Having been on this PMR road for almost 3 years, I have spent lots of time reading all of the helpful posts on this Forum and have received and taken some very useful advice.
Initially, I thought I might be the lucky one to say goodbye to my "friends" on here after 2 years, not so!!!! and I will not be surprised if I am still here for another 3 years.
I have had permanent pain in my right hand from the start, and in spite a lot of investigation by GP and Rheumy, the pain persists, I have assumed this is not a Flare?
Interestingly, whilst recently in Australia, I asked a Pharmacist if he had anything he could give me to ease the pain, he suggested mixing Deep Heat and Voltarol together and rubbing that into the hand, although it has not stopped the pain completely, it has reduced the area of pain to the region of my thumb - worth a try fellow hand pain sufferers.
I wake up most days with pain in the left side of my neck that goes away after a couple of hours activity - is this a Flare?
I often wake up with pain in my left hip that similarly goes away after some exercise - is this a Flare?
When I have these pains in neck and hip that go away within a few hours but keeps recurring daily, does it warrant increasing my Pred dose, currently 4mg, or do I just stick with it as I am inclined to do?
I have a worry/feeling that if I increased my Pred dose every time I get some pain I will be back to where I started 3 years ago, 20mg per day, and I really do not want to do that.
Hence my question
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Golf-1
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My view is a flare [if not treated ] generally increases as the days/weeks go by. Yours sounds as if it’s your PMR grumbling until your Pred gets into the system and settles it down. .. or just the normal morning aches of life.
As for hand, if that doesn’t seem to alter no matter what dose of Pred you are on, I’d say not PMR as such.. has carpel tunnel syndrome [CTS] been considered, and dismissed?
Thank you DL, Carpel Tunnel Syndrome ruled out by Rheumy after Xray and Ultra Scan.
The technician that did the Ultra Scan said he could see what was causing the pain but would not tell me what it was, I was watching his screen and could see red areas showing between the bones just below the first knuckle of the fingers. He took screenshots of it to send to Rheumy.
I have always taken Pred with breakfast at about 8 o'clock
Fingers... arthritis maybe? especially if gel helped a little.
Maybe try taking Pred earlier if you wake for comfort break, then back to sleep whilst it gets to work... might be worth trying for a week to see if any difference.
Thanks DL, I have often read of people waking in the middle of the night to take their Pred. I do rather enjoy my sleep so have been reluctant to try it myself. Perhaps I should give it a go for a week and see if it helps.
I normally take Pred, Amlodipine & Omeprazole at the same time every day, plus Alendronic Acid on Sundays, Folic Acid on Tuesdays and Thursdays plus Methotrexate on Wednesday, all at the same time with breakfast each day.
If I try Pred at say 4 o'clock 🥱, is it ok to take the rest with Breakfast?
That is the theory; there is really no way of me being sure that MTX does help reduce Pred for me, particularly at the low dose of 4mg that I have tapered down to about 4 times now and have been on since December.
Due to Flares, I have had to go back up to around 10mg and taper down again.
My original Rheumatologist started me on 15mg of MTX, after a year he increased it to 17.5mg last August and then immediately retired !! my new Rheumy raised my MTX to 20mg last October, I had blood tests yesterday and a follow up appointment with him in a few weeks' time to check my progress.
I would say that I have had no apparent side effects from taking MTX.
I'm interested in your drugs, I'm a retired Pharmacist.
I think you should take your Pred as early as you can manage without setting alarms and disrupting your sleep pattern which in older folk can be a problem.
Omeprazole and other PPI's are on a list of drugs not recommended to be taken with MTX on along term basis. Do you need it?
I am curious as to why you take folic acid the day before the MTX as well as the day after? Folic acid decreases the effectiveness of MTX which is why it isn't given on the same day. There is a theory that if given 48 hours before MTX it can reduce gastro-intestinal side effects. The usual NHS guidelines are 1mg Folic acid daily or 5mg once a week and in both cases avoiding the day of MTX dosing. I'd be really interested to learn more.
