CIDP Outlook can be GOOD
AnonymousJanuary 3, 2008 at 3:04 pm
Hey everyone. i am new here. I have never even met anyone besides my doctor who knows what CIDP is, much less has had it so I am glad to have found this site.
Just wanted to let you know that I too am a patient of CIDP. I read the article in October 2007 Men’s Health, and was surprised at how similiar it was to my experience. I’ve been through the works, as we all have been. You know, the weakness, the tingling and twitching and uncertainties about the future and the condition along with spinal taps, MRI’s, electrode tests, and all of that just. It took months to diagnose me. It was tough at first, I couldn’t see straight for a couple of weeks, and then a couple of months later I was so weak that i couldn’t eat on my own or dress myself.
Well, I have been on prednisone for 2 years now and I hate the stuff like everyone else. They tried weaning me off it, and the CIDP came right back, so I have been on a decent dose the whole time, along with some Azathioprine.
But what I really want to say is how grateful I am.
You know, when I first got the symptoms, i wondered if I would ever have my active life back again. We all have thought that I think at one point. Would I ever run, waterski, wrestle, or bike? Or were those days a thing of the past? It makes you grateful for the simple gift of your health, and the basic day to day functions that you can perform once again.
I know I am writing a book here, and I apologize, but here is the better half of my story.
Shortly after being diagnosed, I struggled to get back to my old self. I was lucky enough to have steroids work for me. It hasn’t slowed me down. Yeah, there are still some residual effects and setbacks, but they are acceptable i think.
I have since then put in a season of firefighting on a very demanding helitack rappel crew and I compete with the wrestling club here on campus. I am still able to enjoy waterskiing, horse back riding, motorcycles, hiking, hunting, and every other thing I used to do.
In fact, this September I entered a marathon in my hometown and won my age group, finishing in the top 15 overall. I serve as the student body vice president of the university I attend, and I try not to let this illness get to me.
I know I am lucky- but if anyone else out there is young, or is scared of the outlooks of CIDP, please know that its all good. Sometimes the drugs are a bit aggravating, and I know my story is only half over, but I hope you know that its do-able.
So thanks everyone (in case you are still reading this 🙂
Also, I have a question for anyone who would like to bite:
i have been on steroids for a long time now. The side effects are not very appealing. I haven’t tried any other treatment. What do you think?
January 3, 2008 at 3:31 pm
What a nice story! My son is eleven, he has had cidp for 15 months now. We have had some ups and downs, but now are on a firm cidp dx and a firm ivig schedule. Steroids were brought up to us, but there was no way I was going to agree to them, obviously the side affects you know about, but most importantly, he has not experienced puberty and I did not know how the two would mix. In any event, he was much like you, at the end of or should I say peak of weakness, he was not able to walk, dress himself,etc. We used ivig as our treatment course. Within hours, he was doing push ups and running down the hospital halls. You mentioned you were wondering if anyone used any other forms of treatment, would you consider ivig if the steroids are getting to you? I wonder if we will ever have to switch to steroids.
Like you, Kevin has regained his life and plays like a normal wild 11 y/o boy. We had a paintball b-day party yesterday, he jumps on the trampoline for hours. I am so glad you have regained your life as well, and it is encouraging to me to know you are functioning at school, well more than functioning. College is a major concearn to me. Your mother must feel so blessed that her babies life was given back.
I don’t know about you, but I have noticed a profound emotional change in Kevin as well. He already was a sweet kid, but now he is even sweeter and stronger. I feel that if you guys can make it throught this, nothing can stop you guys!!
Good luck to you in your continuing journey, both as a young man and a cidp survivor.
Dawn Kevies mom
AnonymousJanuary 6, 2008 at 10:29 pm
To both of you young folk, stay away from the Prednisone. I have been on it for 5 years, and my body is so addicted to it and I’m beginning to feel it in my bones and eyes. I can only reduce the dosage by1 mg every 2 weeks or so. It wipes me out. I am old already, and advise you young ones to only use it as a last resourt.
AnonymousJanuary 7, 2008 at 3:17 am
It took me 7 1/2 yrs. to get off of prednisone. At one point I could only drop it by 1/4 mg every 2 weeks. The withdrawal was horrid but it was worth the struggle to get off of it! The drug can be life-saving but as you have learned the side-effects are questionable. I have GBS but acquired a very rare lung disease 5 months into GBS. The prednisone kept the inflammation in check long enough for my body to heal its self.
I have no experience with it in regards to CIDP. I wish you well 🙂
AnonymousJanuary 10, 2008 at 10:48 am
You story really cheers me up! We can come back and do what we used to do!!! Even though my neuro and I are not sure that I have the cidp or GBS, the possibility for cidp is pretty high because the GBS has gradually worsened my health for 3-4 months. I will make sure what I am fighting with ASAP. Now, I’m taking prednisolone only 20 mgs a day which is not comparable to people who have cidp, taking high doses of prednisolone. I have one question for you.
