Hello Brian,

I have not been on the site for a long time but good to see you still here. I am sorry the Gammagard did not work well for you. If you remember, we were diagnosed about the same time and I have been on Gammunex the entire 2+ years for my infusions. No added steroids. I have to say I am probably still very stable compared to others but I have had different reactions/symptoms over the last few months. More joint pain in the knees and some inflammation in my left forearm. I worry that the infusions may not be as effective after this long of a period but I still have some pretty good days and my neuro says I am doing great (I beg to differ some times :). Still taking Lyrica 3 times a day to control the nervy feeling mainly in feet and lower legs. Tried to cut back to 2 a day but those dang creepy crawlies were showing up again. While I have accepted my CIDP fate, I cant help but think of the good ’old days before all of this but I have a co-worker that at 49 years of age was diagnosed with stage 4 colon cancer so who am I to feel sorry for myself. I hope you at least are still able to play some golf.

Jim, good to see you are still on here helping so many with your knowledge. How are you doing? The last I remember you were on the Remuxitab (sp)?

Any insights into CBD oil for inflammation pain?

Jeff in Houston

Hi Bryan,

Always look forward to hearing from you. By the way, are you in Cincy? I am a Buckeye by birth. Grew up in a small town near Lima in northwest Ohio. Have family in Cincy and Columbus. Been in Texas over 30 years but still a Buckeye fan. Here is my 15 month report. Doing pretty well like you. On IVIg once every 3 weeks instead of 2 and seems to be fine. Never had steroids. However, after an infusion, I used to get a boost, though not much of one, now the first week after an infusion is the worst. Stubborn headache (controlled by Advil) and more leg/ankle symptoms, but again nothing too bad. The next 2 weeks are pretty good with some days like I don’t even have CIPD! The lyrica continues to keep the nerve activity at bay. I too am pretty zonked at the end of the day but I also changed my work hours to 6 a.m. to 3 p.m. so I get home early and beat the horrible Houston traffic as driving can still bother me sometimes. I have gotten used to driving without my shoes on and that helps my feet feel better. I haven’t ever heard you mention inflammation, which is still one of my symptoms but nothing like it was in the beginning. I think I am and have been in the “stable” category for quite a while, which my neuro says is the goal. I would rather he tell me there is research being done every day to solve this problem but I will take what I have and just live with it. Others seem to have it much worse. I still fear the word relapse but for now I am keeping that word out of my dictionary:) I need to eat better and loose some belly fat, looks pretty silly on a man that only weighs 145. I feel I am still not strong enough for a major exercise program but hope that will come if I start to feel less tired after a long work day. Take care and thanks for the updates. Jeff

Hi Andra Marie and you too Chirpy if you reading the responses. Jeff in Houston here. Been a while since I have been on the board. I had somewhat the same question? I am almost a year in with my cidp (Dec. 4) and have been getting iVig every 2 weeks since early Jan. of 2017. My treatments of Gammunex (sp) have not been particularly eventful like they are for some. I sometimes notice no difference in my condition and other times feel a bit of a bump…until this last infusion. Our home was destroyed by Hurricane Harvey (yes, not a good last year for me 🙁 and we are still salvaging what we can from the house. I spent a couple of hours the evening of my latest infusion cleaning some exterior pots and a set of wind chimes. I then felt a tightness and bloated feeling in my stomach followed by a severe headache. That led to what is hard to explain but from my head to my toes it felt like I was being electrocuted with stabbing pains, not unlike how my first symptoms were when this all started but also different. I tried a hot shower and then lay still but it just got worse. After about 4 hours I gave in to a Tramadol pill (I have taken 4 of these since this all started, not into pill taking) and it calmed everything down. Next day I felt like I had been in a car accident, sore muscles, lingering headache but a whole lot better. A day later back to where I was before the infusion. I only would have a minor, short headache after infusions, nothing like this time. I believe my cidp has been the slow progressive type, although my neuro does not believe in different “types” of the illness. It has taken almost a year for me to feel the soreness in my knee and hip joints. I still maintain daily living skills such as work but not without the daily bouts of tight calf muscles and burning inflamation in my upper leg muscles. But either I have gotten used to it or it is just not that bad. I hate to even complain given what others are dealing with but I now have 2 or 3 questions for those like me and if others might have any insight. So Andra Marie, I would say I had my first “major” relapse but probably have had smaller ones over the last year. My questions are 1) Has anyone experienced an episode like I describe above? 2) My white blood cell count has dropped quite a bit to below normal, nurse says iVig can lower wbc but sending me to a Hematologist to check things out. Anyone one else have the same issue?, 3) Is it time for me to find a good physical therapist to work on the joints and muscles? I feel better after long walks, and finally has anyone else had success with Tumeric supplements for the inflamation? (ok, sorry that was 4 questions) Chirpy Birdy, you were so nice to me when this all started, I am happy for you that your every 5 weeks regimen has kept you sympton-free and hope that can be me someday. Brian F, if you are reading, sounds like you are hanging in there as well. Take care everyone and share if you can. Good luck Andra Marie (We need another Houston chapter meeting!:)

