Changing dose

[aladymo]

I just got back from visiting my family out west. Feeling very sore. Am on 10 mg ( diagnosed 3 months ago) Pred, can I take 12.5 for 2 or 3 days ( kids and grandkids coming in today ❤️). Then revert back to 10 with no problems ? My rheumatologist wants me to cut back to 7.5 which I’m very hesitant to 😱. Your advice and knowledge much appreciated.

[HeronNS]

If you were only diagnosed three months ago I think it very likely you still need a slightly higher dose than 10 mg. How did you reduce from 15 to 12.5 to 10? Was it in 2.5 steps overnight. That can be very hard for the body to adjust to. Can you get some 1 mg tablets so you can taper in 1 mg steps?

Furthermore your doctor is in cloud cuckoo land if s/he thinks you should be dropping to 7.5 only 3 months after you were diagnosed. I managed that in six months and many have said they thought I was fast!

[Insight329 in reply to HeronNS]

Lol at cloud cuckoo land. First laugh of the day! Thank you!

[Insight329]

I agree with HeronNS. Check out this tapering schedule. Table 2

rcpe.ac.uk/journal/issue/jo...

[aladymo]

I was never on 15mg. Started on 10mg. He wants me at 7.5 - I want to try 12.5 for a couple of days.

[HeronNS in reply to aladymo]

Oh dear. In several years of reading this and the Patient forum I have only read of, I think, one person who responded well to 10 mg as the initial dose. Did you have a good response initially? If you continued to have more than a "niggle" of discomfort your initial dose was too low to clear out the existing inflammation completely, plus deal with the daily dose of new inflammation our immune system delivers to us every morning before we wake up. Many of us,myself included, found at 15 mg all our pains went away, including ones which weren't directly related to PMR, like osteoarthritis, although these add-ons tend to come back as the dose is tapered. Does your doctor understand that pred isn't a cure? All it's doing is keeping the symptoms at bay. The idea is to taper very slowly from an initial properly helpful dose to a lower dose which will continue to keep the inflammation in check and pain away until the disease goes into remission. Remission can take up to six years to occur, very few are lucky enough for it to happen in as little as two. There is nothing we can do to speed up that process, except living as healthy and stress free a life as we can. PMR came when it wanted and will leave when it wants.

Just to compare - I started at 15 mg in June 2015. By early in the new year I was tapering to 7 mg. By the end of a year on pred I was at 3 mg which my doctor was happy with (not many if any side effects). Two years later I'm at 2 mg, which is probably my "lowest effective dose" until PMR decides to leave. Every few weeks I tentatively poke the dragon and try 1.5, but not ready yet!

[aladymo in reply to HeronNS]

I definitely improved after starting pred. Never been pain free though. Maybe 70% better. I did speak to him about the low dosage and he said it was working fine. Crp was 186 now down to 1.45. Huge difference for sure. Pain is still there, he wanted me to go down to 7.5 for couple days and see how that felt then go back to 10 if it was not working. Here I am wanting to go to 12.5

[Soraya_PMR in reply to aladymo]

10mg to 7.5mg ‘for a couple of days and see how that felt’

I’ll tell you how that will feel....full of steroid withdrawal rheumatic type pain! You can’t tell from a ‘couple of days’. You CAN tell if you drop by 1mg and wait a fortnight/3 weeks, get through the SW and the see how the PMR feels about it.

Trying at 12.5 isn’t the crime of the century, but bear in mind it may feel so good after months at lower doses that you might want to stay there awhile! Start planning that GP discussion now

[HeronNS in reply to aladymo]

Seventy percent is, actually, a figure often mentioned as being the least improvement one should expect. In other words, if your initial dose doesn't achieve that then you need more, or the diagnosis is wrong. I'm going out on a limb here and suggesting that if you'd been given a higher initial dose you almost certainly would have done better than 70%. And as you are not improving, in fact feeling worse these days, it's no time for you to be reducing any more.

A sensible doctor will say, as thank goodness mine did, that we go by the symptoms. Blood tests are only a guide. If your inflammation markers are down it means pred is controlling inflammation, as it should. It doesn't mean you're ready for a lower dose if you still have symptoms. And I must reiterate, pred doesn't cure PMR. All it does is give us a quality of life while we wait for remission. If you are not getting the quality of life because your dose is too low and you are being asked to taper in large steps, then what's the point? You need what you need and symptoms really do override any blood test results.

