Is anybody totally pain free with PMR

I've had PMR for two and a half years now. I managed to reduce to 2/3 alternate days and didn't feel too bad. I then had a sudden and quite severe flare last March . My usual lovely dr had retired by then and from March through to July a saw a couple of different drs who did not want to increase my pred and just kept giving me stronger and stronger pain killers. I took it upon myself to increase the press to 7mg but it didn't make any difference. I finally flipped and went to see a rheumatologist privately. He first of all felt it was important to get me pain free from my severe Osteoarthritis in my knees and drew lots of fluid off and gave me a steroid injection in both knees. Miraculous. Pain free , including PMR pains although the pred pains came back after a few days. Next visit he then gave me a massive steroid injection in my bum as he was hoping that that would put a stop to the flare, said he would see me in a month with a view to starting to reduce. It worked for two and a half weeks but then the pains started to return and I am now struggling once again with neck, shoulders and something new, sharp and horrible pains under my left shoulder blade and round my ribs. It becomes more bearable as the day wears on but is excruciating at night in bed and first thing in the morning. What I would like to know, sorry it's taken so long, is anyone ever totally pain free particularly in the mornings. Should I expect to have some pain. I am seeing my reuhmy tomorrow but would like a bit of feedback from you all if possible.

24 Replies

  • I think it's quite common to have some pain at the time furthest from taking pred dose, that is, just before taking the next dose. But if you're taking enough you should feel better within a couple of hours and generally speaking be unaware of pain most of the day. I do think many people believe they should be completely painfree but I've no idea how many of us achieve that blessed state!

  • Thanks for the quick reply. It's just that I've never been totally pain free whilst I was reducing but it was only first thing in the morning. Until this latest flare I have never struggled so much at night in bed. I'm just not sure whether I'm being a bit of a whimp! Or whether I should be totally pain free all the time. 🤔

  • ive had pmr 4 years. Most of that time I had varying degrees of pain.

    For several years, I struggled with pain from neck -shoulder area to lower back. attempts at relief included massage, acupuncture, narcotics, and chiropractic. After assuming it was pmr pain, I finally discovered It was ordinary (age 71) arthritis in spine, and began using celocoxib, which was miraculous pain relief.

    I recall PMRpro saying,( years ago, ) that not all pain we have is from PMR! Guess this is a clear example of the truth of that statement.

    good luck with your rheumy appt. keep us posted.

    Kind regards, Jerri

  • I was only painfree between 15 and 10 mg, when even pain caused by osteoarthritis went away. I feel if I can do all the things untreated PMR stopped me from doing, and as long as pain when moving after a period of inactivity is only momentary, then it's all good. It's the best balance I can achieve between feeling fabulous and avoiding some fairly serious pred side effects.

  • The inflammatory substances that actually cause the inflammation are shed in the body at about 4.30am. In the time before you take the pred and it becomes active - usually about 2 hours from taking it - they get to work creating trouble. So yes, pain in the morning is usual if you are not amongst the people for whom the antiinflammatory effect of pred lasts 24 hour or more, it can vary between 12 and 36 hours. Some people wake early, take their pred and then settle down for another couple of hours for it to work. Others split their dose so it carries over to the next morning.

    What time of the night does the pain start? There is another form of inflammatory arthritis which resembles PMR but has a different cause - and night time back pain is typical.

    Another possible cause of your new shoulder blade etc pain could be myofascial pain syndrome. It is due to the same inflammatory substances as PMR but they are concentrated in trigger points on either side of the spine, in the shoulder muscles, about rib level and in the low back where the baby's dimples are. They cause spasmed muscles and can irritate nearby nerves, leading to referred pain in the areas the nerves supply.

    All these things would respond to higher doses of pred, and to the injection. But as the dose level falls they can come back. In PMR the response you got at the starting dose of 15-20mg is what you are looking to maintain - and then you look for the lowest dose that gives you that.

  • First, so sorry you are in such pain that it is interfering with your sleep. is there any particular time of night when your pain gets worse. Are you stiff as well as in pain? I was just wondering if taking some Pred @4am, before the 6 am cytokine dump might help with nighttime pain.

    I'm at 9.5 now. I take the delayed release Pred at 10pm, go to sleep between 11-midnight, but wake without pain because the delayed release pills are in place before the cytokine dump.

    I do sometimes feel it in my legs at the end of the day, before dinner and again before taking my 10pm dose.

  • Never heard of delayed release press but will ask my rheumatologist tomorrow. Sounds good!

  • Thanks PMR-pro I value your advice. I have never been totally pain free all the time I was reducing but it was bearable. I wasn't sure whether I should be expecting to be pain free all the time, but you have cLarified for me. The pains usually start around ten or eleven p.m. and I have trouble sleeping but by about two or three in the morning are really bad, can't turn over in bed, have to roll out of bed and then try to reposition myself to turn over!! Great fun!! Not !!!

