Hi everyone. I have had CIDP since November 2010. I have been getting 35 grams of IVIG every 21 days and it has always kept most of my symptoms very mild. But lately I have been experiencing some new symptoms even though I am still getting my IVIG. My hands have been going numb at night and tingling and hurting. This happens every night lately. Then during the day the tops of my hands burn and ache. I have also noticed some loss of strength in my arms. When I shampoo my hair I can only hold my arms up over my head for a few seconds and then have to put them back by my side to rest. I am worried that my disease is taking a downward turn. I don't know what to do. I don't want to stop IVIG as it was helping so much before. I don't want to try pred again as I was on pred in the beginning and it was the mose miserable drug! I could not sleep, i was anxious, jumpy and just plain felt icky. I have been just trying to ignor this with hopes things will settle back down and be as they were. I was wondering if anyone else has had minor flare ups and then they would settle down again? I have not called my neurologist yet as I don't want him to tell me he wants to stop IVIG and try some other drug. Now that I am not sleeping I am exhausted all the time too and I work 10 hour days! Does any one have any suggestions? I take vitamin B12 and D3 already.
You are on a very low dose of IVIG. I would talk to your doctor about increasing it and maybe you need it more often? I would reccommend sleeping with wrist guards on at night. I have found that to be a big help.
Regards,
Lori
Hi ChirpyBirdy:
I was diagnosed a year ago with CIDP. And yes, over the past few months I have been experiencing the same weak arms, numbness in hands, etc as you! So my neuro put me back on IVig for a loading dose and felt GREAT and the weakness in my left arms and legs, tingling in hands, numbnes on waking were gone...except I developed a small blood clot in my arm where the infusion was and now my neuro has taken me off the IVig and kept me on prednisone and Imuran which I don't feel helps at all. Like you, I'm afraid this is another flare up. My body is weak all over and I feel so frustrated. I'm not sure what dose of Gammunex I was on, but it helped a lot. So maybe as your body changes and adjusts to a certain dose of meds, it needs to get adjusted to a higher dose? Good luck. I hope your neuro cooperates and is helpful.
Lisa in Mich
Thanks Lisa. I think I will have to talk to my neuro about upping my IVIG dose a little bit. I was really hoping to get the dose down but I don't want to feel like this anymore. I also have extreme fatigue for some reason. Probably because i don't sleep at night due to my hands going numb. I wake every hour to shake them out and get feeling back into them. I feel like a walking zombie!
Lisa Jakee Hilton said:
Hi ChirpyBirdy:
I was diagnosed a year ago with CIDP. And yes, over the past few months I have been experiencing the same weak arms, numbness in hands, etc as you! So my neuro put me back on IVig for a loading dose and felt GREAT and the weakness in my left arms and legs, tingling in hands, numbnes on waking were gone...except I developed a small blood clot in my arm where the infusion was and now my neuro has taken me off the IVig and kept me on prednisone and Imuran which I don't feel helps at all. Like you, I'm afraid this is another flare up. My body is weak all over and I feel so frustrated. I'm not sure what dose of Gammunex I was on, but it helped a lot. So maybe as your body changes and adjusts to a certain dose of meds, it needs to get adjusted to a higher dose? Good luck. I hope your neuro cooperates and is helpful.
Lisa in Mich
I have wrist guards. I will give it a try. I had carpel tunnel when I was pregnant (temporary carpel tunnel caused by my pregnancy) so I purchased a wrist guard for each wrist. I hate the way they feel when wearing them though. But better than numb hands.
lorimack said:
You are on a very low dose of IVIG. I would talk to your doctor about increasing it and maybe you need it more often? I would reccommend sleeping with wrist guards on at night. I have found that to be a big help.
Regards,
Lori
Lori:
I totally know what you mean. The arm numbness and tingling waking is frustrating. Then I'm up to the bathroom multiple times in the night! No wonder I'm so tired and weak that I can barely drag myself to work and NOT feel like a zombie! I hear you girl!
