Question about PMR pain locations

Welcome @papasrockyworld, It is definitely a great feeling when that first dose of prednisone kicks in and forces what I call Mr. Ugly into hiding. I'm hoping the pain will stay away when you start tapering off of prednisone. Many of us struggle with tapering and trying to taper too much and too fast to get off of prednisone. You mentioned it has also given you a giant appetite for food. I think that may be one of the warning flags for some of us with the weight gain side effect of prednisone.

There are a couple of other discussions you might find helpful in your PMR journey:
--- PMR Dosages and Managing Symptoms: https://connect.mayoclinic.org/discussion/pmr-dosages/
--- When and How to Taper Prednisone: https://connect.mayoclinic.org/discussion/when-and-how-to-taper-prednisone/

One suggestion that I think could help is to keep a daily log with your level of pain/aches when you get up in the morning along with your dosage of prednisone for that day. Has your rheumatologist suggested a tapering schedule for you?

Polymyalgia Rheumatica (PMR) typically presents with pain and stiffness, commonly in the shoulders, neck, and hip areas. While PMR often affects both sides of the body symmetrically, it's not a strict rule, and variations can occur. It's possible to experience symptoms on one side more than the other or even predominantly on one side.

However, if you're experiencing localized pain and swelling in just one joint (such as the knee or foot), it's essential to consider other potential causes. Conditions like gout, osteoarthritis, or inflammatory arthritis can also lead to pain and swelling in specific joints.

Given your symptoms and the previous diagnosis of PMR, it's crucial to communicate effectively with your healthcare provider. They may need to reevaluate your condition, consider additional tests, or explore other potential causes for the symptoms you're currently experiencing.

If you haven't already, consider scheduling a follow-up appointment with your rheumatologist or primary care physician to discuss your recent symptoms and receive a more comprehensive evaluation.

When I was diagnosed I went on a Vegan diet. Coupled with no oil, gluten or dairy and nothing with a high PH. I gained no weight. In fact, I lost 40lbs and am healthier than I have ever been. This way of life could solve the weight gain. It will also help restore the gut biome and heal the stomach wall which can be essential to having your PMR symptoms go away. Not to mention assist in prednisone reduction.

I have had some pain on one side but not the other. Mostly though it has been symmetrical. Pain migration is very common with PMR just like RA.

How did you manage to keep dietary calcium intake high on a vegan diet? Women especially suffer bone loss with prednisone, so dietary calcium to limit bone loss (rather than calcium supplements which can cause other problems) is essential. Animal protein is also important to help with prednisone muscle deterioration.

I agree that removing processed vegetable/seed oils is a good health move - extra virgin olive oil only for me - and most people benefit from removing gluten too, but so many essential vitamins and nutrients come from animal sources. A vegan diet requires taking way too many supplements for me.

@john In a lot of pain today. Tapering down to 6.5 but upped it to 7 and no relief. I have worked so hard to get down to 6. Prednisone has led to high diabetic numbers which I am being treated for. Should I go higher like 10? Hate to do it, though.

Hi Mary @marymckeith, I'm sorry to hear you are struggling with additional pain. You mentioned in an earlier post that your doctor sent you to a rheumatologist who thought you had RA. Just wondering if they no longer think you have PMR? If it were me and the pain started when I dropped to a lower dose of prednisone, I would try going back to the previous dose to see if my pain went away or even try going up 1/2 of the amount I tapered down instead of going all the way back to my previous dose. Tapering off of prednisone is different for each of us which is one of the reasons I think it's important to keep a daily log with the dose you are taking along with your level of pain when you first get up in the morning before taking the dose for the day. You might want to give your rheumatologist a call and have a quick conversation about your symptoms.

Thanks. They can't decide about the arthritis. :Prednisone knocked it in the beginning and I don't have the swelling that goes with RA. Don't know what to believe. I will try upping meds a little more and see what happen. All I know is its arthritis and colder weather seems to make it worse. I am also on a 20 mg once a week of methotrexate. Can't tell if helping. Thanks for responding.

With proper planning and eating the right things you can get all the vitamins and minerals you need on a Vegan diet. I take a multivitamin, curcumin, and buffered vitamin C. Suffering bone density loss is something that is different for all of us and the best way to understand this as an individual is get a bone density scan. This problem solves itself when you being to taper to lower doses. It is the same with protein and muscle loss. You can run from it but you can't hide. The goal is to heal the stomach, create a healthy gut biome and this is done much easier without animal protein (Fat), acidic foods, gluten, dairy, alcohol, coffee, and anything inflammatory. Personally I did this for 5 months and recently have added back in fish, eggs, olive oil, and chicken. Sparingly at this point. I'm at 6 mg now after 190 days on prednisone. Everyone needs to do what is right for them I would urge people to research this more and not just listen to a rhuem. One great resrouce is Clint Paddison. He has a full program for healing for RA but the sample principles can be applied to PMR.

I know stiffness is a hallmark of PRM, but I also have a lot of very bad back and hip pain. Is it normal for stiffness to be under control, but still have pain?

Hello @reewhite. I moved your discussion and combined it with an existing discussion titled, "Question about PMR pain locations" - https://connect.mayoclinic.org/discussion/question-about-pmr-pain-locations/.

I did this so members discussing PMR pain, like @pst, @deejayc, and @arslanbutt would see your message and may shed some light on their experiences.