I have Autoimmune Hemolytic Anemia (AIHA), was diagnosed in Feb. ...

Read your post on AIHA and taking Prednisone. I have been diagnosed with CLL. About 10 days ago they also gave me a diagnosis of AIHA and started me on 100mg of Pred per day. I had been feeling absolutely horrible for months and especially bad during the weeks leading up to them putting me on Prednisone.

Right now I feel better than I have in 5 years, but the doctor tells me it is the "steroids" and we are a long way from getting this under control. I go back Monday to check blood results and to see if we can begin to reduce the dosage. I am concerned about all the side effects that people talk about but I find mine, thus far, to be far better than what I was going through just a few weeks ago. I have already gained 5 pounds, I find myself a little "edgy" at times and I only want to sleep about 4 hours a night. My Rat Terrior may need to talk to your Chihuahua. He keeps coming in my "office" with a look of "are we going back to bed anytime soon?" ha ha

They haven't started singing "Moon River" yet when I come into a room, but I know it won't be long if this high dosage keeps up! I had been suffering so much from joint and body pain due to my disease and two ruptured discs and NOW, NO PAIN AT ALL!

Right now I call this my "miracle" drug. However, it sounds, from all I read, that I better enjoy the good days because there may be some rough ones ahead of me!

HI, I too was diagnosed with AIHA, but only about a month and a half ago and not with a histery as long as yours, but I can only emagine what you felt like as I too had some horrable blood issues and felt just terrable. I was started on 100mg of preds and have been tappering down (still having 4 weeks left before done). The side effects are just terrable. I had no appitite until this weekend loosing 24lbs, but starting just the other day I can eat anything is site and more. The nausea is gone, but the stomach pains/bloating/cramping is just as bad. My face is as big a moon, and i am a heavy woman to begin with. I HURT so terrable bad, back, hips, knees, ankles, feels like they are just sticks and I am try to carry myself on them, so weak. I don't know where to put my legs at time from the pain! My mind feels like it is floating, it is so hard to tell or explain what my body/mind "feel" like. Words do not describe it really. This so SUCKS and there is nothing anyone can do untill the meds are done. And even then it seems (from what I read) it is not going to get better any time soon!! I can't concetrate, I think every drop of water that ever came out of the sky falls from my body, i am constantly wet from sweat. I was thinking at first, "this is all in your head girl, things can not be that bad" until I read the posting on this site. It really is not in my head and these things are real, it is so scarry not knowing what is going to happen with my body next. Seems each day had a new or different effect from this horrible medication. Thank you so much for sharing and for listening. Sometimes just venting to someone who has can understand is the best medicine. Good luck with your AIHA
Brandi

Brandi
Saw your post and just wanted to encourage you to hang in there. I was told today that my RBC has gone back up so they are dropping me down to 60mg a day of the Predisone so I am glad.

I have had an appetite and absolutely don't need to gain the weight, but alas I am. Fortunately, the preds have actually helped me with the pain. I was hurting so bad BEFORE taking the predisone that I could hardly get out of bed some days. I had gotten to the point where I was taking so many aspirin, tylenol, etc just to make it through the day. Then they wanted me to stop due to a possible biopsy they thought they might have to do and I thought I wouldn't make it the 4 days I was off everything.

My doctor did prescribe me some vicodin for the pain, but since getting on the prednisone, I have not had to take any. If you get pain pills, just be sure to use them wisely. If your pain is that bad, ask for some help. It is foolish to suffer like that. I am concerned that as I drop my dosage, the pain is going to return and I am certainly not looking forward to that!

I totally understand the sweating. My gosh is it ever bad! But, they say that thinking positive through any illness is key, so I think of the sweat as all the bad cells leaving my body!

One other thing that I did start, as soon as I heard I had CLL and then AHIA is to start RELIGIOUSLY taking vitamins and drinking a protein drink each day. I have no way of knowing if it helps, but I figured it cannot hurt.

On the days I am really exhausted and feel like doing nothing, I am kind to myself, find a good book and relax. I know I cannot push myself every day so I just give in and enjoy the downtime as best I can.

We will get through this but in the meantime, we just need to provide moral support as needed. By the way, I also found a good blog that you might be interested. It is a man with both CLL and AHIA, as I have. He has been dealing with the issue for some time and has some good links on his site. You didn't mention if you also have CLL, but if you do, you might go to: http://clldiary.blogspot.com/2007/09/some-good-news-on-aiha-front.html

Good luck and God Bless!
Joyce

I have 3 types of arthritis and was taking Humira to control the flares until I had an emergency surgery in January so I had to go off it. Around March I had a terrible flare and my doc put me on pred 60 mgs. I have been online trying to search the side effects of pred because I began having terrible signs that something was wrong. I have exactly the same lumps you had (did they go away?) they're on both sides of my neck, on the throat, on my chest, and they're huge, I gained 35 lbs and nothing I do can get any weight off, moon face - If I hadn't read your blog I'd still be searching for these side effects. Thank you, thank you, thank you. I also developed high blood pressure and am now on medicine for that. Weaning off is so painful and I have exactly the same muscle spasms in my legs which I can't even describe the pain from that. I had spasms in my calves and feet for 2 days straight - now they're just 4 or 5 times a day. I'm down to 10 mgs and expect to be completely off within the next 2 weeks. I've been on pred before and it was the worst withdrawal that I promised I would never never go back on it. But since that surgery and the bad flare that followed, I gave in. I will never do that again. Quite frankly, I believe the drug should be taken off the market. Yes, it does make you feel great for 2 weeks or so but as time goes on, it's just not worth it. I feel so relieved to know that someone else has had the same experience as I've had. There has to be some other medication that could take the place of pred without all these terrible side effects. I just want it out of my system as soon as possible. Anyway, thanks again for being so specific in your blog. Good luck to you.