Struggling to reduce, despite slow descent

[teach77]

Hi everyone,

I will try to keep this brief but also hope I give sufficient information. I am feeling pretty despondent about where I am going though I know the steroids are valuable and my only option to make life manageable.

I developed PMR symptoms in March/April 2022 and was given the diagnosis in May by a rheumatologist who I saw privately. I started on 15mg Prednisolone and gradually came down through pain free months. Unfortunately, in November when I got down to 8.5 mg the pain returned and after trying to do a couple of small increases, which didn’t work, my reheumatologist told me to go back up to 15mg and then come down again. Unfortunately, he didn’t give much guidance, didn’t have my notes for that and a subsequent appointment and asked me when he had diagnosed me! For the final appointment I took my daughter who is a nurse and she agreed that it would be better to find another consultant as he didn’t seem to have much knowledge of or interest in PMR.

At the start of 2023, I started to take my pred at 2.00am. I found I was waking at this time anyway and as I was not making good progress, I swapped the time from after breakfast. It did seem to help, thoughI don’t know if I should try to change this in any way. Since that time, although the pain and stiffness has been significantly reduced, I do find I get very stiff after sitting and during the night there is stiffness and some mild pain. I read that people are pain free and friends also say they are but I struggle to achieve complete and permanent pain free success! I don’t know why. I don’t, however, reduce unless things have improved.

In July last year I eventually got to see a lovely NHS rheumatologist. The appointment was so different from my previous ones, both in terms of checking me out and the information he gave me. Sadly he was from another trust called in to cut the backlog in my area so I am not sure if I could get to see him again. He also said he has a long waiting list.

On his advice, I started to reduce again, but more slowly going down .5 every three weeks but at various points I had to increase again. I got to 8.5mg last week and had the biggest flare for a very long time. I tried going back to 9mg but the pain was so great, I returned to 10mg. This made a difference and although not great, I can now function!

I would be really grateful for any advice, I am clutching at every straw! I take Curcumin, BioAcidophillus, am having an anti inflammatory diet and am even trying cryotherapy, though I have only had one session as the machine is now broken! It wasn’t as bad as I thought it would be.

Up until recently I have been fairly fit for a 72 year old but I can feel the muscles dwindling! I do try to listen to my body and not over do it. Recently I have needed to rest in the afternoons, not like me at all!

My questions are

After upping a dose of Prednisolone to combat a flare, how long should one wait to see if the increase is sufficient before going higher? Do I need to keep going up till I am pain/stiffness free? Will that actually happen?

Having done what I did and gone back to 10mg, or wherever I end up, should I wait three weeks again before reducing or can it be a bit quicker?

Is 3 weeks usually sufficient time on .5 mg before reducing?

Has anyone else experienced arm/shoulder pain with reduced function/ movement like frozen shoulder?

Does raising the steroid just mask an issue like frozen shoulder or have no effect?

If the shoulder pain is Pmr and not frozen shoulder, would paracetamol help the pain? It does seem to a bit.

[piglette]

Don’t reduce until you have hit the PMR on the head after the increase. It will come back and bite you. The normal suggestion is increase by 5mg. You should be able to reduce again in a week or so. If you stay at the higher dose for over two weeks you will need to do the normal taper. Less than a couple of weeks you can drop back to the last dose at which you felt OK.

I found frozen shoulder is a different type of pain to PMR. Also it is unilateral. Steroids will reduce the pain depending on the dose. A steroid injection will have much more effect.

Paracetamol, and pretty well any other painkillers, are pretty useless in helping PMR, although they can help steroid reduction pain.

[teach77 in reply to piglette]

Thank you piglette, this is very useful information.

[HeronNS]

The first thing I want to say is that your journey, although difficult, is far from unique! Please do not worry if you can't seem to taper right now. It seems that you need to stay at a slightly higher dose than you want to for longer in order to allow all the residual inflammation to be cleared out. Because of poor (or no) advice from your previous specialist it appears that you've got into a bit of a yo-yo pattern. Others will be along with more advice, but my suggestion right now would be to find the dose where you feel properly comfortable. Usual plan is to increase the dose by 5 mg not try to creep up which seldom works. If this helps within a few days or a week, you can then drop back to slightly above where you were last properly comfortable. If that happens to be less than 4 or 5 mg less than your increased dose, then it's very likely you should start a slow taper rather than dropping down. I say this because from your story it seems possible that this will be your experience. So if you are at 10 mg now, but not quite as good as you would like, I'd suggest adding another three or 3.5 to your increase, which would be about 5 mg more than 8.5 where you flared. See how that goes. Others will be along with advice as well and will have ideas about how you should taper from there. Personally in your shoes I'd probably opt to taper by only half a mg at a time using one of our slow taper methods as a template. Remember, "It isn't slow if it works".

