the hospital, and couldn't do much of anything physical. When we finally got my treatment squared away, and I started to improve, I noticed that my muscles were virtually gone. Even my butt was gone! You don't tend to think of that as a muscle, but the glutes are huge muscles that are essential for walking. I think that what happened was that I was just not using them, and so they deteriorated away. I went through several weeks of therapy, and then decided that I was just going to have to make myself exercise if I ever wanted to get any strength back. I now go to the gym three days a week, and work myself into limp-dishrag condition, and try to do something active between gym days. I hate every minute of it, but I have gotten much of my strength back. I am still not as strong as I used to be, and never will be, but I am much better than I was. Forcing yourself to exercise when you just don't feel good is hard, but I am convinced it is essential.

Finally, try to get a feel for how many CIDP patients your neurologist has seen. It is so rare that even some neurologists are not familiar with it. If your neurologist is not experienced with IVIG, you might want to consider finding someone else who is.

Good luck, and let us know how your mother does.

Bill

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IVIG transformed my CIDP from 83% to 23% weakness.All the doctors I have met suggest medical cannabis can supplement this.

But it's IVIG I swear by.

Apart from good luck and welcome,that's all I have to say.

Apart from this thing about Positive Mental Outlook promoted here.A liitle bit of hope goes a long way.

I'm now off for my 91st 4-weekly treatment of IVIG 45 mgs Gammaplex-UK.

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Hey Tanya,

Sorry to hear about your mum. If you can get her to a swimming pool at all I would recommend that for the muscle wastage. Even if your just walking lengths in the shallow end holding her up, its takes enough of the weight of through buoyancy but will allow her moral and muscles to be used, may combat the wastage.

All the best

Tom

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