How much prednisolone are you taking now? (You answer will help me when I talk to my neuro in case I have cidp)
AnonymousJanuary 10, 2008 at 9:53 pm
I have had CIDP since Nov. of 02. Started out at 80 mg prednisone every other day ( along with Neurontin, Imuran, Zantac and IVIG 3 days monthly).By this Sept the Pred. was down to 36mg. eod. The hot weather makes reduction difficult for me. But ince Thanksgiving I have been working hard at reducing and am just today at 30 mg. It exausts me when I reduce it. In June all of the other meds were reduced somewhat. I feel better. But remember, it has been 5 years since onset and time to try to rid my body of some of these meds. The Imuran was cut by 1/4. The Doc at Hopkins said it was too much for my body weight. The Neurontin was cut to 400 mg x 2/day.
I thank you Judy Z for sharing that it took you 7 1/2 years to get off. I won’t feel like such a pantywaist for taking so long! I met another woman who was on for 24 years and got off in 4 months. Go figure. I will pray for all of you. Judy I hope your lung disease is gone. You got a double whammy.
AnonymousJanuary 10, 2008 at 10:21 pm
I was on prednisone when I was first DX with CIDP two years ago, and I thought I was super woman. Then I turned around and I gained 50 pounds and my face was fat and round, my face had broken out like I was 16 years old, my belly looked like a round ball and I stayed up all night. OH and nothing filled me up, it was like I could not stop eating!
I was on it for 6 months, I was tired out of my mind but I let it go cold turkey. The sad part is that it helped me so much. I’m now taking IVIG and It has helped me, and I have good days and still some bad one’s when it comes to that weakness and shaking. Over all I’m thankful to still be alive.
AnonymousJanuary 11, 2008 at 5:31 am
Flyin, thanks so much for the success story. It really helps to hear people living life despite these illnesses. I logged on with the hope to read something encouraging since I am having a harder time the last month and the neurologist once AGAIN is raising the possibility of MS or CIDP, but not wanting to treat.
Strongly consider/discuss the possibility of pulse doses of steroids either high dose IV (or orally). What has been discussed in this forum recently is solumedrol (IV methylprednisolone) about 500 mg weekly at the beginning and then possibly spread this out very slowly. Because you have been on oral steroids for quite a while, you would need to wean off them if they are taken daily as well as do a pulse dose. IT IS REALLY NOT SAFE TO COLD TURKEY OFF STEROIDS. Thank goodness LamkeG was okay, but high doses of daily steroids suppress the body’s production of its own steroids (hydrocortisone) by the adrenal gland and it takes a while for the body to adjust to making these steroids again. This is why everyone really should always wean slowly off steroids if you have been on them for more than 3-4 weeks. Steroids by mouth every other day are much better for the rest of the body than steroids by mouth every day. Most people however, start with daily steroids to see if they will work and then transition slowly to every other day steroids (at the hospital I work at, typically we go up on one day as we go down on the alternative day so the total is about the same over the two days and do this change over a month or more with particular care to be slow and gentle when the low day is getting very small.
I work with people (mainly children and adolescents) with blood problems and cancer and we use four days monthly of high dose decadron for autoimmune diseases with frequent good results on the disease and not very many cumulative side effects (often the children are moody for the four days of steroids, but this is better than all month and they typically do not gain weight, have so much glucose/blood pressure/bone density issues, and continue to grow. Anyone on steroids has to be careful about infections, but we also do not see any more and probably less viral infection concerns.
With Hope for cure of these diseases and better management until then.
AnonymousJanuary 12, 2008 at 5:51 pm
hey flyin… great post. i left you a private message thanking you for the upbeat, glass-half-full attitude you seem to have. i couldnt agree with you more. i dont give this thing (cidp) any energy at all. i aknowledge it and deal with it and i am doing great. i dont do any medication other than my IVIG once a month and a lot of natural supplements… long walks on the beach with my sheepdog, lots of fresh air and exercise, and a good , healthy self image…. that’s all i need. LIFE IS REALLY GOOD. steven
AnonymousJanuary 16, 2008 at 1:54 am
flyin’, and everyone
hi! AND CONGRATULATIONS. I started out on prednisone and Imuran (aziathropine) as well. In the beginning my symptoms werelighter and easier to treat. I hope it stays that way for you.
In fact, one of the gov’t resources says that most people who have CIDP can have a near normal life with treatment. In my case, the first 10 to 12 years were so slight, I was able to ingore it more than not. CIDP is not always a disabling condition.
As with most things, some gets it worse than others. I am happy for you and hope things stay good.
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