Hand pain with PMR

Well today I sent my rheumatologist a hyperlink to an article about RS3PE syndrome. It is my hope she will become a little educated. If she opens up to this idea then I'm going to send her the Bristol paper and see what she does with that. She seems to think that I'm going to be over my PMR in one year. And she's got to understand that this thing's going to last anywhere from one year to who knows how long.

On another thread there is a discussion about a paper from a top Italian group - where they established that about a third of patients are still needing pred after 6 years and that while using methotrexate may reduce the total dose of pred it doesn't reduce the pred-related adverse events in the longterm. And comment that PMR is NOT the benign disorder it is considered to be by so many rheumies.

I googled "long-term follow-up of polymyalgia rheumatica patients treated with methotrexate and steroids" - and if you click on the link that says pdf at the beginning you get the whole paper (the clinexprheumatol link).

I'm afraid my hands don't just hurt a little bit or are just a little bit stiff in the morning. I'm talking about real pain. I can barely pick up a cup because my thumb hurts too much to do it. There is a slight bit of swelling in the morning and that goes down very quickly. But the pain in the meaty part of my thumb stays all day and the fingers and wrist as well. I don't know if using my hands working through the pain would make them stop hurting. I do continue to use them through the day, after all they're my hands I really can't not use them and that doesn't seem to change anything.

I am sorry to hear that you are suffering so much.  I wonder if medical massage or lymph drainage  might provide some relief for you?   Perhaps your healthcare insurance will foot the bill if your physician prescribes it. It might be worth a try.  I do hope you feel better soon.

Would some sort of brace help?

I've never heard of lymph drainage. What is it and what does it entail?

It is basically a specialised form of massage which stimulates the lymphatic system to remove excess fluid from the tissues. Just google it and you will get loads of links - including to videos. 

You have probably seen post-mastectomy patients who wear a compression sleeve? That is to encourage drainage of fluid into the lymph nodes in the armpit which may have been affected by the surgery. Manual techniques are even more efficient. 

Wow 50 mg is a high dosage of Prednisone to start out on for PMR. Most people are started out on 15 to 20 mg for PMR. They usually prescribed around 60 mg for GCA.

After bringing up RS3PE to my rheumatologist the other day she said that I must have misunderstood her and that it is possible to have pain in your hands with PMR. But she didn't feel I had rs3pe. Whatever the case my hands have actually gotten better since my body has adjusted to my new dosage all except for my thumbs. So it looks like I may have to suffer with pain in my hands every time I adjust my dosage.

I hope the prednisone you're on resolves your hand pain.

That is a very high starting dose for PMR and it runs the risk of masking other causes of the symptoms since other things will respond to pred at that level while PMR will respond to much lower doses.

However, if you have synovitis or tendonitis in your hands it can take a few weeks for that pain to improve as the blood supply to those areas is less good than to muscle so it takes longer to deal with the inflammation. My hands and feet took a few months to really stop hurting. The muscle pain was mostly gone in hours.

Yes, I think it is a v high dose to start on. But the package of 25 mg tablets says take 2, discuss with Doctor after three days.

sadly I don't think it's just PMR I'm dealing with, but it's just three weeks since i had a full abdominal hysterectomy to remove an ovarian cyst, on top of a trapped nerve in lumbar spine, all confused by huge doses of gabapentin and opiate patches, none if which was helping. 

I will be 60 next month, drive a horse and trap, and hadn't planned on this nightmare. Grateful for any comfort and support. 

I'm on opiates too and it doesn't do anything for PMR pain.

Yes, i think I have come to understand that, but it has helped with the sleeping through some of the pain and withdrawal from gabapentin. 

For goodness sake - the pack instructions are for other things - not a chronic illness for which it is the only form of management. It is up to the doctor to write the PROPER dose for the situation. Of course it isn't a problem in most countries - you can only get 5mg tablets as the max dose!

Time to discuss it very soon!

Thank you Eileen, I am seeing my doctor on Friday morning. elsewhere on this site people have been lambasted for not sticking to doctors advice and self medicating, so I am not sure whether to reduce to one tablet only or continue till I see him on two. Any thoughts? 

If it were me I'd be down to 1 tablet - that's 25mg isn't it? Which is a more usual starting dose. But that's because I've had PMR for a long time and have obviously read more medical literature than your GP! Unless maybe he thought you needed a lot of help after your last few weeks. 

There aren't many people who would tell you off about that. People who haven't had PMR for long perhaps and who haven't been through the awfulness of being on far too high or low a dose - they are both bad experiences. How are you coping on 50mg? 

I echo what the others have said.  As long as there was no indication you have GCA, which would justify the high dose, I think you should seek clarification regarding the dosage.  It almost looks like a mistake, that the dosage is for some other condition.  

I have an acquaintance who was started at a high level, I think it was 40, for PMR, and her doctor, trained in Hungary, said she needed to take the high dose so she did not develop GCA.  Puzzled by this, I quizzed her and she confirmed she had never had GCA symptoms, this was her doctor's preventative plan.  Unfortunately she has never been able to reduce successfully below about 30.  Ithink she's now been on steroids for nearly a year.  It's almost like the high initial dose really messed things up for her.  At least your high dose is for a very short period so hopefully it won't cause problems down the road.

As if taking a high dose would prevent GCA developing - what a strange idea. It can take days - or years. Did she want to keep her on the high dose for a long time? I do remember you saying about her.

I can't remember now how long she stayed at the high dose before her multiple unsuccessful attempts to reduce, but I'm sure it was more than a few days. However I found her a very frustrating person to talk to.  She did, actually, ask me for advice but didn't want to hear what I had to say (diet, exercise, stress avoidance, dead slow reduction plan), and had great faith in her doctor which I didn't feel qualified to try to undermine.