When PMR Goes Away

[fondofforest]

When first diagnosed with PMR and feeling like I was never going to be myself again, some friends, acquaintances and even a couple medical professionals assured me the diagnosis was the best of the myalgia’s to have to deal with because it is the one that actually goes away.

If you do some research, you quickly learn it isn’t quite that simple but that the prednisone will help you manage the effects of the PMR as you give it some time to do it’s nasty trip through your system.

I would love to hear from people here that follow the many stories and amazing helpful information as to what does it actually feel like to “recover from PMR?”

Do you follow the doctors advice and slowly taper the prednisone taking caution to slightly raise the dose if you are not quite symptom free, until one day you miraculously complete the tapering and feel like you can actually bounce out bed again instead of shuffling around for the first few hours of the day?

What will it even feel like, will I just be pain free and not obsessed with every tiny strange feeling or new pain?

I know at least two people who were diagnosed, started Pred at 15mg followed by 12.5mg a week later and then did a slow taper from 10mg down at 1mg a month and they were fine.

Are they just the exception to the rule not needing other medications like Methotrexate or Hydroxychloroquine and Alendronate added to the mix during the process because that seems to be what makes it most difficult to determine how you actually, “Feel,” as you try to regain your footing!

[Daffodilia]

Since 2018 I have tapered from 40 mg of pred to 6 - finding hard to get lower but GP doesn’t refer to hospital if under 7.5 - I am happy with that - life is good - pace yourself and good luck

[fondofforest in reply to Daffodilia]

Thank you so much Daffodilia!

[Bridge31]

An interesting post. I will look forward to hearing some answers from people who have knowledge of recovery.

[fondofforest in reply to Bridge31]

Thanks Bridge31,

I knew in writing my question it might be a little unusual because as PMRpro mentions you don’t necessarily write in or seek out a support group if everything goes according to schedule and you have no more questions but it is so wonderful to hear the range of other peoples stories and to learn that the questions do have some answers!

[PMRpro Ambassador]

Bear in mind that the nature of an online support forum is that the majority of people are likely to be the ones who have problems and who have no support from their doctors. Many people DO taper the dose pretty much in line with the way their doctor says and get to at least very low doses of pred and very often off in a few years. Most experienced GPs know it isn't always that simple and will not worry at 3 or even 4 years at low dose pred. I do know several who got off pred in a couple of years as expected, some developed PMR again and although the journey was a bit different they came out the other side and are living live as they did before.

You are actually not likely to find that many here who did have journeys like that - they have headed off into the world to get on with life. There are a few who have stuck around but not many. And there are quite a few of us who have had PMR for a longer time but who find managing it not too much of a problem. If you adjust the timing of your pred it is perfectly possible to have a decent morning without having to wait for it to take effect. I am lucky enough to get the delayed release version that I take at night, it releases at 2am which is the ideal time to take your pred and I have NEVER had PMR morning stiffness nor do I have any return of symptoms late in the day as the effect wears off, as for me the antiinflammatory effect lasts a full 24 hours. If you are someone for whom it doesn't last until the next dose is due then splitting the dose can make a tremendous difference, taking about 2/3 of the dose in the morning and the rest later enough in the day to extend the symptom relief to next morning.

There are things I can't do now, partly because of PMR but a lot because of age. I have had PMR symptoms for 20 years but in the earlier days it didn't stop me travelling - even the 5 years I had it undiagnosed and untreated. I continued to ski though I did have to change my habits, shorter runs and shorter days but I live at the bottom of a ski run and had an annual season ticket anyway. I moved here to be able to walk in the mountains - that had to be curtailed though. I adapted my lifestyle - but that applies with many chronic illnesses and one thing to be said about PMR is that it doesn't kill and is doesn't damage joints like RA does. And for a large majority of people who develop PMR do recover as it burns out and goes into remission after several years.

The experts have finally cottoned on to the idea that it ISN'T a simple "one size fits all" disorder and it can be very disabling unless managed well. But on the whole, it is preferable to many illnesses.

[fondofforest in reply to PMRpro]

Dear PMRpro

As usual I cannot thank you enough! Your absolutely incredible wealth of knowledge is beyond amazing and I so appreciate that you tell it like it is without sugar coating the truth while still helping us to realize that with certain modifications to some of your activities you can handle this illness.

Obviously you are a person who doesn’t sit on the sidelines waiting for someone else to solve the problem and without you here a lot of us would be constantly swimming upstream as the saying goes.

Thank you for you patience, your knowledge and the willingness to share it and your time.

Sometimes people just have that innate ability to be a gift to others and you certainly are one🙏

[PMRpro Ambassador in reply to fondofforest]

Thank you!

[Ozziedays]

I started on 25mg pred and got to zero almost exactly two years later. The PMR pain disappeared within about 48hrs of starting pred and after that it was just the side effects of pred.

I had MTX added in around the end of the first year as my blood markers were raised twice (higher than they had been at diagnosis, very odd as I’d no symptoms) at around 5mg.

