Question re: starting of treatment

    • Anonymous
      March 2, 2010 at 5:34 pm

      Hi, I’m maybe going to be starting on treatment soon [my doctor is recommending IVIG]. My former neurologist in September [who thought then that I had CIDP] wanted to start me on treatment, but then a lyme test came back positive and he thought I had neurologic lyme, so I went that route for treatment. After many months of lyme treatment [IV antibiotics], I got somewhat better. But being off treatment, I am very much worse — in fact, worse than ever. My new neurologist believes I do possibly have CIDP after all and is discussing IVIG treatments with me. I feel very worried that so many months have now passed without being on the proper treatment. Has anyone here been put on treatment 6 or more months after their symptoms started, and would IVIG treatment still be successful for me? My symptoms are all burning on my skin and they have gotten very severe. Having an EMG and other tests tomorrow but I hope to start on treatment soon.


    • March 2, 2010 at 7:22 pm

      I guess I would make sure it is cidp and not the lymes, once that is determined either by clinical presentation, ncv/emg, spinal, nerve biopsy or skin biopsy or what ever your doc decides to do, then yes, ivig could still benefit you. Some people take years to get a dx and benefit from ivig. So in answer to your question if ivig would help after a while, YES!!! Some have cidp for years and it is suttle before a noticeable attack. We were dx w/ gbs first given ivig and 5 months passed before we were re dx w/cidp. Our reaction to ivig was with in hours. Everyone is different, some react instantly as was our case, others take a few treatments and others yet may need other things added to ivig such as ivig in cunjunction with pp or steroids or imunosuppressive drugs etc. These are all things that take a while to figure out based on your reactions.

      I am a little confused, you mention that being off treatments you have gotten worse, are you refering to the antibiotic course only, or were you also getting ivig. Cidp symptoms would NOT respond to antibiotics. How long was your course of antibiotics? I have read that some need the iv antibiotics a year or more. How long did you have them? Keep us posted!

    • Anonymous
      March 2, 2010 at 9:27 pm

      Kate.. many people not do get treatments right away. It should still be effective for you. By the time I started ivig I was in a wheelchair and unable to feed myself. That was almost 10 yrs. ago. I have been out of the chair for 8 yrs. now. I still get treatments regularly.
      Good luck kate and keep us upto date.


    • March 2, 2010 at 11:04 pm

      Hi Kate,
      I hope they get the right diagnosis soon and since you’re right on top of getting treated and checking in with the doctors I’m sure you will be healed in time.
      I can only hope that you feel better soon and let us know what is going on.
      This site has lots of wonderful people who are not only supportive and helpful, but very knowledgeable as well.
      Let us know what is on your mind and check in often.

    • Anonymous
      March 6, 2010 at 2:21 pm

      Hi and thanks for the responses. I’ve had some more tests done this week and I now know I don’t have CIDP. However, I have/had lyme disease, and as a result, an inflammatory [autoimmune] process has started and is acting “like” CIDP but this process is mostly attacking my peripheral nerves. My EMG from August showed sensory nerve problems/demyelination, but the IV antibiotic for lyme obviously worked as the EMG this week as 100% normal. However, the peripheral nerve test was a disaster. The doctors are recommending IVIG therapy for me — as I have a process now similar to what you all have here with CIDP, except that it’s a post-lyme autoimmune situation.

      Quite frankly, I’ve been on the internet reading too much about IVIG, and I’m feeling scared. More scared about catching something from someone else in the blood product. I know I should try to put that out of my mind, but I can’t help it. On the other hand, it’s a choice of living this way or taking the risk and life has gotten hard lately.

      Thanks for all the help. Even though I don’t have an official CIDP diagnosis, I am basically in the same boat with everyone else here with the disease I have, so I’d really like to stay connected as I completely connect and relate here!


    • Anonymous
      March 6, 2010 at 5:02 pm

      If it is any help it took me over 10 years to get a clear dx of CIDP. However my type is the very slow progressing type. From what I have seen posted once you get IVIg in most chase the progression is halted and the healing can begin. How far and fast you come back seems to be an individual thing. Each case is different. Hang in there and don’t give up hope. Take it one day at a time and don’t try and rush things.

