I was diagnosed 3 1/2 years ago. Many ups and downs. I've now been told - PMR in remission. Inflamation and blood count almost normal. However, I still have quite bad pains ( shoulders/arms/wrists/hips). Thought Dr said PMR was in remission!! Has anyone else suffered like this?
I hear PMR can take a long time until the inflammation burns itself out. Blood tests are often not conclusive.......symptoms and pain are. It's tough and almost a daily challenge, because I do believe especially STRESS and certain foods can cause a flare.
On what grounds is the PMR being said to be in remission? If it is the blood tests and you are still on pred - of course they are normal! The pred induces remission of the symptoms - it doesn't mean the underlying autoimmune disorder is in remission.
And it is the symptoms that are important - the blood tests lag behind if the inflammation starts to creep back and in some people never develop again. If you have symptoms that are the same as your PMR was: if it looks like a duck, quacks like a duck and walks like a duck then it may well BE a duck.
Thank you! Answer made me laugh - I feel better already.
What comes AFTER PMR? - normal life!
You'd hope wouldn't you John! Trouble is - and I forgot to mention it to Constance before - is that we are somewhat older than pre-PMR. That alone brings changes and the lack of fitness that is an almost inevitable part of multiple years of PMR and medication doesn't help. But I am promised by people who have got there that about a year after finishing pred you DO feel you might be back to normal!!!
Hope springs eternal...
I live in hope otherwise I might well go under! I try to ignore the reminders I get especially after starting reduction. I have found you have to wait a week or so before things settle down and put up with the odd aches in the mornings, this was one reason I replied to Constance as I took advice from my GP who said Paracetamols where OK and help to overcome this transistion period.
Have you seen the very gradual reduction plan? That also reduces the discomfort at reduciton, some patients simply can't cope with even a 1mg reduction overnight without demonstrating steroid withdrawal pain.
Posts 4 and 5 on this thread:
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
explain both it and the thinking behind it.
This is a good one, Eileen!! :-)
I do hope so......I am still far off.....BUT getting better thanks to your guidance, education and support group of this forum.
Thanks for the input. I will mention Paracetamol to my GP....to have it handy when in need.
I did have odd aches this morning, after consuming beef last night for dinner. So far the 15 mg of Prednisone took care of the aching in right shoulder and lower back.
In the past I have become alarmed when symptoms return when reducing.Now I can see that there is a transition period where you have to put up with a certain amount of discomfort for a while.I am on Warfarin too but I believe I can take Paracetamol. So it takes about a week before the lower dose is tolerated. If I had known this I may have been taking 1mg by now instead of staying on 5mg.
It is worthwhile to remember the transition period.......I hope, I will when starting further reduction.
I have been very fourunate in that when I went from 15mg to 14mg - no problem - same with 14 to 13 and 13 down to 12 - just a few niggles, when I dropped to 11 I then took your advice about reducing over a longer period, I believe this helped greatly. Will be doing the step down to 10 (this is my next goal!) at a steady pace again using the 'method' Have got everything crossed!!
John, thanks for sharing your method. Did you reduce weekly by one? When the time comes to reduce, I will need to ask my GP for many 1 mg Prednisone tablets.
I just found out that Paracetamol is Tylenol here in the USA. I was not familiar with the name of the pain medication.
never know weather to click on reply to ,,, or just reply lol here goes anyway , i have lost "replys " before ............now i can only go on my experience constance , i too was diagnosed 2 years ago , and gradually weaned myself off prednisone and have been "clear of paqin since last august , BUT , my siatica and left side of lower back gives me hell at night , now i feel the prednisone must have been hideing that lol but its in my hands to fix that problem , i dred going to the physio , and i know its my fault from not continuing with the exercises to start with and its the inflomation that causes the pain , so its back to basics and watch what i eat and drink lol but im a believer in that anyway lol and i am tempted to sway off sometimes ... im sure my building up my imune system is the go , but i will be checking my blood every 3 months anyway , BUT again , lol im 85 years young , so im fighting against OLD BONES as well maybe check what you are eating good luck anyway
i forgot to mention , i only take a couple of PANAMAX some times , maybe at night , i find they could cause more trouble in the lineing of my tummy , ,, one question , are you any better after you move around , or worse ,
I was in a specialist rheuma clinic in Germany last year. When leaving, the Professor -Top Man - told me to reduce prednisolone 1/2 a tablet per month.
I was on 7 mg - in other words 14 months!! Prof said one had then less chance of a "flair". Hope this may help others.
That probably actually is a similar length of time to what I suggest in the reduction I mentioned above. It is possible to reduce 1mg per month steadily by using that reduction pattern - and it takes about a month to reduce that 1mg but you have less discomfort while doing it. However (and I mentioned this too) many doctors feel it is beneficial to stay at 5mg for anything up to 6 to 9 months before continuing down. Probably the most informed and thinking consultant I have come across in the UK takes this stance (he also ignores blood tests and goes by symptoms if they are there and the bloods are "normal"
. It seems to allow the adrenal set-up to catchup with the pred reduction - 5mg is just below the amount the body needs and makes naturally. It is so difficult to tell whether your pain is steroid withdrawal or the dose being too low for the current autoimmune activity - and reducing too fast means you don't notice the point at which symptoms start to return - it takes some time for the inflammation to get to a stage where it is causing symptoms and the blood tests lag behind as well.
Firstly can I say it was not my method but the one Eileen referred to in her link above. I run for 28 days at one dosage and then go into the reduction as laid down in 'the method' It seems to get more critical as you get to the max of 10% reduction mark. Reducing from 15 to 14 is less than 10%, but once your below 10mg it's more! It was explained to me as being a bit like target practice, if your way outside you can adjust in larger steps, but once you get close to the bull it a matter of fine tweaking. Some folks even cut tabs in half but this is not recommended as you can't be sure you have a true half mg. Cutting the 5mg tab is a bit easier but it's not always convenient to get the right total dosage. Sorry about the UK Paracetamol - been in the UK too long!!