hello, this is my first time so please be patient. I'm worried to death about my hubby. He has just been diagnosed in January with PMR. On pred 15 mg at first, and he was greatly improved. But after three weeks they reduced the dose to 12.5 then another three weeks down to 10mg. He's now as bad as ever!! Can't sleep at night because of shoulder pain. Tried topical ointments but nothing seems to help. He is 57 and in full time work, but this is causing him problems when trying to do his job. Should he still be in pain like this? Is it normal and something he just has to put up with? The doc told him to take paracetamol if still in pain. Any help would be gratefully received. Thankyou
Hi Lynn, sorry to hear about hubby. I was diagnosed in November past and put on 20mg of pred for 9 weeks, then reduced down to 17.5 and six weeks later down to 15mg and I haven't received appt to see Rheumy yet. It looks as if the reduction plan is too quick and reduction maybe too big of increments to deal with the inflamation. I have no medical background but can only tell you about my experience. I am doing the very slow and stop which was suggested. It's my body and my pain and I will do my own reduction until I see Rheumy. Stay in touch and let us know how hubby is getting on. That's the one thing I do not want is the yo yo effect. Reducing too quickly by too much and then having to up the steroids. Paracetamol will do little or nothing for pain (in my experience) the only pain relief I got was from the preds. Good luck. Regards Pat
Thanks Pat. Yes my thoughts exactly that the reduction was too fast. Unfortunately we have to rely on the gp in the UK so feel at their mercy. He s due to go back soon so hopefully they will up his medication again. Thanks so much
Morning lynn.I would say the reduction plan was way way to fast, if it was me I would go back up to last dose he felt comfortable,& stay there still bloods have been done. You might have to be firm with your Dr.I am sure others will give you more advice. Good Luck.Dave.
yes lynn like everyone says he is going down too fast.dont worry too much if he goes back the higher dose and comes down verey slowly he will be ok it just takes time and patiance. i started on 20 mg 2 years back and i am now on 1 mg .
with only a very tiny bit of pain. but i will stay on 1 as long as it takes .i would rather stay on 1 for life. as long as it doesent go back to the pain i had at first. i was 18 month before i was diagnosed and was given pred after that so i am hopeing i have beaten this horrible illness.
The aim is to get the pred to keep the inflammation under control and in your hubby's case it is not. Obviously the doc is one who is of the reduce reduce reduce category and you have to shout and say I am in pain. Has your hubby had his ESR and CRP checked? In my case when I was asked to reduce too quickly mine shot up which proved to the doc there was a problem, although some people to not have increased blood counts, luckily I did. I think a lot of docs muddle PMR and rheumatoid arthritis up as regards pred. Pred is really the only thing that will help the pain although I find you can relieve the pain short term with warm showers and I use one of those things you put in the microwave to heat up and you can then put round your shoulders, but you do need enough pred to make life tolerable. Your hubby really needs to increase the pred up to where he last felt OK.
Not at all Lynn, only too willing to help if I can. The pain I suffered before diagnosis on a score out of ten being the worst I would say my pain was at 15 so I do understand. My gp works around my pain and listens to me and if I disagree I let her know. 8th January consultant at Endocrinology told me to reduce steroid from 20mg down to 15mg. I had appointment the following day with my gp and I told her I was not reducing preds by 5mg but by 2.5 and she went with it. So good luck and I hope things work out for hubby.
Tis I again lynn. there is not much point in takeing a nasty tablet if he is not getting any benenfit from the dose he is at.dont allways go for the saying :trust me imm a doctor: he will learn to go by what his body is tellig him.I have learnt over the last 12mhts to give Drs etc MY Opinion.Dont let them drive you in the ground, sorry about the rant but i just get Peed orf with these Drs.Good luck .Dave
Hi Lynn, as the others have said, your hubby's return of pain is definitely due to having reduced from his starting dose too soon. The fact that he is still working also means that he could need to stay on doses for a little longer than some, as if he is under stress it will take longer to get the inflammation under control and keep it under control at any particular dose.
Is he someone who had raised blood test markers of inflammation at diagnosis? If so, the tests (ESR and CRP) should have been repeated before each reduction and used as a guide along with how he felt.
How were his symptoms on the 12.5mg dose? If they were as good as at the 15mg dose, then he should return to 12.5 and see if he feels better within a few days. No use in adding Paracetamol if the steroid dose is obviously just too low for the time being.
Also, if he is able to take some time off work whilst the steroids get the inflammation back on track, that will help.
I do hope he feels better soon.
Hello Lynn, no he should not be in pain like this but then he should never have been asked to reduce prednisolone so quickly. Please look up the Bristol PMR plan. 15mgs for 6 weeks, 12.5 for 6 weeks, then 10mgs for anything up to a year. I was on 10mgs for 6 months! Then when he gets down to 10mgs adopt Eileen's very slow reduction plan whereby you only reduce by .5 and stay on each dose for 6 weeks.
once again a gp that is clueless to the PMR condition!
i agree with all the other replies. I would increase his dose back up to 15mgs and begin all over again but this time using the Bristol PMR plan. Some patients even find the 2.5 drops too much so from 15 -10 only reduce by 1mgs. Of course this method takes longer, but it's not how long that matters it's about taking a dose of pred that is large enough to control whatever amount of inflamation there is at any given time. In other words the preds must fit the inflamation and not the inflamation fitting the preds, because that simply will not work. All the best, christina
Hy Lynn,
Sorry to hear about your husband.
