Posted on behalf of dorothy89764 • about 16 hours ago
Hi There
I was diagnosed with PMR 3 years and 3mths ago.started on 20mg and over the 3 years reduced pred down to 1mg. Took some juggling. I stayed on 1 mg for appox 1 mth without pain. 16 weeks ago I took my last tablet (maybe). All was good for a few weeks but the mild to not mild muscle soreness has returned. I take Ibuprofen in the mornings and at night so I can sleep. The ibuprofen manages the pain, but it is still there just under the surface. Can this still be withdrawal from the pred? The soreness I experience is not as bad as when I was first diagnosed.
[Handbrake] ★3
Handbrake dorothy89764 • about 15 hours ago
Hi Dorothy,
I had a similar experience the first time I got to zero so started prednisolone at 1mg until pain disappeared then dropped to 1mg alternate days, then every 3days and so on until back to zero. If it is some PMR lurking in the background it is better to address it and Ibuprofen will not
dorothy89764 Handbrake • about 14 hours ago
Thank you very much for confirming what I thought I might need to do. I will follow your instructions and hopefully next time I may be able to stay off them. Did it work for you the second time around? I'm An Australian on assignment in Tonga and there is not a specialist here that I could have spoken to. Malo
Handbrake dorothy89764 • about 13 hours ago
Hi Dorothy, it's still early days but been off again for 12weeks. I am very mindful that the PMR can return at anytime so keeping a hold of some prednisolone is reassuring, I'm also introducing more alkaline foods in my diet and reducing acid drinks and foodstuffs. I Definately feel better for
I have also been experiencing the same thing. I have reduced to 2mg then 1mg every other day. Going to 1 mg in a coupe of weeks. Still have stiffness in neck and leg. Rumetagolist says that I'm over with pmr. Segmention rate at 4. Why is the hurting feeling still there then?
Hi Judy,
yes it's a tricky one getting things right between prednisolone withdrawal and PMR symptoms 🙈 If you are still having pain then perhaps the 1mg drop is to much for you...you could try just dropping to 1.5 instead of one. Also I found after going to see a Physio I had unknowingly changed my posture ...holding shoulders tense etc and balance wasn't the best it could be so I'm working on that! Got one of those wobble discs for balance and strengthening that core! It's brought me a long way 😀
On what grounds does your rheumy say you are over with PMR? There is no way he can judge that - there are no tests that show one way or the other. The ESR should remain low if you are on enough pred to manage the inflammation but top experts warn that it isn't reliable while the patient is still on any pred and in some people it doesn't rise again in the same way. It is all based on symptoms - and if you have symptoms it is a warning to slow down.
Many doctors will try to tell you that 1 or 2 mg isn't doing anything - they are wrong. There are more than a few patients who were doing well on even as little as 1mg but within a few months of stopping altogether it was back and needed a return to higher doses to get it under control. The side effects associated with 1mg are near enough zero so there is no hurry.
So helpful the chance we have to read the knowledgeable replies written by
EillenH. 😊😊😊🌸🌸🌸
I agree iellen32 that's the beauty of this sight, lots of people with experience to share 🤗
Finally someone to talk to that are in the same situation. Thanks for moving the messages Patty.
Thank you Eileen for clarifying this one. And thanks for bringing this up, Dorothy, Handbrake and others.
Am doing slower than dead slow as I wind down toward 1 mg. For a couple of weeks have been at 6 days of 2 and 1 day of 1. Have had a cold for 2 weeks, so have not continued the taper until I feel OK and not as fatigued, due to lack of sleep.
Your very welcome Dorothy,Hope you get sorted soon, 🤗
Kindest regards
Patty
Wise move Paula, hope your feeling better soon and manage to get that all important sleep, I still have days where I feel bushed and don't have a cold! Bring on the sunshine☀️
Thanks EileenH Rehumey was saying my sed rate was at 4 then it was gone. Sed rate started at 53 November of 2014
My sed rate is 4 - I definitely still have PMR! And it needs 11mg to manage it!
The sed rate remains low as long as there is no longterm inflammation present in the body (unless you are one of the 20% who don't show this response at all). Every morning the autoimmune disorder that causes the symptoms we call PMR causes inflammatory substances to be shed in the body - that is why we need a daily dose of pred, enough to combat the amount of them being made. As long as you have found the lowest dose that does that then the sed rate should remain low - the pred sorts out the inflammation quickly and little damage is done so the sed rate doesn't rise. At some point of a reduction you drop below that dose - if it is just a small amount it may take some weeks for the inflammation to build up to the level you notice again. That is why we say go slowly - reduce fast and you shoot past that end point, whether it is going in big steps or reducing every week or so. Then you have no idea where exactly the right dose is, have to go back and try again. To add to the confusion, the sed rate isn't reliable in all patients: sometimes it doesn't rise again after being on pred - noone knows why, it is just so.
So if you are lucky, yes it has gone. But the doctor can't tell by looking at your sed rate - if you are on pred it SHOULD be low and if it is rising you are possibly developing a flare although it is very non-specific and will rise with a cold or an injury so isn't very accurate.
My SED runs from 2 to 4 when I'm not having a flare. My original SED when I started GCA was 86 seven years ago. I developed PMR about 5 years ago. Now I'm at 12.5mg. pred, MTX and Actemra. I get labs and see my rhuemy each month. With 4 GCA flares (1 PMR) and now the addition of the Actemra I'm not sure how slowly to reduce now. One of my flares came at 1 mg pred and the others after I was off everything for a few months. I don't know how docs can know when we are over this.
Right at the beginning my GP told me that many patients keep a supply of 1 mg tablets on hand to deal with any stirrings of the disease. That seems eminently sensible to me - like keeping a tube of otc hydrocortisone ointment on hand for the occasional skin rash, and as the years go by you need it less and less, but its use when necessary fends off a full-blown flare-up and the need for further intervention.
Sensible advice Jean, there is still so much we don't know about this condition... but at least we can share personal experience and see patterns developing until further research is done.
HI There
Well I strated back on the presidone 1mg and it didn't touch the pain - I persisted for over a week and then uped the dosage. I'm now taking 5 - 6 mg a day and it is just dealing with the PMR systoms. I'm think I shouldn't have waited so long to start taking the predidone again. Buggar, back to where I was a year ago. I will wait until all the pain nicks off before I start a tapering process again. Round two - Lesson learnt, don't ignore PMR or it will come back with a vengence...
Absolutely! If there are signs it is there don't deny the nasty truth! Far better a dose that leaves you feeling able to live than not enough. You are on a low dose that won't actually do much harm and if you can get a bit lower all the better - but it won't be the end of the world. There are thousands, probably millions, on a dose of 5mg or so for life.
At least your getting on top of the pain Dorothy that's the main thing, you might find it easier to reduce this time once it's settled so fingers crossed for you. 🤗