PMR Dosages and Managing Symptoms

Thank you. My soreness with 12.5 mg is getting worse unfortunately. I am still wondering we should be taking enough Prednisone to eliminate 100% of the pain or is it okay to have some stiffness and pain in order to keep the Prednisone mg amount down. Will this approach hurt recovery time or results? I wonder if an expert knows the answer to this. I am going for a second Dr. opinion on 1/31 and will ask.

I'm expecting a call from my Neurologist today or tomorrow and I will ask him. He is trying to get me into a rheumatology clinic here in Halifax on an URGENT basis, but urgent here is end of May and that's not bad for Canada. My question for him is should I remain on the 20 mg until end of May or as long as needed, or what. All I do know is...everyday I notice something new which I was unable to do 2.5 weeks ago, such as reaching my arms back. Sometime there is still some sharp pain in my upper arms toward the back. My middle finger, right hand is still pretty stiff but the left hand is close to normal. Both hands had what appeared to be carpel tunnel and I wore splints on them for about 3 months, making my job impossible. Perhaps you do need a higher dose, but the second opinion is a good thing. Cheers ~ Deb

Thanks. Sounds like this is new for you too. Isn't this just unbelievable? I never knew this disease existed before. Anyway, yes you need to see Rheumatologist to get the proper blood tests and be put on the Prednisone treatment plan where they monitor your blood test levels and determine the dosage requirement month by month, is my understanding. Good luck. Waiting til May is long.

Yes. I'm pushing because up here we have to. The neurologist is very thorough though. I knew not of PMR ever. Mine actually started suddenly mid-August and I never was diagnosed until beginning of Jan./22. A long time to be in agony and not knowing what was causing it eh, but my family doc was just not listening and has since retired; last going off he finally referred me on an emergent basis to the neurologist (after Christmas). Ugh. The CRP levels were alarmingly high, but normal now.

That is horrifying! I can't believe you lasted that long! Yes it must have been agony. I was for just 2 weeks in agony without any meds until I could finally get into to see my primary Dr. . How did you last for 5 months?!!! My doctor gave me one of these Prednisone 6 day packs that starts out high dosage and winds down to 4 mg over 6 days. (I don't know why- obviously not the right treatment). So I was back to being in agony again the day after the pills ran out until i could finally get in to see a Rheumatologist 1 week later. Weren't the evenings and mornings just dreadful? - I feared them each evening and stayed up very late into the early morning just to avoid going to sleep.

I was barely clinging on. I also dreaded going to bed because, although the nights were awake every couple of hours in pain and having to fight my way outta bed to use the bathroom, the mornings were excruciating. I can't imagine getting your little pack of Prednisone and then going back to the pain. I don't know how I did 5 months and worked for 3 of them (work from home). I was getting up at 5 to take Tylenol and Ibuprofen and CBD oil to be "ok" to start work at 8. Thank you for sharing your story. Do you have side effects from the dose you're on? I would wager any side effects far outway the excrutiating pain. Also I was wondering if your symptoms began in close relation to your Covid jabs if you had them, because mine did. This is not a disease that's genetic in my family.

Thanks for sharing that. I still don’t know how you endured that.
Yes I have some side effects but 12.5 mg is considered a low dose. I already have osteopenia so I am really worried about the dose but my doctor calmed me down about it at my visit earlier this week. Said short term use is okay and hopefully the dose will go even lower eventually. But my blood pressure went up really high since being on Prednisone but it could also be the combo from the stress of it all. My face gets flushed too. no weight gain really on this dose. I dont think as clearly and forget words. Yes I think side effects outweigh the PMR pain. I can’t go back there and not being able to get out of bed etc.
I am trying to take natural supplements alongside the Prednisone with hope it helps keep my dose low. turmeric, fish oil. and such. I am taking CBD oil too but I just read yesterday that those with autoimmune should not. and it might go against the Prednisone. I believe that was why.
The Prednisone was working better the first week. Now the 2nd week it seems like it’s wearing off. I will ask my Rheumatologist on 1/31 if I should increase the dose. I broke down and took Motrin last night because pain was getting very uncomfortable. I worry about too much I ibuprofen. Doctor also prescribed Celebrex and said she prefers that for me over Ibuprofen but I am nervous about that drug.
We are suppose to exercise to help with PMR stiffness but my exercise routine totally got thrown off as I could not due to the pain. And now I do yoga like a 90 year old. I am 59 and was in excellent physical shape. I can’t believe this is me now.
I totally agree with you. I dont have family history either. very peculiar. My COVID vaccines were in March and May and my symptoms started in November. but I did have flu vaccine on 10/31 so I am suspecting it. if you research you will find PMR is linked to flu vaccine. 😩. There is a law suit out there also.

Hi @abbeyc. Because you have some of the same questions that other members have shared about in an existing post, you will notice I have moved your post to allow you to join that discussion and even scroll back through previous posts. If you're interested, just click on the View and Reply button.

I read the PMR Forum on Healthunlocked.com out of the UK. There are a few long-haulers with great expertise (and credentials) on that forum and I've learned a lot. One thing is if your dose is lower than you need at the moment, inflammation will continue to build up until you have a flare. The usual starting dose is 15-20 mgs. You should find almost complete comfort, stay there for awhile and then try a slow reduction. If you're comfortable at the lower dose, stay awhile and then slowly drop again. Once you get to 10 mgs. don't drop more than 1 mg. at a time. If you feel pains again, don't reduce further. I can't say I was 100% comfortable, but if you're feeling PMR pain you probably shouldn't reduce for now. You can try again later.

Thank you! This is exactly the information I was looking for. When I see my Rheumatologist on 1/31 I will mention this and see if we should up my dosage to 15 mg perhaps. Thanks so much!!