So I tapered up to 20mg on Oct 5, and since then, it seems like a never ending stream of infections have been invading my body since then. I've had two female infections, a UTI , a cold that took a week to sudside, and then made a re-appearance for another week, and now I seem to have an ear infection. I had been doing pretty well, functioning around the house with the baby..but lo and behold this morning, I cold hardly get myself up to get to my meds. My Nurologist wants me to keep tapering up...but she also said if I keep getting infections, I may be at my max or close to it. I have been trying to get healthy enough to up my dose again, since I get so weak for a few days after I increase. Anybody have similar experiences?

I would like to think I can go up a little more, but everytime I get a new infection, it makes me so weak it's like why even take the pred...Also she said the next step in my treatment would be IVIG...and I have absolutely no knowledge of it or how it works, but I did hear it makes some people sick ugg....Im so hating this ride right now...

Thanks in advance

Jessica

You are tapering up on Pred and having muscle pain? Did the two coincide?

Yes, some people - me included - can get infections very easily on immunosuppression. It caused me to have folliculitis, a staph infection of the skin, followed by an antibiotic and then clostridium difficile. And then the infections make MG worse. No, it's not good or nice.

Now I'm wondering about your muscle pain. You need to be fully evaluated for a larger infection. Is the pain like an ache, like you would get with a high fever? If it is, you may have an even worse infection. When I had C-Diff, my erythrocyte sedimentation rate (ESR) went up to 104 (normal is 20 and under for women). Your primary could run that on you and a CBC to make sure there isn't a worse infection. When I have an infection, my CBC remains normal but my ESR goes up.

When you've been sick in the past, have you ever noticed how a fever is worse at night? Yeah, this sounds really suspicious now. And anti-inflammatory drugs do help with symptoms of an infection such as a fever/aches.

Pred will masque infections too, not only bring them on. If you ever have any new symptoms, your doctors need to fully check them out. Please call your primary doctor first thing tomorrow morning. Sepsis is not out of the question!!! That kind of system-wide infection is dangerous, if you have an infection.

When my Dad had rheumatic fever (from strep throat that gets worse) in the Navy, all he had was an earache! There's another test called a strep titer which they can do. It's a blood test which shows if strep is running around in your body.

When you are immunosuppressed, you really have to be proactive about any infection. And you have to eat as well as you can to get the nutrients you need (antioxidants, etc.) to help fight off infections.

Are you on an antacid by any chance? The "cocktail" of Pred, an antacid and an antibiotic can lead to things like clostridium difficile. We need acid to fend off infections!!!

If you even suspect you may have "the flu," either the regular seasonal one or H1N1, then you need to go get some Tamiflu right away. Don't wait. The signs may be less noticeable while on Pred.

I hope you will get help and feel better. I know there are all these trade-offs with drugs to make MG worse. It's not fair! And I'm really sorry you are having such a rough time right now.

Annie

[COLOR="Navy"]Hi, and I'm so sorry you're having to deal with all the side effects of Prednisone. Prednisone can be a difficult drug to live with day to day.
I've included a couple good sites that may help you.
Coping with Prednisone* (*And Other Cortisone-Related Medicines) : It May Work Miracles But How Do You Handle the Side Effects?
by Eugenia Zukerman, Julie R. Ingelfinger This book helped me, it may be worth your reading.
Have they checked your sugar levels? Prednisone induced diabetes is a terrible problem that occurs. I'm one of those that have had an entire fleet of problems with Prednisone. But I still am on it daily, and that's after 5 1/2 years.
There is the possibility that the Prednisone itself is causing your weakness, might be worth checking into. (I'm referring to you saying every time they up it you get weaker.)
I'm so sorry you're going through all this. It can be rough, but you hang in there, it'll get better. We've all have gone through the first couple of years after diagnoses in a roller coaster. If there were a way to make it all go away for you, I would! Please know you're in my prayers.
Much Love
Lizzie

http://vasculitis.med.jhu.edu/treatm...rednisone.html
[/COhttp://ibdcrohns.about.com/cs/prednisone/a/prednisonedrug.htmLOR]

Jessica,
Prednisone is definitely a double edged sword. I have been on it about 5 weeks now and my Neuro stressed the importance of calling my PCP immediately if I felt like I was getting an infection. Have you been on any antibiotics for the infections? Maybe a good round of something will help you kick the recurring infections. I am going to knock on wood but so far I haven't picked up any infections but worry about it constantly!!! I wanted to share a couple of things that I do to try and keep myself resistant to everything out there. First of all for the female infections, do you eat yogurt? I try to eat a container every day or two. I also take several vitamins. If you aren't on any you might add them. I take a multi vitamin, B complex, Vit E and also OsCal + Vit D daily. My Dr said the calcium is extremely important when you are on pred. He has me take 1,500 mg daily. I also make sure to eat a banana everyday for the potassium and have found that the more I drink the better I feel. I am not a water drinker but do drink weak iced tea all day. I sure hope you can kick this soon. It is no fun being sick but with a little one and the holidays I'm sure you are having a hard time. I would definitely call your primary Dr. ASAP if you haven't already and see about getting in for a possible antibiotic and to discuss adding the vitamins. Good luck and hang in there!!!
Kendra

After four weeks still has not kicked in without mestinon at 120mg every tree hours
However I have had a different infection each week, all crisis.
wek 1 urunary tract infection
week 3 kidney infection
week 3 white spot throat infection
week 4 chest infection

Wow with that much Prednisone, I would expect (based on my very little experience with this disease and those drugs) that you would be having much better results. Have you tried taking a lower dose of Mestinon??? Whe I got to 20mg, I noticed I would get even weaker at about an hour into my Mestinon, so I tried taking a quarter of a pill off, a I felt soooo much better....all of those infections will bring you way down too...It's a long hard road trying to get stronger and get some kind of control over this illness...but I was sooo bad when I was diagnosed, and trust me YOU CAN FEEL BETTER....Please keep bugging your Nuero, research research research on your own (you know how you feel and your symptoms better than anyone) and keep your head up. I know how depressing it is...I once read that the inital diagnoses is like a grieving period....so treat it as that...let yourself grieve...but keep at it...

Jess

Hey Kendra,

I did see my PCP today, and he gave me some antibiotics for an ear infection and UTI...I do try the Yogurt thing...especially with the darn antibiotics.....I am going to call my Nuero tomorrow and let them know I'm still getting infections....Most of the ones I'm getting, don't seem to have an outside source (ear??? where did that come from I never get those) and those pesky female ones could be a stubborn UTI I didn't realize I had...I had a pretty good day today, and I feel like with a higher dose of Pred, I could feel even better, but I can't imagine I could keep uping the Pred if I keep getting sick And I eat a banana every morning with my meds...I actually started that because I started getting an ulcer from the Mest, and the other unpleasant side effect seems to be lessened with food. Plus it doesn't take too much chewing and it's not to hard to swallow...and from what I understand, it helps with the side effects of the Pred? I will ask my Nuero about the calcium...and I will take your advice and start me Vitamins again ...it's just like jeez, how can I juggle all these darn pills throughout the day...hehe the price we pay for beauty oh wait I mean health.... :-P

Hi, it's me again, I just wanted to tell you that if you get tired of the yogurt, or it's too high in sugar, there is the pill form, and you can get it at your local drug, or health store.
Love Lizzie