[aladymo in reply to HeronNS]

I’ll discuss all this with rheumatologist. I hope he doesn’t dismiss me as a patient - took me months to get to see him.

[HeronNS in reply to aladymo]

How is you gp? Maybe you don't need the rheumatologist. I've never seen one. Mind you, I don't have any of what is cheerfully called "co-morbidities"!

[aladymo in reply to HeronNS]

Love my GP! I’ll see what she says.

[HeronNS in reply to aladymo]

Very good. Before you see her, arm yourself with some of the information you will glean from here, there will be some experts along at some point who can give you some really good advice, including references to the medical literature. The key things to remember are the good response to a moderate dose of pred, followed by a very cautious and slow taper to find a level where the symptoms are managed as well as they were at the beginning, or very close to that level. After time it will be possible to wean off pred completely, but the journey takes years, not months! I always approached my doctor with the idea that I'd be enlisting her to my side, asking her opinion about things rather than going in flourishing the facts from some paper or expert she likely had never heard of, and would have put her on the defensive. She's been very good, but my very best experience was with a locum last summer who herself has a chronic disease and totally empathized. It's hard for doctors who've been trained to cure people to really accept that sometimes the only real cure is time.

[aladymo in reply to HeronNS]

I agree. ( approach is the key -to all communication). Thanks HeronNS. Excellent advice.

[Chrob]

Seems a very low starting dose . I started on 15 and believe 20 in some cases is normal . Had a accident 5 weeks ago ( the pavement turned out to be a 4 foot drop ) so upped my dose by a couple for a few days no problems dropping. I was just happy that nothing was broken .

[aladymo]

Thank you

[PMRpro Ambassador]

Really can't add to what you've already been told - except to say that not only is he in cloud cuckoo land - the cuckoo is out of its tree as well!

As I've said elsewhere today: they know how to recognise PMR. they know it requires pred - but don't realise you need a decent dose and for as long as it takes. And are perfectly happy to ignore the recommendations of the top experts who have looked at a lot of studies and have a lot of pooled experience. They have raised the recommended starting dose range - and, anecdotally, people who start that bit higher do better later. I also read that in a paper recently - but have no idea where now!

Like the other lady who started on 10mg - if you start at a very low dose (and 10mg is a very low dose) then you probably haven't much leeway to reduce in the early days. Most people would have taken 3 months to get from the starting dose to 10mg. having had a good clear out of the inflammation in the meantime. Just because the markers are low doesn't mean it is all healed, symptoms are always king.

[Oldman-1]

Good Morning alady, My opinion would be, it all depends on the severity you are experiencing. If you woke up one morning feeling like you had been in a RTA, found it near immpossible to move, then somehow managed to visit a GP, that is as bad as it gets.

Realistically, a good Consultant would be the order of the day. Reading your situation I `m minded to say you have been started on a low dose which really is of little use. Normally, the issue is hit hard with a higher dose then reduced by 1mg a month. Variations beyond that do have a record of effecting blood pressure.

[Louisa1840]

In my opinion you have come down to 10mg very quickly as you were only diagnosed 3 months ago! I have had PMR for over a year and am still struggling to get below 10 mg.

I think your rheumy (I don't have one - just see my G.P who lets me work out my own dose which I am happy to do with the help of this forum).

You can most certainly go back up to 12 .5 for as long as you need to. Remember it is not a race to taper, the inflammation caused by the PMR can do damage to your body and it is far better to let the pred treat the inflammation.

You need to find the lowest dose of pred which treats your symptoms so that you stay comfortable. If this means you stay at 10 or thereabouts for as long as it takes - so be it. The PMR will leave your body when it's good and ready.

The pred is your friend not your enemy and at these comparatively low doses is not doing too much harm

If your rheumy doesn't support you in this approach, find another one.

[Maggiemudshark]

All of these comments and suggestions are close to what I have experienced regarding initial doses and tapering methods. I was at 40 Mgs upon diagnosis for two days then went to 30 for a week then 25 for 2 weeks then twenty for two weeks then 15 for about four weeks or a bit more then I started to taper by 1 mg using DSNS am now at 11/12 and tapering. I was diagnosed Nov 8, 2017 .I will start to taper to 10 around the middle of July and so far have had no pain just some stiffness.