Wondering about Willie

Thanks for wondering. I had the ivig an then I had a spine tap,an blood work. Now the bad news,He told me I had a high level of protein, an also tested positive for hepatitis c.He has sent me to a cancer specialist, who took more blood an 24 hr. sample of urine I am going to see a hematologist the 11th.The good news is I feel like the ivig has helped me some with cidp.I will keep you posted on my test.Must admit I am pretty bummed tho.
It took me awhile to figure out how to get back on the forum,are I would have posted sooner.I hope evryone the best. Willie

Hi willie,
What is the thought the docs have regarding the hematologist and oncologist? The elevated protein is typical with cidp, were there other elevations detected as well? I am thinking of you my fellow Illinoian!!!!
Dawn

I am kind of confused cancer dr. said he wanted to make sure that something had not concentrate in a specific area, he also said something about a liver biopsy , bone marrow was said also. But as far as know they wont know what to do until they get some more test results. I just walked out feeling a little numb.Who knows everthing might come back ok. I will keep you guys posted.I kind of feel like I in dream are nightmare, it just doesnt seem like this can be happening, but it is.But I know I M NOT THE FIRST.

Willie – How are you? How is your CIDP doing since your treatments? Are you still on the high doses of prednisone?

-Dee

Willie – How are you? How is your CIDP doing since your treatments? Are you still on the high doses of prednisone?

-Dee

A lot has happened ,I tested positive for hep c right after my 5 day loading of ivig,I got approved for medicaid yesterday my nero scheduled me for another round of ivig starting tomorrow will also be seeing another Dr. for the hep c, he is going to do a liver biopsy an some other test to determine what to treat me with he spoke of interferon an somthing else.I had a little improvement after my first ivig it didnt last long I am hoping for more after this dose.I have alot of weakness an numbness in my legs an feet. I am hoping for everyone to get better. Willie

Stay strong Willie! I am praying for you. On a positive not, you are lucky to have docs that stuck by you and are on top of things. That is 3/4 of the battle in my opinion. Thank God someone in the medicaid dept was human and you were approved! I am happy for you about that. You seem like a really nice caring guy, always including good wishes to others in your posts, I know that the kindness you exude will come back to you ten fold. Stay strong and good wishes are sent your way
Dawn

I am on my 5th day post my second round 5 day loading. I feel much better am hoping I can get on a maintenance program now, an maybe stop the myelin eating,so I can rebuild some stenghth.I am still taking 40 mg. prednisone .I would like to cut that back. I see my nero April10. I would like to go right back in for another dose of ivig. I should be starting the interferon for the hep c very soon also. Wish me luck.I am like Hillary IN IT TO WIN IT:) You all have a nice weekend.PS. MY son turned 21 fri. we are having a little surprise party for hime today,family an friends are a good thing. Willie

Hi Willie, glad to hear you are doing better, hope it continues for you. Hope the interferon helps you too. How are things going with the prednisone? My dr. has me tapering down very slowly. I am at 20 mg now, down from 60. Are you suffering any ill-effects from the pred?

I hope you guys have a great time at the birthday party!

GREAT NEWS WILLIE!!!! Have fun at the party! I hope the doc is aggressive with the ivig as a maintanence plan since you notice such a difference. Push for it. Maybe even ask if he would consider the loading doses monthly for a while.
Dawn Kevies mom

Deem… I got dropped down to 30 mg. starting today. I Go in for a liver biopsy April 17th. Then I will start the interferon. I think I will be getting ivig every 3 weeks,I am not sure if one are 2 days of dosing each time.
My nero said there is a chance the the hepc is causing the cidp.He said we will just have to wait an see . Hopefully I will be one of 50 to 60 % of people with hepc geno tybe 1a that responds well to the treatments,I will be taking interferon for 48 weeks along with another drug that is suppose to boost the interferon, so I will only have to have 1 injection a week.Looking forward to spring.:)

After getting two 5 day loadings in the past 3 mo.I start my maintenance tomorrow 2 days every three weeks for the next 6 mo. I should also start taking the interferon very soon I will be taking it once a week for 48 weeks.i hope something works ,I have been having my legs give out on me lately if i push them ,they just fold like a lawn chair ,an down I go If I lay there for a few I can go a little more weakness an lack of endurance I am getting kind of tired of it.:(

Hope others are having better results.Willie

Got me some toeoffs today,so far I think they are going to help. I had ivig today an will get another dose tomorrow(2 days every three weeks). After treatment tomorrow I go see my hep c Dr.and find out what he is going to do with me. (AFTER THE GAME THE KING AN THE PAWN GO BACK IN THE SAME BOX) WILLIE, Ps I am down to 20 mg. predisone. Good luck to all!