different ways to treat cidp

    • Anonymous
      January 27, 2009 at 7:43 pm

      Hi guys, I have been reading through the posts on this forum and it seems to me that the canadian doctors have a different way to treat cidp then the doctors in the states do..I was diagnosed with gbs on Oct 12 2007 and was put in hospital on October 29 2007 but my symtoms started in July 2007 when I was hospitalized I was then sent to St. Mikes where I was told that it was cidp and I had 5 treatments of ivig in hospital, I lost all body fuctions and was put on a ventalator to breath I was in ICU for the best part of the 3 months I was there. I was also put on predisone high does that I was on till September 2008 weened off them slowly, I cant understand why some people are having treatments of ivig years after (2-5 years) they are diagnosed I had to learn to walk and feed myself used a walker and a cane, my feet still tingle and go numb. Why the difference in the treatment from here to there. I’m just interested in the reason.Brenda P.S. dont mean to sound wierd but I’m confussed about it

    • January 27, 2009 at 8:23 pm

      Brenda,
      When a person has cidp, there are additional treatments after the initial onset, to prevent further damage with each new attack. The ivig PREVENTS future attacks. Once a time frame of relapse is established, a schedule is determined. Most information states that steroids are NOT beneficial and could be counterproductive when treating GBS. GBS usually is first treated with ivig or pp.

      I guess I would say if you stopped all treatment and have not gotten worse, I would say you are in remmission. That might be why your treatment was different. On the other hand, you do mention tingling in your feet, are there any other symptoms? If there are other symptoms, I would say you need additional treatment.

      It sounds like you are from Canada, if so, perhaps the health care system deems the most inexpensive route be taken if it works.

      Check out a member by the name SueW, she is from Canada and I think either JudyZ or Jan also is from Canada. Good luck to you!
      Dawn Kevies mom

    • Anonymous
      January 28, 2009 at 12:01 am

      Hmmmm….

      I’m thinking maybe you didn’t have CIDP & had GBS instead. Reason being is that CIDP VERY VERY VERY rarely ever affects the lungs so much so that a person ends up on a ventilator. Also most people with CIDP see improvement much quicker than those with GBS – most people don’t require hospitalization for 3 months with CIDP but is common with GBS.

      People with CIDP must continue to get treatments as it’s a chronic condition. That’s why folks end up getting treatments for years. There is a percentage of CIDP’ers who will go into remission.

      If you did have CIDP then you were lucky & have reached remission.

      Kelly

    • Anonymous
      January 28, 2009 at 8:38 am

      I was in hospital for that length of time also for rehab, I had to learn to walk and stand due to the fact my muscles had gone. I was told that I will have a relapse and that I will have to go on the steriods again when that happens..I guess that this illness dose hit everyone different and the hopefuuly everyones out come is remission

    • January 28, 2009 at 9:31 am

      Brenda,
      If that is what they told you, that you will relapse, you do have cidp, especially since you still have tingling/numbness in your feet. The only thing that I question is their method of treatment. I will try to be short, so if you have questions, pm me.
      Your docs may be allowing you to relapse to figure out about how long it takes you to relapse. Once they know the time frame, they should keep you on a consistent treatment plan. You must have the treatments before the symptoms start. If you feel the symptoms, the attack has already started and NEW damage starts again. Each time the damage that occurs may be damage that cannot be repaired. Canada may use the steroids because the cost is pennies, however, you cannot be on them long term, they have serious consequences long term. IVIG would be the better first choice if it works for you. A typical protocol is the 5 day course that you had to be followed by maint. doses monthly, bi-monthly, or even weekly, depending on your needs.

      If steroids are your only option, then that is what you have to do. It is best NOT to let the disease process continually start and stop. Try to pm SueW, or start a thread for fellow Canadians, I know others ARE getting IVIG. Good luck to you.
      Dawn Kevies mom

    • Anonymous
      January 28, 2009 at 5:12 pm

      I think I might be confused.

      Were you diagnosed with CIDP without ever having a relapse?

      Did the dr’s diagnose you with CIDP because the progression of your symptoms was so slow? What criteria did they use to make a CIDP diagnosis? What tests were done?

      Have you ever relapsed?

      The last time you had any treatment for CIDP was in September? Have you been to a neurologist since then for an EMG or other basic neuro assessments?

      Did you ever have relief from the numbness while you were on treatments?

      Kelly

    • Anonymous
      January 29, 2009 at 7:45 am

      Hi Brenda,

      These are all good topics here. I work for a Canadian company and know alot of folks from Canada and people within our company have CIDP, GBS and MS. To me and talking to them, the treatments are protocal.

      There is Global Posting going on here and many of the heads of their Neurological locations work across the aisle and with respect to other Medical
      Practice’s for other countries. They all try to do what works the best for the patient.

      Your particular experience sounds unique as is most of us. I would be careful of the signs of relapse, especially if you are in the CIDP category or somewhere inbetween, because it is sneaky stuff. Never out of the woods, especially with CIDP.

      We all hear about GBS patients later redeveloping symptoms and then get labeled into the CIDP category, and many with added conditions like Lupus and many other conditions as the body changes over time. this may be your situation. –Good Luck–

    • Anonymous
      January 29, 2009 at 12:49 pm

      [QUOTE=TJRPT6]Hi Brenda,

      These are all good topics here. I work for a Canadian company and know alot of folks from Canada and people within our company have CIDP, GBS and MS. To me and talking to them, the treatments are protocal.

