Date: Wed, 24 Sep 2014 22:10:48 +0000 > From: Ethel > To: dancermom > > I am
not progressing well and my doctor has suggested cell cept or plasma exchange,
. . I am 83 My daughter died just recently and I have no one to be my
caretaker. So now it is up to me to find a treatment that is going to be
effective and overcome my immune system. I am also trying to get home care I
would like to hear from those who have used cell cept or plasma exchange and the
results that they experienced. The big question is "What results have others
experienced?"
> I am 82 with COPD, congestive heart problems, gerd, and (the normal old age
conditions like hearing), I have been exposed to HIV contaminated blood,
hepatitis B and C many time because my son were hemophiliacs who received blood
products in the 80's. I was diagnosed after having an esophageal infection. I
spent about 20 days in different hospitals and then 3 weeks in rehab hospital
and many weeks in bed at home. I lost 40 pounds and lost control of my muscles.
Blood test, spinal tap, electrical impulses were recorded, cancer was ruled out.
Leaving CiDP. I received 5 days of IVIG and then continued with treatment every
3 weeks. That was not quite effective, so switched to every 2 weeks. same
results, switched to every week, This has been the treatment since 2006. With a
couple of trying to jump start my immune system in between. The jump starts
seemed to be effective for a while but soon I was back with the neuropathy
advancing slowly up my legs. My Doc has t
old me that I am receiving the largest dose that I can have 40mg every week.
I also receive methylpredisone 40 mg intraveniously, and Tylenol.
> Over the years I have exercised to try to keep my muscles moving and limit the
weakness that comes with cidp. I am a firm believer in eating properly.
> Now back to why I am on this site. I need help in finding the answers to how
many have used cellcept or plasma exchange, How many had good results and how
many had bad results. I don't believe in making a decision until all the facts
are in. I guess you can say that I am doing a survey but only so that I can make
a good decision for my health. once I see these results, then I will have a
major problem in finding financing for the treatment I choose if I choose one of
these. SO
> I FOUGHT FOR MY SONS AND THEIR FRIENDS WHEN THEY NEEDED CLEAN BLOOD PRODUCTS
IN THE 80's and 90's. NOW I AM FIGHTING FOR MYSELF.;
> I WOULD APPRECIATE ALL THE HELP I CAN GET. I SINCERELY THANK YOU FOR THIS
OPPORTUNITY!
Good luck in your fight.The information you seek is not within my journey but we can help ask the world.Facebook and Twitter are good sources of information.You have my support.
Peter.
I really needed to hear that this morning. Thank you for finding a way into my life and helping it be better. MuchLoVE.
You are a fighter! Good luck to you. I tried both IVIG (only temporary relief at best) and plasma exchange-which was no help and I ended up getting hepatitis because of it. Luckily, the hep went away after the treatments ended. I believe that what really helped me was the regime of IVIG (5 times a month), 80 mg prednisone and cellcept. First I gradually weaned off the IVIG, took about a year, then the cellcept and finally the prednisone.
I also believe that what the biggest help was finding a neurologist who was an expert in CIDP.
Michael Williams said:
You are a fighter! Good luck to you. I tried both IVIG (only temporary relief at best) and plasma exchange-which was no help and I ended up getting hepatitis because of it. Luckily, the hep went away after the treatments ended. I believe that what really helped me was the regime of IVIG (5 times a month), 80 mg prednisone and cellcept. First I gradually weaned off the IVIG, took about a year, then the cellcept and finally the prednisone.
I also believe that what the biggest help was finding a neurologist who was an expert in CIDP.
Hi Michael,
How are you doing now with the CIDP?
I am 64 and have CIDP. I take two days of IVIG therapy every 5 weeks. The IVIG helped me get back to an almost normal life. I am sorry to hear your story and will be in prayer for your recovery with the best treatment plan.
OBTW, I am having IVIG therapy as I write this note.
Blessings,
Steve
I am good. I walk, ride my bike, cook, take care of the house, etc. I feel great (most of the time-nights are hard though). I went for a 9 mile bike ride this morning. I started going to school in August, which is really exhausting. Excpert for Metformin (for my diabetes), I don't take any medication.
How have you been doing?
Ann said:
Hi Michael,
How are you doing now with the CIDP?
I get 240 grams of IgG; two, 120 gram infusions every 14 days. IgG is a benign substance for most people. Our immune complex consists of between 70-75% immuoglobin G, therefore it has to be benign.
I don't think there is a maximum and I have read about people getting up to 300 grams each month (and maybe more).
Gook luck. I recommend a reclining stationary bike.
Ethel: I had 3 days of plasma exchange when I was first diagnosed but did not receive the results the doctor expected. She said she usually got good cleaner results with it but not for me. She has switched me to 400mg IVIG every 8 weeks and so far it is working.
Praying that you are able to find a treatment that helps and you are able to get home health care to assist. In some states there are programs for assistance with basic housekeeping, grocery shopping etc for certain income people. I was able to get this for my disabled mother.
Ethyl,
First of all, I'm sorry for the loss of your daughter. I hope you are able to get someone to replace the help she gave you.
I am somewhat of a success story for plasma exchange, cellcept and prednisone. Exactly two years ago, after several heavy doses of IVIG without results, and after going up to Mayo Clinic for a second opinion, I received seven plasma exchanges over two weeks, and 1000 mg of prednisone, and 2000 mg of cellcept per day. After the initial iv dosing of prednisone, they brought that down to a much lowere level. Over the past two years, we've tried to wean way down on it, getting as low as 5 mg, but right now I take 20 mg/day. Still taking 2000 mg of cellcept/day. For me,at least, prednisone is very effective. The cellcept, also an immune suppressor, allows me to get the same effect with less prednisone. But prednisone is the main weapon.
Those three treatments brought me back from total paralysis and extreme muscle and weight loss.
I will be seeing my neurologist Oct 7 and will be discussing having another series of plasma exchanges. I think I could benefit from it.
None of these treatments are perfect. The prednisone carries some risks. Because of it's tendency to rob calcium from the bones, your doctor may want you to have a bone density scan. A female at your age has to guard against that even without steroids. I have to take Fosamax once a week to help my bones retain calcium.
I hope you pursue getting some home based care through medicare. There is help available.
I'm very impressed with your atitude and determination to fight this and enjoy life. You are your own best advocate and you'll get better results if you push your doctors.
I wish you the best of luck! Remember that for many of us, the toughest time is before we get diagnosed and then before they figure out how to fight it. Once you and your doctors get effective treatments going, it will get easier.
Blessings, Jeff
Oops. Sorry I mis-spelled your name, Ethel
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