Drop or not...

[Suzan62]

Hi there, I'm due to drop to 15 mg this week from 17.5 but have been having some aches in my shoulder, mainly in the morning. Do I drop anyway or do I hang on until the aches pass, hopefully they will. Had them last Monday/Tuesday too but then they went after that. Came back this week on the day I was due to drop as it happens. When I dropped to 17.5 after being on 20 for a month I had a week of aches here and there but they passed after that. Just not sure whether I should wait until the shoulder aches go again or if I should drop now as I expect I'll get aches again anyway.

[DorsetLady PMRGCAuk volunteer]

Hi Susan ,

Usual advice is not to drop if you have a return of pain - unless you can attribute it to anything other than PMR. Are you sure you didn't do anything on the day(s) prior to your recent bout of aches? Needn't be very much to bring on aches.

Would guess that original aches from 20mg to 17.5mg were probably down to steroid withdrawal. If so, then either you need to try smaller drops - do you have 1mg tablets? If not, request some, or if you have 2.5mg you could cut them so long as they are not coated. Or try a plan that takes a few weeks rather than an "overnight" drop.

Anything is worth trying - if your body doesn't like the bigger drops, then do it another way.

Whatever way you decide to go, I would stay at 17.5 for another week to make sure it doesn't happen again. You may have a plan, but like most of us you'll find it needs adapting from time to time - no matter what anyone else says or thinks.

[Suzan62 in reply to DorsetLady]

Hi there, thanks for reply. No I don't think the aches were due to anything else. I sometimes find if I feel a bit stressed over something then my shoulder aches. I think the aches at last drop were due to steroid withdrawal. They weren't agony and passed after a week so I can live with that. I'll wait until the aches pass until I go to next drop and if I struggle with that more than last time then I'll go back up to 17.5 and request some 1mg. tabs from doc. I think. Or I could ask for some now and take a smaller drop. Not sure what to do for the best really.

[DorsetLady PMRGCAuk volunteer in reply to Suzan62]

Personally I would go for smaller drops, but only once current pains have gone. It's easier on the body. And you can always do 2 smaller drops a fortnight apart rather than a bigger one once a month - works out the same roughly.

Plus as you get lower in dose you need to do smaller drops anyway. Remembering the mantra -"no drop should be bigger than 10% of current dose".

Good luck.

[Suzan62 in reply to DorsetLady]

Yes you're right, so what would my next drop be?

[Hidden in reply to Suzan62]

hi suzan62

Not a big expert but my drops from 15mg were done when Dr chasing me down. But I found 1mg per 4 weeks too much. so I did 0.5mg. Got to 8mg and pmr bit back. trying again. I have been on 13mg for 2 to 3 months and just started dropping by 0.5mg again using dsns method advocated on this group. There are several threads about it. As the experts here have said symptoms rule.

[DorsetLady PMRGCAuk volunteer in reply to Suzan62]

If you're staying at 17.5mg and that's okay, then get some 1mg from surgery and just try 1mg at a time.

If you feel okay -and I'm mean proper okay, not sort of okay - after 2-3 weeks at the new dose then that should indicate that dose is enough. It's up to you then how long to stay at it. Most people usually do around a month between drops, but it really depends on how YOU feel. A month is long enough to give a good indication that each dose is working. If you go too quickly, you risk a flare, so slowly does it really is the byword.

All the time you have PMR -and that can vary widely - you have to take enough Pred to keep your inflammation under control, and you -pain free.

That level will be different from mine, or anybody else's on here, your doctor's opinion or even next door's cat! And it can vary if you are in stressful situation - mentally or physically.

The most important thing I think, is understanding that no-one can tell you how long you will have PMR. It comes, it stays, it goes - that's why is so frustrating and disheartening when some medical people insist you stick to THEIR plan - invariably you can't, not because you haven't tried, but because the PMR won't let you. The fact that they don't always get that surprises me. But I guess they're so used to giving you medication and after a short while everything's okay.

Take care.

[Suzan62 in reply to DorsetLady]

Thank you, that's excellent advice. I will stay on 17.5 until pain is no longer there and then I'll drop 1 mg. If I'm pain free after 2 weeks I'll drop another 1, if not I'll stay where I am until pain goes. Thanks again, much better plan than what docs suggested.

[DorsetLady PMRGCAuk volunteer in reply to Suzan62]

Yes,

But they aren't the ones suffering!

After a while on this 'journey" you learn to listen to your body not the docs!

Take care.

[DorsetLady PMRGCAuk volunteer in reply to DorsetLady]

Sorry,

Just realised I mis-spelt your name - mine's similar but ending "nne" and I still get angsty if it's spelt wrong!!

[Suzan62 in reply to DorsetLady]

No it is actually Susan but sometimes I write Suzan 🙂

[Suzan62 in reply to Suzan62]

Hi there, I managed to get some 1mg. from docs but still having aches in shoulders at moment so won't consider dropping dose yet. As I said previously, when I dropped from 20 to 17.5 I had aches in different places for a week and then I was ok mainly until it was time to drop again and then my shoulders started aching, I think it was due to stress. Still stressing a bit at the moment so that's probably why the aches are persistent. At times like this do you just ride it out and wait for aches to go or do you up the dose? Don't want to do that really I'm just not sure what I'm meant to be doing. I'll probably be ok again once I relax!

[PMRpro Ambassador in reply to Suzan62]

Aches after a drop is not unusual - and if they clear in a week or improve steadily the likelihood it was steroid withdrawal. A flare often takes some days to appear and then gets worse day by day. That is how you decide which is which.

[Suzan62 in reply to PMRpro]

Yes it did go after a week and I'm going to try a smaller drop next time. These current aches started last week after a stressful weekend. Sunday just gone my shoulders didn't ache at all and then yesterday they just came back again! It's nothing like the pain I had initially, I couldn't walk properly or do anything without a struggle. This is just my shoulders and just seems to come and go, although they seem to hurt more when I'm feeling anxious over something.

[PMRpro Ambassador in reply to Suzan62]

That sounds like tense muscles in your shoulders - mine are due to myofascial pain syndrome which often comes with PMR.

[Suzan62 in reply to PMRpro]

This is the same kind of pain I had before, left shoulder and arm feels heavy. I'm just unsure if I should be increasing tabs or carrying on with current dose (which was ok until I became stressed). Doesn't seem to be getting any worse but it's still there so I can't drop and I've been on 17.5 mg for just over 5 weeks. I'm going away for a relaxing weekend so perhaps I should see how the pains are after that. I'm staying calm now and hopefully the aches will go without me having to increase the dose.

[Suzan62]

Very true, I'd much rather take advice from people like yourself who actually understand the condition and therefore know what they're talking about.

[Michdonn]

Don't you wish some of these doctors could walk in your shoes for a while and just feel the pain? I know I do!