Tapering pred problems. Advice please.

[MiloCollie]

I started on 15mg pred on 23rd April and give or take a day I reduced to 12.5mg on 26th May but I think I'm struggling. I say "think" because I have a right arm issue/injury that overrides PR muscle pains but I'm not sure what to do next. I feel like guzzling my pred boxes all down to get some kind of relief like I got in the early days! But I won't. Do you think I need more pred for longer because I've had it so long (I'm convinced I've had PMR for about 18mths untreated before I sought help) so is it taking longer to heal?? I'm speaking to a rheumatologist for the first time on wednesday and then my GP on Friday so I'll mention it to them but they don't know the disease like you guys do. Grateful for any advice please.

[DorsetLady PMRGCAuk volunteer]

Hi

Although 15-12.5mg is a recognised taper, it's not achievable for everyone...many try 1mg a time only.

However, as the issues seem to be one sided it could well be something else that was masked at 15mg, but has now surfaced on the lower dose. Have you done anything to your right side that could account for that?

Not sure that how long you've had it necessarily means you need more, it may do, but don't think it's proven... and if you got good relief after being on 15mg for a month then that indicates 15mg was enough.

Yo could try ordinary pain killers to see if they make any difference to your right arm, if it does it might indicate it's not purely PMR. You have a couple of days before you speak to Rheumy to try that option.

[MiloCollie in reply to DorsetLady]

Thanks. I HAVE injured my right arm possibly a tendon or ligament thing which could take months to heal I know - -recent xray normal but next maybe an MRI. That aside, I'm aching quite a bit. I know I sometimes overdo things but the last two days I have not done very much and still feel the same.

[SheffieldJane]

Are conventional painkillers helpful to you? They will be if it is not your PMR.

[MiloCollie in reply to SheffieldJane]

HiI have taken co-codamol at bedtime for my right arm pain and that helps but I know that is a separate injury so I'm not surprised with that. I can't take those regularly though as they make me feel sick.

I just feel I can't FEEL my PMR or any improvement whilst this right arm is like it is!

[DorsetLady PMRGCAuk volunteer in reply to MiloCollie]

Well unfortunately that’s two separate issues, you may be feeling your PMR is worse because of your injury, but not sure Rheumy will agree - depends how switched on s/he is to non PMR issues. May say stay where you are, but may say go back to 15mg - one never knows! But certainly don’t try and reduce any more, and if he’s insisting on that, try and negotiate a smaller drop (1mg).

Co-codamol are not nicest I agree! Perhaps just at night?

[MiloCollie in reply to DorsetLady]

Yes. Thanks again

[SheffieldJane]

Tramadol is of a similar strength but without the codeine. I do understand that an injury such as yours will just make you feel like a mass of pain, I’ve been there. Maybe a little break from tapering and then well spaced drops of 1 mg as DL suggests.

[MiloCollie in reply to SheffieldJane]

Thanks for listening. fed up isn't even close! I don't even feel like I'm tapering I feel stuck on 12.5mg and no plan in sight. I'll probably feel better after I speak to the professionals this week.

[DorsetLady PMRGCAuk volunteer in reply to MiloCollie]

You have to remember you are only 6-7 weeks into treatment, and your comment about ‘sometimes overdoing things’ may imply you are not helping yourself as much as you could.

Not a criticism, but it takes time to adjust and get to know your illness.

I know your PMR has been rumbling away for some time, but Pred only addresses part of the problem. You may feel a lot better with the medication than you have for a long time, but you still have the underlying illness, which needs to be managed with pacing yourself and resting. Just because the majority of your PMR pain has gone, doesn’t mean you can return to normal activities.

Don’t beat yourself up about it, but do give yourself some TLC, and time.

[MiloCollie in reply to DorsetLady]

Return to normal activities is exactly what I did!!! Cleaning and ironing on the same day??? Shocking haha. Today is hoovering and hoovering only! Thanks xx

[DorsetLady PMRGCAuk volunteer in reply to MiloCollie]

Eeek! 🤦🏻‍♀️ Pacing, pacing, pacing…new mantra! Promise me!

[MiloCollie in reply to DorsetLady]

I promise. I’m actually gonna leave the hoovering even!

[DorsetLady PMRGCAuk volunteer in reply to MiloCollie]

Spot on!

[PMRpro Ambassador in reply to MiloCollie]

Make friends with your dust bunnies! Even better - any chance of a bit of cleaning help? The vacuum is my main enemy so I leave it alone as much as possible. My wonderful orthopaedic guy in Germany said it should be banned ...

healthunlocked.com/pmrgcauk......

[MiloCollie in reply to PMRpro]

Loving the pacing article and tips. It’s actually made me think I’m going to ask hubby to do a bit more. Thanks xx

[Sophiestree in reply to PMRpro]

I like your orthopaedic man! Housework in general... urghhhIt's as much as I can do just to try and stay tidy.

[PMRpro Ambassador in reply to MiloCollie]

Don't get your hopes up!!!