    • Anonymous
      March 6, 2010 at 7:38 pm

      Hi Kate & welcome.

      My daughter was 4 years old when she was dx’d with CIDP. She has had a TON of IVIG over the last 4 years. I can tell you that I completely understand your fears about IVIG.

      You should know that IVIG has been used regularly since the 1980’s. Since then there has been ONE batch of IVIG (in 1989-1990) that caused an outbreak of Hepatitis. Since that one batch the IVIG manufacturers adopted new & better cleaning methods for their product and there has been NO reported incidents since that time.

      My daughter got a central line infection a few years ago & the home care company had to report it to Baxter (the makers of her IVIG product, Gamma Guard). Baxter had to speak with her home care nurse, the hospital, the dr’s, etc. They took it VERY serious & wanted to make sure it wasn’t a problem with their product.

      They say that they cannot 100% guarantee one will not get a blood born illness from IVIG but I think it’s pretty safe…as safe as it can be.


    • Anonymous
      March 6, 2010 at 10:01 pm

      they’ve got to try treatments? If it walks like a duck..etc.? IVIG can work in either 40 or 60% of those treated with it. Depends on which research you read. For me? It was kind of a no-brainer?
      Why? I was ‘borderline osteo’ and steroids could do damage, and I’d a family history of Cancers. So my ‘options’ were either Plasmapherisis or IVIG. After searching the web for hours, days and months? I determined that this essentially pasteurized/processed blood product was worth a try. You have to understand tho? That it might entail a life long commitment…insurance and other resources willing. So far? So good.
      For me, testing was various nerve and muscle conduction studies done over a five month period; a sleep study [?]; heaps and heaps of blood work; MRI’s and CT’s with and w/o contrast of the entire spine and a spinal workup. I managed to avoid the nerve biopsy and the skin biopsies were not an option at the time I was tested [still in ‘research phase’] . I ‘aced’ all the requirements for treatment w/o the need for biopsy. I believe there are about 10 criteria for diagnosis, and if you meet 4-6 out of the ten? You’re in. IF anything is marginal or ‘inconclusive’? Then biopsies might be needed. I would NEVER do a full seural nerve biopsy[IMHO]. Many insurance co’s no longer cover them as they leave you super-prone to infection, and if the samples are not handled super-properly? They cause damage to some nerves you mite have left, and end up not proving a thing. The skin biopsies tho? I’d try that if you feel things aren’t conclusive. BUT ONLY THEN!
      As for that instance of product failure? Once you learn that the controls resulting from that instance from the FDA thru to state and pharmacies now in place are soo strict? That failure to comply can cause an infusion facility to lose their licenses? And same for the pharmacies? The stuff is strictly controlled! I have no fears there. I actually reported one of substitution of one brand for another…that can be disastrous and it was for me.
      For me? IVIG seemed the least invasive and most ‘organic’ way to go.
      And, yes, IVIG does seem to be scary at first? But, think of it like this…it’s as much or more controlled than blood transfusions! Those who administer it are far better trained to do it than say ER nurses. And what’s put into you is far safer thru the product and process than most drugs for sure!
      Yes it [I]could be[I][/I][/I] lyme’s but, if your doc is willing to give it a try? Go for it! I wish you luck in your diagnosis and that you do give it a try, most docs will do it for say..3 months? And write down how you feel about it all, before during and after. Any reactions at all, either call the doc or the IG manufacturer. Do a web search of Brand X ‘Prescribing information’ and read all about the side effects! Be aware of what are ‘red alerts’? And what is annoying. The annoying can feel like alerts at times. After the 10th time? It’s all BORING! But necessary if it works! Good luck and ask questions away. You won’t know if you don’t ask them. – homeagain
      PS YOU[B]could[B][/B][/B] have both tho? Don’t write that off? But I sure hope you don’t!

    • March 6, 2010 at 10:02 pm

      I too had those fears, but they were soon put to the wayside when I saw what a miracle it was. To go from not being able to walk, lift an arm, urinate etc. to running a day later. Once I investigated further, I was more confident. If you are absolutely fearful, are steroids an option? The problem is there are also worries that come with steroids. I feel safer with the ivig, but each individual has to make their own choice. Good luck in your choice and research.