Reply To: Droopy Face!

April 1, 2012 at 1:37 pm

Hello again- to try and answer your questions I started Imuran about 18 months after my initial dx of CIDP due to needing IVIG every 7 days it was very difficult to maintain that schedule and I was still getting relapses – the hope was the imuran would stop the relapses and allow me to extend ivig- after 1.5 years on Imuran I can say that I went a year without major relapse and am now getting IVIG every 10 days- I do have a lot of fluctuation of my symptoms with good days and bad days for sure- at some point I will probably try to go every 2 weeks with ivig- not sure when .
you mention feeling callous on your fingertips that can def be from raynauds – typically scleroderma causes swollen tight fingers that they call sausage fingers. I don’t know if I would call myself a success story as I am not cured but I am living with it and able to lead a fairly normal life – I have not given up hope of cure but for now I am not a candidate for stem cell as I am not weak enough – I am interested in sq ivig to get better control of symptoms – I might pursue trial being done in NYC at weill medical center – not sure if I am a candidate as my other autoimmune stuff may eliminate me –
When I first got diagnosed and started treatment the CIDP dominated my life physically, emotionally – now I still have to deal with it but it no longer dominates me- it is just a part of my life that I have to deal with and I refuse to let it win- you will find balance in time and I hope they find a regimen that works for you with the least impact on your life
I did get the biopsy for celiac ( done through an upper endoscopy of the stomach) which in my case was negative.
I feel for you with young kids- my kids are older now teen and pre teen – I don’t know how I would have handled toddlers! I cannot emphasize how important rest is- Do you have a disability policy through work? Many policies have partial disability that let you keep working and make up for lost income from reduced hours- not sure if doctors can give note you your employer to say you can’t work overnights? I fought it for awhile but eventually went on partial disability- now work about half my previous hours and I wish I had done it sooner- it really helps to be able to self care. Hang in there!