I am in a quandary.

[SudsSuds]

I have just updated my profile which gives quite a detailed picture of where I am. What I don't know is what to do next. Go to the Consultant or keep going as I am. If somebody could look at my profile and offer some thoughts I would be very grateful.

[SudsSuds]

I suppose my other question is - Is my PMR back or is it soemthing else?

[PMRpro Ambassador in reply to SudsSuds]

The most likely thing is the PMR. It all fits and it doesn't often morph into something else.

[PMRpro Ambassador]

Shame you didn't copy and paste your story into the post, it would be easier to check what I'm saying is relevant if it were on the same page! I hope I get all in and I;m sorry if it sounds a bit disjointed.

From your story, it looks to me as if you were actually being managed OK at a low dose of about 6mg - and the reason your symptoms returned was because you are never reducing relentlessly to zero, you are looking for the lowest effective dose, and you overshot. When your body rebels at a similar dose a few times it is telling you you have arrived.

You had a textbook presentation and response to pred - and had you stuck at 6mg you would probably have done far better than you have. You have had a PET-CT scan - do you know what it showed? It is pretty definitive for PMR.

Is that September 2020? That is barely 3 years ago and PMR frequently lasts longer than that so it isn't surprising the symptoms have returned. Since you are in the UK, if the diagnosis is PMR then there is no option of a biologic unless Kevzara has been approved, I don't think it has. The other biologic that would work for PMR is tocilizumab/Actemra and that is only approved for GCA and RA in the UK and only for 1 year for GCA. Pred is the option for PMR in the UK,

I suspect if you were started at about 10mg pred again and tapered as we suggest you would probably be fine on 5mg or less if you are lucky. What were your side effects? Most pred side effects can be managed pretty well when you know how. After 3 years the disease activity is probably lower than it was and it is worth trying. As long as the disease activity is there, you will need some pred to relieve symptoms and there aren't really any other options to use on their own although some patients do well in getting to a lower dose of pred with methotrexate or leflunomide.

[SudsSuds in reply to PMRpro]

In April 2020 I suffered an inguinal hernia. In June 2020 I had a bout of shingles. In August 2020 I had the hernia repaired using keyhole surgery. All of this was during Covid and quite stressful especially having an operation without family and friends around.

I had to self isolate both before and after surgery a total of five weeks. It was during this period after the operation that I first noticed pain "at the top of the inside of my thighs" as I eventually described it to my GP. Also the stiffness started. Not overnight but over some time gradually getting worse. I put it down to being stuck in one room and not really being able to move about much.

I had a call with my GP in September. He ordered blood tests which showed that my inflammation "markers" were high. He immediately suspected PMR something I had not heard of. He prescribed 15mg of pred with tapering to 12.5mg, 10mg then reducing by 1mg every 4-6 weeks.

By this time I was very very stiff. Mainly in the pelvic area my shoulders were less affected. My buttocks were very painful so I could not sit easily. But it is the stiffness I recall most. I felt I had aged 20 years. Until then I was very active and did not regard myself as old. But PMR changed that. I could hardly dress myself, had to roll out of bed and crawl and bump down the stairs and pull myself up. I suddenly felt vulnerable.

I took my first dose of pred about 8.00 one morning. By lunchtime I was so much better. For me it was like a miracle. Virtually all the pain and stiffness were gone. I started tapering. All went well until I got to 4 or 5 mg of pred and my symptoms returned and my blood markers were way outside the top of the range. My GP put me back on 10mg of pred. My symptoms disappeared. I tapered to 5mg back came the symptoms. My GP put me back on 10mg and referred me to rheumatologist. Tapered again 6 mg and the symptoms returned about the time I saw the consultant (June 2022). She organised a special CT scan (can't remember the name) but I had to get to 5mg to have it or the inflammation might be masked. I received the referral just as I got to 5mg but it was more than a struggle. Back to 10mg.

The consultant also told me about the ABBV-154 clinical study. I was more than interested because it was studying a drug that might replace steroids with fewer side effects. Steroid side effects were building up so I went for the trial. I was eligible and started the trial around September 2022. I was tapering steroids at 1mg every 2 weeks so faster than I hade been used to. I had tapered off steroids by January 2023. I was given the "double" dose of ABBV-154 being 340mg every 2 weeks. I had no discernible ill effects and my PMR symptoms did not return.

