Update & More Advice Please

[Pusph]

Hi, would appreciate some advice please. As per my previous post I thought I was doing OK, started at 15mg in April 22 and got down to 5.5mg in Feb this year with no real problems. Tried to go to 5mg on 3rd April but started to get tingling between shoulders and a bit of pain so went back up to 6mg on 13th April and then 7mg on 16th April. Still getting pains etc at that so on advice from here I increased again to 10mg on 19th April to try to do a spring clean as it were. However, I'm still getting the same aches and pains and my questions are - 1. should I give it until the 14 days are up (which I'm assuming I should count from my first increase to 6mg which was on 13th) which will make it 26th.

2. Or should I count 14 days from my first increase to 10mg, if so what should I taper to next?

3. Or do I need to increase again, which I don't really want to do as my palpitations have already reappeared! If so what to, how long for and then taper to what?

The pain certainly isn't awful (touch wood) but it's niggly between shoulders and bruised feeling in hips and it IS there so obviously there's still inflammation around.

Sorry for all the questions but I'm so demoralised, worried, fed up and my 'pred head' brain fog is coming back.

Thanks in advance.

[Ridge]

The knowledgeable will be along to give you sound advice soon but is there any reason that it could be DOMS? I ask as I think I have been through something similar and two days ago the pain resolved so it was DOMS! Perhaps! Before this started did you do anything different? I planted a plant!

[Pusph in reply to Ridge]

Don't think so, but nothing is absolutely certain with this is it! How long did yours last for in total please?

[Ridge in reply to Pusph]

Stiffness started on the 4th April. I had done very light gardening so I 🤞for DOMS. It got worse after a stressful drama on the 9th. I also get heart palpitations if I increase Pred although it could be the increased inflammation causing them. 🤷‍♂️ I had only just got to 5.5mg from 6mg.

As I see it the symptoms from either a flair or ai and DOMS are similar. Have you tried paracetamol? If that helps then it might not be a flair also had you done anything slightly different or extra a couple of days before?

Anyway three days ago whatever was going on with me has resolved. Hopefully it will stay like that but I won’t reduce for a good while

[DorsetLady PMRGCAuk volunteer]

Give it to the 26th on 10mg - and see how you feel then. if you feel better, then maybe down to 8mg for a week, and then 6mg...for a month.

If you aren't feeling any better by 26th... then you may need another couple of mgs for a bit longer... so come back then, and we'll have another think.

[Pusph in reply to DorsetLady]

Thank you, that's what I was thinking. I'll give it to the 26th on 10mg then. Am mindful of what Kendrew says about it possibly being a withdrawal and it did come on quite quickly after I went to 5mg. But I suppose I panicked a bit not wanting it to get worse and started going back up. But if it had been withdrawal/adrenals shouldn't the increase (certainly to 10mg) have knocked the pain on the head?Thanks.

[DorsetLady PMRGCAuk volunteer in reply to Pusph]

10mg should have made a difference - so there may well be something else going on as well… not always an exact science…unfortunately.

[Pusph in reply to DorsetLady]

Oh right. What something else could it be?

[DorsetLady PMRGCAuk volunteer in reply to Pusph]

Yo be honest - don’t know - have you done anything to upset shoulders and/or hips. I know it seems unlikely to be both at same time, but not every ache and pain is PMR - we sometimes forget that… probably needs a bit more investigation if the increased Pred doesn’t help.

[Kendrew]

Hi Pusph,

Others with more knowledge will be along to advise more on dosage and tapering but I just think it's worth mentioning that some people (myself included) can experience 'withdrawal' symptoms when reducing down, and these symptoms frequently mimick the PMR symptoms.

I'm able to differentiate which is which because withdrawal symptoms usually emerge within the first week of the change and can last for a few weeks but then fade out.

If PMR is going to re-emerge because the new dose is too low, then the initial symptoms will either not diminish after a few weeks or symptoms will re-emerge several weeks after the change in dose, as the inflammation begins to build up again.

I'm not saying this is what's happening to you, but just be mindful this is always a possibility.

[Pusph in reply to Kendrew]

Yes I had thought possibly that, but I suppose I panicked and didn't want it getting any worse. Thank you.

[PMRpro Ambassador]

Have you any other signs of myofascial pain syndrome? Trigger points in muscles or where soft tissue attaches to bones that are painful to firm touch? I get that sort of pain/discomfort and it isn't directly PMR but due to MPS that is part of PMR and it responds better to targeted treatment than just raising the pred,

[Pusph in reply to PMRpro]

Hi, nothing seems to hurt when I press the areas with fingertips. Have had hip pain on and off for several years anyway and would describe that as soreness and the 'pain' in shoulders is really a niggly, tingling, tightness, stiffness - if that makes any sense.

[PMRpro Ambassador in reply to Pusph]

Oh yes - recognise that! Strange isn't it? The tingling I get is into my shoulderblades and is put down to tight muscles pinching nerves. I find that 800mg of ibuprofen and sitting with a hot water bottle over the area helps a lot.

[Romilly2]

Hi , exactly the same happened to me this past few weeks ! Thank goodness we can ask on here for guidance. I’ve upped my dose to 10 but it’s not getting rid of the symptoms totally. Added 2 mg more last night and will see . Hectic life at the moment isn’t helping but onward and upward 😁

[PMRpro Ambassador in reply to Romilly2]

If you have a hectic life at present that is almost certainly the underlying cause of your problems. And adding more and more pred won't solve them.