[teach77 in reply to HeronNS]

Thank you HeronNS, very helpful.

[DorsetLady PMRGCAuk volunteer]

Hi, and welcome..

Would say you have a few things going on at moment -

A. A flare as you say - so see this link which contains advice -

healthunlocked.com/pmrgcauk...

- the increase to 10mg may not be enough [I can now function but not great!] as you can see usual advice is to add 5mg to really get a grip of things - so I’d try 13mg for the time suggested in link, and then you should be able to drop back down to 9mg.

From then on reduce by 0.5mg on a monthly basis rather than 3 weeks…

B. Arm/shoulder pain is as likely to be PMR or even GCA rather than frozen shoulder. However if paracetamol helps then it may be a frozen shoulder or rotator cuff issues.. has that been looked at?

C. You are also entering the dose when your adrenals need to think about working again… so a slower taper may also help…

D. If taking your Pred at 2am suits you then continue taking it at that time. But whatever time you take it, if it’s not enough, it’s not enough.

As this is your first post, although you aren’t new, new you might like to have a look at this info post -

healthunlocked.com/pmrgcauk...

[teach77 in reply to DorsetLady]

Thank you DorsetLady, I have printed off the articles so I can really digest them.

[DorsetLady PMRGCAuk volunteer in reply to teach77]

Can provide word/pdf docs if you wish.. just send me a chat message [private] with your email address.. but don’t put it in open forum

[Scaredofpred in reply to DorsetLady]

This is useful. Have really bad shoulder pain, right side, my ch less on left. Had cortisone injection which helped for a few hours. ( ? Anesthesia). Still awful pain.

I am facing a long haul flight in 48 hours so have not started Pred in case of reaction, but now in such a lot of pain……. Did any of you kind souls have a reaction ( gastric etc) when first starting? I have the pills and keep looking at them……..

[DorsetLady PMRGCAuk volunteer in reply to Scaredofpred]

Have a look at this re long haul flights and meds -

healthunlocked.com/pmrgcauk....

If you have a history of gastrointestinal issues then you should be been prescribed at PPI [Omiprazole or similar] or an enteric coated Pred. In fact a PPI is usually prescribed as a matter of course. But many find taking Pred in a spoonful of yogurt helps, and they should be taken with/after food anyway.

[PMRpro Ambassador in reply to Scaredofpred]

The gastric effects of pred are more longterm then immediate. If you have PMR, the only relief you will get is from the use of the correct dose of pred.

[PMRpro Ambassador]

Hi and welcome!

Some people are NEVER fully pain-free but the level of relief you get with the starting dose is a guide as to what is acceptable later.

You are never reducing the dose relentlessly to zero - you are tapering or titrating the dose to identify the lowest effective dose: the lowest dose that gives the same level of relief that the starting dose did. When you repeatedly flare at about the same dose, that is your body telling you that you have arrived - for now at least, It doesn't mean you won't get lower, just not yet. If you try to force things to get to a lower dose than that, the chances are that you will trigger a flare with the unmanaged inflammation building up over time until it causes symptoms to reappear. If you keep trying to do that, you will find it increasingly difficult to get things under control, often needing more and more pred to do so.

DL has explained what to do with a flare - but the most important bit is not to go back to the dose where you flared - it was obviously not enough. You will get there - you are only 2 years in and have been messed about. Take it easy and accept where you are is not too bad at all under the circumstances. Four to 5 years is a much more common timescale - plenty of time.

All that supplements and stuff may help but equally it probably isn't. Only enough pred works. And I wouldn't do cryotherapy to be honest. It may be great for joints but PMR is muscles not joints and lots of people including me find being cold just makes muscles seize up. One lady got it at a German rehab clinic and went home worse than she'd arrived!

[teach77 in reply to PMRpro]

Thank you PMRpro. I found this very reassuring and helpful.

[Pollyone]

Hi Reading your info feels very similar to my situation albeit it’s only been 6 months for me so far. I’m at 9 mg having reduced from 30 mg initially(locum prescribed) which I felt was too high but was grateful to have the steroids. I’m trying 1mg or .5 mg reduction now but do get a bit achy as I come down. I try and see how long it lasts and if it levels after a few days I don’t go up but stay on the same. A private rhuematologist recently said 1mg reduction per month and I have seen in this forum a regime of lowering and then coming up and lowering again but it will need a search to find that. As (when and if,)I get lower on the steroids I will be trying that. I also have developed aches in my right hip and have physio excercises for that but it might be osteoporosis-arthritis developing. I like you am a similar age and considered myself fit, healthy and active. In my case it might have been shingles jab too soon after Covid and flu jabs causing inflammation but difficult to pinpoint. The physio seemed to think a possibility. I walked and swam briefly yesterday and now have had a sofa day I wasn’t intending and don’t want to be on. I have a 1 year old granddaughter to help with and want to be fully fit to do so. Dorset lady in particular is very helpful and a mine of information, as are others. Thank you all. Happy Easter too!

