How to address PMR pain while decreasing prednisone

Thanks John. Yesterday I tried to get by one 5mg but I paid for it last night. So by 6am I could not take the pain and took 7mg. So, yeah, I will take 3 mg before bed and see if that helps with the night pain and stiffness. I actually began on that 6 day course of methyl given by my doctor before I even saw the Rheumie. And then the Rheumie gave a bottle of 5mg and said if necessary go to 10a day. But I just hate the idea of drugs.

Thanks Beryl. I sure could use the support as I am just overwhelmed by all this. I watched my father suffer for many years with RA. I guess there is also a hereditary component to this .Thing about it is my absolute worse pain is in both knees. Ortho says I have some arthritis and meniscus tears. I also have the upper arm pain, shoulder, neck, and thigh and buttock pain.

My name is Alan and I also have PMR since July 2017. I started on 20 mg and over the first year I tapered down slowly to 1 mg with few Issues. I had a relapse in August and now back to 3 and 2 by the end of the month. I followed the Mayo clinic Protocol. I have gotten great support from others on connect especially from John, the Volunteer Mentor and my rheumatologists

Thanks Alan. Did you have to go to the Mayo Clinic to do the protocol.? I need something like that. Roger

Hi @rogernj67, I think @alanbruce might be referring to working with your doctor to come up with a schedule for tapering off of prednisone. Each of us are different so you really need to find something that works for you. This might be helpful to get you started:

Prednisone withdrawal: Why taper down slowly?
-- https://www.mayoclinic.org/prednisone-withdrawal/expert-answers/faq-20057923

Here is another discussion on tapering down for prednisone:
-- https://connect.mayoclinic.org/discussion/prednisone/

Both occurrences of PMR I started on 20 mg of prednisone and each week I tried to go down by half the dosage and realized it was too big of a jump so decreased the amount. What helped me is tracking the daily dosage and the pain level. I also had the doctor prescribe different sizes of the prednisone tablets - 20, 10, 5, 2.5, and 1 mg. I would also break the tabs in half with a pill cutter if I was in between a dose where I had too much pain. I think it's important to work with your doctor and come up with a tapering schedule that works for you.

@rogernj67, can I ask what daily dosage you are currently on?

John

Well, when I saw the Rheum. he said try 5mg and if needed go ton10 per day. So what I am trying is 7 or 8 in the morning ( I just took 8 at 9am today) and 2 or 3 before bed. I left a message with him Friday to see if he thinks this is ok. I simply will not take these things like cough drops but want to get in remission as soon as I can. I feel like I have no life now and it is very depressing for someone who was a long distance walker. Thanks, john

I agree with you. The goal is to get off prednisone as soon as you can. The can being when the pain is manageable or gone. The first time I had to be on it for a little over three years. The second time it was about a year and a half.

When it went away the first time and you were good for six years....do you mean you felt the way you did before you even heard of this thing? Just curious about what to expect.

When it went away the first time I felt pretty good and about the same as before. For me there was such a sharp difference in the pain level when the PMR was active and when it went into remission. For the first week or so after I stopped taking the prednisone I had a little pain but nothing like before. I think that may be part of the withdrawal from prednisone. The second time it was a little easier for me because I knew what to expect and I pushed a little getting off of the prednisone. The first occurrence I was going back and forth each week the last six months between 1 mg and 1/2 mg until I could finally stop taking the prednisone with a little ache but not real pain.

Roger I can't get back to you right now as I have people staying but will,write soon Beryl