1. < Polymyalgia Rheumatica (PMR)
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Prednisone

Posted by inga71 @inga71, Mar 18 1:34pm

Hi. I think I got PMR after having an infection when I got the first COVID vaccine in 2020. I gradually got severe joint pain and very bad morning stiffness- that lasted at least until 16.00.. I could barely walk and I was used to exercise 5-6 days a week. My then GP prescribed Prednisolon 20 mg and after 2 hours the pain was much better. As I’m a registered nurse, that for me confirmed the condition. I have since tried to slowly reduce the dosage, I’ve been down to 5 mg and then have terrible flair ups and have to start over again. Lately I’ve been accused of being a prednisone addict by doctors and also a rheumatologist. That’s really makes me sad and I question their knowledge about this disease. But when I have the horrible pain I don’t know how to manage the pain besides use prednisone and the pain makes me so desperate that I get suicidal. I function best at 15 mg and can then have an okay life quality. I’m aware of the prednisone different side effects. I have read about different tapering methods and think at least I need to decrease every 3 months, but my current doctors will probably not accept that. What to do?? Inga

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jabrown0407 | @jabrown0407 | Mar 23 5:35pm
In reply to @dougrout "@jabrown0407 That is a great recommendation to get a second opinion. I was diagnosed with PMR..." + (show)
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@jabrown0407 That is a great recommendation to get a second opinion. I was diagnosed with PMR in October 2025 and placed on 10mg prednisone. That took care of my pain, but started having other issues about 2 months later. Began having symptoms of GCA, constant headaches, jaw claudication, blurred vision, swollen temporal veins and I even lost vision in my right eye for about 30 seconds. Before the vision issues, I was up to 40mg pred, after the vision stuff I was placed on 60mg pred. My rheumy wanted me to get a temporal artery biopsy. About 2 weeks later I finally found a Vascular surgeon who would do it. I was pretty concerned about getting this procedure done because I really didn't think anything would change, as far as medication and protocol, even if they discovered that I have GCA. The day I went down to get the biopsy done, my Vascular surgeon came in and suggested that I don't do the biopsy. He mentioned that he was looking after my best interest and had the same thoughts I did. For one thing, I have been on prednisone for so long and the possibility of discovering inflammation in the cells in my vein would be greatly reduced. I was relieved that the Dr had the same thoughts as I did. I did not get the biopsy that day. RELIEF!!! My Rheumy now wants me to get an MRA on my chest, neck and brain. I will be having this done this Wednesday! Each MRA scan takes about an hour each! YIKES!!! Anyway, I just have not been all that comfortable with my Rheumy. I have decided to get a second opinion from another Rheumy and am scheduled to visit with him in early April. I am really looking forward to what his thoughts are. I am now on 50mg pred and am slowing tapering down. I will be on 40mg this Friday and continue to drop 10mg every 2 weeks unless complications arise! I feel for everyone that has PMR and or GCA. As people have mentioned, others have no idea what our bodies are going through, this autoimmune disease really sucks, but we will all get through it! It's going to take time, but we all can and will get through this! GOOD LUCK TO ALL OF YOU!!!!!!

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@dougrout So I understand why you want a 2nd Rheumy opinion. I want to share my perspective on your story.
First your Rheumy wanted to take action and the test she referred you for is the Gold Standard test for GCA. I am not sure if a Rheumy is the one who should realize that running the test is not advisable since she is obviously not the expect for that test. For sure it is the vascular doctor's job to decide that or not.
This get's into what I refer to as the 4 inch rule. Doctors are so specialized now that they only know about 4 inches of your body. Ask them about adjoining inches and they will take the 5th.
Next I give your Rheumy full credit for wanting to determine if you have GCA and not giving up. You need to understand that GCA is a large vein vasculitis that can cause aneurisms in your aorta, if this is happening you will be happy that she is chasing it and if this is not a problem you will be happier that it has been eliminated.
I have an appointment with an aorta specialist in early April to help interrupt an MRI that shows a problem that could be plaque or could be the beginning of an aneurism. The doctor I am seeing has 11 years post medical school of training before he went into practice. Possibly the best educated doctor I have ever seen. Just hope he can apply all that training.
Now, check to see if you are having scans with contrast. Then see what they are using and see what the kidney risk is for that contrast. Use Dr Google or your AI tool to help. Depending on what it is it can be high or very low risk for kidney damage. I also have kidney problems so I am super cautious and as we get older all of us should be. Kidneys deteriorate on their own as we age. They cannot heal themselves, thus kidney failure can happen if the damage is significant.

Not saying you shouldn't get a 2nd opinion. Sometimes doctor's decisions/orders are not immediately obvious to us.
BTW, I was first sick in April 2019, Dx in 2020 with PMR, GCA Dx Nov 2025, with absolutely no GCA symptoms ever. Very different than your case.
I wish you success on your journey. Please keep us updated.

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