Addition to first post

[Bcol]

Hi again. Thought I should probably add that due to my OA I had a full knee replacement in 1999, lifespan of the joint, was only estimated to be 15 years and its still going well, fingers crossed it is going to remain happy. I also had bones in my left foot fused together about 8 years ago. So the onset of PMR was a bit of a shock as it hit pretty much every single joint in my body rather than just the grumpy ones I was used to.

[PMRpro Ambassador]

Just for information - you can edit your own posts and replies. Click on the More box to get a drop-down menu allowing edit and delete.

[Bcol in reply to PMRpro]

Didn't realise that, thank you

[PMRpro Ambassador in reply to Bcol]

Using this forum is a learning experience!!!!!

[Hildalew]

I don't know the right words for this but the thing about PMR is that it hits the muscles and other kinds of connecting tissue rather than the joints - which I think may be why lots of people have difficulty in getting a diagnosis - some medical practitioners seem to be unaware of this difference. When pred is successfully reducing the inflammation, sadly, you will still feel the grumpy joints and you may get messages from other joints if you 'over' use them - exercise/gardening etc.

[Bcol in reply to Hildalew]

Hi, yup thats certainly fits with what initially happened to me, hospital actually got it wrong but my doctors didn't. So things definitely improving at the moment, although struggling a little today. Just had blood tests again and doc ringing tomorrow. I think todays tests were more about about my Anemia levels which came up a tad low last time round, rather than a PMR test.

[Hildalew]

Caution alert. I've been on Pred for 21 months now and haven't had a PMR-related blood test since the very first one. (I have the good fortune not to have had a GP 'on my case' in all senses of that expression.)

From what I have read on this forum, when blood tests are done to assess the level of inflammation indicators, if the levels are lower than they were, or 'normal' some doctors (and even some rheumies who should know better) decide that the PMR is 'getting better' or, even, has been defeated and suggest reduction of Pred dose, or even stopping it altogether.

They do not conclude that the levels are showing as lower because the Pred is doing its job and without it or with an immediate lower dose the symptoms will return, quite possibly with a real vengeance.

In many a post from the really experienced people with PMR there is a statement about symptoms being the only measure of the PMR and the ultimately the only way to diagnose PMR.

I think I have read on here that some doctors/rheumies who do recognise this fact, ask the patient to stop taking Pred a day or two before the test. I think that is just sadism (albeit unwitting)

Of course, your picture is complicated by your OA but I just wanted to be sure you knew of the possible response from your doctor.

[Bcol in reply to Hildalew]

Hi Hildalew. Thanks for all that. The way things are at the moment, I am going to ask!! that I stay on my present dosage for at least another week, as things are not settled down yet and I don't want to risk anything just yet. Doc seemed pretty clued in when we spoke last week, so hopefully I won't have to get too assertive.

[Hildalew in reply to Bcol]

How long have you been on the present dose? If it's been a while, you may even want to ask if you should up it a little?

[Bcol in reply to Hildalew]

I was started on 13mg by first doctor, which was never going to work, after a few days and new blood test result, present doc upped it to 30mg for five days, on day four of 25mg now. I am contemplating asking doc to put it back up to 30mg for another couple of weeks or whatever time is neccessary. How does that sound to you?

[Hildalew in reply to Bcol]

I am hesitant to 'advise' on quantities etc - but if you haven't yet felt as well on the lower dose as you did on the higher dose, I think it is worth asking. From what I've read on posts on here, only five days on 30 may have been a bit short but it could also be that more than 4 days is needed for the 25mg to settle down.

I was started on 20mg for 'a month' but as my next appointment with the rheumy was more than 28 days later, I managed to get some more and make the 'test' period a bit longer. It's difficult to tell from my notes when it was that things settled down in Pred terms - but then I didn't really know what was 'normal' in these circumstances. There are lots of of comments about 'old' joint pain being more persistent (one broken heel, one knee damaged in a fall) I deal with that now by cutting down my sugar intake. Doesn't always work! but I reckon I could take a standard painkiller if I wanted to - but I try to keep my intake of medications to the minimum possible.

And lots of comments about brain fog, 'hyper' fizzy feelings, constant snacking etc etc.

At my next visit the rheumy set out a very detailed prescription starting with, I think, 17.5mg - probably dropping then to 15, 12.5, 10, and then 1 mg a month till got to the date of the next appointment.

Shortly after that appointment I found this Forum so I reduced all the steps by half (not the dose - just the step down)-

thank heavens for my pill-cutter-

and somehow managed to get enough supplies to see me through.

I was fine throughout this period. For a variety of accidental reasons - partly because the appointments with him were so far apart and he was not involved in my repeat prescriptions, the rheumy didn't know until the third appointment that I wasn't following the 1mg a month thing.

When he did find out, we had a reasoned conversation about it and he's dropped the subject. The pharmacist/GP practice appear to be happy to give me either the same quantity as the last prescription or less if I specifically ask for less.

I have been able to maintain a slow taper down to 6.5 at present - shortly to tiptoe again into 6mg territory. I have had quite a bit of stress very recently and haven't been ready to take that step. But it's not far off.

Sorry to have banged on but more experienced people on this Forum say -

a) PMR doesn't observe the calendar so a set '1mg a month' is not going to work

b) only you know how your body feels.

It is possible that, because of my anxiety NEVER to return to the full-bodied (literally!) PMR experience, I have stayed on a dose a bit longer than I needed to but there's no harm that I know of that comes from doing that.

Apologies again - this is a very ego-centric post. But I hope you find it useful.

[Bcol in reply to Hildalew]

No apologies needed, its all very interesting and informative and one of the things that comes out is that it can be a very personal disease! and what works for some won't work for others. Also the tapering down needs to be slow and gradual. I'll see what the doc comes up with tomorrow, he's been good so far ( always assuming its the same doc of course!!). Many thanks for all your support and help.

[PMRpro Ambassador in reply to Bcol]

25mg should be plenty - remember, what goes up must also come down again! Just be patient for the moment.