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Classic PMR symptoms but...

Polymyalgia Rheumatica (PMR) | Last Active: Mar 10 7:18am | Replies (8)

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Profile picture for dougrout @dougrout

I have pretty much had the same issues as has been mentioned in the comments so far! This past summer, I began having stiffness and pain in my hips and waist. I just thought it was age related and being 65 and very active, normal aging stuff. I would take ibuprofen and that helped. Things progressively got worse and within a month, the pain began to migrate to my shoulders, neck upper arms. I began to realize this was not normal. I dreaded getting out bed, out of a car, a chair, bending over to pick something up, stuff like that. Especially bad in the morning, but would improve slightly during the day. I ended up seeing my doctor about 3 months after initial symptoms. This was in late October! I was in excruciating pain at the time! He diagnosed me with PMR and placed me on 10mg of prednisone. Within a couple of days, I was pretty much pain free and feeling amazing once again. I even had lots of my flexibility back. Off and on sense, I have had my prednisone decreased and increased based on symptoms. About a month later, I began having headaches that would not go away and jaw pain. Tylenol arthritis at 650mg helped, but only for a few hours, at least I could get some sleep! I then began having double vision occasionally. My rheumatologist, placed me on 60mg prednisone, up from 40mg. There is a good chance I have GCA, jaw hurts while chewing and stuff! I see my rheumatologist again tomorrow morning to go over options. My rheumatologist advised 3-4 weeks ago to get a temporal cell biopsy done. I went to a vascular surgeon last week in Dallas and he advised against it since I have been on prednisone for so long. We will see what happens tomorrow. This high dose of prednisone that I take in the morning really begins to make me feel terrible about 30 minutes later and for the next 7 hours or so. So much fatigue, light headed and brain fog. Good luck with your condition and hopefully it won't progress like mine has. Knowing that over time things should improve helps! This forum has helped me a lot also!

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Replies to "I have pretty much had the same issues as has been mentioned in the comments so..."

@dougrout

I think the vascular surgeon is right. After starting Prednisone it is hard to interpret anything that could lead to a definitive diagnosis. It is even difficult to know if you have an infection or some other medical condition.

The problem with Prednisone is that it isn't a "targeted treatment" and it is prone to have systemic side effects. Prednisone is a powerful immunosuppressant and anti-inflammatory medication that significantly complicates medical diagnostics by masking symptoms and altering lab results.

Your description of your symptoms sounds consistent with GCA and sounds exactly like what people experience with Prednisone. Being on 60 mg is a lot of Prednisone. I'm not a fan of Prednisone anymore because it only controls inflammation for 24 hours or less. That means you have to take it every day or else the inflammation returns every day. Some people say the pain and inflammatory substances return in the middle of the night. That only means the inflammation isn't controlled during the night.

In the short term -- Prednisone is great. The longer you take it ... the worse the side effects get. I would encourage you to have a discussion with your rheumatologist about trying a biologic or even Rinvoq. There are some FDA approved alternatives to Prednisone these days. Nobody should be encouraging other people to continue taking Prednisone on a long term basis meaning years-- let alone for the rest of their life.

I think John Hopkins Vasculitis Center is a reliable source of information.
https://www.hopkinsvasculitis.org/vasculitis-treatments/prednisone/
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This Mayo Clinic forum is fantastic for learning about the experiences that other people have who are on Prednisone. Also, many people here are being treated with alternatives to Prednisone.