Hello new CIDP Diagnosis
AnonymousJuly 18, 2008 at 8:53 am
😮 :confused: Hello to you all . My name is Paul I am from the UK 36 and
I was diagnosed with CIDP a month ago. I started having symptoms back in mid Feb this year and have undergone a lumber punctre showing raised protein levels with no increased cells and have had my emg tests showing axonal damge & demylenation. I have to say my neuro was bang on and has picked this up pretty quick judging by some of the other stories on here.. I have just got out of hospital after having my first ivig session 5 days at 35g Vigam.. The treatment went well no side effects just on the first infusion a temp spike so they slowed the next infussions and everything ok. I have now started prednisolone @ 95mg a day with 50 mg Azathioprine.my question is this just before hospital I was about a week away from a wheelchair but I have noticed a return of some dexterity and strength before even exiting the hospital. I am slowly seeing an improvement but am not sure what to expect after my treatment. Do i push and try to get strength back in my mucles or ake things slowly.. I have no effects from the pred does it take a while for the so called side effects to kick in or are they fairly instant ?
Sorry for so many questions but I am so glad to get a fast diagnosis and treated quickly but am now unsure what to expect !
AnonymousJuly 18, 2008 at 9:59 am
Welcome to the forum! You will find a lot of very helpful people and answers here! It is very exciting after your first IVIG to get some positive results!! I thought it was a miracle and it was. Don’t try and push it though. I have done both, and find if I really take it easy, it seems to last longer. I still try to do stuff every day, but I have thrown my back out, pulled a muscle in my shoulder, etc. thinking I had the strength I used to have. So take it slowly. The goal should be to improve and then maintain that improvement with the IVIG on whatever schedule they put you on. The side effects of Prednisone can be quick, with increased appetite, weight gain, etc, but some of the other bad side effects can be very far in the future. Try to keep a journal of how you are doing, what is improving, declining, etc. It will be most helpful in the future looking back at treatments and what works and doesn’t work. Good luck to you and congratulations on a quick diagnosis. Take care, Gabrielle
AnonymousJuly 18, 2008 at 10:11 am
Welcome, Paul. As Gabrielle said, you’ve come to the right place. I think everyone will agree that you should definitely not push yourself. We are all speaking from experience and I have yet to read where anybody gained anything from pushing their limits. It takes time to figure out what works for you, each story is individual.
Listen to your body, and check in here often for support. Sometimes this forum is the best medicine you’ll find.
AnonymousJuly 18, 2008 at 11:51 am
I also agree with the above posts on taking it easy. I have always responded fairly quickly to the IVIG as it sounds that you have too. But taking it easy is still the best way to go.
As for the prednisone, I was on it for a full month,feeling better than I had for a year with no “side effects”. Then the 2nd month, they hit me hard. But I have an aunt who has been on prednisone for about 25 years and had a much slower on-set of side-effects. The journal idea is great that would help you to see what things are changeing. Some of them you might not notice right away otherwise.
I hope everything continues to go well for you!
AnonymousJuly 18, 2008 at 9:40 pm
Welcome Paul to this forum. There are so many here with suggestions, support, and total knowledge of their bodies. The journaling is so important to show to your doctor-how you are feeling tells him how your current treatment plan is working. The cidp does limit you and the Prednisone does increase your strength-figure out a slow safe plan that works for you. To come from almost to a wheel chair to your current level after one series of ivig is truly wonderful! Remember, what works for one doesn’t work for another, and that is ok-find what works for you and stick with it, until it doesn’t work anymore-then change it. Sounds simple, but my permanent side effects to Prednisone are sadly permanent-yet, in the beginning, they were helping. Your neuro sounds great. Again, welcome, and good luck. Emma
AnonymousJuly 18, 2008 at 11:08 pm
Hi ya Paul,
There are some great success stories out there so heres hoping your one of them also!
Is definately fortunate that your neuro was on the ball and that you are being treated appropriately, I have read in one of Dr Parrys books (he is a well regarded neuro on the med board of this foundation) where those who present fairly acutely (ie with sudden onset of symptoms) and are started treatment promptly (within 1 year of onset of first symptoms) they have a very good chance of responding very well to treatment.
