Hi
I have been diagnosed with PMR a couple of months ago, I'm 45
Currently striking the balance with Pred and Methotrexate
Hoping the Meth will allow me to wean of the Pred
One thing my Rummy told me was non of his patients suffer with pain in the fingers
I suffer greatly, especially the first few hours after wake up, main areas are shoulders, back of the legs and fingers
Would be interesting to hear if i am the only one or are there any others who suffer finger pain
Thank you
Then he has led a very sheltered life or he has a very selective patient population!!
I had awful synovitis/tendinitis in my fingers, it was like knives slicing along them at times. I struggled to hold a mug of tea, a cup or mug with fancy small handles was horrendous - I needed a builder's mug to go with the builder's tea.
There is no guarantee that mtx will get you entirely off pred - if there were they'd use it and not the steroids they are so scared of. It MAY get you to a lower dose but even that isn't sure.
I'm surprised they "allowed" a diagnosis of PMR at your age - given people in their 50s and even 60s have been told they are "too young"!
Thanks for your feedbackThey didn't want to diagnose pmr at first but I have had ct scans, pet scan, various blood tests, this coupled with my response to steroids brings them to this conclusion. What I have found is being on 20mg peed per day is manageable through gritted teeth, but when attempting to go to 15mg....well i could barely walk or lift...so back on 20mg for now until the MtX kicks in then they will reduce the pred dosage. I'm hoping I'm in good hands
My rheumie got me to drop from 20mg to 15mg, in my case it was much too much, you should not drop more than 10% and that is 25%. I was ready to go to A&E I felt so bad. The trouble is doctors give us steroids and it works beautifully, then in the next breath they act like bats out of hell wanting us to reduce. I have doctors who say no one has has that problem, so you feel terribly guilty because you do have it. You then find out that lots of people have it and the doctor was probably not listening!
Try a MUCH smaller reduction step - no step should really be more than 10% of the current dose and even that is too much for some. They often whinge it is too slow - it isn't slow when it works!!
There is absolutely no guarantee that mtx will help you reduce your pred dose. It seems to work for some people but not for others. It is not a substitute for pred. You still have to rely on sufficient pred and a much slower taper of the pred will help you avoid having to increase your dose and get into the dreaded "yo-yo" situation. What mtx will do, if it works, is help with that pred taper so you can get to a lower dose marginally sooner than if you weren't taking it. I believe studies have shown that in the end the difference in outcome for PMR patients who took mtx and those who didn't is virtually non-existent, but that's just my (probably faulty) memory, don't have a link.
Are you thinking of the Italian work that found that yes, the mtx patients achieved a lower dose of pred after a year (but it took a year to see a difference) but at 5 years there was no difference in pred adverse effects.
pubmed.ncbi.nlm.nih.gov/185...
Just noticed - there were 58 adverse effects in mtx treated patients, 55 in the controls! Hum ...
Here's another one who suffered with extremely painful, stiff fingers on waking. However, that was pre-diagnosis and pre-Prednisolone.What dose of Pred were you started on and what are on you now?
My hands, wrists and fingers swelled and hurt for moths even after I was on 20mg pred. I
I could not curl the middle finger on either hand.
While that lasted, I would demonstrate to people giving me a hard time about anything that "There's a reason God froze my finger like this!"
It eventually improved, and I have no troubles with my fingers or wrists now.
Always good to hear good news mate here!
Thanks for all feedback.My consultant got her colleague to assess me today for a 2nd opinion as she also said my age doesn't fit pmr. His view is the same..I have pmr. He wants me to wean from 20mg pred to 17.5 the down to 15mg whilst the mtx kicks in.
This has come on so quick over the last few months, no clue why and I'm just learning about pmr. I have good ish days and bad days and I'm looking for triggers, not sure whether there are any. My consultant said I'm very responsive to steroids and when and if symptoms get worse as I wean off as the mtx kicks in, she will just take me back off mtx and increase my pred dose again, not too sure if that made sense.
I'm also booked in for a covid jab in the next couple of weeks, this scares me a little as not too sure how it will react with the medication im now taking, the consultant also told me it may not give me any protection due to pred intake...
Sorry for rabbiting on
In a webinar from just before xmas, Prof Dasgupta from Southend UK said that he is recommending a holiday from mtx the week before the jab to allow the immune system to come up a bit and for 2 weeks after to allow it to work on developing immunity providing that doesn't impact on their disease. This is recommended practice if you develop an infection while on mtx. There are no official recommendations but there has been a study that found this improved the response to flu vaccines.
Oh this is bad news for me to read this about pmd not giving us protection against the vaccine. I am due to have the vaccine on Friday. I have been on PMDfor three weeks now and it is working well at 15 mg. So I rang my GP last week to ask the question and the receptionist said steroids would have no affect on the vaccine. So I don’t feel I can get through to my GP now.
You are telling me and others that I should have a weeks holiday beforehand. Should I take the law into my own hands and drop by PMDstraight away? And early reply would be very helpful!
I assume by PMD you mean prednisolone? NOT prednisolone - other immunosuppressants such as methotrexate or Actemra which you would stop if you had an infection anyway. Stopping pred is a very different matter and none of us could stop pred to have our vaccine - far too dangerous after any length of time on it.