My tapering was adjusted along the way with my last year being 0.5mg every 4 weeks. In the last few months I even slowed that down by reducing 0.25mg the first of the four weeks (cutting tablets meant it wasn’t hugely accurate and maybe made no difference but I was happy doing it after discovering this website and the need for careful tapering).

I returned to UK from Australia shortly after I’d got to zero pred but was still taking MTX under my Australian rheumatology plan. Handover to my UK GP and rheumatology was straightforward and they were happy to continue the plan, however, I started to have slightly raised liver enzymes (that returned to normal after stopping MTX for 2 weeks) and so we agreed that I cease MTX (by this time I’d dropped from a starting dose of 20mg to 15mg and then 10mg). I noticed no difference without it.

As for feeling that I’m ‘back to normal’, it’s been a gradual process. Successfully reducing pred got rid of the horrid side effects from that (soaking sweats, tiredness), and meant I could get out and about and do more, be more active and social. Once off pred, I was quite sensitive to watching for any flare symptoms, and protective of myself, but this gradually diminished and one day I realised I was no longer planning my day or activities around rest stops or places I could take a seat if I came over tired or felt weak. I think there’s a psychological element as to how you see yourself, your sense of self, and I’m no longer viewing myself as having a limiting condition. Interestingly, I’m still classified by the NHS as having a compromised immune system for Covid boosters but I’m not unhappy with that as I’m keen to have them. I’m not as fit as I was pre PMR but then I’m older (65), and I’m taking steps (literally!) to address that.

Sorry if this is too long, I feel very fortunate indeed to have had what seems to be a self-limiting condition, and a relatively smooth journey, and I wish you well. I didn’t discover this website until I was almost off pred and it would have been very helpful from first diagnosis.

[PMRpro Ambassador in reply to Ozziedays]

"my blood markers were raised twice (higher than they had been at diagnosis, very odd as I’d no symptoms"

The markers are extremely non-specific, a cold or injury, even stress, will raise them and a raised ESR/CRP without PMR symptoms shouldn't result in a kneejerk raising of steroid dose - and if the patient is already down to 5mg it shouldn't result in the introduction of MTX either. I know Prof Mackie is stunned that doctors do so.

Meant to ask the other day - how did you deal with the return to the UK and getting rheumy cover to continue the MTX? Someone else has moved from Guernsey to the north of England and is having to wait for a rheumy appointment which will be a problem with the biologic she has been on and since that applies to me, I'm a bit concerned about continuity if I were to return.

[Ozziedays in reply to PMRpro]

The things you learn after the event (and another example of how useful this site would have been to me back in 2020/21).

My GP practice here in Edinburgh has a Shared Care Protocol for PMR with the local rheumatology department and so was in touch with them directly about my continuation of MTX. I had to wait a few months to see Prof Gray ( rheumatologist at WGH ) who went over my history and records sent over from Oz to confirm her preferred way forward that would have seen me taper MTX to 5mg about now and then zero after a few months. As things turned out I ceased MTX last November, 6 months earlier. I do sometimes wonder what might have happened if I’d just stuck with careful pred tapering but it’s all in the past now.

[PMRpro Ambassador in reply to Ozziedays]

Oh right, in Scotland, That's useful because if I do come back to the UK on a permanent basis it will be to Carnock, just west of Dunfermline. My daughter's current practice does shared care for ADHD so she is hoping to stay with them although Rosyth is only just in Inverkeithing's catchment and Carnock definitely not. Fife rheumatology is almost nonexistent I'm told so that is the next hurdle!!!!

[Ozziedays in reply to PMRpro]

it’s a small world - I was born in Dunfermline, brought up on a farm near Culross and had school friends who lived in Carnock (Carneil Farm?).

Yes, Fife NHS was always second fiddle to Edinburgh, I had many childhood interventions (eyes, tonsils etc) referred to Edinburgh as Fife wasn’t placed to do them. That will have changed I expect but it’s now the shortage of GPs and hugely inflated waiting lists post Covid (they were pretty awful pre pandemic - part of my job was reporting on them in another Health Board area). If you google NHS Fife Rheumatology there appears to be a website that might be of interest to you or provide further links / contacts for info on shared services protocols etc.

[PMRpro Ambassador in reply to Ozziedays]

I tend to go straight to Lorna Neil for PMR info, in Dundee and important part of the PMR Scotland charity - another small world factoid, our husbands had actually worked in the same department in N/W but I only met her through PMR!! When I'm over I will stick my head in the door of the Oakley practice and see what's what there, The Inverkeithing practice is superb despite the struggles with staff but too far for me to swing it - my daughter may manage to stay with the specialist experience they have relating to her. She works a bit in Fife now but mainly Edinburgh hospitals.