  • It MAY be because your pred simply isn't lasting long enough - but I would also ask the rheumy if they have considered spondyloarthropathy. It typically causes pain that is worse about 2-3am, earlier than PMR usually is.

    The optimal time to take pred for reducing morning pain and stiffness is 2am (established in a study). Then it is at its maximum by about 4am and the cytokines are released soon after. The delayed release pred mentioned is called Lodotra in Europe and Rayos in the USA. You take it at 10pm and it releases 4 hours later - and morning stiffness is minimised. I am on it and think it is brilliant. Unfortunately it is not available in the UK on the NHS and costs up to about £100 per month privately. In the USA some insurances cover it - but it is extremely expensive there, about $2000 per month. There are a couple of US contributors on here who are on it.

  • Sounds wonderful and will discuss it with him but can't afford £100 per month indefinitely!!! It's just reassuring to know that I seem to be going through all the things that everyone goes through. One imagines at ones darkest moments of cancer tumours and all sorts of horrid things when all these pains keep appearing all over ones body!!

    Many thanks for all the support.

  • I hasten to add - I don't pay for it! I live in Italy where it is on the health service...

  • I'm in the UK and take the gastro-coated pred with yoghurt at bedtime in an attempt to mimic the Lodotra that PMRpro is on! I think it takes 5 or 6 hours to be released, so I hope it will be around at the right time to combat the cytokines. These tablets only cost around 6p to the NHS, so my GP is happy to prescribe them. They are available in 5, 2.5 and 1mg. (The uncoated pred is about 3p a tablet!) It works for me, as I don't get the pains in the morning that I used to on the uncoated pred, which I took with breakfast.

    Some people split their dose of pred if it doesn't seem to be lasting 24 hours.

    Worth discussing with your rheumatologist?

  • Hi Rugger, I used to take enteric coated and now take Lodotra. I think if the Lodotra manufacturer felt that they could just mimic Lodotra using enteric coated with yogurt they may not have spent two billion dollars to launch Lodotra!!!

  • I'm sure that's so! I did say " an attempt to mimic....."! However, as I feel comfortable with the regime I've chosen, I'll carry on.

  • That sounds fine, carry on, if it works don't fix it. I must admit with Lodotra I did find reducing far easier but that may have just been luck.

  • So do I - in fact, I find it is very good altogether...

  • They are German - and you don't get enteric coated there. Plus they are very picky about how you take Lodotra - so it releases correctly. They're German... ;-)

  • Merkel will be pleased! Or should I say Merck..ell.

  • You can also get a coupon for the Rayos in US so it costs $10.00 per prescription.

  • Many thanks to all of you for your advice, suggestions and support, I really appreciate it. It's good to know we're not alone. Love to all.

  • I was just diagnosed with PMR and was put on Rayos (time release prednisone). I do hurt first thing in the morning but it let's up in about an hour. I'm about 90% pain free for most of the day. I've only been taking 10mg. for four days so I don't know if I'll have to adjust up. I was put on Rayos 15mg over six months ago but the side effects were horrible so I tried other methods which didn't work. Since the PMR diagnosis I had to go back on the steroids and hopefully will be able to stay on a smaller dose. The timed release Rayos when taken at night will kick in four hours after you take it. So that makes your mornings easier. I hope this helps you.

  • No - doesn't kick in after 4 hours, it is released in the stomach after 4 hours providing you have taken it within 3 hours of food or with a substantial snack. You take it at 10pm and it releases at 2am - then it takes another 2 hours to actually start to work. It is very important it be taken in this way - or it isn't absorbed properly.

  • Thank you. That is how I'm taking it and it is working for me. :)

  • I had "frozen shoulder"for 4 years. 10 years ago. Worse pain was at night, could not move my arms. I had no injury, but the physiotherapist called it rotator cuff injury

    Took painkillers, 5-6/day Tylenol3. Did not see the doctor, only the specialist in sport medicine.Good thing did not became an addict.My rheumatologist believes might have been PMR .This year my pain was everywhere, went to see the rheumatologist. He said before my biopsy, if I had GCA would have to be on 30-40mg prednison.

    My biopsy was negative, so started 10mg, and now I am on 4, tapering 1mg a month. On my own also taking MSM and devils claw.No painkiller like opoids or something strong, but at work I take 100mg Advil if I have some pain.Most days no need for pain killers. Hang in there, trust in your healing system, will get better. In May I had to get a walker, so I can get up from the toilet, my friends picked up my golf balls when we golfed, could not bend down.Since end of October I can do everything on my own but have to exercise to get the muscles back

You may also like...