Hello I have had two ivig treatments the lasyt only being one day for 6 hours and am supposed to get that for thrree months once a momth . I am having brief stinging sensations all over not just in arms and legs . They " jump ' all over and can be quite painful like a sting . I sthis soemthing to be expected after being treated , I am so confused . Does this mean things are getting worse . Will not see my neuro untill after the next two months treatment and just would liek soem thoughts as to what may be going on as these latest symptoms are new to me , as I write this I feel them jumping arpunf my arms , hands feet and legs but also on my face lip area
Welcome! Have had 2 rounds of IVIG.........I get 3 days in a row, pretty much when I feel it's needed. Two times and two different responses. First time I began to feel pretty good, this time I feel like I am regressing with not much change, have had two weeks of feeling so tired in addition to the numb feet. From reading people's responses, IVIG varies from person to person. If you are having problems, perhaps a call to your neuro is in order. Hope you feel better!
I have only had ! IVIg treatment and I am having the same effect but only in my right big toe. Very sharp pain & ony for maybe a second, but it happens a lot when I am laying down. I have my next IVIg next week. 2 days in a row. Hate to think that it might get worse. Hope things get better for you.
I'm waiting on insurance clearance for my first IVIG. I've read a lot of posts everyone has put up on this forum. From what I've read the brief stinging sensations do happen to others. Oh, not everyone, but it seems to be common for many of us. I'm sure others will give you similar input as did Carol. So I believe you will be fine in a few days and this too shall pass. I think CIDP and how our bodies react to the drugs are so unique. It's like dining ala-carte. Our bodies look over the menu and select the problems we will have with our CIDP and how severe they will be. Next step, the body chooses which drugs it will allow to make progress with the CIDP and what reactions to the drugs the body will have. Annoying. Frightening. For my odd sense of humor I find it very funny that we all have the same thing and are all so different. Let's just cling together here, and with friends and loved ones at home. Write often, express your fears and doubts; your joys and gains. I'll certainly give you mine! Hugs Mary!
I like Joe D's answer in that we need to all stick together on this. I have similar symptons and they come and go. It feels like someone has just stuck me with a pin. Alarming and unexpected. Mine comes around like yours when lying down. Right about the time that you want to doze off. It is almost unfair. Keep your chin up you have a lot of friends out here to lend an ear.
Hopefully others will respond to your question. We all have different sets of symptoms. I will relate the ones that I have that sound like your's. I experience "pin pricks" all over my legs. I also have muscle twitching on my upper and lower body. Doctors use the term "fasciculations" (fa sic u lations) instead of "twitching" but it means the same thing. Sometimes mine are painful sometimes not. I dont think it means things are getting worse, it is just part of the group of symptoms. I share your concern and hope you are comforted. Try to establish a means of corresponding with your doctor through his nurse if necessary (by phone, fax, email, text or whatever) So that when you are frightened you have someone to talk to. The friends on this site are wonderful and helpful. May God Bless you. mike
5 straight days of IVIG is usually given initially to jump start and then a maintaince of weekly or monthly depending on your own personal response. Usually the time is based on trial and error which taper meds to a minimum amount that will still be effective. IVIG often brings additional pain and fatigue for a few days before it settles and the bennefit is noticed. Methylprednisolone is sometimes used in addition to the IVIG to off set side effects and provide additiona strength. In my experience additional shooting pains or symptoms can be temporary if I'm getting sick, too much activity,or swelling from my monthly cycle.
If the pains continue or worsen without explanation your dose may need adjustment. I think a week would be a reasonable amount of time.
Most importantly don't panic. There's lots of options left for you.
Hi Mary, yep, that's pretty normal. It's really weird when it's in your stomach and tongue! I'd get twitches, stings, zaps, pokes, and sometimes cramps. It takes a while for it to go away with IVIg and they may come back between treatments, usually right before you are due for next infusion. I've been getting IVIg for about a year now and this has been my experience. I am also on prednisone from 20mg down to 10mg now. Tried to get off pred altogether last year and was off it for about 2 months but IVIg alone wasn't enough for me. Next month I am going to Northwestern Univ Hosp for a stem cell transplant in hopes of getting rid of CIDP once and for all! God bless.
