Wellness

[emmysmom]

On 6/9/2014 Bobbisue said:

Update: I finished the med yesterday. I'm done with it and will never allow the Dr. to put me on it again. I was diagnosed on Tuesday with fluid behind my retina. I don't know if the med caused it or not.

Thank you for your many posts. They were very helpful....

I am so glad you're done with it. I take care of a woman that has to take depo medrol and its destroying her health. She has addisons disease and has to take it. I am in hopes there is another solution. I was given a steroid when I was young for poison ivy. It made it worse and when I was given it again, I never took it. Heard too many negative things about it. I hope your eye will be ok!

[emmysmom]

On 5/31/2014 Ford1224 said:

Short term, it is a godsend and will not hurt you. Long term it is slowly killing me, and once that monkey is on your back, it doesn't get off.

I came down with RA in 2004, the same year I retired. After trials of several different medications and treatments, they came up with prednisone. I don't remember the initial dose I was on, but I have been on it long term (ten years) low dose (under 10 mgs) ever since then. I have not taken the biologics.

I had no idea what the prednisone was doing to me inside and out. Some docs were nonchalant about it, and some were not. However, I am now in the process of trying to taper it off AGAIN (have tried this several times and have never been successful). I am right now down to 6 mgs a day. The pain has increased (I am tapering 1 mg about every six weeks since last October), and until it becomes "Mack Truck" pain, I will persist. I have gotten as far down as 5 mg a day just once before, and I couldn't bear the pain and had to go back up to 10 mgs again to get back to normal (what's normal . . . I don't even know anymore).

I will tell you what it has not done to me. I lost 20 lbs. and have not gained it back. I never got and still do not have the "moon face." I never got "roid rage," or had any increase in energy, but quite the opposite . . . I have been extremely fatigued and exhausted for ten years.

Now I will tell you what it has done to me. It has totally destroyed my bones. I have the highest (which are actually the lowest) osteoporosis scores most doctors have seen. I had/have ten compressed fractures in my spine, two of which I had kyphoplasty surgery for last year and which made no difference in my pain level. The shape of my body has changed due to my decreased height, I never had a stomach before, but I now wake up with a flat stomach and by the time I go to bed, I look six months pregnant. I have such thin skin that as much as a tiny pinch on my arms will give me a purple bruise. Right now I have seven bruises on my left arm (don't even know how I got them) and three healing bruises on my right arm. I have ugly brown growths all over my body. I have diagnosed cataracts now and have to wear corrective lenses for the first time in my life. I will soon need cataract surgery.

Couple all of that with advanced RA anyway, my hands and fingers, my arms don't go over my head anymore, my shoulders and hips crack (don't know if that's the osteo or the RA), I can't walk more than just around my tiny apartment, and that's mostly with a back brace on. I have to be in a wheelchair pushed by my kids when I go out. I can't bend over, I can't clean or make my own bed, I can't do laundry, I can't stand at the stove to cook for more than five minutes, so I have to eat all processed frozen foods that I can microwave. I haven't been in a store of any kind in almost six years. I do my food shopping online and either my kids pick it up or I have to have it delivered. Oh, and my teeth, that I have spent thousands of dollars on over the decades, are rotting out of my mouth anyway. I am 76, but have the health level of someone 20 years older. Thankfully, I still have my mind.

My point in telling you all of this is . . . prednisone is a godsend for very short term use. Anything more than three months is going to put you on a path of disaster. It is like a drug addiction, since one cannot come off it without long term tapering, which is a very painful and arduous process, and most of the time it does not work.

I hope you can find another way to solve your COPD problems. And I hope I haven't scared you out of your wits. But I feel strongly about this medication and how it has ruined my life and aged me far beyond how I would have aged without it. So I decided to be honest with you.

Good luck in whatever you decide to do. (Your doctor will hate me.)

I am so sorry, this breaks my heart. I take care of a lovely woman that takes depo medrol for addison's and its causing her horrible side effects. She has been tapering it back!

[PhatCat]

On 6/5/2014 Ford1224 said:

On 6/5/2014 FATCATinCT said:

I became a raving lunatic!

You must have been on a high dose.

Oh yes, 40mg for a week then going down by 10mg per week. When I was in the week of 30mg I quit cold turkey, not knowing I could have gone into cardiac arrest. Never will I take this drug again.

[Gooday]

Which brings up a question for those of you who see rheumatologists. I worked for a cardiology group in the early 80's. A patient called asking for a referral to a rheumatologist. The cardiologist I worked for told me he felt they were ""charlatans"" and any decent family practitioner could prescribe the medications needed. He also had a similar though to pediatricians saying they don't know how to treat sick children other than for a cough or cold.

I guess he was old school.

Agree or disagree?