I started with 20 mgs when I was diagnosed with PMR on December 6, 2013 (after having had it for nearly 4 months). The pain went away completely and I have been reducing slowly and am at 6.5 at the moment. (15 months later) I have had no flares, i.e. pain, and my ESR is normal (not that the ESR is a perfect indicator, but it is what my Rheumy uses to determine whether the rate of reduction is appropriate). Although my rheumy wants me to reduce faster, she also tells me that I know my own body and should trust it.
I concur with the other comments. He has reduced too fast and needs to let the Dr know that he is in severe pain and that the PMR is not under control. Has he seen a rheumatologist?
Hi Lynn,
I diagnosed with PMR last March & am now down to 7mg of pred so I think it is true with most of us here a fast reduction will bring back the pain rapidly. Slow & easy usually does it. This is a great site with a lot of good information & sympathetic people so no worries everyone will be patient. Good luck & I think your husband needs to increase his pred. Once you get the proper dose things seem to really settle down. At least, that has been my experience.
I will join the others in saying the reduction was too great at this stage, as well as too fast.
When I went to a rhumatologist (after being diagnosed by my GP, because of concern about possible GCA), I had prepared some written information for him. I described my initial symptoms, a dated list of doses I'd been on, and my reaction at each level of medication.
I also included some quotes from Eileen's playbook- especially that the goal is not getting off prednisone, it is taking as little as possible that CONTROLS THE SYMPTOMS! Taking prednisone has potentially bad side effects, but chronic inflammation is also bad for your general health.
My rheumatologist's response was "I don't know where you are getting your information on the internet, but this is really good, it's exactly right."
The links in the message near the top of the list of posts will get you to many articles that are written for doctors. The one on the Bristol plan for reduction seems very appropriate here!
As Eileen and others have pointed out, the underlying disorder will last as long as it lasts- the prednisone does not cure it, it just stops the inflammation and resulting pain. If 15 mg relieves your husband's symptoms, and 10 mg does not, the underlying disorder is still there and causing inflammation. What is the rationale for reducing to an ineffective dose?
I don't know who tis managing your husband's care, but it is time for a firm chat or a change in doctors. Prednisone is THE proven treatment for PMR- not topical creams or other painkillers.
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
If you follow the link above you will get to a thread where the first post has a load of other links. The next to last link is to a paper written by experts for GPs to help them manage PMR better. Print it out and take it to your GP and insist they read it. On about p4 it has a reduction scheme to be used in PMR: 6 weeks at 15mg, 6 weeks at 12.5mg and then a year at 10mg.
Your husband has had his dose reduced far too quickly so that the PMR symptoms have flared up again - in fairness to your GP he knew he needed pred and what dose he needed, he just is using old recommendations for the reduction. Ask him to consider using this slower one - even slower, or at least in smaller steps of 1mg is even better but start with htis. If the first GP won't listen, try another. If none of the practice will listen and you don't have another local GP practice to try - tell them you want an urgent referral to a rheumatologist.
In PMR pred is the painkiller, nothing else will do the job whether it is topical or taken by mouth, paracetamol won't do anything. Proper use of the pred is the correct way to approach PMR.
You will find a lot of information in the other links I have given you - the final one is to the Scottish site and the final link on it is to a review paper by a Dr Mackie, one of the top PMR experts in England. If your GP won't listen to 4 of the top PMR people in those two papers - they need a lesson in humility!
Thank you so much for all these replies, you folk are amazing. It's good to speak to people who have experience in this. I agree with you all that he has been lowered far too quickly and by too much. I know they are trying to get the level down quickly because he has diabetes, but it's no good if he's still in pain. I am now going to show hubby all these replies from you lovely people and make him see he must go back to the doc. Thankyou all so much.
They will just cause more problems by yoyoing the dose - other people on the forums are on pred and have diabetes, Type 1 and Type 2 both. It makes controlling the blood sugars a bit more difficult but it can be done, especially by restricting the carbohydrates he eats, I know that isn't current thinking in the UK, but in the last year or so the American Diabetic Association has approved low carb diets for managing diabetes. Less carb = less insulin needed!
PMR needs the amount of pred it needs, you cannot force the reduction and you can't reduce if they haven't wiped out all the existing inflammation. If they won't let him have the dose that manages the symptoms properly then he might as well not take any at all - at present on 10mg he has the risk of all the side effects with none of the benefits. He may also do better reducing in steps of 1mg at a time - that way he may get lower than 15 at least - was he still OK at 12.5mg? If so, he may get lower than 12.5mg going in 1mg steps. Even 1/2mg can make a big difference.
I did not realize you had to convince your husband! Just the doctors. The doctors are likely to dismiss our anonymous opinions on an internet site. As Eileen suggests, giving the doctor a paper by a doctor or (what I did) cutting the relevant sections and pasting into an email (with reference to the article) provides more crediblility.
Followers of this site know that Eileen and Company have far more expertise on PMR than the average doctor, but doctors are going to put their faith in credentials.