Prickly/water droplet sensations

Hi bny806,
As I noted the other time I posted – I don’t post very often. But your symptom is very curious. I was diag’d 10 years ago with CIDP Lewis Summner variant. There have been many times that I have experienced the same sensation. Most always on my upper legs. Usually when its hot and I have exerted myself . Its a strange feeling but you describe it pretty well. For me its a kinda cold sharp prickly feeling. I never told my nero because I was afraid he would send me to a shrink. LOL
Two rounds of IVIG now on Rituxan.

Yes, this is something I feel periodically. Sensations feel either like splashes of very hot water, like you, I always look, expecting to see water on my leg.

dmcheney—do you mind sharing your rituxin experience? I am getting ready to start it and would love to hear others experience—-especially if they were successful with it!!! do you have the anti-mag or just cidp. I do not have the anti-mag but every rituxin post i have read seems to have that diagnosis. Did your Dr have you go through complete cancer screenings before starting—thats where i am at right now.
sorry bny–didnt mean to jump in on your post…havent heard from you in a while, hope you are doing well and continuing to improve on the ivig 🙂 Lori

Hi Lori:
I have CIDP (Lewis Summner Variant). I have Monoclonal Gammopathy (MGUS). Blood produces an excessive amount of the IgM anitbody. I have been through IVIG treatment (in 2010) with little change. The Nero ended treatment mostly all though 2011 except when I saw him in Oct 2011 and complained that I felt I was getting worst. He updated my NCS & EMG which indicated I was losing Axon. The oncology/Hematologist I then met with suggested Rituxan therapy. (He had already ruled out blood cancer). I had 4 infusions in Jan 2012 – one per week. The most significant thing I can tell you is that your body’s first reaction to or experience with Rituxan is key. The Dr told me if I didn’t react adversely to the medication right away I would be home free. However, my first infusion I had no problem during the 4 hour infusion, but when I got home I felt I had a reaction to the stuff. I got a fever and felt flu like symptoms and my skin was on fire. I called the Dr and he said “your ok”. I took some tylenlol and went to bed. Woke the next morning feeling ok. Now, the next 3 infusions went without a hitch – absolutely no negative reaction . The only reaction seemed to be with the Benedryl. Makes you feel pretty woosy. At this point I can not say it has done anything for me. What I have heard is that if it is going to help it may take 6 months. So I am being patient. I wish you great success. Dave
I hope this is helpful. Good luck

Yes very helpful Dave—-thank you. so did they go real slow with the infusion rate for your first time? My dr is saying 1000mg 2x in two weeks then repeat in 6 months. how many mg did you get? she said it would be more rituxin to do it by the standard 1000mg protocol then to go by my body weight, and thought hitting me right off with a large dose would make it so we could really tell whether it was going to work. Sounds good i guess, but makes me a little more nervous about having some sort of reaction to it.
did your dr say it should take just 3 rounds of infusions unless the cidp returns? Is MGUS the same as anti-mag?
I was wondering about the benedryl too. I dont have any reaction to the ivig, no headache at all—except for my first infusion when they gave me 50 mg of benedryl. after that i took only 25 and no headache. so i had more reaction to the benedryl than the ivig. do they give you a lot of benedryl with the rituxin? My ivig infusion nurse thinks they might order iv benedryl with the rituxin—sound like a definite headache and wooziness—better not plan on returning to work that day.
so will you have another round of infusions in june regardless-or only if you get improvement from the first round? is rituxin the first immunosuppressant you have tried? It will be my first. Are you tired of all these questions yet??? LOL thanks for sharing your experience—-people who have already been through it are so much more knowledgable than the Drs and nurses. I hope the rituxin kicks in for you and starts working–the axonal damage takes longer, i have axonal damage too. thanks again for the info. Lori

Lori
The infusion rate starts at a reduced pace and then as you tolerate the Rituxan then they speed it up in increments. I reveiwed my billing and it had indicated 100mg of Rituxan and 50mg of Benadryl. I do believe they mix the Rituxan in solution so in total they give you more. 1000mg seems like a lot. In addition to web research you should try and review posts by Allaug and Norb. They have a lot of good info. They have discussed anti-Mag vs MGUS. There is a difference. It’s technical and confusing. I am an accountant and I believe researching neurology issues is like reading the tax code. It seems that the standard protocol is a loading dosage (for me once a week for 4 weeks) and then maintenance (for me that is – wait 5 months for the next infusion and then one every two months thereafter). So I had another infusion just last week. I would plan not to go to work. I have had only IVIG and the Rituxan. I was premedicated with claritin and tylenol. I had no headaches.
good luck again. Dave

Bny–i agree, i really miss the private messaging feature too—that way we could talk back and forth without intruding all over each others posts. that is good you got your infusions every other week now 🙂 hopefully that will help. Im back on the loading dose 2 days every 6 weeks–not really enough, but getting me through until i try the rituxin. should be starting in the next few weeks. due to the paraneoplastic antibody i have, the dr is making me do a full cancer screening before starting, upper gi, lower gi, pelvic biopsy—all joyous stuff–lol!!! i have never heard of carrimmune, have always got gamunex for ivig. good luck with it–keep me posted, i had no side effects from the gamunex, but then again i dont know if that’s such a good thing,because i didnt get better on it either???
Dave– i have read the posts you were talking about, Allaug had success with rituxin ,Norb did not, i also read Soapy’s–he kept a diary of his time on rituxin, he went into remission on it 🙂 so was the infusion you just had the beginning of your second round? yes i agree you practically need a chemistry degree to figure out some of rituxin talk–lol. I dont have anti-mag or MGUS but my igm and igg is slightly elevated, and i have a paraneoplastic antibody (VGKC). Im just trusting my DRs judgement on this rituxin thing, i suggested an immunosuppressant since im continuing to progress after almost 3 years on ivig and she chose rituxin. the protocol is different, mine is a higher dose in two instead of four infusions. Guess with the possibility of that much benedryl , i will plan on not working, plus infusing 1000mg at a slow rate will most likely take all day anyway.
im curious to see if you will see any results after this next round of infusions? did you get absolutely nothing with the first four? did you continue with the ivig once you started the rituxin? i’ve seen it both ways, some have both, my dr is stopping the ivig while im trying rituxin. good luck to you too–and thanks again for sharing your info on the rituxin. Lori

I have to say I am thrilled to hear you have or had brisk reflexes as I do too…I am petrified of ALS. I have 3 young children and HAVE to be here to raise these amazing human beings. I think I also have some CNS symptoms, as I get dizzy and blurred vision. I am not weak yet, just super fatigued with muscle pains which come and go, twitching and lots of tingling and electrical impulses. Please let me know if you experience this too and I am hoping these are consistent with CIDP, not ALS. Best of luck to everyone on this journey!

heathermansfield–I have twitching (fascilations), tingling and the electrical impulses and my diagnosis is cidp. Lori