Approximately 7 weeks ago I began taking 15mgs of Prednisone. It had an almost immediate beneficiary effect on my PMR. Although still left with a little pain , it was so much better. After four weeks GP told me to reduce dose to 12.5 mgs and most of the pain returned. I stuck it out for 10 days, hoping I'd get used to new dose. I didn't, and GO advised I return to 15mgs. However, after a further 10-14 days on original dose of 15 mgs, I am still in shocking pain, and have the same symptoms I did before treatment. It seems now that the 15mgs dose which worked for me initially, doesn't do it now. It's almost like things have been knocked off kilter. Is that even possible? What I'd like to know. Is if it would be ok to increase my dosage to say 17.5 mgs ( as I have some 2.5 mg pills I can use), as it's the werkend and I won't be able to see GP until Tuesday? Will I be doing any harm by this action? And finally, is the GP likely to get 'shirty' about my actions? I'd be very grateful for any input. Many thanks.
Prednisone Dosage: Approximately 7 weeks ago I... - PMRGCAuk
Prednisone Dosage
My GP trialled me at 20mg, but I was only there for 3 days. After the miracle he agreed I should stay on pred but at 15mg. Over the next 3 weeks my symptoms crept back, not to the awful pre-pred levels, but definitely increasing. I went back to GP who said this indicated I did not have PMR and yes he got a bit ‘shirty’, but I got shirtier 😂😂 He flung up his arms and said ‘Do what you want!’ I did 😁 I went back to 20 for a month and felt better. Had he known sufficient about PMR, he might have said try 17.5. I doubt I was much below the required dose at 15 as the symptoms crept back. And I didn’t know better at that time. After that I came down through 17.5, 16, 15.
My advice would be to add an extra 5mg to today’s dose, and continue at 20 for a few days then re-evaluate. As to whether your GP gets shirty? No idea! But you could always thrust the guidelines under his nose (starting dose 12.5-25mg) and let him know that the ‘wisdom’ is to drop by no more than 10% at any time. At 15 you may have achieved that 1.5 drop to 13.5. But GP made you drop too much. His fault!!!
I'd try the 20mg for three days like Soraya suggests , the reduction probably did inflame you again especially as you waited ten days before increasing again , your body needs time to control the inflammation again. Then you back to 15 mg .
Arrange another GP appointment as soon as you can this week to explain what you did , hopefully by then you will be able to say you have had a positive response to the increase.
As it's clearly PMR based on the reaction the GP has enough confirmation from your symptoms now to be confident with their diagnosis.
It's not wise until your body has dealt with the inflammation to start to start tapering in weeks. Having a month to 6 weeks on your initial dose to let the body balance before tapering is the best way to stop a rebound flare in the beginning.
Only when you feel you have control of the pain and symptoms and rebalanced body should you first begin to taper or start each new step down on steroids tapering.
Then the slow tapering methods recommended on here work more successfully.
It's probably best to discuss this with your GP now by printing off the tapering options that work for sufferers here ( you can find a link via Dorset Lady or PMR Pro) and politely telling him this is the course of treatment you would prefer to do. The GP needs to know they are now working as part of team against PMR , you are both equally in control of managing your condition. It's saves time and stress later when dealing with appointments.
If you haven't started it yet get a prescription on repeat for Vitamin D and Calcium to maintain your bone health.
Also take a multivitamin and mineral each day to boost your bodies ability to repair itself .
Take any supplements mid meal at breakfast as this helps maximum absorption as the supplements are digested slowly with the food.
Good luck and I'm sure things will improve soon if you take it slow with GP help.
You'll both win the PMR race by acting like a tortoise not a hare.
Thank you Blearyeyed and Soraya, I will do as you suggest. Although a diagnosis for PMR is new to me, I am no stranger to taking a great deal of responsibility for my treatment for a long-term condition. I also have an underactive thyroid and have really run the gamut of treatment (in)options. I currently have to purchase my medication myself from a pharmaceutical company in the US, because I don't get on with the only one offered to me by my GP. My doctor is pleasant enough and seems to subscribe to working in partnership with the patient on the face if it. However, it can be a lonely route if your GP is not completely au fait with your choices. I do feel cut adrift at times.
Because of my previous experiences, I am cautious and I do feel a bit tired of it all. I suppose I just don't feel as confident with the prednisone, as I know so little about it. AND I suppose I'm thinking, he, in turn will be thinking," here we go again!" I certainly do!
Preaching to the choir , sick and tired of being sick and tired. And it's gets really exhausting constantly having to check things and be your own advocate .
And I hear you about the GP working with you up to a point , but I think I might be tempted to find a new one with more thyroid and PMR experience , recommended locally if you are having to buy drugs rather than get them prescribed after they are proved to work.
When the doctors care more about prescribing the least costly option over seeing that it doesn't work on your symptoms it's worth giving them the boot.
You wouldn't keep going back to a restaurant with bad food and bad service.
Let us know how you get on x
Thank you for this Bleary eyed. I just don't know how I'd go about identifying a new GP with PMR & Thyroid expertise, do you?
You can look up GP services via your local NHS website.