[PMRpro Ambassador in reply to Pollyone]

"I have seen in this forum a regime of lowering and then coming up and lowering again"

Not that we know of or would recommend - although I think someone said they did it and found it helped.

Are you thinking of the tapering where you introduce the new lower dose a day at a time? But you aren't raising the dose - you are sticking at the current dose otherwise.

[DorsetLady PMRGCAuk volunteer in reply to Pollyone]

I have seen in this forum a regime of lowering and then coming up and lowering again but it will need a search to find that

Do you mean dealing with a flare? If so, I have added the link in my reply to teach77 - if you mean a slower tapering regime, PMRpro has answered..

[PMRpro Ambassador in reply to DorsetLady]

Hadn't thought of the flare protocol!

[teach77 in reply to Pollyone]

Thank you Pollyone. Like you I walk swim and cycle but I can’t do what I used to and need to rest in the afternoons sometimes. As I have heard so many say, we need to listen to our bodies and not fight them! Happy Easter

[HeronNS in reply to Pollyone]

When we use a slow tapering method we gradually introduce a new lower dose rather than dropping the complete mg or half mg in one go. In that case one is not exactly raising the dose for a few days and then lowering, one is starting with the current dose and gradually introducing the new lower dose. First one day lower dose, followed by 4 or 6 days of the old dose, gradually shortening the distance between the days you take the new dose until eventually it's all new dose. Depending on the exact method this takes 4 to 6 weeks, similar to recommended reduction, but easier on the body and often more successful because less likely to trigger pred withdrawal pain which feels just like PMR pain although it should go away quickly, unlike a PMR flare. There is a post showing several slow tapers somewhere in the FAQ section.

[random901 in reply to HeronNS]

Thanks, Heron. Am about to reduce from 17.5 ( nearly 3 months) to 15, and will try this gradual introduction.

[sidra1968 in reply to random901]

I unfortunately didn't stay long enough at 17.5 (6 weeks roughly), tried to taper to 15 mg and within days the pains came back..now struggling with pain and had to go up to 25 again to cope. I have been atypical and needing higher doses than most people this entire 1 year and 3 months. I was thrilled to be relatively pain-free and finally at 17.5 mg..praying I can get back there again and will stay longer at it this time (like I had to do with 30 mg). Good luck with your taper. Mine has been a real rollercoaster from the beginning. I really hope yours works!

[HeronNS in reply to Pollyone]

Tapering plans in this list:

healthunlocked.com/pmrgcauk...

[Linlang]

you will get there! The war will be won,…… you have been given great advice…Good luck. Try to remain optimistic.

[Orange_2022]

I struggled to reduce at around 8mg and then again at 5mg. Stayed at 5mg for several weeks in the end after a flare (dealt with by taking an extra 5mg for a week) and reduced by the slow (i.e. 5 weeks or more) taper advised by Dorset Lady. Don't just drop by the half mg but alternate with the original dose - see the taper plan - that worked for me! The lower I've gone, the slower I've had to go.

[dougy8419]

First and foremost, you are not alone with this struggle. I was on pred for 3 1/2 years for PMR and GCA. It started when I was 57, very fit and active. It is a slow process and cant be rushed. Finding a good rheumy is key. What you've been told on this forum is true for many of us, in a flare go back 5mg. from when it started. My rheumatologist at Johns Hopkins in Baltimore was excellent. She put me on 200 mg celebrex daily and finally my slow taper was successful.

I continue to take my celebrex daily, exercise on a sitting elliptical 40 min daily and eat an anti inflamatory plan. To date my PMR has not flared in over 3 years. Hope this may help.Prayers your way.

[Bramble2000]

Maybe you need to add in Methotrexate although that would need to be done via the Rheumatologist. It’s often used as a “steroid sparring” med when people are struggling to reduce the steroids. It’s not a magic fix and can take months to kick in but might be worth a try. All the best to you.

[Alebeau]

Have you seen a doctor for the shoulder issue?

Mine turned out to be bursitis which lasted for months

I too am a struggle to reduce presdnisone - now at 11 mg after 5 1/2 years

[cranberryt]

Sometimes it takes me several months at a dose before I can droo. 3 weeks is rarely enough time for most of us. 4 is the official recommendation but if after a few days of trying niggles return, I immediately return to my previous dose. Steroid withdrawal pain usually goes away after a few days. Sometimes I am at a dose for even 6 months. It’s taken me 5 years to get from 20mg to 1mg.