I’m Not Responding to Prednisone and I Need Advice

There are cases of glucocorticoid-resistant polymyalgia rheumatica. I was probably one of those cases. When my rheumatologist started me on 20 mg of prednisone, she added that I needed to find a dose that worked. When 20 mg didn't work, I naturally increased my dose to 50 mg. When I reported back that 50 mg worked my rheumatologist rightfully said 50 mg was too much prednisone for PMR.

By definition PMR "should respond" to lower doses of prednisone. The usual starting dose is somewhere in the range of 12.5 to 25 mg of prednisone. There are wide variations in the treatment of polymyalgia rheumatica (PMR) with respect to prednisone dosages, tapering strategies, use of disease modifying anti-rheumatic drugs (DMARDs) and duration of treatment.

The bottom line is --- nobody knows how to treat PMR except to take prednisone.

On my second day of 50 mg - last night I could actually sleep - about 4 hours but that’s better than the 2 hours a night I was used to. I woke up a little sore in my shoulders - my legs were good. Took my 2nd dose this morning at 7:45 am - my soreness grew but levelled off - as I know prednisone take 3 or more hours to kick in for me.

Has anyone tried infusions for PMR? I know they are expensive and not all insurance covers them. But what was your experience? Did they help?

Yes, I believe I also have a severe case. Good luck to you. BTW, my doctor wants me to take most of my dose in the morning, because Prednisone can increase energy levels. You may have trouble sleeping. I take 30 mg in the morning and 10 mg in the evening.

I've been taking a 40 mg dose for a week now, and I feel a lot better. Earlier today I took my daughter to a burger place. The seats were low and when I tried to stand I fell on the floor. Talk about embarrassing. But by using all my strength and the table as support I was able to lift myself to a standing position. I don't think I could have done that a week ago. I'm going to consider that as an achievement.

Does anyone know how to obtain Prednisone? My doctor doesn't want to prescribe the quantity I need, and I don't want to run out.

Not sure I would trust getting prednisone from anyplace other than a pharmacy which requires a prescription. Usually you can get a 90 day supply of whatever daily dosage you are taking. What reasons did your doctor give you?

Your doctor is trying to protect you from the inherent risks of high dose and long term prednisone use.

One of the side effects of prednisone is called euphoria. It is the feeling of euphoria and reduced anxiety that prompts people to use too much of this dangerous drug.

Another definition of euphoria is a "false sense of well being." If you have PMR, you are not well no matter what prednisone is telling you.

People should use an abundance of caution when using prednisone. Try not to take more than your doctor prescribes. If you do take more than prescribed, as I did ... make sure your doctor is aware of what you are doing. Someone will need to evaluate you because you won't be able to trust what your body is telling you. In this case ... don't listen to your body.

One of my very first experiences with high dose prednisone was when I thought my eye was a "lost cause." I was certain I would be blind in one eye. Then I proceeded to tell my doctor that "I didn't care if I ended up being blind." My ophthalmologist said I was feeling "too good" and wanted me to reduce my prednisone dose immediately.

You need to learn how much prednisone you can tolerate. You won't know what dose that is when you first start to take it. I needed to learn my limits in spite of what prednisone was telling me.

This all stems from what cortisol does to the body. Read about the "fight-or-flight" response. It is a cascade of things that happen when there is a true emergency. Prednisone stimulates this fight-or-flight response but PMR is not a true emergency. Granted PMR is painful and that pain relief that prednisone provides gives you that false sense of well being.

The fight-or-flight response is not sustainable in the long term.

My doctor refuses to prescribe more than 20 mg, but he's not a specialist. I've increased my dosage based on advice I've received here. I have found a Rheumatologist who can see me next month, and I hope to get a prescription then so I don't run out.

Thanks for the advice, but I don't think this applies to me. I just want to take as much Prednisone as I need and then to taper as quickly as possible.

Does anyone have advice on tapering? I know it can take a long time. I'm currently taking 60 mg Prednisone per day, and I'm hoping that will be enough. My symptoms are much better, but they may not be totally gone.

I'm going to see my non-specialist doctor next week and plan to ask him to check my Sedimentation Rate. Unless I receive other information I plan to begin tapering if my Sed Rate gets below 20. It was 87 on 9/20. I'll be seeing a Rheumatologist in about a month. Is that a reasonable plan?