Lists of GPs , Specialists and Consultants often include their specialist fields in the added information to help both doctors and patients assess whom they would be better seeing.
If you have a local support group for Thyroid or PMR they might be able to let you know who other users attend and recommend themselves.
If not , if you write a post on the forum here , and on the Thyroid forum asking for anybody with experience in your area to recommend a good local GP for treating PMR or Thyroid or both you would appreciate the information so that you can find a more appropriate Primary Care Giver.
I will look out for it xx
Unfortunately for you the starting dose of 15mg wasn’t quite enough, and although it’s the most common starting point, it is the lowest (of course neither patient nor doctor wants more than is necessary) and although it may seem to work initially - it doesn’t always! As others have said try 20g for a few days, then report back to GP. If he gets ‘shirty’ then so be it, if he’s got anything about him he shouldn’t!
Then next time around try slightly smaller steps (recommended no more than 10% of current dose) - so ask for 1mg tablets.
You must also remember you have a serious long term condition which needs managing - your PMR is not cured!
Have a look at this for extra info-
Thank you DorsetLady. That makes sense.
Don't know your GP so it's difficult to say if they will be shirty - on balance, probably! OTOH - you can try more to see if it helps and not tell him if it doesn't and you do have a relationship with them already.
Here are the guidelines Soraya mentioned (see Rec 3)
rheumatology.org/Portals/0/...
and this is one of the slower reduction approaches:
healthunlocked.com/pmrgcauk...
My concern would that maybe you have tipped over to a more GCA-type level of disease activity although you wouldn't be the first to find that a precipitate reduction from a barely enough dose let it all back out to play and then it was difficult to get under control again. No-one knows why - but it happens.
I assume you haven't changed your thyroid medication dose? How do you monitor it? Pred will suppress the TSH levels so if you use them, it may appear from labs that things are fine but really you need a bit more thyroxine of whatever sort you use.
I was so relieved to read this as it was almost exactly what happened to me. I went up to 17.5 but wondered if 20 would have been better as still quite sore. Is it best to soldier on if it is just about manageable? Later I'll definitely try Dorset Lady's taper. SO grateful for all this help.
Others will say, more eloquently and educated on this subject than I, why be only just managing when you're taking steroids with all the side effects. If you're going to be taking them (and you are) then at least find a dose where you are feeling more well and are managing.
Bon courage x
I am now on third day if 20mgs dose of Prednisone. Although the pain has eased somewhat, it's still there - hasn't gone completely. I plan to go to GP tomorrow and discuss. Thanks to all for comments.
I have just had a phone conversation with another GP from the practice as mine is off sick. I tolx him I hax increased my prednisone disd to 20 mgs because I was in severd pain. All that he would say is , "You need to get below 7mgs prednisone asap to avoid side effects, like moon face, buffalo hump, bruising etc!" Hd was unhelpful sbout what I need to do next, other than this. When I asked if I should make an appointment with my own doctor he said yes, 'asap!'
I have tried to make said appointment, but first date I am given is 8th July! I will try again on Friday for an emergency app, but I'm finding it diffcult to get past reception!
I am seeing an improvement in pain on the higher dosage, although not pain free. Please can someone advise me what to do next. For example, how long to stay with 20 mgs? How and When to start a reduction, etc?
Many thanks
What a plonker - does he tell RA patients they need to get off methotrexate in case it causes liver or lung damage?
Don't really know what to say - have you plenty of pred? It sounds as if this may be a real flare in which case you are back to the start to some extent. Have you ever had a rheumy?
Basically though, you need to get to as low a level of pain as you can before tapering. If you feel pretty good after a week at 20mg then you could try a drop to 15mg and see if it is still enough to maintain and stay there until you see your doctor, but a month is a fair time.
Thank you for this PMRpro. I do not have a rheumatologist. Despite regular calls, I have been waiting for an appointment to the local Muscoskeletal (MSK) Parnership for OA in my hip for 8 months, and still waiting! So it's unlikely I'd get an appt with a rheumy this side of death!
I have now been able to get an appt with my GP on Friday. Will see what that brings. I am feeling so overwhelmed with all of this.
I'm not surprised you feel like that. I'd be able to see a rheumy quickly I think - but for physio there is a year wait just for the assessment appointment!! This isn't the NHS though. So since the Pain Clinic is excellent and easier to get in to, I'm hanging on to them!
Where are you?
I am in Eastbourne, East Sussex
Good Morning, An Update.
I have seen GP this morning. He suggests I continue taking 20 mgs prednisone for a further two weeks and begin to reduce to 15mgs. He says if this dose sees a return of symptoms, I will need to go back to 20 before reducing by 1mg doses. I have to say, that I have felt really unwell with all the symptoms returning and feared that I wouldn't see an improvement even on the higher dose of 20mgs, BUT, I just suddenly started to feel better at about 8pm last night. That was after 4-5 days of the increased dose. It was like someone flicked a switch sonewhere! It's that dramatic! I still have pain, but I can cope as it is.
Many Thanks for the support and guidance.
That's really good. I would convince Dr to only reduce by 1mg after a few weeks as you symptoms came back with a vengeance. Thanks for update.
I wouldn't be dropping to 15mg in one go though!
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