I've had something resembling PMR symptoms since Feb this year and have been on Pred since, which has virtually wiped out all the symptoms until now. I was up to 30mg/day for an extended period and am now down to 12mg/day for the last week. My doctor and Rheumatologist have not been convinced that I have only PMR from the start, as I had severe hand stiffness and weakness in both hands and wrists when it was at its worst, as well as the usual legs and hips stiffness/weakness. Not a great deal of pain though with it. All my blood inflammation tests showed very high levels of inflammation. both agreed that the hand issues were not related to PMR and were probably the beginnings of Rheumatoid Arthritis. I had two different blood tests for RA done as well as all the other usual tests like Lupus and Poliomyelitis etc. All were negative. As a consequence I received the rather wooly diagnosis of Polymialgic Rheumatic onset!!! I saw my Rheumatologist last week, who is still convinced I have RA in my hands as 30% of people with RA are negative to the tests. She wants me to drop my Pred 1mg/week to see if I get a flare so that she can see inflammation in my hand joints. She will then do either ultrasound scans or take fluid from the joints in an effort to prove/discount RA! Last night I had a bad flare in my L Hand that was bad enough to wake me up and is swollen and stiff today, with some discomfort. Since reducing to 13mg/day, my hand has been steadily worsening. I am convinced my Rhematologist is trying to pidgeon hole me with RA and I cannot understand why it is not accepted by the medical establishment that hands and feet stiffness/swelling/pain cannot be associated with PMR as well! It would seem to me that the chemicals/hormones in our systems that cause the PMR symptoms are systemic and would therefore be able to affect any area of the body? I would welcome anyone's thoughts on this and is there anyone else out there who suffers with their hands in this way too? Sorry for the long message btw!!!
P.S - I think this is a fantastic forum and wish everyone as speedy a recovery as possible from this awful disease.
How quickly did you reduce from 30 mg to 13 mg? You definitely can have pain and cramping in your hands from PMR. My guess is 13 mg is too low for you right now and when you do reduce you need to reduce slowly.
My recommendatipon is try 15 mg, if that helps eliminate the pain then reduce at 1 mg per month.
I've had PMR since last December. I have pain in the tendons at the back of my knees and both wrists (particularly the right) but nowhere else, although with no swelling. So of course you can get pain anywhere. I'm on 6mg at the moment but when I was feeling particularly uncomfortable in June I just stayed on the dose I was on for a couple of months until I felt able to continue reducing. Toughing it out is probably not the best way to carry on but unfortunately I'm a bit of an idiot! Works for me.
Steve - I too have significant stiffness, weakness, cramping and intermittent swelling in both of my hands. I had this long before the other PMR symptoms raised their ugly head and eventually I was diagnosed with PMR . There is no doubt in my mind they are related and the docs don't know squat about many of the things we deal with.
Yes I have hand issues that one Dr. is saying it's something else in conjunction with PMR Now 2 Doctors. 1 still trying to figure out whats up with my hands and the other Dr. saying its carpo tunnel.
The issue is left hand 2 middle fingers and index finger are numb same for right hand but a bit less numbness. has been this way for 4 Months now since developed conclusion of PMR
Very frustrating whereas I need my hands, there my tools for everything I do.
Hopefully hands will just come back to normal soon.
Interestingly, as I reduce using the dead slow method, I have now reached a point where my hands (both but sometimes just one) start hurting and I have sharp pains at times. (I am an art teacher so use them alot cutting, etc.) I upped my dose a tad (.5 mg) to what I was at before and the sharp (and dull) pains went away. I have also noticed that on a .5 reducing day, the niggling pain can move around, as if my body decides to "attack" different areas at different times. I wonder if your doctor realizes how important it is to reduce very very slowly (dead slow method) and also, I agree with Scotth42 - the doctors too often (even mine) don't have the depth of knowledge about this PMR disease. I also have found gentle massage on an affected area (I have a really good massage therapist) and the Grafton techniques my physical therapist uses to break up adhesions and scar tissue have really helped me. When I retire soon, I shall be sad to loose my super great health benefits, sigh. I'm grateful to be at 6.5 mg pred a day (split dose). and yes, this is a terrific forum!
First of all I'm going to address the hands. I'm kind of having a similar problem with my rheumatologist but in my case it's my hands, wrist, ankles and feet. Like you I tested negative for the RA test and she even put me on an RA medicine for several months to see if it helped and of course it did not. So I'm off of that and then she puts me on gabapentin which has done nothing to reduce my pain. But I have dry eyes and dry mouth bad enough that it needs to be treated so we're thinking Sjogren's syndrome now. We're not discounting that I have PMR. I also but PMR makes your muscles hurt all over. Well to me it feels like I have the flu with the achiness and then sometimes it gets a little worse than that. But my hands and feet hurt so bad I can barely walk today. Now I'm just so sure it's Sjogren's and I'm having a lip biopsy done next week. If you have dry eyes and dry mouth you might consider looking up that disease and see if it matches up with some of your symptoms. And BTW you can tell you have dry eyes if they feel gritty sometimes or you feel like something's in your eye but there's nothing there and/or if your eyes tear up a lot.
One other thought I wanted to convey was about your Prednisone treatment. I think you're tapering way too fast. To go from 30 to 12 since February sounds like a very fast typer and tapering too fast can cause pain too.
Well that's my 2 cents worth. Whatever's going on I hope you get it resolved
Before I was diagnosed, my fingers were swollen and I had to stop wearing all my rings for about six months. PMR diagnose and pred gradually cured.the hand pain which mainly occurred at night. Also got carpal tunnel pain and other pains from every injury I ever had. I agree that you are reducing pred too quickly. PMR also affected the soles of my feet, causing me to worry about diabetes. All those pains are gone now. I have been on pred for almost two years, started at 15 mgs pred, and am now attempting reduction to 5 mgs for the third time.
