Increasing unrelenting pain - PMR?

Hello @elizabethjoan, I'm so sorry to hear that you are having difficulty managing the pain. It sounds like you have a lot of stress and physically demanding chores that had to be done, pain or no pain which can make your situation much worse. If you went back to 20 mg prednisone and you didn't get any relief like you did when you were previously at 20 mg, there could be other factors at play. Even on my good days with prednisone if I over did my daily activities I generally paid for it the next day with more pain. Also, you mentioned that it's only in your right knee and some in the thigh and calf.

Have you talked with your rheumatologist about the new flareup of symptoms?

No I have not spoken to any of my docs as no one had power and offices closed. I do have an apt with my rheumatologist on Thursday. I would like to,get blood work pre that to see my numbers.

Yes, the visit with your rheumy is good and the lab numbers will be educational but I agree with John, I think you have had to overdo the physical activity. I certainly sounds like you have stressed your knee. I would not expect your pred for PMR to address that. Afterall, our bodies have to have some way of speeking to us. Pain is a message. Learning how to interpret it is the trick. Best of luck. Be sure to tell your doc all that has happened.

Hi @elizabethjoan, my immediate reaction to your post was that you need to be on a higher dose of prednisone. I was diagnosed at the end of May and put on 20mg. It didn't touch the pain--but 40mg eliminated it completely. 40mg is an unusually high dose and doctors are reluctant to put people on that much, but it was the only thing that helped me. (At one point I was unable to walk without the aid of my 88 yr old mother's spare walker.) My dr said that I simply have an unusually severe case of PMR that will take a bit longer to calm down. I am now at 30mg and doing ok--a bit of pain, but nothing I can't handle, and my inflammation markers are down. Believe me, it's not fun: I'm experiencing all the side effects of prednisone and can't wait to get off this stuff! But it's essential to stop the flare. Until you get the inflammation under control, PMR can't resolve. You may not need as much prednisone as me, but I do think you should talk to your dr about increasing the dose. Good luck. I hope you find relief.

Hi, @elizabethjoan, I'd have to agree with ldingwall88, that you were not given enough pred. to start with. And from there I would go on to say you probably went down to 15mg way too soon. If I were you, I would talk to the doctor about starting over with a high dose until the pain goes away. Then taper down gradually from there. At high doses, it's not unusual to go down by 5mg, but you shouldn't taper if you're in pain. Stay where you are until the pain is gone, and then go down. Once you get down to 15mg, you should probably go down by 2.5 mg. When you start mixing in other pain killers with the prednisone (which isn't usually recommended) you are confusing yourself whether the dose of pred you're on is actually working. Try some ice and heat on that knee, maybe. It's entirely possible you have injured yourself with lugging all that water. I'm so sorry you're going through all of the PMR stuff, and now you're dealing with a hurricane. The stress from the hurricane can also be adding to your PMR issues. Stress uses up some of that pred. you're taking. And that's a whole other story!! Look up "adrenal gland and long term prednisone".

Just an update from my post about the ‘unrelenting pain’.I saw my rheumatologist the day before yesterday. Now I am more confused than ever. He was not pleased that I had increased my prednisone to 25 and was back to the orders that I had to taper as planned although he did concede that I could go slower. He also said I should be experiencing very little pain when decreasing. This seems a conflict to me. I have not had any significant decrease in pain so therefore should not be decreasing.
However he used the ultrasound to examine my groin where the pain and stiffness were. He aspirated a large amount of cloudy fluid which has been sent for culture and then gave me a cortisone shot in the groin for my ‘arthritis of my hip’. I told him I did not have arthritis in the hip…or anywhere else….but he said I did. AND yesterday morning I woke up totally pain and stiffness free…had the best day I have had since May. Wonderful. Of course I did far to much and it came back a bit but I was sure glad to have a good day. No idea what this all means…another chapter in this novel, I guess.

What a journey! I admire your persistence. Good luck.

I (and others) have had a systemic effect from cortisone shots in joints. Meaning they seem to up your overall intake just like taking them orally and effect how you feel generally. Could be what happened to you. If so, it will wear off gradually over the next couple of weeks. I look at it as an indicator that I "need" more steroid to be pain free. That you had fluid in that joint is puzzling. Have you had xrays of your hips recently? It will be interesting to hear what the lab finds. Unfortunately, most of us are of that age where our joints do have arthritis, just from years of use but they don't bother us. I had one reumy look at my joints of my hands and told me I had arthritis of the hands. They don't bother me. I had a CT that told me I had gall stones and a cracked, yet healing pubic bone. None of which bothered me. So thanked my lucky stars. I hope you find some answers for your situation. Keep trying, we hope for the best for you and let us know.

I feel your pain literally. I am off Prednisone after 3 years. I'm going to see my Rheumatologist tomorrow. Pain in knee, hands, shoulders, foot and upper thigh. Been to Orthopedist, two hand specialists and Podiatrist. Everyone has different theories. I've been told the knee is bursitis, the hands arthritis and the rest PMR. I think I need to go back on 5mg of Prednisone and see which pains go away. My husband is a Doctor and he thinks it's all connected. I will update after appointment if there is any new information. Tired of going to doctors and tired of pain. I do feel that if it was all related to your PMR that you shouldn't be having pain on 15mg, unless you are tapering too fast. Prednisone can aggravate osteoporosis, which is why I want to be off, however, living with pain every day is difficult. I am curious if my CRP and Sed rate went up. Stay tuned.

Flymetothemoon, please let us know. We're all trying to learn about this disease. I'm glad your hubby is a doctor, he can help educate other doctors. I have experienced the different theory phenomena also. It does not help. Best wishes to you.