If it were me, I'd want to go back to 15mg and creep down 1mg at a time - I don't care what the medics think/say, only 4 weeks at the starting dose isn't long and especially when the diagnosis was late. The bursitis and tenosynovitis I had accrued after years of unrecognised PMR took a few months to go entirely - there was an immediate and dramatic improvement in the muscle pain though.

[MiloCollie in reply to PMRpro]

I’ve nearly gone back to 15mg most days. I’m not desperate to taper. Cheers as always.

[123-go in reply to MiloCollie]

I hope you do feel better after you've had that conversation. Please don't feel that you are 'stuck'. You are at a very early stage of your journey and reducing Pred must be taken very slowly to avoid a flare/relapse. We can't afford to be impatient because PMR will take as long at it takes with the medication helping to reduce inflammation in your body until you eventually achieve remission. This is the aim of us all.

It's very confusing to start with but hopefully a sensible tapering plan will be suggested and then you'll settle into things. Your injury is obviously not helping and the advice you've had here is sound. Good luck with your appointment. Do write down beforehand any questions or queries you have so that you don't come off the phone kicking yourself because you've forgotten something; been there, done that and have learned my lesson. Anything that you don't understand, ask to have it repeated or explained. If you still don't understand, the 'experts' will be here for you.

Let us know how it goes.

[MiloCollie in reply to 123-go]

Thanks. I will.

[SnazzyD]

Sounds like you are still carrying the injuries from your fall. If you didn’t have PMR you’d likely shrug it off (painfully) as being from the fall and perhaps if possible be trying to see someone who can unpick the damage. A month ago for a fall is not long if you’ve had a real clonker and it can set up a chain reaction of problems. If you can, I’d try an osteopath, really good physio who will investigate not just follow a doctor’s ‘prescription’, chiropractor or Bowen therapist. GP’s and Rheumys I find are not much good with musculoskeletal issues besides chucking the pain killer/rest plan it. You may need some manipulation or targeted massage to stop the pain and a chronic set of spasms, pinches etc . Often just pain killers aren’t enough and you have PMR on top too. Bunging Pred down isn’t the answer to all of this and isn’t a short cut to recovery from injury unfortunately. I sense an urge to crack on with reducing and wanting a plan but with only 8 weeks on Pred plus a fall, you might need to rein it in a bit so you can see the wood for the trees. There was no way I could do 2.5mg in one go from 15mg for the withdrawal alone, preferring instead to 0.5mg every 7-10 days.

[MiloCollie in reply to SnazzyD]

Thanks to you all. You’ve made me cry. You’re all right I’ve only been playing this game a short while. I need to slow down and be easier on myself. If I don’t get much advice from the rheumy I’ll put myself back on 15 mg and tell my gp that’s where I’m staying for a while. So there.!!!

[Dambusters]

My doctor, whose mother has PMR, advised reducing by 1mg per month to 10 and then by 0.5 per month. I am down from 20 to 8 without a problem....so far.

[MrsNails]

Hi Milo

I was ‘away’ most of yesterday so only glanced at the Forum, sorry you may have already answered this but was the arm issue prior to diagnosis or since?

You sound as if you’ve overdone it as pacing & rest is important, many people can’t manage the 15 ->12.mg drop & do better going down in 1mg tapers.

I was carrying a shoulder injury prior to my PMR diagnosis & it was actually classed as a ‘frozen’ shoulder post Surgery following Excessive Physio - the shoulder saga is a long, long story! I had Amitriptyline for my Shoulder alongside Paracetamol with the Codeine separately, so l could take according to the pain.

Personally, l would not mess with my Pred Dose until you’ve spoken to the Rheumatologist tomorrow, he also needs to be aware of your arm issues.

Good Luck & let us know how you get on.

Kind Regards

MrsN

[MiloCollie in reply to MrsNails]

Hi yes I’m staying at 12.5 until I speak to him. I hurt my arm 5 days before I started prednisone by pulling a baby buggy backwards across sand. I think cos the pred settled my other pains quite quickly it made this injury stand out more. Yesterday I took cocodamol and did a 800mg ibuprofen flood as read on here and that was great!

[MiloCollie in reply to MrsNails]

Thanks mrsN

[sail26]

HiI have a painful shoulder aside from the PMR. Diagnosed on 2nd March 21 and Dr.started me on 15mg. for a month which worked on both the PMR and shoulder which I think is linked somehow, with advice to change to 12.5mg after 4 weeks. The 12.5 was too low and all pains returned so I went back to 15mg for a month and am reducing by 1mg every 3 weeks. Currently, on 14mg and no pain providing, I don't overdo things. It's going to be a long haul.

[DorsetLady PMRGCAuk volunteer in reply to sail26]

It invariably is a long haul, but once you’ve acknowledged that fact, it becomes easier to deal with. The trouble is, many doctors don’t appreciate that PMR has its own agenda….and it’s not always the same as theirs.

If you can, and are allowed to, go at your own pace, listen to your body, and reduce when you feel able to…..don’t be bullied by the doctor or the calendar.

And don’t overdo things, pacing yourself and forward planning becomes a necessity, and a well honed skill when you have PMR.

[MiloCollie in reply to DorsetLady]

Great advice as always.