There are probably quite a few people with hand and foot involvement and the the Leeds UK research group did a study which established that, yes, hands and feet problems can be part of PMR.
However - about 1 in 6 people with a PMR diagnosis have their dx revised at some stage and often it is to LORA, late onset RA, with polymyalgic onset. There are several autoimmune disorders that may cause PMR-type symptoms. It is perfectly fair of her to want to investigate her suspicions I think - though I really do appreciate your feelings.
I had major pain in upper arms below shoulders (both sides),soreness/stiffness in both hips and both wrists. My sed rates were not elevated much but within twenty-four hours of taking 15 mg of prednisone my symptoms were completely gone,thus the diagnosis. My GP seemed content with the diagnosis and I was happy to have my life back (sort of).
I have since reduced the prednisone to 12.5 mg daily and am doing alright.
I have been concerned about RA but the GP doesn't think so.
Where I live it is next to impossible to see a rheumatologist unless you are just about dead so I have to hope for the best.
I have some questions for you about the split dose you mention.
Did your Doctor direct this method for you ?
Was it done to allieviate break through pain/stiffness when it came close to time for the next dose ?
When you reduce how would you do it ?
Do you take the same dose at both times.
I am curious as my Dr is not much help. I don't have much faith in Dr but have no alternative so must remain in that office.
I have a fair bit of stiffness just prior to the time of taking my prednisone and have considered starting the split dose . Any advice is welcome. Thanks
Per my Dr., a dose no matter what level of MG is only good for a 12 hour period.
I currently take 9MG in the AM and 4MG in the PM
As directed by the Dr.
I’m to reduce 1 MG per week.
So for instance if I reduce the PM dose down to 3 MG and start waking up mornings feeling stiffness, I will need to go back to the 4 Same scinerio for day dosage. The goal is to be completely off of prednisone whereas I was told long term use can cause other problems and complications. Hope this helps.
The GP never told me that the prednisone was only good for a 12 hour period ; instead I was led to believe that it was good for 24 hours! talk about being ill-informed.
Now I only have more questions! I hope you don't mind.........
I am taking 12.5 mg daily. Do you think I should take 7.5 mg in the am(since I am busiest during the day) and then 5 mg in the evening ?
Also do you have any difficulty sleeping because of the prednisone ?
Do you get something similar to hot flashes since being on the prednisone ?
No - your GP was correct, the antiinflammatory effect of prednisolone/prednisolone lasts between 12 and 36 hours, depending on the person. That is why they are used in PMR so once daily dosing without a risk of overlaps is possible. Obviously in some people it only lasts about 12 hours but in others the effect lasts long enough for them to take double the dose or so on alternate days. Hydrocortisone only lasts a few hours, dexamethasone lasts up to 48 hours but because it is in the body all the time it can cause worse side effects because the body gets no rest from it.
It is something you should try IF you are finding a return of symptoms within the day. The majority of patients are able to take their dose once a day: as long as they are taking the right dose it deals with the entire inflammatory effect created each morning at 4.30am and no more is required until the next day and next lot of cytokines. You need enough to do that but that single dose is generally enough to clear out the inflammation and it works best taken all at once because it achieves a higher blood level. Some find it works best taking the single dose early in the morning, as soon after 4.30am as possible, then settling down for another couple of hours by which time it will have started to work - and had less to clear up than leaving it until later in the morning. Others take it late evening as they go to bed - and the inflammation never gets to get a hold. There is also a form of pred you take at 10pm, it is released at 2am and is at its peak at 4am, before the cytokines are shed in the body. But if it doesn't last 24 hours - try splitting but that is the only time it is recommended. If you have GCA it is not recommended at all as it reduces the antiinflammatory effect on the big batch of cytokines.
Whether it affects your sleep or not depends on the person - some can take it before bed and it makes no difference. Others can take it as early as they like in the morning and it still affects their sleep even though all the pred has left the body and only the effect is still lasting. As with so much of PMR - everyone is a bit different.
Hi Daniel. I've come down from 20mg to 12mg/day since middle of august, which is very fast I know. I am searching for my lowest level before a flare and I think I may have found it now. As I said above, My doctors are trying to create a flare in my hands to a certain extent to do further tests! My left hand is better than yesterday, but is still swollen and stiff so I may have found my lowest level, as it is rare for it to swell and is always much improved the next day......until now!
Hi. Thanks for that. I think I may have found my lowest level for the time being. Once the medics have carried out their further tests, I will return to the last level I was comfortable at for a while.
Hi Scotth. Thanks for the reply. I am not convinced it is anything but PMR tbh. This is the first swelling I have had with my joints and they are not hot or painful really. Just weak and stiff with some discomfort on certain movements. Thanks for the reply and good luck with the fight!
Hi Blockhead. I have to work every day with my hands too and understand your frustration. It may be Carpal Tunnel syndrome as you seem to be getting numbness and carpal tunnel is associated with numbness and tingling I think, but tbh...... it's probably the PMR! I don't get any numbness or tingling and different fingers are affected at different times. Good luck getting to the bottom of it!
EileenH is exactly right. As for splitting the dose of prednisone, I figured out after she had mentioned that in a long ago post, what worked for me by trial and error. I take the smaller dose at night, usually half what I take during the day but the extra .5 mg as I reduce I take in the morning. So, for example, at 6.5 mg daily, I take half at night (the slow-release form Rayos is brand name in U.S.) i.e. 3mg at 10pm at night and then 3.5 mg prednisone in morning. That works well for me. Rayos is very expensive for my insurance company ($9,000 for a one month supply) so I felt bad about that and tried to go off it but a flare started up so I had to go back to the above routine - it works for me.