I DIDNT KNOW YOU ALL EXISTED AND I DIDNT KNOW ANYTHING ABOUT PMR ! ITS QUITE A SHOCK AND A QUICK LEARNING CURVE , IT SEEMS LIKE THIS IS GOING TO BE AN ADVENTURE , IM MALE , 62 YEARS OLD , AND I THOUGHT I WASNT DOING TO BADLY FOR MY AGE , THEN WHAM ! IM HERE WITH YOU . IVE ALWAYS KEPT FIT BUT SEEMED TO HIT A FEW MUSCLE PROBLEMS AND ACHES THROUGH THIS YEAR , I PUT ALL THIS DOWN TO AGE BUT THE ACHES SEEMED TO CHANGE POSITION WHICH REALLY CONFUSED ME , THEN FOUND MY NECK AND SHOULDER WERE NOT WORKING WELL , WENT TO PHYSIO BUT WAS NOT FEELING GOOD , THE PHYSIO SUGGESTED THAT I VISIT THE DOCTOR WHO IMMEDIATELY SAID PMR BUT NEEDED TO CHECK BLOOD TESTS , SURE ENOUGH THEY WERE POSITIVE AND THE JOURNEY INTO STEROIDS BEGAN ON THE 8/11 / 19 . I READ THAT WITHIN DAYS OR HOURS I WOULD BE FEELING SO MUCH BETTER AND STEROIDS ARE MIRACLE WORKERS , WELL THATS NOT QUITE RIGHT IS IT ? IM ONE MONTH IN NOW AND DO FEEL LESS PAIN AND STIFFNESS BUT THEN THATS ONLY ON A GOOD DAY ISN`T IT , THE BAD ONES COME ALONG ASWELL .I WOULD LIKE TO ASK FOR ANY WORDS OF WISDOM THAT ARE OUT THERE , THE ONLY BENEFIT I CAN SEE SO FAR IS THAT IT SEEMS TO AFFECT YOUR THINKING ALSO AND SOMEHOW IVE BEGUN TO SLOW DOWN AND TAKE A FRESH LOOK AT LIFE AND I THINK THIS WILL HELP . . IM ON 15MG OF PRED WHICH HAVE REDUCED MY CRP TEST BUT MY ESR IS STILL RISING AFTER THREE TESTS , DOES ANYONE HAVE EXPERIENCE IN THIS AREA .
THANK YOU FOR READING MY FIRST MESSAGE ,
Written by
jura19
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If you still have symptoms and your ESR is rising it is a fairly sure sign you need a bit more pred: the international recommendations for the starting do are the lowest effective dose in the range 12.5 to 25mg/day. 15mg is quite low and as a male you are probably bigger than many of us - you may need more. Onlt fewer than 1 in 10 patients get the miracle response in a few hours, but it does happen!
However - maybe you haven't slowed down enough? Being on pred doesn't mean you can go back to normal life just yet! It isn't a cure, just a management strategy that needs some support.
Thank you for replying to me your advice is so appreciated , I think I will need a little more as I weigh a reasonable 14st ! Do you have any experience of the other drugs that are used for pmr , I read that in Poland they only use metatrixate ?
Possibly - but I'll bet there are a lot of patients who are just "little old patients with rheumaticks..."
NOTHING works as well as steroids. The other drugs may help reduce the pred dose - maybe. But on their own I find it difficult to believe they are very effective.
If you are getting bad days in between the good days then I would say you are probably trying to do too much on the good days. That’s a very common thing early days.
Have a read of this, it’s a bit daunting maybe on first read, but keep it to hand, and go back to it in a month or so - it will make more sense then (hopefully) -
Thank you so much for your advice , you are all extremely knowledgable in this pmr club and I really appreciate that you have taken the time to help me
Hello Jura - welcome to this club which, along with the rest of us, you didn’t want to join! You’ve had the wise words from DL and PMRPro - always take their advice! I was started on 15mg and it wasn’t enough for a miracle so it was upped to 20mg - that did the trick but it took about 3-4 weeks overall to get life back on track.
Now the hard part - I’ve (sort of) followed DL’s tapering plan and am down to 1.25mg/day - that’s taken three and a half years........ Don’t rush to try to get to zero or you could have a flare and be back to square one...