[Rugger]

You had done very well to get to 5mg in a year since diagnosis.

Also, you mention "Spring clean"........... 😲

Take it easy!

[DorsetLady PMRGCAuk volunteer in reply to Rugger]

Think Pusph meant a 'spring clean' of flare - not an actual spring clean - but I may have misread that,..🤦‍♀️

[Rugger in reply to DorsetLady]

Oops! 🤦‍♀️

[DorsetLady PMRGCAuk volunteer in reply to Rugger]

First time I wondered, so had to re-read...happens to us all...

well not the spring cleaning - passes me by nowadays - too many years in married quarters!😲

[Pusph in reply to Rugger]

Theoretical spring clean of flare not the house!😀

[MikeVanBC]

Hi Pusph,

You can’t get better advice than that from Dorset Lady, Kendrew & PMR Pro and others on this forum.

I’m only chiming in because it appears you and I both got hit with PMR last April, and I too have found 5.5mg of pred is the precise amount required to maintain QOL.

I’ve tried 4 times to get lower, even using the DSNS method alternating every 3 days to 5mg. However, each time I end up using more pred dealing with flares than I would have, had I just maintained at 5.5.

As a result, I’m going to stay at 5.5 for some as yet unknown extended period of time, before once again trying to reduce further. This seems logical to me because it typically takes a couple of years or more for PMR to settle down on its own, and flares increase the odds of repeated yo-yo effects that can require a greater consumption of prednisone to regain control.

Best wishes from the SW Tip of Canada 🍁

Michael

[Pusph in reply to MikeVanBC]

Hi thanks for your reply, always nice to know you're not the only one and from what I can gather several others have hit the buffers at 6/5.5/5mg level. It's just so frustrating and totally demoralising when you think you're doing so well isn't it. Just hoping I can get it back under control and get back down to 6mg where I shall stay - for a long time probably!

[PMRpro Ambassador in reply to Pusph]

"It's just so frustrating and totally demoralising when you think you're doing so well isn't it"

I can't say it enough times - you aren't aiming relentlessly for zero - you are titrating the dose to find YOUR dose, the lowest effective dose at any given time. Your expectations were too high. PMR lasts at least 2 years, for the majority considerably longer so when you look at it realistically, you have done really well. The mean time to get from 15 to 5mg is 18 months - you are still ahead of the curve.

It doesn't mean you won't get lower - just not yet.

[Pusph in reply to MikeVanBC]

Out of interest, when you went up to 10mg for the 4 days to control your flare (and then dropped back down to 6mg) had all the pain gone after the 4days or did you still have a bit? And was it successful long term?Thanks,

Pauline

[MikeVanBC in reply to Pusph]

Hi Pauline,

I've had to jump up several times because of the different times I tried tapering. On one occasion where I really pushed it, thinking that it was perhaps pred withdrawal or adrenal issues, I had to go up to 15mg again for about a week. Then I went to 10mg, dropping to 8, then 6 for about 3 or 4 days each, before settling back at 5.5.

On other occasions I went to 10 for about a week or 10 days, then stepped down as explained above. That's why the tapering actually led to significantly greater pred consumption than if I'd just stayed on 5.5.

From now on, I'm just trying to not let PMR bother me. It is what it is. I take my pred like a multi-vitamin. This dose is low enough that I don't notice any significant side effects. And even if some surface later, most reports I've read suggest prednisone does not reduce longevity. If someone has a report that differs, I dont even want to see it!

Overall I am just so thankful for prednisone and the support on this forum that I'm counting my blessings.

Hugs,

Michael

[Pusph]

So I've been on 10mg since 19th April after having increased to from 5mg to 6mg and then 7mg. I still have slight stiffness between shoulders blades and fleeting pain/twinges in hips/sometimes neck. Also joints feel crackly sometimes. I think today is probably the last day I could take 10mg and then drop straight down to 8mg then maybe 6mg, but as I've still got stiffness should I stay on 10mg for longer and then I suppose I'd have to restart taper to 9mg then 8mg etc onwards? The pain/stiffness certainly isn't awful, it's just there and comes on as the day progresses, I'm OK first thing (touch wood!) I've also noticed that I have bony nodules on my thumb/wrist joint and index finger knuckle and joint is painful so wondering re arthritis as well!! I would appreciate some advice as to what to do.Thanks.

[DorsetLady PMRGCAuk volunteer in reply to Pusph]

I think I’d be inclined to try 10mg for a few more days (as if you discount the climb up) you haven’t reached the 14day limit we quote as yet.

Provided that works, you may still be able to step down to 8mg without an issue. But unfortunately no one can guarantee that.

Nodules could be arthritis-either OA or RA.. so do keep your eyes on those as well.

Always something new to add to the fun 😳🤣😂

[Pusph in reply to DorsetLady]

Oh right, don't I have to count the days I increased to 6mg and then 7mg then? And just count 14 days from my increase to 10mg then? If so that gives me a bit more leeway!

[DorsetLady PMRGCAuk volunteer in reply to Pusph]

You can but try. It’s why we usually suggest in a flare situation going straight up to higher increased dose of +5mg rather than creep up - one mg at a time (which rarely works),

Fingers crossed