[Fifebornlass in reply to PMRpro]

I am in Dunfermline and since my diagnosis in December 23 I have had very little support. I saw the doctor when I caught a virus in March and felt very unwell. I asked if i should be having any checkups and she said no you only need to see us if you are unwell. Go back up to 15mg then follow the tapering schedule. This site has been my support.

[PMRpro Ambassador in reply to Fifebornlass]

We'll have to meet up! There is an Edinburgh support group but the thought of getting in there from the sticks doesn't appeal! Maybe there are enough local Fifers to have a coffee group.

[fondofforest in reply to Ozziedays]

Dear Ozziedays,

Thank you so much for the length of your reply because it mirrors my story almost exactly. I am also 65 and had no symptoms after starting the prednisone at 15mg until I got down to about 7mg.

Then I started to have quite a few aches and pains but my blood markers never reached abnormal again. My rheumatologist suggested I try Methotrexate for the residual pain but my system could not tolerate it at all. Since my blood tests still look good I have chosen to simply taper the prednisone very slowly and am now down to 3mg from which I will use the plan presented here to taper the rest of the way. I already am having some days where I forget all about the worry that I will relapse so I think things are on the right track!

[Ozziedays in reply to fondofforest]

It does seem to be very individual, perhaps not surprising since we all have different histories and lives. I think I was started on 25mg because I’d had symptoms for quite a while before I saw my GP. If your plan is working for you, stick with it! And I can relate to the ‘forgetting to worry about relapsing’ - it happens more often as time passes and I wish you well

[RedRum1968]

I can’t give you complete reassurance from start to finish of my journey as it’s not completely over, but I started getting symptoms in April 2023 and was diagnosed with PMR. However, the Consultant said he didn’t think I had PMR and asked me to come off steroids, which I did. Wham bam!! 4-5 days later I was right back where I started with the pain. So my GP (who I now trust more than that particular Consultant) put me back on 15mg of steroids. I tapered from 15mg to 12.5mg, then 1 mg drop monthly until I got to 8. From that point I reduced 0.5mg every 3 weeks. I’m now on 2mg. I can honestly say, apart from slightly achey shoulders (very mild) and stiffness in my left hand each time I drop (which subsides after a week), I am pretty much feeling my normal self. I ride my horse nearly every day, do a bit of gardening and go on long walks. The only thing that is lingering is the fatigue. At about 7pm I’m finished for. I’m hoping that it’s just the steroids or my adrenals. Happy to keep people updated as I reduce down further and also happy to stay on the group forum if I manage completely get off the steroids without a relapse.

[fondofforest in reply to RedRum1968]

Dear RedRum 1968

Thank you so much for the reply, I am down to 3mg and am going to hit the 2 year mark this coming August so I think I am doing well. Because I did have a recurrence of quite a bit of soreness when I got to around 7mg from 15mg my rheumatologist had me try Methotrexate with the Prednisone but I just could not tolerate it. Now that so many of you have answered my post I feel so much more confident and comfortable in simply taking my time in the final tapering and not worrying if I get completely down to zero by the exact 2 year mark.

[LabradorH]

Hello,

What it feels like to me after 2 years of PMR, following advice including from this good forum. and being off of prednisone for 5 months now, is that it takes many steps. It is not miraculous but I have been able to cautiously resume most activities. Recently I have returned to gym workouts, three weekly, with the help of a knowledgeable trainer. That is really helping with upper body circulation and recovery of mobility. It’s a slow steady process.

So overall, it is similar to recovering from serious accident injuries. It takes perseverance, I am ‘damaged goods’, that isn’t going away, and I can be cautiously optimistic.

Best wishes.

[fondofforest in reply to LabradorH]

Hi LabradorH

Thanks so much!! The number of people who answered my question have helped so much and I’m sure others who use this site will be helped as well. Being cautiously optimistic is exactly where I am right now at 3mg of Prednisone coming up to my 2 year anniversary since diagnosis.

After all aren’t we all damaged goods!😂

[LabradorH in reply to fondofforest]

It sounds like you are progressing well. 👍

[HeronNS]

I tapered, beginning in mid 2015, from 15 mg to 3 mg in a year, slowing the taper as the dose lowered. It took another year to get to 1.5, but in fact I spent most of the next six or seven years at or about 2 or 2.5, eventually tapering this February, so far successfully, to zero after nearly nine years on pred....

[Bridge31 in reply to HeronNS]

I think that’s going to be me. Almost 5 years now and twice I’ve got to to 3.5 but couldn’t cope at that dose.

Having another try over the next 7 weeks.

[HeronNS in reply to Bridge31]

Good Luck. That's all we can do really, just keep kicking the can to see if will, this time, move further along the road!

[whitefishbay]

My PMR went away but of course, as you age other things appear like osteoarthritis, (vestibular schwannoma - benign brain turmour so deaf in right ear), stiffness, sore elbow and very sore single finger atm. Some days are good, some less good but you just have to keep going. What helps is getting out and also connecting with friends on Health Unlocked. Always good info and sympathy.