You can take the Amlodipine in the morning or at night. Latest studies show it makes no difference to your BP control.
I'm now on 15mg MTX because I can't reduce below 2.5mg Pred and despite resisting it for 7 years, I have to say i feel great on it! Time will tell.
I'm blowed if I would take MTX if I was happily on 2.5mg pred!! But if you feel OK on it it may be worth the try I suppose.
What I found interesting recently at a research seminar was queries from non-UK based rheumies as to why a trial was using oral MTX to assess whether it really made a difference in PMR as they all said that injectable MTX was far superior to oral administration. Maybe that is the problem in the UK ...
A lot of patients actually need 6x5mg folic acid to reduce the adverse effects - so are taking it the day before and the day after the MTX. Even 6x5mg didn't stop me developing overwhelming fatigue - I could barely put one foot in front of the other.
But I can never stay happy at 2.5mg and if I'm honest I've always been on the fringes of being under-dosed from 4.5mg downwards. I've been under so much pressure from 3 different Rheumies over the past 7 years to "try" MTX, after yet another failure I thought "what the hell", it might even help my OA. I've not been taking MTX for 2 weeks as I have a nasty virus infection and my hands are so sore, yet had improved. Side effects from drugs are always a problem for some patients and it does present challenges. It's often a balancing act between finding a dose that works yet minimises side effects. The use of Folic acid with MTX is "off-label" and I have seen some very weird and wonderful regimes over the years and eventually stopped querying the scripts!
Ah - but even so, I personally would prefer 1x5mg pred to less pred and MTX on top. Even with TCZ, I can't get under 7mg pred and MTX has no guarantees either.
TBH, I think I’d prefer 4.5mg or 5mg of Pred rather than add in MTX - but I guess you can but try - you may be one of the fortunate patients where it works - hope so.
Even if it doesn’t, then at least you will have tried, and have the proof for all to see.
Exactly!! Plus, I wouldn't be surprised if I'm a PMR lifer. My Dad was. As I'm still only 66 and have been on Pred since I was 59, and worse case scenario, I may be on it for another 15 years plus (God willing) that amounts to over 20 years of Pred. Currently my Dexa results are good but my cataracts are worsening. I also get tired of arguing and being labelled as a difficult patient! Time will tell and since I was deriving benefits what have I got to lose.......................
I have no medical training whatsoever and therefore tend to do as I am told by the "Professionals" I have a good relationship with my GP and Rheumatologist and am prepared to believe that they prescribe the medicines for me that I need.
At the outset of my PMR diagnosis March 2022, my GP prescribed Omeprazole alongside the Pred, as I understand it, to protect my stomach. At that time, I was not taking MTX, this was prescribed by my Rheumatologist 1 year later in March 2023, that was 15mg one day per week with 5mg Folic Acid 24 hours later.
I have been taking Prednisolone, Omeprazole and Alendronic Acid for 3 years and MTX for 2 years, does that constitute a "long term"? I am not sure which one you are referring too when you say, "do I need it", but either way I am afraid my answer is, I do not know.
Having had no side effects after 12 months of 15mg MTX with 5mg Folic Acid the day after, my Rheumatologist upped MTX to 17.5mg in August 2024, with 5mg Folic Acid the day before and the day after, I do not know why, I was on 7mg of Pred at the time.
In November 2024 I saw a new Rheumatologist and was on 5mg Pred. Again, as I had no side effects to 17.5mg, he suggested I go to 20mg of MTX and keep 5mg of Folic Acid the day before and day after.
I understand the purpose of the MTX is to help reduce my Prednisolone more quickly, I am currently stuck on 4mg (since December) and intend to stay at this level until the niggles in my neck and hip have gone away.
I have a Rheumatology appointment in a few weeks so will be interesting to see what is suggested for me next !!!! I will raise the question about conflict of MTX and Omeprazole
"I understand the purpose of the MTX is to help reduce my Prednisolone more quickly, I am currently stuck on 4mg (since December) and intend to stay at this level until the niggles in my neck and hip have gone away."
