Meds and energy level

Pat,

  I'm sorry your having such a rough time....((Hugs)). I think calling your doctor is a good idea. She needs to know how bad your feeling physically and emotionally. I hope things turn around for you soon. Hang in there and keep us updated. You are in my thoughts and prayers.

                                                               Babs

Pat, I'm really really sorry this happened to you, especially when you were doing so well on the Cellcept and you were having some really good days. I really do think it's especially hard to start feeling bad after having a taste of what it's like to feel good again and getting your hopes up that it might last a while. A call to your rheumy would probably be a good idea too, although I know you don't want to increase the prednisone. Maybe your rheumy would have some other options for you though. I think you have every right to feel the way you do. I know you usually try very hard to stay positive, but we're all allowed some sadness and anger when this disease turns everything upside down. Maybe a vent and a cry will do you some good. I know if I hold it in too long, it just contributes even more to feelings of depression. I pray that either the neuro or your rheumy can help you and give you some options as far as meds go. Feel free to vent anytime you need to - we're here for you through all of this. You are so good at offering support to others here, now it's your turn to get some support from us. Hang in there and take care. (((((Hugs)))))

Hi Patty--
Glad you are feeling better and sorry about the gi thing. I hate those. The reason I asked about Addisons disease is that I go to a thyroid site and since you are on synthroid and have had thyroid issues, alot of people with AI thyroid or hashis have adrenal gland insufficiency, which can turn into Addisons disease--where your adrenal glands don't work right. I think synthroid might be partially to blame, or maybe it is genetic, I don't know. Addisons wreaks havoc on your kidneys and I spoke with a woman whos mother died from it and she mentioned that she has it too and is not skinny doesn't have weight loss, that most docs are ill informed about that. It is a very very slowly progressing disease and they don't usually diagnose people until it is very late in the disease because it progresses so slow, though you may have been complaining for some time. Tests for ACTH and cortisol are the first tests then there are more. I was told that they did not want to put me on pred regularly because it can cause an addisonian crisis, adrenal failure. I can't imagine being on prednisone alot is really good for the adrenals, it's just a thought because I always thought people with Addisons had to be really thin and stuff and that's not the case at all, especially if you have other endocrine problems like hypothyroidism or are on other steroids like prednisone. This woman felt very strongly that people with hashis and other problems be tested once in a while to make sure that they aren't developing it. Addisons is also a progression of some types of polyglandular dysfunction. The thing is they can prevent the damage and spare your adrenals by giving you cortisone and I think they might give pred with it, not sure. Since your kidneys are bothering you it might be something to rule out. I know I'm really struggling to get tested because I have the hyperpigmentation and low ACTH and cortisol. Well, I'm glad you are doing better.

Pat,

  I hope you feel better soon. Just wanted to let you know your in my thoughts and prayers.....(((Hugs))).

                                                      Love and hugs, Babs

Thanks Babs and Carol,

I feel better today. Go figure. I don't know why, but am so glad that I do. And I just stopped on my way home from the yarn store at a vegetable stand and bought the best fresh homegrown peaches, tomatoes and cucumbers, I came home and ate a peach and a tomato. If that won't make you feel good, what will!

I appreciate your sweet messages.

Pat

Thanks. It was great Hippi. I made cucumber onion tomato salad and what a reprieve from this heat! It was so good. My granddaughters ate peaches until I thought they'd be sick.

Funny how things can go up and down so fast! The next time I get down remind me how short lived it was.

Sleep tight.

Pat

Karen,

I can imagine how depressed you are if you're going to have to go on high doses of prednisone, and since you have had to do so in the past you are well aware of the pros and cons of the high doses. I've been on prednisone for about three years or so, but it wasn't until last year that my former rheumy put me on 60mg a day and kept me there for a couple of months. The side effects were horrible, as you know. My new rheumy knew that I couldn't tolerate methotrexate and that I was desperate to taper down from the higher doses of prednisone, but my labs still didn't look good, so she suggested CellCept. I had enough faith in her and felt so bad that I didn't investigate the drug, so I didn't know how new it was or what the side effects might be. As it turned out, it made me feel much better fairly quickly. As I mentioned in my original post, my brain fog decreased, my energy level improved immensely, and my joint pain improved. I was devastated when I had to decrease it to 1000 mgs a day.

Yes, it is very expensive - over $100 a month, but my insurance covers most of that. I have not asked my rheumy how long I should expect to take it, but I do know that unless it causes too much damage to my kidneys, I'll stay on it as long as it continues to make me feel better. I haven't noticed any side-effects whatsoever from it.

Your questions are some I should ask my doctor when I see her next week. I've been sick for over three years and was so anxious to try anything that would make me feel better that I went on blind faith.

To have hemolytic anemia and ulcerative colitis acting up at the same time must make you as anxious as I was to find something that helps. If you do try it, I hope you have as much success with it as I have.

Good luck.

Pat