[LilacTree]

On 6/15/2014 Gooday said:

Which brings up a question for those of you who see rheumatologists. I worked for a cardiology group in the early 80's. A patient called asking for a referral to a rheumatologist. The cardiologist I worked for told me he felt they were "charlatans" and any decent family practitioner could prescribe the medications needed. He also had a similar though to pediatricians saying they don't know how to treat sick children other than for a cough or cold.

I guess he was old school.

Agree or disagree?

Agree wholeheartedly 100% about the rheumatologists. Don't know about pediatricians. Since I have grandchildren, I hope that is not true.

[LilacTree]

On 6/15/2014 FATCATinCT said:

On 6/5/2014 Ford1224 said:

On 6/5/2014 FATCATinCT said:

I became a raving lunatic!

You must have been on a high dose.

Oh yes, 40mg for a week then going down by 10mg per week. When I was in the week of 30mg I quit cold turkey, not knowing I could have gone into cardiac arrest. Never will I take this drug again.

The highest I was on was 15 mg and that was for a short time only. I then was on roller coaster dosages of 10 mg, always tapering downward, but then would have a flare and back up to 10 mg. Now I'm at 6 mg and not doing too bad. I want to get to 5 mg, which I've never been able to do. If I get there and can handle it . . . well, frankly I don't know where to go from there. Will have to have my adrenals thoroughly checked before I would dare try to go lower.

[BichonEmma]

I was on prednisone for a bit more than a year for RA. It was a mixed blessing that's for sure. I went from needing help getting dressed and having trouble walking. My kids said I looked like frankenstein It took a long time to find a drug that I wasn't allergic too, agreed with me and actually worked. In the end I did end up on enbrel not where I wanted to be though.

Edited to add, that until I started the enbrel the pred was almost a miracle drug for me. Without it, I wouldn't have been able to function. I went from crying in bed barely able to move to taking my children out for a walk, the beach, parks etc within a week. So it does have its uses

The prednisone wasn't too fun though. I didn't mind the side effects at first, it seemed worth the trade off. However they weren't fun. I went from a heavy 150lbs to 220lbs. I was constantly hungry, like another poster waking up in the middle of the night like I was starving hungry. I constantly had to pee. And I went from generally being to chilly (I sleep under a down comforter until its in the 80s inside) to constantly hot. Not a "its summer I need to get the in the ac hot" but a hot from the inside that no matter what I did I couldn't seem to shake. I was super irratable, with everything.

I was still better than not being on it, until my hair started falling out in big clumps. I ended up with a bald spot (which thankfully is filling in) That was the final straw. My hair had just started filling in from loosing most of it due to illness and I didn't want to go through it again. Plus at the point the pred wasn't doing enough for the ra.

I am still losing the weight, down to 185lbs! My eating habits are still terrible. Its really hard to shake the contact eating of mostly junk food for over a year. I do have an "emergency" dose pack if my RA is having a real bad flare up. I have to say that every time it is and I think about taking it, I tell myself "give it one more day" when I think about the side effects. Needles to say, I still have the same pack from a year ago

[addiegal]

FATCATinCT you never stop prednisone or any steroid cold turkey. You could and probably would go into an adrenal crisis, which indeed can be fatal. Your own adrenals are suppressed even in a week or two. The reason to taper off is to allow your own glands to recover their production of cortisol. I am glad you got through it and hopefully not need prednisone again. Emma, it takes time as you are seeing to lose the weight gained and the moon face and hump on the back of the neck seems even longer. And don't get discouraged it will go away in time. If you have been on steroids for a longer period and have suppressed your glands you need to be aware that if your body is understress, say a surgery, you may well need prednisone again to supplement your cortisol until you are not under stress. It is thought to take a year off steroids to fully recover and not need the stress dosing.

[kcladyz]

I love it. I take it when I have tonsillitis or pneumonia and it opens up my air ways.

[PhatCat]

On 6/15/2014 addiegal said: FATCATinCT you never stop prednisone or any steroid cold turkey. You could and probably would go into an adrenal crisis, which indeed can be fatal. Your own adrenals are suppressed even in a week or two. The reason to taper off is to allow your own glands to recover their production of cortisol. I am glad you got through it and hopefully not need prednisone again. Emma, it takes time as you are seeing to lose the weight gained and the moon face and hump on the back of the neck seems even longer. And don't get discouraged it will go away in time. If you have been on steroids for a longer period and have suppressed your glands you need to be aware that if your body is understress, say a surgery, you may well need prednisone again to supplement your cortisol until you are not under stress. It is thought to take a year off steroids to fully recover and not need the stress dosing.

Oh addiegal, I so wish I knew everything there was to know about this drug. I now have Addisons, my numbers aren't only in the toilet, the toilet flushed not long afterwards. I take bovine adrenals and have just started to get a bit of energy after many many months of taking.