prednisone

kmbhoya2000

Anyone else here on prednisone? I've been on it for 20 years, and have only gotten below 5 mg once, and that triggered a really bad flare...I saw a new Doctor this week, and he was adamant that I get off the prednisone, 1 mg per month. I am happy because I can't stand it, it causes me major sleep issues, etc, but I'm nervous about having issues again once i get low. He said it's just because i've been on it so long and that basically I have to tough it out and that it's going to be a long, difficult process...

rcramer7

Hello,
I HATE PREDNISONE!!! I have psoriatic arthritis and a few years ago a doctor gave me 10mg for 6 months. After a months I took it back and told him he could shove it up his

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I gained 40+lbs and felt like beating up little kittens.

I don't know why you take it but, getting alternative treatment can only be better. The only thing prednisone should be used for is strong but, short-term shocks to your body.

tabi26

I'm not currently on it, and I only use it shirt term when I am(6-8 weeks). But I hate it too! In that short time it rearranged all my fat to my tummy Also turned me into an insomniac crazy person lol. Hope you manage to get off!

kmbhoya2000

I have an autoimmune rheumatoid disease. What's happened in the past is when I get it lower, like less than 5 and when I taper, I get very stiff & sore, and then my sed rate starts to go up, and some other numbers in my bloodwork goes wacky...I really don't like the prednisone either, although, I know it does have its benefits when needed... I have asthma also, and it has saved me many times when I've been sick...BUT I would love to sleep again on my own, without having to have help!!

kmbhoya2000

When I was in high school, and was on much higher doses than now, I would lay down for bed, and a certain song would get stuck in my head and I would just sing it over and over. I would be so insanely exhausted from being sick & not sleeping, and I would just desperately wish to fall asleep, but never any luck!!!

ronadams52

I am sorry to hear that. Has exercise and your nutrition plan helped to reduce the need any?

kmbhoya2000

No, I've always been active ever since I was first diagnosed. I have tried various diets to see if certain foods were triggers, but have never found any to be...exercise definitely helps me, that's the best part of my day, usually right after exercise, then the stiffness and soreness returns...

Actually, I should say I have felt a bit better after lowering my sugar intake! It's more of an overall health better feeling, not necessarily less soreness...

techigirl78

I have asthma, my mom as multiple scelrosis, and my boyfriend has ulcerative collitis. All of us get prednisone, but not constant. I get every few years for 1-2 weeks. Even my mom isn't on it all the time and she is in a wheel chair.

I don't know much about your disease and I am not a doctor, but have you tried talking to another doctor? Do you like your current doctor? Prednisone short and long term has tons of side effects, so if you can manage to get off of it and only use occassionally, that is the choice I would make for myself.

kmbhoya2000

This doctor I spoke with this week who wants me to go down 1 mg at a time is a new guy. My other doctor I have been seeing for the last 20 years...They both are excellent, they both teach at the #1 & #2 hospitals in Rheumatology, they obviously both just disagree on treatment approaches...

RumOne

I have Lupus so I go on and off of pred. The most has been for 7 months. Taking it slow is the key. Letting your immune system start working again but not so much that it flares and goes for your joints.

carolemack

This doctor I spoke with this week who wants me to go down 1 mg at a time is a new guy. My other doctor I have been seeing for the last 20 years...They both are excellent, they both teach at the #1 & #2 hospitals in Rheumatology, they obviously both just disagree on treatment approaches...

I have Rheaumatoid Arthritis...was diagnosed at age 21 and am now 64. Treatment options have changed a lot over that time but the one thing I will not do is go on prednisone for more than 10 days to two weeks at a time...and then only when absolutely necessary. I also have COPD so when I start to get a cold or the flu my pulmonologist puts me on antibiotics and prednisone for 10 days with the prednisone being tapered off after the first seven days.

I also have a new Rheaumatologist and she has put me on gold injections once a week. I was on that therapy back in my 30's and it worked so well it put me in remission for over 40 years. I've had several flare ups lately so we are trying it again and hopefully it will be just as successful as last time.

You are absolutely right in not wanting to be on prednisone. I find that Rheaumatologists each have their own favourite therapies and are almost impossible to sway in a different direction. Your new doctor sounds like a keeper. I wish you all the best in whatever new treatment your new doctor suggests. :flowerforyou:

rcramer7

The only thing that has helped me has been Enbrel. I take 50mg once a week. It is a biological TNF. I know it is used to treat autoimmune rheumatoid disease. There are about 4-5 different drugs for this class(TNF). Thay aren't cheap $2000. month so, the insurance puts you through hell with pre-authorizations and mail-order pharmacy...and I also use the Enbrel co-pay assist card. It is free and my co-pay is $10.00. It may be worth looking into!? When I take it it's the only way I can cope.

springermad

They wanted to put me on it for my cluster headaches, but they can't because I am very hypertensive and taking this medication will make my hypertension worse. For what I have heard and for what I have seen I am pleased I am not on it.
A warning incasse you are not aware this can cause you to have high blood sugars even if you are not a diabetic x

kmbhoya2000

I have tried Enbrel, and it did not work for me, and we actually were wondering if it caused a bit of a flare...I am aware of all of the side effects of prednisone, I have been lucky that my blood pressure and my blood sugar have been fine. However, my bone density is not good, and I have terrible insomnia with it. And again, according to this new doctor, some of my pain, and general yucky feeling is because of the prednisone...

rcramer7

I have tried Enbrel, and it did not work for me, and we actually were wondering if it caused a bit of a flare...I am aware of all of the side effects of prednisone, I have been lucky that my blood pressure and my blood sugar have been fine. However, my bone density is not good, and I have terrible insomnia with it. And again, according to this new doctor, some of my pain, and general yucky feeling is because of the prednisone...

I'm sorry the Enbrel didn't work for you. Well, that is, unless you find an alternative that is better and cheaper! I know how you feel and I am sorry anyone has to endure any bad things in life. It's worse when you have no control over it. I hope you find the key.