Lisa
Lisa Jakee Hilton said:
Hi ChirpyBirdy:
I was diagnosed a year ago with CIDP. And yes, over the past few months I have been experiencing the same weak arms, numbness in hands, etc as you! So my neuro put me back on IVig for a loading dose and felt GREAT and the weakness in my left arms and legs, tingling in hands, numbnes on waking were gone...except I developed a small blood clot in my arm where the infusion was and now my neuro has taken me off the IVig and kept me on prednisone and Imuran which I don't feel helps at all. Like you, I'm afraid this is another flare up. My body is weak all over and I feel so frustrated. I'm not sure what dose of Gammunex I was on, but it helped a lot. So maybe as your body changes and adjusts to a certain dose of meds, it needs to get adjusted to a higher dose? Good luck. I hope your neuro cooperates and is helpful.
Lisa in Mich
I have gone gluten free and eliminated sugar, and I take vitamin B complex, I also take benfothiamine and alpha lipoic acid.
all of this really helps me. Of course you would want to check with your doctor if you wanted to try any of these. I find stress makes my symptoms worse.
I’d suggest seeing if you can get your IVIG dosage bumped up. Also, you might want to ask about a Gabapentin Rx for the nerve pain and cramping. It worked wonders for me!
What are the most common side effects of Gabepentin? I am trying to not have to take any powerful drugs with side effects unless I get so miserable that I cave in. I take Ibuprofin and it seems to help some. Actually last night was better than it has been. For some reason my hands were tingling and still hurting through the night but they did not go completely numb. Who knows why with this darn CIDP. There is no script to follow with this disease is there?
Rick 3206 said:
I'd suggest seeing if you can get your IVIG dosage bumped up. Also, you might want to ask about a Gabapentin Rx for the nerve pain and cramping. It worked wonders for me!
You may want to check out a web site called beating neuropathy. Most of his patients are diabetic, but some of the info can be applied to CIDP. I had problems with burning, especially at night, but once I started following his advice my burning and numbness went away. He tries to avoid dispensing medications and prefers natural ways to control it like diet and a few supplements. I only take celcept and the IVIG. Right now my neuropathy is under control with just diet and a few supplements..
Hi Daisy,
I am also Gluten Free and trying to eliminate Dairy and Sugar now. I am taking a slew of things, including ALA, B-12 Complex, Fish Oil, Silenium, Silymarin, Ambrotose and other Glyconutrients to increase my Glutothione level and help my Immune System. The last 3 items are new for me. Have you felt a difference and how long did it take?
Regards,
Lori
Daisy said:
I have gone gluten free and eliminated sugar, and I take vitamin B complex, I also take benfothiamine and alpha lipoic acid.
all of this really helps me. Of course you would want to check with your doctor if you wanted to try any of these. I find stress makes my symptoms worse.
I have neuropathy in the ulnar nerves of both arms (among other places). My pain and tingling were quite severe before I began using speech recognition software to operate my computer. This was more effective than physical therapy and the medicines that I tried (gabapentin and amitriptyline). If you find that your arm problems are aggravated by computer use, I would recommend you try speech recognition software.
Lori, I went to a naturopath the 1st week in jan. She recommended the paleo diet. So, not only have I eliminated gluten, I have eliminated all grains, dairy and sugar. I eat nuts, seeds, fruit, veggies and protein. I buy fresh organic if I can find it. I buy grass fed beef, free range chicken or wild caught fish. I take 600 mg of alpha lipoic acid 2x a day. I take 150 mg of benfotiamine, 2x a day. This is a fat soluble form of thiamine. It stays in the body longer so your body can absorb it. I take vitamin b complex 50, 5 mg of methylcobalamin, sublingual (B12). Also tumeric and black cherry extract are both good anti-inflammatories. I also take cod liver oil, and a pro-biotic. L-carntine and NAC are also supposed to help with nerves.I have taken those off and on, but I think I have seen the most dramatic change I have noticed has happened since I started on the paleo diet on the 8th of Jan. This diet may not work for every one, but for now it is working for me. I don't eat any processed foods at all, not even gluten free cereals, crackers, etc.