Jeff (fellowcidpguy)

Hey Bryan, just checking in on ya. I too feel like I have taken a step backwards as the new sensation of weakness in the legs has been pretty consistent. My after infusion cycles are never the same. I might feel better right after or I might feel worse. I do think the IVIG treatments are keeping me stable but have accepted that this could be my foreseeable future. Luckily my insurance is paying for me to get an infusion every 2 weeks for another year. Do you have much inflammation? That seems to be my biggest issue, but luckily it comes and goes rather quickly which is very weird. The nerve activity feeling in my ankles an calves is kept to a minimum with taking Lyrica and I have no side effects from it. Want to avoid those steroids at all costs if I can. Have you tried anything like turmeric for the inflammation? I am thinking of trying it. Also wondering if a foot stimulator like Revitive would help with soreness in feet and calf muscles. I still do as much exercise as I can to keep things moving but have not opted for PPT yet. I tried the local pool but maybe the chlorine was bothering my skin and seemed to wake up the nerves after some water exercising so that was not a solution. I hate to complain as I know others have it much worse and I seem to have adjusted to life with cidl but I still have days when I just want it to be gone. If I overdo with too much activity, I might give into a Tramadol (which definitely works 🙂 outdent want to dog down that road either. I might take one every 2-3 weeks if necessary. Let’s hope we both start to improve somewhat. Take care, Jeff

Hey Bryan, same for me this time after my infusion. Remember, I am on an every 2 weeks cycle and while I had the best 4 days in a long time 3-4 days after my previous infusion, this last one was the complete opposite. Extreme inflammation in thigh muscles and more nerve activity in my calves. Stronger inflammation in the forearms but nothing like the legs. Really bummed me out as I had been feeling so good. I am calling this a mini relapse but today was better so maybe I should not be so concerned. Saw the neuro last week for my 6 month elvauation and he did the usual strength tests and said I was doing very well. But because of my recent slide will keep me on every 2 weeks for now. He does not necessarily agree that every cidp patient fits into one of 3 categories ( I still think I am the slow progressive version) and likewise does not see a tendency for a general 1-3 year active pattern of the disease. Instead believes every patient is different and can’t be categorized. I like him but hard to not want to have some expectations with this disease. Told me to keep as active as possible which still makes me feel better than to just sit around watching sports on tv. Keep posting your progress, good or bad but let’s hope GOOD. Jeff

We recently had a chapter meeting in Houston and the guest speaker was a physical therapist. She was very informed about cidp and said their therapists get training for it. I talked to her briefly after the meeting and told her my neuro thought I did not need it and I would be wasting my money. She said they would do an evaluation on me and maybe send me home with things I can do on my own. Our local neighborhood pools will open soon and I assume water exercises would be good and less stressful on the legs. Would be curious what others do in their therapy. My biggest issue 5 months into the disease is my sore thighs, where my cidp originated. The soreness comes and goes but I have more bad days than good. I do the simple cidp exercises while in bed that I found online, mainly leg lifts, knees to chest, ankle rolls. How do therapists deal with muscle shrinkage? Thanks for any tips. Jeff

Hi to all. Let me start by admitting that cidp is different for everyone but I am looking for some input/advice on my status if you are so kind to share. I am at 5 months since my first symptoms began, horrible thigh pain and soreness followed by being tazzered by my nerves. 4 months of infusions every 2 weeks. I saw my neurologist in early April and after strength, sensory and balance tests in his office he stated that I was doing great which caught me by surprise as I thought I was declining. So after this amount of time and 7 infusions I am left with these thoughts/questions:

1. My legs feel like they have cratered. Thigh muscles are sore and inflamed most days with brief respites of normalcy. Still walking fine, no balance issues.
2. Nerve activity is mainly in lower legs but occasional pings in some upper regions like a shoulder or wrist. Not much but have never had upper body issues.
3. Was on 2400mgs of Gralise but now trying Lyrica. The transition has not been fun but getting better. Concerns on Lyrica?
4. No noticeable improvement after infusion, no bump as some have described. Are they still working? Gammunex-C/Gammaked.
5. Many have described knowing when the disease has somewhat abated. When did that happen for you if indeed it did?
6. Neuro interested in spreading out infusions while I am wondering if my cidp is just very slow moving and would Plasmaexchange be better.
7. Psyiotherapy. What is possible? What was recommended for you? Luckily I live in a warm climate (Texas) and our pools will be opening soon so I know that will be a good way to exercise sore muscles.

Anyway, if you have a few spare minutes I would love to hear your benchmarks or milestones. I recently reread the original copy of the explanation of cidp and it was a reminder of how much is still unknown about our affliction but also how important the mental attitude is when going through this. Hope many of you are doing well. Bryan F, how are you doing?