I have had sciatica for three weeks and various different painkillers. I have been trying to reduce the steroids 6-5 this week because my rheumy insists the PMR has gone into remission but this morning I have developed painful hips and thighs. Yesterday I saw my GP re painkillers because the ones I have been on for the last week (for sciatica) didn't seem to be lasting long enough (I am back in pain before the time comes round to take the nest dose he has now put me on analgesic patches. I put one in position last night according to the instructions it will probably take till this evening to work. Meanwhile I am left with paracetamol. My question is am I having a flare and therefore should I increase steroids
I can only repeat my usual question in this situation: "Exactly HOW does the consultant KNOW the PMR has gone into remission?"
There is no test of any sort to show that anyone definitely has PMR - the diagnosis is made on the basis of symptoms and maybe a raised ESR that shows there is inflammation of some sort present somewhere in the body. That is a basic difference between PMR and fibromyalgia - no inflammation in fibro so pred doesn't do anything as there is no inflammation to combat. There is no test for the underlying autoimmune disorder and they don't do any imaging of arteries to see if there is still any residual inflammation - darn it, they don't even do THAT to make the diagnosis in the first place, if they did they might find a lot more of us have GCA.
So that also means there is no test to say the PMR has gone away and that you will remain well even without pred. Most of the time we are "in remission" BECAUSE of the pred - take it away and we won't be in our drug-induced remission any more.
I know a few people who have achieved zero pred or who are well on the way to it and all of them (and me if it comes to that) say the same thing: "We feel different". If I weren't still taking 3mg of pred, albeit reducing steadily, I would say I'm probably back where I was 10 years ago before PMR struck. But I DON'T know - I'm still taking pred. I'll tell you in a few months time if I make it to zero with no aches and pains. And I'm relieved to know my rheumy trained GP sees it in exactly the same way.
She said that back in June because all the blood tests were normal
That's what I'm saying: when you are on pred your blood tests SHOULD be normal, the pred is dealing with the inflammation as it happens and there is nothing to give abnormal results. That DOESN'T mean that the underlying autoimmune disorder has gone away - it means the pred is at least equal to combatting its effects because the pred has no effect on that, just on the symptoms being caused. Like in a cold, you use nose spray so you can breathe more easily maybe - doesn't mean the cold has gone away yet.
And in PMR, if the symptoms return after a drop and don't improve after a couple of weeks or even get worse it suggests the PMR is still active.
This is not the time to reduce your steroids. There is too much going on. You will need near your top dose of Prennisalone whatever that is.
I get the most awful pain in my lower back and down the nerve now and then and did so long before PMR...the godsend is, rubbing arnica in about 3 times a day...it really does help
Hi Eileen... That's interesting. My second lot if blood tests after starting prednisone, still showed inflammation, what does that mean? Mind you, every week I drop dosage I have 2-3 days of pain and stiffness before I adjust. :-/
It just means that there was a fair bit of inflammation there to get rid of in the first place - like putting some cream on sunburn, it isn't gone straight away, it takes time to fade.
It leads to disputes about the best way to go about things: do you give a high dose for a few weeks and really clobber the inflammation or do you give a lower dose which will take a bit longer to fully deal with the inflammation but the patient will have fewer side effects from the pred. Depends on the doctor, depends on the country as to which they choose.
The discomfort when you reduce is from steroid withdrawal - and the reduction scheme I suggest helps avoid that. For a few times I feel strange the day after each single trial of the lower dose - but not as much as pain or stiffness. Then that stops and I'm fine - in fact I then notice the days I took the old dose! No pleasing some people!
Wardy, the best advice I can give you is to DEMAND your doctor review your plan of care! If he insists he is right, fire him and find one that will listen to you and work with you! Stubborn, ignorant, know it all physicians......grrrrrrrr!
Well yes - but within the UK system that isn't always as easy done as said! However, it is a piece of advice I often give - in most cases in a GP practice ther is another partner who will listen. And if your GP will listen s/he may refer you to another consultant who may be better. But even going privately doesn't help if the consultant you see doesn't know much about PMR!