Thank you so much for replying it is valued , there seems to be plenty of advice to start on 20mg , I weigh in at a constant 14 st so perhaps it does take a little more . Did you suffer with good days and then washout days in your early months of treatment ?
I’m a stone heavier - don’t think that it’s a factor but could be wrong? I wouldn’t say I varied so much on a daily basis but there were some things that changed along the way, eg in the early weeks I’d come down in the morning and struggle to hold the kettle when filling it! I had the odd balance issue and managed to fall off a stepladder..... my advice would be to not attempt to overdo things, thinking that the Pred has everything under control. The main thing tho’ is not to try to rush to zero - it won’t work!
Welcome on board, 15mg does not seem much for start off, maybe ask to increase your preds ? I am myself tired in the day but come to life in an evening and clean my lounge every night before I go bed ! then I have a pretty good nights sleep until I get up in the morning and my PMR hits my muscles and joints. Are you taking your preds before breakfast ?? You will get very good advice on here better than a doctor dare I say !
Thankyou so much for replying to me it is much appreciated , very interesting what you say about the evenings being more energetic , I feel exactly the same .
Perhaps we are night owls ! I also get the munchies at night as don’t feel like much in the day perhaps my diabetes. I started at 60 mg , 6+ years ago as I had GCA very very bad and the PMR came after that. It took all this time to get down to 5mg then my doctor asked me to try 4mg, bad mistake on my part. I had to ask my friends on here if I was having a bad flare up, yes I was, and now back down to 6.5mg, slow process. So don’t rush things as all friends will tell you on here.
It can be quite a shock to get diagnosed with PMR. For me it wasn’t as I knew something was wrong for over 5 months, so actually it was a relief I could begin treatment. Besides the physical symptoms, it was the mental adjustments and emotions that were difficult to work through. I had just married, moved and retired at 55 when 18 days later painful symptoms emerged. I was angry at being cheated out of my dream retirement, I was fearful of prednisone, and sad this condition would be with me for years.
Once I accepted my fate and concentrated on where I could affect change (diet, exercise, rest), and realized I could not control disease activity, I did much better. I lost weight, became more active and the pred did its part in reducing the inflammation/pain. I’m in better shape than pre-PMR 2 years in.
As PMRPro mentioned, I suspect you are not on enough pred to address the inflammation. I started at 20mg and stayed on that dose for a month before tapering down. I had virtually no pain on that dose, and it was my goal to remain as pain free as possible as I tapered down my dose.
Some good info has already been shared. You will get good at listening to your body, and in turn it will help you along the way. When you do begin to taper your dose, GO DOWN SLOWLY.
A good doctor is also key....one that listens to you share how you are feeling, and addresses any concerns you have.
We are also here to listen and support you. We “get it” better than most who do not have a lived experience of PMR.
Thank you again , Right ive gone on the offensive after two really bad days that have taken me right back to the start . Good breakfast then upped my dose to 20mg ! Do you have any experience of perhaps taking 5mg at midnight then 15 mg with breakfast ? You are all so helpful , thank you again
There are people who do something similar - I personally don't as I effectively take all my dose at 2am as I use Lodotra, a delayed release form of prednisone. Post your question as a new thread - and you will get lots of answers.
In the beginning I wondered what was it that caused my body to attack itself. I strongly suspect a combination of “good stress/change” (marriage, buying/selling house, early retirement), along with a nasty upper respiratory infection right before the emergence of symptoms. But I’m the end (except for avoiding stress), it matters not as I cannot change the past, nor is definitive.
As mentioned previously, I tend to focus on areas of the condition and healing where I can make a difference in outcomes. I have no control with the how’s and why’s, the disease activity and so on. I can however control my diet, activity, rest, who I get support from and what I should avoid.
That’s where the folks on this forum are so helpful. The combined knowledge and experience of members is invaluable, not to mention their humour and resilience.
Welcome jura19. I’m just 2 months in so still feeling my way. All the advice given earlier is good advice. I think the hardest thing is accepting the fact that if you do too much, you’re going to feel it the next day! The next problem is knowing what’s too much! Listening to your body and resting when fatigued is a good idea as is staying on an anti-inflammatory diet and exercising as you are able. This is a wonderful forum and a huge support. You will find it a great resource.
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