I've had IVIG twice now with acute aggressive relapses in between. My doc said when the nerve coating (myelin sheath) rebuilds I could have all kinds of weird sensations. Apparently the coating rebuilds unevenly and the nerve signals can sort of short circuit on the way to the destination. I don't claim to be an expert but my doc's explanation made a lot of sense and eased my anxiety. I know I'm relapsing when my symptoms hang around and progressively get worse over the course of about 5-10 days, then I start going down hill fast. When my symptoms come and go I know its just my nerves rebuilding. Hope this helps...I know everyone's symptoms are unique. You will figure out what is normal for you. I keep a journal to document my trends and that also helps the doc.
Dear Jen , Carol , Joe, Mack , J Michaels, Mabes , Wendy and Rachel , Than k you all so very very much for your replies , You have all helped me soooo much! . I am sorry for not replying individually to you all , please know all your messages have helped a lot and are reassuring to me . It really helps to talk to those who know what one is going through . I will be reading them all again so as to absorb all you have told me . I felt a lot better for two weeks after the treatment before my last but my last one did not seem to help as much and now these new Symptoms . I willbe getting my next IVIG in about two weeks time , Ash Wednesday and then another a month later after which I have to see my Neuro.Oreginally I had my first treatment for five days last September , Then that Neuro left his practice and I did not have a follow up . It took a while to find my new Doctor who said I had not improved as there had not been a follow up treatment , So the day after Christmas was when I had my one day 6 hour treatment , The terrible cramps at night stopped for about two weeks and then symptoms came back so these latest symptoms have coem after my second treatment from this Doctor , I hope that makes sense . Thank you all once again , You really have been abig help
I read the protocol to qualify for the stem cell transplant. As I recall you had to effectively fail on everything including IVIG. (But, My memory may fail on the exact qualification to enter the study.) What did you have to prove or do or fail or whatever to "qualify" for the stem cell transplant? mike
Wendy said:
Hi Mary, yep, that's pretty normal. It's really weird when it's in your stomach and tongue! I'd get twitches, stings, zaps, pokes, and sometimes cramps. It takes a while for it to go away with IVIg and they may come back between treatments, usually right before you are due for next infusion. I've been getting IVIg for about a year now and this has been my experience. I am also on prednisone from 20mg down to 10mg now. Tried to get off pred altogether last year and was off it for about 2 months but IVIg alone wasn't enough for me. Next month I am going to Northwestern Univ Hosp for a stem cell transplant in hopes of getting rid of CIDP once and for all! God bless.
Can you share what you did to qualify to receive the stem cell transplant?
mike
Mary said:
Dear Jen , Carol , Joe, Mack , J Michaels, Mabes , Wendy and Rachel , Than k you all so very very much for your replies , You have all helped me soooo much! . I am sorry for not replying individually to you all , please know all your messages have helped a lot and are reassuring to me . It really helps to talk to those who know what one is going through . I will be reading them all again so as to absorb all you have told me . I felt a lot better for two weeks after the treatment before my last but my last one did not seem to help as much and now these new Symptoms . I willbe getting my next IVIG in about two weeks time , Ash Wednesday and then another a month later after which I have to see my Neuro.Oreginally I had my first treatment for five days last September , Then that Neuro left his practice and I did not have a follow up . It took a while to find my new Doctor who said I had not improved as there had not been a follow up treatment , So the day after Christmas was when I had my one day 6 hour treatment , The terrible cramps at night stopped for about two weeks and then symptoms came back so these latest symptoms have coem after my second treatment from this Doctor , I hope that makes sense . Thank you all once again , You really have been abig help
Hi! I have had several IVIG treatments with several different effects however that wasn't one of them. I would think if it is making you that uncomfortable and causing you that much pain you would want to call your neuro before your next treatment. Good Luck!!
Hello Tess , I called my Neuro and she said it was not from the IVIG It was from my CIDP , She put me on Neurontin . I did not like how I felt on it so have decided to just take it when things get REALLY bad , I have had another treatment ( last Thursday and for two days had really bad pain on inner tighs but tat is gone now , maybe I overdid things too fast after treatment .