Hi, folks. I seem to be crashing here. I couldn't get off the couch without help last night, and I've been on the floor once already today, and it's only morning.

I've been on Imuran for eight months now. No improvement yet. I could go in for more infusions, but man oh man that is logistically difficult. I need people to drive me to the infusion center and pick me up, and people to watch my little boys while I'm gone. I'm also afraid of aseptic meningitis, and last time I had a headache for a month. And it will only make me strong for six weeks.

My insurance won't pay for home infusions. I'm grateful it covers IVIG at all--because I know very well there are people on this board who need it more than I do and can't get it.

Maybe it's time to think about Prednisone.

I'd appreciate suggestions.

Abby

Sorry you are feeling so bad. I just started on Immuran and wondered if you have had any side effects? I have started having achy legs.

Have your doctor challenge the insurance company. He/she can site the fact that you are immune-suppressed, and the cost factors can be outlined, as home IVIG is much less expensive that that at an infusion center. My doctors have always been happy to help with letters, phone calls, etc. Don't be afraid to ask.

Prednisone would be an inexpensive and relatively quick thing to try as well, but of course you know it comes with side effects and risks. I am one of the few who doesn't absolutely hate it. I've not had the massive wt gain but did have moon face, mood disturbance, insomnia, etc on high doses. I'm currently weaning off of it, for about the 3rd time and am currently on 7.5 mg eod. I've been on it the better part of 12 years. My bones remain good, no cataracts.

Be careful right now. Call your doctor first thing on Monday, and sooner if you fall again!

Good luck.

Iwasanurse, I haven't had any side effects from the Imuran, except a little loss of appetite for the first few weeks, but that went away. I hope you can figure out what's causing your leg aches--I don't know if that's a common side effect of Imuran.

Thank you, 4-eyes. It's good to hear a positive story about Prednisone. My general impression was that everyone who's on it is desperate to get off...

I am not exactly "falling," though I suppose that if I involuntarily end up on the floor, I could call it that. I just slowly lose strength in my legs, and down I go. It looks like I have just decided to sit on the floor. It's a very safe way to "fall," I guess.

About the infusions: I just remembered that I qualify for Medicaid (in my state, the parents of low- to middle-income children qualify). I have private insurance, but it's quite possible that Medicaid will pick up what the insurance doesn't cover. I'll look into that. I also just remembered that we have a house-guest coming for a couple of weeks--tonight! He can baby-sit for me. So, I am feeling more hopeful that I can work things out.

Thanks,

Abby

Abby I went off Imuran and am now on Cellcept and starting Steroids. I feel better than I have felt in a year YEEPEE!!! As for the leg pains, the Imuran gave me cramps in my feet and legs. Sounds like you need IVIG. I need them about every 2 months.

Tell you how good I feel. I worked in the yard for 2 full days. Cooked 3 Thanksgiving dinners and haven't had a nap in 5 days.

Hang in there it can get better.
Mike

Mike, that's terrific! I'm so glad you're finally feeling better. What do you credit for the improvement? It's too early for it to be the CellCept, right? So do you think it's the steroids?

Abby

Hi Abby,
I'm sorry to hear that you're feeling poorly. I second the suggestion made by 4-eyes to challenge your insurance company regarding home IVIG infusion. I know that it would take time to have your dr. write a letter, etc., but it could really benefit you in the long-term. I'm also glad to hear that you may have help, by way of a houseguest, to get you to your IVIG infusions. I recently had IVIG infusions and had the choice to do them at an infusion center or at home. I chose at home, as it was just too difficult to drive there with my double vision. The nurse who did my infusions said that their company is reimbursed the same amount by the insurance company regardless of whether the IVIG is given at home or at an infusion center.

I also had Prednisone about a year ago and am begging my neurologist to restart me on it. Though the IVIG has helped my muscle weakness in my legs and arms, it hasn't done a thing for my double vision. When I was on prednisone I felt the best I had felt in years!! And it was starting to help my double vision.

I was one of the fortunate ones and didn't gain weight while on the 60mg/day of pred, but I was a fanatic at watching my caloric intake and my sodium intake. I still had the moon face and experienced some insomnia for the first couple of weeks. On the positive side, I had more energy and was able to get more things done than I had in some time.

Do take care of yourself and get yourself to the emergency room if you run into major issues this weekend.

Cate

I take 20 mg of pred every other day, down from 120 mg eod.

My theropy also includes IGIV, mestinon, and cellcept.

For me, the scariest thing for me to quit is pred.

Tony

It's really a hard decision.

There are many things that can help you live better with this illness, and no doubt that you can gradually adjust to it.

But, all that being said, it is definitely much better to live without it.

The question is for what price. And only you can decide how debilitating it is for you and what potential price you are ready to pay.

Of course you may be lucky and have no ill effect from the steroids, but you do have to take into account all the possible options.

I can tell you that 3 years ago, I decided to take steroids, being fully aware of all the potential risks, because I knew that it was my only hope to have my normal life again.

I ended up not only not responding to it, but having severe deterioration in my condition, and severe osteoperosis as a result of the combination of high dose steroids and immobilization.

Yet, I don't regret my decision. I only regret putting my trust in someone who did not know how to recognize early signs of worsening, and stop this treatment on time, when it became obvious that in my specific case it is not only not beneficial but deleterious. (A rare but possible reaction).
Someone who decided that I am in "remission" when I was in a respiratory crisis, not despite, but because of the treatment he gave me.

Steroids are being widely used in every field of medicine. When used wisely they can save the lives and improve the lives of many patients.
The fact that my specific illness, responds to steroids in a rare and paradoxical way, did not cause me to stop using them when required for my own patients.

I do not treat patients with MG, but do not hesitate using steroids in patients with other autoimmune diseases. They work rapidly and many times can be tapered off very soon after there is a good response. Most patients, with some life style adjustments do not have serious short or long term side effects from them. As long as they are not used in high doses for prolonged periods of time, they are quite safe.

If you do decide to try treatment with steroids, there is an excellent book, written by a physician and her sister (who had to take steroids), which I highly recommend to anyone who is either treated or treats with steroids.

http://www.amazon.com/Coping-Prednis.../dp/0312375603