New here – first setback/relapse
AnonymousOctober 3, 2006 at 5:08 pm
Hi. Thanks for having me and creating this group.
I’m a 29 year old male from New York. My health problems started at
25 after an undiagnosed case of lyme disease, which triggered the
CIDP. I was properly diagnosed about six months ago.
I have been receiving 2 grams per kg of IVIG over 3 days once a month for five
months now. My recovery had been tremendous until 2 weeks ago when
neuropathy started to set back in.
Over the past week orthostatic balance and fatigue have gotten much
worse. Fortunately I am not back to pre-IVIG state, but have had to
stop work again, after just starting again about a month ago.
Hopefully that did not trigger the setback.
I also had the flu about a month ago, during my last IVIG infusion. Anyhow I don’t know what contributed to my acquiring the setback.
Being this is my first relapse/setback I was looking for some advice.
My doctors (neuro and immunologist) think the setback will not last
long and I will continue to recover on the current treatment protocol.
Nonetheless I am quite dismayed by the setback after struggling to
even get the right diagnosis for over three and a half years.
Looking forward to your responses. Thanks. Nat Ziering
AnonymousOctober 3, 2006 at 5:45 pm
Welcome to your new family, where we feel what you feel. I am another New Yorker, I’m in the central part of Long Island. Being in New York, New York, you should be able to see excellent doctors. IVIG’s will not bring about a cure, you may know that, many times they do make you feel better and stronger, but another purpose is to just CONTROL progression of CIDP. You said you had the flu, did you get a flu shot??? Some of us believe the flu shot plays a part in triggering CIDP and some like me, will never get a flu shot again.
I was just wondering if you might have had the brand of IVIG changed, some of us found we do not react well to a change and need to know the brand of IVIG we do well on.
This is just FYI, sometimes our site will go down, it’s a good idea for a new member to “buddy-up” with a senior member and just exchange emails to keep on file.
AnonymousOctober 3, 2006 at 6:27 pm
[COLOR=”Purple”]Hi Nat and welcome to the group. I was wondering what type of work you do as stress and too much physical activity can certainly make symptoms worse. Also, did you get “the flu” after the IVIG was started? My second round over a year ago made me feel like I had the flu- aches, H/a, elevated temperature,etc. I don’t always get the same brand of IVIG and I can definitely tell the difference. Others will come on and share their experiences. Sorry you have CIDP, but glad you found us…………Vicki[/COLOR]
AnonymousOctober 3, 2006 at 6:37 pm
I Nat. I’m a mother to a 2 year old with CIDP, dx Nov/Dec 05. We looked for 1 year for a dx. and by the time we found it, he was so weak, he could not remove his head from my shoulder when I carried him.
He’s had GREAT improvement since then, on steriods and IVIG but in March/April his neck became very weak. The dr. and us do not know what else to do and don’t know why the neck is not getting better.
On this site, even someone that’s had the disease for awhile has about the same questions you and I do. Everyone is different and the disease is different for each person too.
AnonymousOctober 3, 2006 at 8:30 pm
You may just need a boost of IVIG. Maybe talk with your neuro about doubling up this month. Like doing 2 IVIG’s over 2 consecutive days. I think most people do this.
Maybe you could also talk to your neuro about getting a low dose of Prednisone instead of doing another IVIG. I’ve heard that works for alot of people as well.
Also are you sure that you got the flu? Sometimes my daughter will get flu like symptoms after an infusion. We’ve stopped them by making sure that she stays well hydrated before, during & after each infusion.
AnonymousOctober 3, 2006 at 9:01 pm
Hey Nat, welcome to the group.
It will be 3 years for me in November, several times I have had what seemed like relapses but turned out to be setbacks due to illness or just doing too much. You mentioned being sick recently, from my experience it is probably due to that. You never know when you might be having a true relapse so you should always play it safe, try resting as much as possible. Take care.
PS-Also wanted to mention, now that you have a proper diagnosis, learning your limits is key. I have had to learn that the hard way.
AnonymousOctober 3, 2006 at 9:11 pm
Thanks for your responses and warm welcome to the board.
I did have a flu and did attempt to go back to work full time (8am-6pm daily) just afterward. The two may have made me take a step back.
I had my infusion today (and again tommorrow), and it usually takes me about two weeks to respond. Then I’ll see my neuro. He thinks its just a temporary setback and I should continue to improve as I have so far on the IVIG.
He doesn’t like to use steroids if possible but I will ask him about it if it may help or give me a boost.
AnonymousOctober 3, 2006 at 10:39 pm
Welcome to the board. The IVIG Has worked wonderfully for me, till the past several months. I just can’t get the pick up from it. It could be a complication of the summers heat. hoping for improvement now that fall is here. My advice to you is to avoid the prednisone if possible. I am on it and can’t break loose of it. It can have some bad side affects. You might want to try going to work half days to start with, that may help. Best wishes for good treatment affects.
P S You will notice several ” Mom’s” The two previous ones have children with CIDP, However I am the Mom with it and K C came on 3 1/2 years ago looking for help and understanding.. This board has a wealth of info that shows up over the months and years.
You must be logged in to reply to this topic.