Stopped taking Pred after three years but I'm stiff

Apart from the hip pain I found the withdrawals very similar to the initial PMR symptoms and went on for far longer than the withdrawals from reducing. I don't think they were any milder than at the beginning. I almost succumbed and took Pred again as I thought it was a flare. I'm glad I stuck it out or I would have been back on and still trying to get off. I can only state how it was for me as we are all so different.

Sorry, meant to address my comment to Angela

Thank you for your advice, Peggy.

I am going to post my taper schedule in case it helps someone see the problem.

The only time I have felt good along this road was when I was at 60 mg for one week (initiated 6/29) in spite of the side effects. On 7/6 I was tapered to 40 mg and then tapered to 30 mg on 7/20. That week on 30 mg I had temporal headaches and so called into the rheum, who was out of town. His associate recommended I return to 40 mg until I saw him again, and I did as instructed. On 8/9 dosage dropped to 30 mg, and on 8/16 dropped to 20 mg. I am to remain at 20 mg until I see him again on 9/15 and at that time a slower, but steady, taper will commence.

He is very concerned about the long-term consequences of prednisone treatment, as am I, but I am more concerned about getting a hold of this mess.

I am in misery, I cannot function. I can barely walk. I am presently in more pain than I was when I was diagnosed. I never dreamed this road would be this horrid.

I will be having the doctor's notes sent in to MA General with a view towards switching to a doctor in their Center of Excellence. I have sent a message to my present rheum and I'm sure he is not going to be pleased with me being oh so smart, but I'm not here to be popular. I'm here to heal.

I remembered that you have so much more than we ordinary PMR's have/had to contend with. The pain in your wrists and hands mean you are not able to follow your hobbies which must be soul destroying because you already have limitations. Although you have limitations are you perhaps doing too much ? I know that if I overdid it I suffered and eventually realised I had to pace myself by doing a little at a time and having a break. I would also agree that you may have reduced too quickly. It would certainly be prudent to find a more sympathetic rheumy. Is someone able to recommend one? Perhaps you could see the Neurologist who covers your MS care and discuss with him. I hope you have some easing soon.

HI Silver and thank you for your thoughts. I can't imagine doing less than I am presently doing but will pay attention to this. I have been leaving the house only for medical appointments, with my husband driving (I stopped driving 3 years ago). At home I handle my activities of daily living and listen to podcasts and knit in fits and starts. My husband does all of the cooking, and I do the cleanup. Perhaps when this is added up over the course of a day, it is too much. i have been doing the vacuuming twice each week and am always interacting with my 3 dogs and 2 cats

This morning I got up barely able to walk and so of course am further discouraged. Having finished my breakfast I will now sit still for a good while before tackling the difficult task of a shower and getting dressed.

Yes i will be looking for a new rheum and plan to go to Massachusetts General Hospital for care, they have a team dedicated to PMR AND GCA. FIRST i must get my present doctor's notes sent to them and then they will schedule me. Until then I will have to stick with what I have got. However, Peggy has been kind enough to share with me a scholarly article written to guide GP's treating GCA and PMR and I will talk to my GP about that possibility

peace

I found vacuuming too painful, Angela57490 and bought one of the rechargeable stick vacuums as it was so much lighter. I am aware of others with PMR who also bought these lightweight cleaners because of the pain they were suffering. None of us have/had anything other than PMR. I think it may be worth considering how much pain the vacuuming may be causing. It is heavy housework. I hope you can work out what is contributing to your pain.

Huh, I never thought of this! I use a Dyson ball upright, which is light but not super light. And it has strong suction so is a bit of a workout to push. With the 3 dogs and 2 cats you can imagine this is the most important chore on our main floor! I am lucky to have one floor living and all wooden floors except for the great room, so use a dust mop on the rooms without are carpets.

I can see how pushing that Dyson would likely be too much work for my hips, thighs, knees and back. Another thing to consider! Ugh.

You are not alone in experiencing this problem. It's a stick Dyson that I bought but there are many others on the market now and there are ones suitable for pet hair. It sounds like that may be what is giving you quite a bit of pain. I certainly found that it caused me a lot of pain. Sometimes there are solutions to some of the pain.

My orthopaedic specialist told me years ago that vacuuming should be banned for anyone with back problems. I can't use my ball Dyson for more than 5 minutes at a time without suffering.

That is also true for long handled clippers for the garden I have discovered!