It MAY help reduce the pred - and it MAY be more quickly. But there are no guarantees. Sometimes all it does is reduce the likelihood of flares somehow but sometimes it does nothing.
A follow up question - I have been told to take the Alendronic Acid, that I take on Sundays; on its own at least 30 minutes before food or other medicines.
Any suggestions how I manage that if I am waking at 4 o'clock to take Pred?
It is only one day a week - take the pred later that day. You must take the AA on an empty stomach and remain upright for 30 mins so it is a bit difficult to get round that.
Surely there's a report of the ultra sound you can request a copy of? I always ask for copies of any scans after one of the many consultants I saw pre diagnosis early on when they were responding to many blood anomalies suggested I got a folder and requested them. Not so easy if you are not in the hospital though as GPs seem to find them harder to access. No idea why.
There is a report that I have seen, it hints at tendonitis, but no suggestion as to how to deal with the pain. The mix of Voltarol and Deep Heat has relieved it a bit, I will see what the rheumatologist suggests at next appointment.
All of those symptons I have experienced and more, sounds like arthritis to me, have yo had all the tests, exrays, MRI, catscans, initial symptonsvof PMR I understood to be stiffness, pain shoulders, girdle, hips on both sides of body, at least thatvs what my initial diagnosis over 8!yrs ago, so am skeptical when I read comments about pain in wrists, ankles, fingers etc still beingbPMR causing these symptons
And to ad, my rhuemy had told me of course more pred will mask and reduce pain, it s a painkiller, which of course we know it s for inflammation, which in turn does reduce pain in many cases, I have chronic pain in all the areas you mention, and more, been on 4 mgs since past April, and suffering with pain, tests have shown severe osteoarthritis, now headed for hip replacement on Feb 20th, so just thinking you maybvery well have some form of arthritis, but that diagnosis would come from rhuematologist
Only you can answer that - if 1mg more made a great difference to your QOL, then I would do it.
I'd say the persistent hand pain isn't a flare - and not impressed by the technician's diva act. The other stuff - maybe, maybe not. Sounds like something that hasn't been fully cleared out but you are on enough pred to stop it worsening.
Thank you PMRpro, I am going to try DL's suggestion of waking up to take Pred in the middle of the night, I guess that may be marginally better that the early morning pains -, I do like my sleep.
As for the hand, I do not think GP or Rheumy know what the problem really is, I think they are hoping it will just go away. I guess the only other option would be to cut it open and have a look - I will not be agreeing to that, so carrying on with the Voltarol/Deep Heat concoction.
There is another possibility other than waking up in the middle of the night to take pred. I too like my sleep after so many years of sleep disturbance in the earlier days and this method has been mentioned on the forum. I put my pred in an empty gastric resisitant capsule and take it when I go to bed. It is then absorbed past the stomach and in the gut so is in the blood at the time it is needed. Worth a try ?
I could not get your particular brand over here in UK, so have ordered size 0 from UK supplier, I measured a 1mg Pred tablet and it should fit inside,🤞🤞🤞🤞
As I read your story it sounded a lot like me! I have had PMR for 7 years and just recently started with pain in my thumb, right shoulder and hip that comes and goes. Just went to the Rheumatologist yesterday as my CPR readings were up. After checking me and she felt it might be some Osteoarthritis, she recommended putting Voltaren on my thumb, exercises and swimming and/or warm baths? I will try and see if that works. I do not usually take anything for the pain. Good luck with your journey. I am on Methotrexate.
Just a comment about swimming to relieve the pain.
I have just returned from visiting my son and daughter- in- law in Australia. Being their summer, I agreed to join them at 6.30 on several mornings, for a swim in the open-air sea water beach baths. Should be good for me and a healthy thing to do, I thought !!!
Firstly, the water was cold brrrr, secondly, it hurt my hand so not sure that swimming helps pain in hands
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Not another flare I hope?
Flare or not!?
Now I understand what a Flare is...! The Dragon is Back!
Is it?? A little flare or not?
is this a flare?
