Advice please from our experts

[Gunflash]

I am supposed to be coming to the end of my pred journey. I have been taking 1 mg for 6 weeks now but noticed about a month ago I was getting pains around the shoulder blades and in the bottom of the neck. After playing 9 holes of golf today the pains got a little worse and I was suffering a bit after the full 18 holes.

I am still in some pain now after an hour of sitting down. My Rheumy told me some time ago to get another set of blood tests 2 months after stopping the pred. So at present I do not know what my numbers are. My question is what should I increase the dose to to try to get rid of the pain and how long before I should reduce down again. I would be most grateful for a response, thanks, a rather currently sad Gunflash.

[DorsetLady PMRGCAuk volunteer]

Hi,

I am supposed to be coming to the end of my pred journey.

Who says you are? Maybe your Rheumy? But obviously not your PMR....

I see from previous post you’d have been reducing 1mg per month for the last 15months.....that may seem ok to your doctors and look okay on paper, but I’d bet my bottom dollar it’s not achieved by many.

In hindsight (which is great) it would have been sensible if a month ago you’d addressed the situation, by leaving it you have probably allowed it to get worse.

You don’t need a blood test to tell you are having a flare, your symptoms give you all in the info you need.

See this post for general information on flares - healthunlocked.com/pmrgcauk...

You may be able to catch it with a slightly lower dose (rather than 5mg + last dose okay), but the timings and recommendations for dropping back down is applicable.

Would also comment that 15 months is very quick for PMR, so there is no rush to finish Pred...if your PMR is still active, it’s still active...and your recent experience confirms that.

Listen to your body rather than watch the calendar in respect of reductions.

[Gunflash in reply to DorsetLady]

Thank you for your reply Dorset Lady, I have always valued your advice. I can assure you I have not been reducing for 15 months at 1 mg a month, I have been from 10 mg to 5mg dropping 1mg every 4 weeks and from 5mg to my present situation 1mg every 6 weeks following the guidance this forum gave me.

[DorsetLady PMRGCAuk volunteer in reply to Gunflash]

Ok, apologies if wrong - but this is what you say in last post -I have reduced from 15mg down by sensible tapering over 15 months to 1mg

which is what confused me....

...but below 5mg has nevertheless probably been too quick.

Hopefully 2.5mg will get things back under control, but please don’t rush on regardless....as I said if your PMR is still active, then it needs what it needs...

not what I need, not what anybody else on here needs, and not what your Rheumy (no matter how good or experienced he is) thinks it needs.

[Boss302Fan in reply to Gunflash]

Actually, I believe the recommendation is 10% reduction starting with 10mg. Thus from 5mg to 3mg would be 0.5mg reductions and below 3mg is 0.25mg reductions. This can be managed using 2.5mg and 1 mg tabs cut in half down to 1mg/d. When (if) I get that far down I’ll try cutting 1mg tabs in 4ths and hope 0.25 from 1 mg to zero isn’t too much a drop or alternate days. Want to be with an Endo by then.

[GerriMc in reply to Gunflash]

That is very fast.!

[HeronNS]

Just to follow on from DorsetLady's excellent response. I have been on pred since 2015. I had an uneventful taper in just over a year to roughly 2 mg, where I hung about for several years, occasionally a little more, sometimes a little less. In 2019 I began an attempt to finally get off pred. I was feeling pretty good, but do have osteoarthritis which can be a confounding factor when it comes to symptoms. I achieved zero pred about this time last year, by using the dead slow nearly stop plan (DSNS) by repeating each step twice, thus taking three months to make what is usually a 6-week taper, half a mg at a time. One year to get from 2 to zero. Within a month of stopping I was back on pred. A few more months went by and I am now probably as bad as I ever was and struggling to stay at 5mg. I have a firm belief that had I been content to remain at 2 mg I would not be where I am today. In the long run my total intake of pred would have remained lower. PLEASE do not taper off pred if you have any symptoms of PMR. Wait until you are sure they are gone, and proceed slowly and with caution.

[Gunflash in reply to HeronNS]

Thanks HeronNS please see my reply to Dorset Lady. I have decided to go back to 2 1/2 mg and take it from there.

[HeronNS in reply to Gunflash]

Good plan. Keep in touch and let us know how it goes. Best wishes.

[diana1998 in reply to HeronNS]

Your experience is really interesting. I think I'd rather stay on 2mg than get off, have a flare and have to go back up. Happened to my neighbour. She got off Pred and then had to go back on again and taper down from 8mg. Mind you, the whole process only took 5 years...And she did get off for good. Lucky lady!!

[dancersize2 in reply to HeronNS]

Thank you for your experience Heron. I'm down to 1/2 mg plus methotextrate and thought I'd try the drop from 1/2 to zero in June / July. See the rheumy and blood tests due end of July. I have wondered if I should just stay on 1/2 and try to lower the MTX. First diagnosed July 2017.

[HeronNS in reply to dancersize2]

Never having taken any other medication I can't offer advice, of course. But there must be a standard way of discontinuing the medications once it's thought they aren't needed. We know mtx doesn't replace pred for PMR, so I assume at some point pred is discontinued and, if all well, then mtx? But maybe you have room to reduce your mtx dose before discontinuing either drug? Your doctor will know.

[PMRpro Ambassador]

"I am supposed to be coming to the end of my pred journey" - I assume that is according to the doctor? You can only tell you have arrived when you can stop taking pred for a few months and the symptoms don't come back. And you cannot see around that last corner.

There are plenty of people who have been fine on1mg but when their doctors ordered them to stop the symptoms resurfaced in a matter of weeks. I even know of one lady who was taking 1mg every third day and was fine for a few months - but she still couldn't stop the pred altogether. If the disease activity is very low, it doesn't take much pred to clear out the inflammation it creates but with no pred the dripping tap eventaully fills the bucket and it overflows.

After 15 months fewer than a third of patients have got to the end of their PMR journey. Your aim was to get to the lowest dose that achieved the same result as the starting dose did - and I'd say it is somewhere between 1 and 2mg although you have been reducing pretty fast at this stage so probably nearer 2mg. That is a great result.

The others have said everything.

[Gunflash in reply to PMRpro]

Thank you PMRpro , please see my replies to Dorset Lady and HeronNS. I very much appreciate your advice and I have taken the ‘dripping tap’ analogy and filed it away in my memory.

[GerriMc]

I’ve been in and around 1 mg for nearly a year now. Even a reduction of 1/2 a mg every second day can leave me with problems. My rheumy said that staying on 1 or 2 mgs for as long as I want is not going to give me problems with any side effects and if it makes life easier then keep taking it. He said he’ll leave it up to me to decide when / if I reduce again. I will, but I’m in no hurry. A flare would be much worse. If I were you, I’d go back to three for a few days to see if that makes you comfortable. Then reduce very slowly again.