Daisy
OH Yes! I am trying to do a similar diet, Paleo as well. You are being very good, maybe I can learn from you? I am eating GF cereal, bread. But I do believe I should cut this out too. I am going to research some of the supplements you've mentioned. I am taking 900 mg of ALA per day. You are taking 1200 mg? I started all of this on Jan. 16th. Have you noticed any difference? Less numb?
Lori
Daisy said:
Lori, I went to a naturopath the 1st week in jan. She recommended the paleo diet. So, not only have I eliminated gluten, I have eliminated all grains, dairy and sugar. I eat nuts, seeds, fruit, veggies and protein. I buy fresh organic if I can find it. I buy grass fed beef, free range chicken or wild caught fish. I take 600 mg of alpha lipoic acid 2x a day. I take 150 mg of benfotiamine, 2x a day. This is a fat soluble form of thiamine. It stays in the body longer so your body can absorb it. I take vitamin b complex 50, 5 mg of methylcobalamin, sublingual (B12). Also tumeric and black cherry extract are both good anti-inflammatories. I also take cod liver oil, and a pro-biotic. L-carntine and NAC are also supposed to help with nerves.I have taken those off and on, but I think I have seen the most dramatic change I have noticed has happened since I started on the paleo diet on the 8th of Jan. This diet may not work for every one, but for now it is working for me. I don't eat any processed foods at all, not even gluten free cereals, crackers, etc.
Daisy
Similar experience started for me in both my hands and arms and I lost/lose co-ordination ... fear started to arise around getting worse ... Im waiting on a review ... but in the mean time I have a soft yet firm ball that I can hold in my hand and I do perhaps 20 exercises in each hand 5 times a day, taking my attention from my fingers, to hands, to arms - coupled with some gentle massage. Stay strong and hope it helps in some way.
lorimack said:
OH Yes! I am trying to do a similar diet, Paleo as well. You are being very good, maybe I can learn from you? I am eating GF cereal, bread. But I do believe I should cut this out too. I am going to research some of the supplements you've mentioned. I am taking 900 mg of ALA per day. You are taking 1200 mg? I started all of this on Jan. 16th. Have you noticed any difference? Less numb?
Lori
Daisy said:Lori, I went to a naturopath the 1st week in jan. She recommended the paleo diet. So, not only have I eliminated gluten, I have eliminated all grains, dairy and sugar. I eat nuts, seeds, fruit, veggies and protein. I buy fresh organic if I can find it. I buy grass fed beef, free range chicken or wild caught fish. I take 600 mg of alpha lipoic acid 2x a day. I take 150 mg of benfotiamine, 2x a day. This is a fat soluble form of thiamine. It stays in the body longer so your body can absorb it. I take vitamin b complex 50, 5 mg of methylcobalamin, sublingual (B12). Also tumeric and black cherry extract are both good anti-inflammatories. I also take cod liver oil, and a pro-biotic. L-carntine and NAC are also supposed to help with nerves.I have taken those off and on, but I think I have seen the most dramatic change I have noticed has happened since I started on the paleo diet on the 8th of Jan. This diet may not work for every one, but for now it is working for me. I don't eat any processed foods at all, not even gluten free cereals, crackers, etc.
Daisy
Lori, I went to a friends house for lunch yesterday. She had BLT's on gluten free bread. I was so sick last night. I didn't eat dinner at all. I had a splitting headache and my feet went numb and were burning again. This just from 2 pieces of gluten free bread. It was hard going grain free at 1st, but now I know I need to stay away from them. To cut down on cravings for carbs my naturopath had me take some supplements to help me get through the 1st couple of days. Forgot to mention before that I also take vitamin d3 and magnesium.
Chirpybirdy,
Gabapentin helped me with my numb arms, I used to wake up at night with both arms completely asleep, tingling with painful needles and unable to function. I would have to roll out of bed to a sitting position and wait for function to return, it was the day that function did not return that I finally went to the hospital and began the long diagnostic path to CIDP.
I started on a low dose at first and eventually was taking 4800mg per day, I have since worked my way back down to just 1200mg per day and have found that to be a good level.
Hope this helps, Good luck
Dave