      There is Global Posting going on here and many of the heads of their Neurological locations work across the aisle and with respect to other Medical
      Practice’s for other countries. They all try to do what works the best for the patient.

      Your particular experience sounds unique as is most of us. I would be careful of the signs of relapse, especially if you are in the CIDP category or somewhere inbetween, because it is sneaky stuff. Never out of the woods, especially with CIDP.

      We all hear about GBS patients later redeveloping symptoms and then get labeled into the CIDP category, and many with added conditions like Lupus and many other conditions as the body changes over time. this may be your situation. –Good Luck–[/QUOTE]
      Hi TJRTP6 thanks for the input the nuero guy says that a relapse is going to happen at some point and I have seen hi since September and had the nerve test doe and he says that the muscles are doing great as are the nerves not 100% but 75% and that I am to watch for signs that would put me in a relapse I know that they said that I was very lucky to were I am today and it is to the amazement of the staff at the hospital that I am were I am, I just hated what happened and 2 days out of hospital I was making butter tarts it toke 3 hours and alot of crying because my body was not doing what I wanted it to do but they got done and I toke them to the hospital. I know that when I get stressed my toes go funny and I cant work like I use to get tired very easy and that is part of it one of my good friends had ms and we were on the same meds in the hospital and when I got out the one thing that I know is that I can and did ge better and she well not so I am very lucky. Any way I hope that you are doing well and that you have great days too thanks Brenda:)

    • January 29, 2009 at 7:00 pm

      Brenda,
      If they won’t give you IVIG, do they provide plasma exchange? This is often a good second choice if IVIG is not available or is not authorized. It was a big help for me when IVIG did not work. I was on oral prednisone for a little over two years without complications (other than a 40 pound weight gain). They did liver and kidney function blood work every 3 months to stay ahead of any serious side effects. Good luck to you.
      Fred

    • Anonymous
      January 30, 2009 at 6:40 am

      Hi Brenda,

      It just sound like your doctor is doing a similar thing mine did. Although you onset and attack was very severe and indicates GBS, when they tell you that you will have a relapse, then they must be stuck on CIDP.

      I knew I had CIDP and was getting worse, but not at a drastic rate. The nutty professor took his darn time and made me wait 18 months to get the treatment he knew I needed. He gave me steroid that had me worsening and even doing steps on my butt. He did two EMG’s that showed damage and activity. I have now chalked it up to he was watching me and doing a basline thing in head. It is aweful and doesn’t make sense when we suffer like that to the point of disability so severe. I say its political and about the insurance companies knowing they will be paying for this for a long time.

      I do understand that Canadian HC system is way different. I hear about people coming down to the US for MRI’s rather than waiting in line and how they prioritize who gets what and when. I hope that never happens down here, so I don’t know what your going through with getting the right help and appologize for perhaps commenting on something I don’t fully understand.
      Try to seek help from the other members mentioned because they may be able to assist you greatly!

      I am hopeful for you that you continue to improve and if you do have more symtoms that your doctor becomes timely with treatment that will work for you.–tim–

    • Anonymous
      January 30, 2009 at 10:10 am

      [QUOTE=GAVol]Brenda,
      If they won’t give you IVIG, do they provide plasma exchange? This is often a good second choice if IVIG is not available or is not authorized. It was a big help for me when IVIG did not work. I was on oral prednisone for a little over two years without complications (other than a 40 pound weight gain). They did liver and kidney function blood work every 3 months to stay ahead of any serious side effects. Good luck to you.
      Fred[/QUOTE]
      Hi Fred, I got 5 treatments of ivig and th first one I got better for about 3 days then I took a nose dive and had to go to ICU thats when the breathing was effected and was trecked then I had 4 more treatments with steriods and after 2 1/2 months in hospital I went home on multiple meds but the steriods were top of the list I was on them for 9 months being weaned off slowly I saw the nuero guy every 2 months for nerve tests and to decrease the steriods the weight gain was not great but I was out of hospital at 100 lbs so thats ok so now its the waiting game as I was told..:)

    • Anonymous
      January 30, 2009 at 10:19 am

      [QUOTE=TJRPT6]Hi Brenda,

      It just sound like your doctor is doing a similar thing mine did. Although you onset and attack was very severe and indicates GBS, when they tell you that you will have a relapse, then they must be stuck on CIDP.

      I knew I had CIDP and was getting worse, but not at a drastic rate. The nutty professor took his darn time and made me wait 18 months to get the treatment he knew I needed. He gave me steroid that had me worsening and even doing steps on my butt. He did two EMG’s that showed damage and activity. I have now chalked it up to he was watching me and doing a basline thing in head. It is aweful and doesn’t make sense when we suffer like that to the point of disability so severe. I say its political and about the insurance companies knowing they will be paying for this for a long time.

      I do understand that Canadian HC system is way different. I hear about people coming down to the US for MRI’s rather than waiting in line and how they prioritize who gets what and when. I hope that never happens down here, so I don’t know what your going through with getting the right help and appologize for perhaps commenting on something I don’t fully understand.
      Try to seek help from the other members mentioned because they may be able to assist you greatly!

      I am hopeful for you that you continue to improve and if you do have more symtoms that your doctor becomes timely with treatment that will work for you.–tim–[/QUOTE]
      Tim, thanks for the words and I do feel that I’m so lucky I have never had to wait for anything mri and tests they have been great here, I know that I’m in remission and am very lucky to have it happen now, and its great to be able to talk to you guys about it… its a waiting game, as is everything else in life and one must go on and smell the roses and thats what I’m doing and I hope that you are doing well and can see some light thanks again Brenda:)