Silly bear,
Sounds like a good program. How much prednisone are you on and how does she want to decrease it--ask your wife. :-). There are a number of people onsite taking azathioprine, the brand name is Imuran. It is an immunosuppressant that has been around a while. It takes a while to work (other than prednisone, they all do). Meanwhile you need something like prednisone or IVIG to keep the immune system in check. IVIG stands for intravenous (IV) immunoglobulin. It is the stuff cells make to fight off intruders and comes from many donors. When you get this IV your own immune system (the one that is making all the antibodies causing you trouble) tends to shut down temporarily. Quite a few people onsite are taking or have taken IVIG. I am taking Mestinon and a low dose of prednisone and don't have personal experience with these treatments.

You may have not trouble with increasing the Mestinon, but if you do have cramping ask if you can take a smaller dose more often. You need to read about the side effects of your medications if you weren't listening and ask questions about them if you have any. Glad you had a pleasant day in the neuro's office, not all of us are that lucky. :-). b.

I am taking 20 mg prednizone a day right now so she wants me to keep that up for two weeks with the other then take it to 10 mg for a month then 5mg for 2 weeks then stop, see I was listening and my wife calles me silly Bear too!

That was too funny!

Just one little caution... I started on 20mg daily prednisone as well and attempted to go to 10mg daily a few weeks later and I flared big time two days later. I will only go down 5mg or less from now on. I know some people have been able to do 10mg drops... I am just not one of them (but I am still a rockstar!).

I was also nervous about going up to 120mg mestinon but it worked (and still works when I need that amount).

I do IVIg... would be happy to answer questions and share experiences and tricks with you!

Thank you Bear and B... you two got me laughing here!
Love, Becca

I am glad I could make you laugh Becca that made my day if I can do that, I was laughing while I wrote it got to have something to laugh about.. I do have some questions when I go for this IVIG should someone drive me I forgot to ask and you know the reason! She did tell me it would be a few hours. She did also metion looking at my CT scan again something about if there was any of the thymus still there that could be part of the problem.

Silly Bear,

Sounds like you have a great doctor. You just have to remember to listen to her. When she is talking you can just look at all of those wonderful charts on the wall.

I have been doing IVIG for several years with no problems. Some of our members have had some side effects. I will let them mention their experiences. My only side effects are an occasionally
headache.

You can have a home health care agency do the treatment at your home. I would recommend during the first several at the hospital until you know how you respond. I get my treatments at home and it is very convenient. The treatment takes several hours.

Be sure the nurse gives you the prep of Bendryl and Tyneol before your treatment. Those meds helps prevent or at least minimize the heads aches, which is the most common side effect.

Hope the new meds do the trick for you.

Bruce

Bear,

Whenever I went to the hospital for IVIG's, I was always able to drive myself. Not knowing how you respond, to be safe you probably should plan on someone driving you.

Bruce

Bruce on your first comment the only posters on the wall were of mens behinds I didn't understand that at all so I prefererd the doctor and of course my lovely wife was there too. She told me I would only have to do the IVIG the first whole week then maybe once a month after that with my insurance it would be better for me to do it there it is a office thing. I will remember the headaches thank you for that my wife will be driving me she is retired and she has a Aunt who she can visit while I do that or she can shop so I can see how I react to it then I may drive myself.

Bear, you made me laugh too! You are most definitely a silly Bear. Laughter is good medicine.

I have been having ivig treatments varying from once every 2 to 4 weeks for the last 21 months. Right now I am going in once every three weeks. The biggest piece of advice I can give you is HYDRATE. Drink two days before infusion and every day you have it. Continue to push fluids for a few days after. I drink around 60oz per day in preparation for ivig. Definitely take the benadryl (or not if benadryl causes you increased mg symptoms) and tylenol beforehand too.

I had my husband drive me the first day. I have driven myself since. It's not a bad idea to have someone go with you the first time.

I get infused slowly so mine take about 5 hours. The slow rate is supposed to help decrease the chance of headache. My rate never goes above 100. The first day I had ivig they infused it at 250. I had a loading dose that time so had two days ivig in a row. By the end of the second day I had a wicked case of aseptic meningitis. So, if you get a bad headache that comes with fever and stiff neck, extreme light and sound sensitivity, call your neuro. It's pretty easily treated but you don't want to wait long to get help.

My infusions are done at my neuro's office too. The nice part of that is it is covered like an office visit so I only pay a co-pay each time.

I hope it helps. I hope you can easily wean down your prednisone and the imuran and ivig work well for you.

Cathi

Bear, IVIG is made from the blood of 1000 vestal virgins.. Its an simple procedure. Be careful they don't push it to fast. Some of the nurses who are not well versed may try and get it in. I had flu like symptoms but not real bad. But the after effect were wonderful. I was like a new person after about 10 days. and it has lead me to almost a normal life.
Will

Oh so Wilcope we have another comedian liked the 1000 vestal virgins. I will listen to all of yours advice. They seemed very versed at this place more than who I was seeing. So I feel better not about the chances it will go into remission or she will cure it just that I will feel better and can get back to working in the yard and enjoy my job like I used to. And Cathi I will be sure to drink alot of water I do that anway.

You guys are so funny, every time I read your posts, I laugh. Need more laughter in my life. Please keep it up! Best of wishes with your health issues too!

wd

Men!!!!! Why is it even when you are not well you still think of one thing??!!! Lol. Where would we be without humour??!!

Glad you are doing well Bear. :-)

Gez

Well, Ive not heard of someone enoying their neuro appointment so much before!
I hope this treatment pland does the trick for you. As others mentioned, watch your symptoms as you taper down on the prednisone and just take it easy as your body adjust to things.

This sounds promising and little question of you not following up with her :)

Jeannie

Jennie, I didn't really enjoy it I was as nervous as I could be I wanted one question answered from this new neuro, was I generalizing I knew I was just wanted to hear someone of the profession to tell me. I will watch myself as all of you have told me hopefully it won't be to eventful. WD sure hope you have a nice day it is suppose to be hot here so I will do things early. Gez, we are men what else can I say. I do think it interesting to get on this sight and meet all of the people from different places and different walks of life and so much caring and advice this is a good place.

You are a silly bear and make me laugh out loud! Glad your appointment was so successful and you won't mind going back:)

Sounds like a good plan. IVIG is great. Make sure you take the other's advice about pre-medication, lots of water 2-3 days before, during and after, the a slow rate of infusion.

~sherry