And whatever you want, it isn't "protection against the vaccine"
Yes, Prednisolone 15mg a day is what I take and Alendronc Acid once a week. What is this for? Sorry , new to all this and I’m trying to copy everyone else’s abbreviations! So you don’t think the steroids will affect strength of vaccine? That is what I want to know really . And why should I stop the AA if I had an infection?
Thank you do much got your help.
Please try to read what is written carefully and look to whom it is written in reply. You cannot take every reply you see as necessarily applying to you.
AA is for bone protection, it isn't an immunosuppressant. It is the extra immunosuppressant medications such as methotrexate that are stopped if you have an infection. Not pred and not anything else. You must never stop pred suddenly, whatever happens, unless a doctor decides it is essential.
Are you actually taking alendronic acid without having been told why? Have you had a bone density scan (DXA scan)? Everyone should have this done before starting any medication like AA.
Yes, it was prescribed with all the others when I started it three weeks ago.one, once a week. Isn’t it to protect against osteoporosis? You’ve obviously not happy about it. Can you tell me why? I’ll then ring my doctor , so thanks for the implied warning.
This is only my personal opinion but I do know it is shared by many of the forum followers. I was simply shocked you'd received no education about the medication, nor confirmation that you actually needed it. Rather than trying to find a bunch of internet sources I'll send the link to the process I went through during my first year on pred (and after). I will say that it seems AA is one medication which has been used for many years and its effects and side effects are well known, unlike some of the newer drugs.
Were you told to get any necessary dental work done before you started taking it?
And latest recommendations suggest that it should be taken for only two or three years before taking a break from it. This is to reduce the chances of "atypical" spontaneous fractures caused by new bone being laid over an increasingly aging matrix. The way alendronic acid and many of the other bone meds work is by stopping older bone from being removed, which is a normal part of what they call "bone remodelling" so that comparatively more new bone is made. This is supposed to increase bone density. Unfortunately the chief benefits of this are seen in the first couple of years and eventually it becomes counterproductive to continue. Many doctors do not yet seem to know this.
The other thing is many of us find when we have our bone density checked that we really don't need it. There are, as you will see from my story, other ways to improve bone density. I feel that anyone who is borderline or better should not be given a bone med "just in case" but offered information about diet, a few supplements, and appropriate exercise - all of which are good for over all health, not just bones.
healthunlocked.com/pmrgcauk...
Thank you so much. I’ll check it out with my doctor
I recommend you do a lot of reading before you go to your doctor. My doctor who was always very good with my PMR treatment suddenly got very much more anxious I start AA after she went to an osteoporosis workshop. I have no idea who sponsored the workshop or what the doctors were told, but I do not believe doctors learn that there are ways to treat low bone density any way other than with medications. Why not start by asking your doctor for the DXA scan as it's a good idea for any of us to have one after a certain age anyway. You really do need to know if this medication is necessary. Good luck! Let us know how you get on. 🍀
My mantra is "No dexascan, no AA". If you don't need it there are other ways to start off as HeronNS says.
My hands hurt so badly I typed with my pinky for my job and couldn't pull on elastic waisted pants.
Oh my. Did that clear up fairly quickly after you started pred?
No because I wasn't correctly diagnosed and was on Methodrexate. I was given a Prednisone pack that made me throw up blood so I stopped and it was at least 6 months.
I found I had a lot of pain in my thumbs. I finally figured out It usually was the first sign that I was tapering below the needed amount of Prednisone to control my PMR. It has always remained a sign that a flare was coming.
In the beginning of PMR, my fingers became swollen so that I could not wear my rings for about six months.
I was 63 when first diagnosed a year ago- had arthritis in one wrist and a slight twinge in other. After being on 40mg prednisone and tapering down to 4 (12 months) I gave noticed my fingers and wrists both tender for much of the day. I have rationalised this as over working them while pain was masked on the higher level of drugs - just a theory and may not apply given your age or if you had no previous problems? Good luck
After the shoulder pain, my hands were the next thing to go, swollen like sausages and had no grip whatsoever, couldn’t even peel a banana, that was before it was recommended not to eat them anyway. Then the wrists and tops of hands were the next thing to give a lot of pain. Having said that, eventually could get my rings back on after a few months and all pain disappeared, so hope the pred soon kicks in for you.
Why no bananas? I understood they were a source of potassium? Thanks 🙃
Very high in carbs, and am trying to keep weight down. Miss them and you are right they are high in potassium.
Ah, thanks. I'm one of the "lucky" ones- haven't gained any weight in my 18 months of PMR & Pred 🙄
Things that are higher though!!!
I suffered from pain in the mornings, so against my GPs advice I now take the Pred in the evenings. Pain free all day!
I had pains in hands/ fingers, typically in the morning, after about 12 months of being diagnosed and was told it was atypical for PMR and therefore unlikely to be the cause. I had scans on my hands and they suggested general wear and tear but I’m not convinced. It subsided after after around 4 months even though I was on a decreasing dose. I’m dropping from 2mg to 1mg presently and get the odd twinge but not that painful. I hope yours follows a similar pattern.
Itchy palm and painful fingers
hands and fingers
Swollen fingers 
Stuff fingers now I’m off pred. 
Aching fingers