I to am your age, was diagnoised immediately, and commenced the same treatment types as you – ivig, pred,azathiaprine etc,.Long story short have made excellent comeback, diagnosed may 07, got to quad status, but am now nearly full strength and back to running and being fully independant and able to run household, -work very part time and look after family etc. Am still on lots of treatment but have high hopes this can be reduced along the way.
re side effects, yes there is good and bad about everything, my main concerns are long term issues you can google and get a good long list but if you need it, you need it etc. Personally to date i have experienced hair loss, weight increase (sorting this now as able to run etc), insomnia, irritability, and acne. These are some of the short term issues, it is the long term side effects that are more concerning though – again a google search will reveal a lot or your neuro will no doubt fill you in. There are things you can do to reduce chances of long term effects ie calcium and or biphosphante supplements, good diet, exercise etc. You to are defiantely young enough to be doing all you can to ward of long term effects, check with your neuro and hopefully you wont need to be on them toooo long.
Azathiaprine has potential of increasing likelihood of cancer particular skin cancer so lots of slip, slap, slop, (Slip on hat, slap on clothes, and slop on sunscreen) but really really avoid the sun. Can make your wee eluminate also!. drink heaps (of h2o!!!!)to help with the excretion process.
Think thats about enough to bore you with for now, all the best and look forward to more ‘good news’ updates etc.
AnonymousJuly 19, 2008 at 2:14 pm
Thanks to all of you for your advice..
It is so hard to try and slow yourself down. After not being able to do much for three months to be able to walk to the end of the garden and start to climb the stairs is just brilliant but i will take your advice and take things slowly I wan’t this to work.
Hopefully I will visit the neuro again soon and discuss my treatment plan. At the beggining it was all a bit rushed I got the diagnosis and he was then away on holiday so it was more a matter of get in and get the treatment quick first then regroup and we will work out a plan.. I am still unsure what to expect though is it a matter of the IVIG will wear out soon and you work out a plan of how often you have it or do you just wait and see what happens now after the first treatment ??:confused:
Thanks again too you all
AnonymousJuly 19, 2008 at 8:00 pm
Paul-you will see on the posts that the ivig lasts about 42 days; some are able to go longer and some need more often. Keep track of how you feel, what is better, and what isn’t and see your neuro soon and discuss this and he will determine the dosage based on your weight and the frequency adjusts to how you are doing. I have started the ivig every two weeks in hopes that I will stabilize with two days of ivig in my system every two weeks, rather than monthly(no peaks and valleys and no down time).
AnonymousJuly 20, 2008 at 12:29 am
Welcome. I am glad you found this forum along with your quick diagnosis and responsive treatment. My best advice is to expect the unexpected. I don’t mean this in a negative way. I just mean to keep in your mind that everything changes. Having acceptance of the unknown is probably the biggest challenge of this condition and the more we become like trees in the storm, bending and swaying but staying rooted, the better we can cope. It’s hard for any one of us to tell you what to expect, but it certainly is helpful to hear other peoples experiences and get percpective and hope. I hope you continue to do well and post often. Your experience will help us too.
AnonymousJuly 20, 2008 at 8:05 am
It might take awhile for you to get a cycle set up with the IVIg but eventually you will realize when it wears off for you and you can adjust your schedule and/or dosage from there. It might take a little while for you to recognize what is just part of your normals ups and downs versus the IVIg wearing off, keeping a journal can help with this. And the length of time it lasts in me can be variable in the sense that if I over extend myself too much towards the end of my cycle I will go downhill faster and the IVIg doesn’t seem to last as long.
Just hang in there for the long haul – you will get there eventually!
AnonymousJuly 22, 2008 at 12:23 pm
Hi Paul, I am another one who was diagnosed quickly after onset of symptoms (onset October 20, 2007, diagnosis – December 4, 2007) – and began treatment about a week after diagnosis – 60 mg of prednisone, which did wonders and restored me to 50-60% within the first month. I was not quite to the wheelchair stage at my worst, but I went from being able to walk up steps in late October to not being able to walk up steps about a week or two later. I had my first loading dose of IVIG in January, got it monthly for 4 months, and now am getting it every 3 months. I also started taking Imuran (75 mg) in March and I continue to taper down the prednisone. I am at 6 mg daily now and my goal is to be under 5 mg. I have continued to see slow improvement these past few months and am functioning pretty much as I did before I got sick. I am not sure if all of the treatments are contributing to my progress – my neuro feels most patients do the best on a combination therapy. I think the goal is to continue to try to space the IVIG out further at some point. So far, I do not see any change (decline) in between IVIG treatments (even with them 3 months apart) so I am happy. I am a 37 yr old female and do not know if my age has anything to do with my recovery.
Anyway, I just wanted to post my experience so you know that there is hope for good recovery. Let us know how you progress.
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