9 month update

[Fozzes]

Hello everyone. Was feeling ok at Christmas when I was on 7mg. Since then as I’ve tapered down things are getting worse even though I’m doing it in 0.5mg drops. When it came to the April drop to 4mg my old symptoms are returning and I’m going downhill. Arms have gone back to hurting at night and I’m struggling to move in the morning. As the weather warms up it seems to affect it more. Does anyone else have an issue with that or is it just coincidence? It’s difficult to get hold of my doctor at the moment, for obvious reasons, so what do you think I should do please?

[Koalajane]

Hi, I struggled at 4 mg and had to go back up to 5mg and staying there for a while in this stressful time. Good luck and stay safe

[lizg0017 in reply to Koalajane]

Hello, I struggled at 5mg and also had to go back up. I've been at 7mg for a couple months now. As of today, I just dropped it to 6 1/2. I'd almost bet, withing two or three days, my symptoms will be worse. Good luck to you

[diana1998 in reply to lizg0017]

Funnily enough I just dropped to 6.5mg. Had been on 5. 5 but had to go to 7 as always hits me hard in lower back. Proving hard to get back down. Sooo frustrating. Good luck!

[PMRpro Ambassador in reply to diana1998]

Is the lower back problem directly attributable to PMR? Or is it spasmed muscles? Try a one-off dose of 800mg ibuprofen (if you can, and with a meal for safety) and a hot water bottle across the painful area. If that helps it probably isn't just PMR - but it works for me. When that is under control I can manage with a lower dose of pred.

[PMRpro Ambassador]

Go back to the dose where you last felt well. You were never reducing relentlessly to zero come what may - you were reducing slowly, tapering, to find the lowest dose that worked as well as the starting dose did. It doesn't matter that you reduce in tiny steps - you won't get past the dose you need to combat all the inflammation in YOUR version of PMR.

Are you trying to do more as the weather improves? The underlying autoimmune cause of the symptoms we call PMR is still active, creating inflammation (why you need enough pred ongoing) and attacking your muscles and making them intolerant of acute exercise. Do too much and you will develop DOMS (delayed onset muscle soreness) which will be worse than you are used to and will last longer - so if you do more it will be on top of sore muscles anyway.

You may need a few days at a higher dose first to clear out the inflammation that has built up - but it is possible just going back to the last good dose may be enough.

[Pmrmolly2018 in reply to PMRpro]

Now into month 22 and cannot get below 10mg. Have tried with 0.5 steps to get to 9mg but pain so bad in arms and thighs after 2:weeks went back to 10mg. I worry about what this doing to me? Should I relax and go with the flow...try again in another couple of months. Just about to order next batch of pred and wonder if my dr will be worried at lack of reduction progress. Advice very welcome. T.u.

[PMRpro Ambassador in reply to Pmrmolly2018]

After 10+ years of pred, a lot of the time at above 10mg (maybe 2 years below, got to 5mg before a big flare and other cardiac problems the pred managed) and a few years in total at 15mg I stopped worrying about it a long time ago. I need what I need to function - and there is no point at all not being on enough to function. Life is nothing without Quality of Life - luckily I have 4 doctors who all feel the same so I have no fights.

In that time I have had no sign of steroid-induced diabetes, I gained weight, I lost weight all due to eating low carb. My bone density had barely changed after over 7 years of pred. My hair went mad on one sort of steroid, all back to normal now. There may be other things - but noone has identified them yet!

Your doctor probably will complain - but at present you are under great stress, we all are, and PMR doesn't play well with stress. Not everyone absorbs by any means all their oral pred - some absorb 90%, some as little as 50%. If you are towards the 50% end, you will appear to need a higher dose for longer.

While reducing by 0.5mg steps - did you also use a slowed taper approach?

[Fozzes in reply to PMRpro]

Thanks very much, I have been doing a lot more at work and at home, I’m a gardener. I will up the pred for few days although I do feel slightly better today having rested yesterday. Will try to stop over doing it!

[Hidden in reply to Fozzes]

And yes..are you a key worker?if not you should be staying at home anyway.

[Fozzes in reply to Hidden]

I am considered essential

[Hidden in reply to Fozzes]

Just be careful....no cups of tea😉

[PMRpro Ambassador in reply to Fozzes]

Do you work for someone or self-employed - not nosey, interested. Our gardening people seem to be working but they do all work alone usually which is fine - and it keeps moral up when the flowers are planted.

[Hidden in reply to PMRpro]

Window cleaners and gardeners are exceptions to the only key workers rule...rather than essential..., presumably as they work outside and, apart from in cities, are presumed to travel in a car/van with tools rather than public transport.

I agree keeping flowers and gardens nice keeps moral up. A Hawthorne has blasted into blossom this week and I can see it from my attic window!

[Fozzes in reply to PMRpro]

I’m employed, I do gardening and maintenance for a hospice (alone)

[Hidden in reply to Fozzes]

Then I would agree...essential.

Just don't overdo it. 👍😊

[PMRpro Ambassador in reply to Fozzes]

Absolutely essential - and I bet your work brings a lot of comfort to a lot of people. Keep safe

[Daffodilia]

I am back to 6 mg from 5.5 mg

[moorfield]

I am nearly at the same timescale/dose as you and have had exactly the same return of symptoms ...I have had to go from 6mg back to 7.5mg a week ago.Bit too early to tell but think this is helping....I will stay on that dose for a few months....then try o.5mg tapering again....so frustrating ...

[Fozzes in reply to moorfield]

Yep, wishing you luck

[moorfield in reply to Fozzes]

Thank-you,

And it does sound like you are over doing it , as you have a manual job,( which I am learning doesn't do well with PMR).

[Pesterfootbridge]

Hi, I had a similar scenario and had to go back up to 5 mg for a few days then restarted the 4. My doctor (knowledgeable and sensible version) advised me that in his experience that I was likely to stay on 4 mg for a few months. This turned out to be true. Looks like you have had some good advice so hang in there and don't pull start too many mowers!😎

[barny49]

I was doing well until I got down to 1mg. Pain was returning. Have had to stay on 3mg for comfort. I do hope someday I can stop altogether.

[Constance13 in reply to barny49]

Don't we all??