I stayed on the study drug until June 2023 when the study was stopped prematurely because too may patients were getting serious infections (including hospitalisations) without any benefit compared to steroids being observed. I felt ok at the end of the study.

Which brings me to the recent past and the hear and now. Over the last 2 months what I feel are mild (compared to before) symptoms that are like PMR. The stiffness has returned to my legs but I can function. My shoulders are painful and raising my arms especially so. My neck gets very stiff and I cannot raise my head off the pillow. I have trouble getting up from my chair and the car, especially after sitting/driving for any length of time. My balance is poor. I feel tired and lot. I have "brain fog" especially for numbers. I spent my working life dealing with numbers for much of the time but now I carrying out a simple calculation can be beyond me. I spend ages checking everything.

My GP give me blood test and one marker was slightly raised -I know from this group that blood tests are not determinative.

I want to avoid steroids if I can and I have the option to go back to the consultant who will consider prescribing a "biologic" instead. I have not decided yet what to do.

[SudsSuds in reply to SudsSuds]

Your reply has helped my understanding a lot. I have copied my story now. I have looked at my old notes and letters.

The PET-CT scan showed inflammation in the manubrium and sternoclavicular joints. Which are part of the spine and shoulder google tells me.

Yes I was diagnosed in September 2020. I was told the average time was 2 years. I can now see from this group that is optimistic to say the least but at the time I was hoping it would end.

I find it difficult to separate PMR symptoms from pred side effects. But I think the pred has wasted my muscles quite a bit, weakened me quite a lot, created what I call brain fog, memory, decision making, concentration and a complete blank on number calculations sometimes.

I think I made a mistake with the "biologic". I may have heard that during the study. I thought I recognised methotrexate and going through my papers I found a leaflet on that drug. My consultant must have given it to me.

I also had Covid last year sometime. I was quite unwell until I got Paxlovid which helped a lot quickly. I had trouble with 111 so it took a couple of days.

Going through my notes is quite enlightening. I could write today the same list of symptoms as in January 2021 with pain and stiffness in, shoulders, neck, hips/buttocks, back/torso/trunk, knees and elbows. The stiffness and pain is less severe now.

A couple of questions. Can PMR be worse on one side - my right side is worse. Can it pop up with no warning away from the usual places - my right forearm is very painful. I cannot put any load into it - e.g. lift a kettle.

All in all it is back to the consultant for me. When I was well on the study drug she scheduled a follow up appt for next May. But she also said I should get in touch if things take a turn for the worst. I will do that on Monday. Thank you.

[PMRpro Ambassador in reply to SudsSuds]

It was really an observation that although it is super-helpful to have all that detail in the profile to refer to for context with a short question, since you were asking a lot about it, being able to refer back to the info on the same page rather than having to switch between tabs would have helped. But it was done.

All those effects you mention can be as much due to PMR as pred - I had it for 5 years without pred, I suffered almost all of them. I can remember checking translations again and again and reading a paragraph and not having a clue what it said - in either language!

PMR is mostly bilateral but I find it can be worse on one side than the other - especially when myofascial pain syndrome is involved alongside more typical PMR or in the early stages of development or during recovery with pred.

The forearm may well be tendonitis and you have worsened it by overuse. In the early untreated days I struggled to lift a mug - never mind the kettle to fill the teapot!! On the other hand, if you get sudden episodes that move around but affect joints, it may be worth considering palindromic rheumatism - rare but has been confused with PMR a few times.

[SudsSuds in reply to PMRpro]

No wonder I could not decide the cause. Thanks again for responding.

[DorsetLady PMRGCAuk volunteer]

Sounds as if your PMR never went away - but was initially controlled by the Pred [when at the correct level] but tapered too quickly on more than one occasion. Also sounded as if the ABBV-154 trial also it kept it under control -but since that finished the inflammation has built up again. No great surprise really , PMR can last a lot longer than the timescale often touted.

Your symptoms and the blood markers would lead most to say.. it’s resurfaced.

As for a biologic, that’s not an option for PMR in UK, so your only real way is Pred.. but at the right dose and without being tapered too quickly. If you take prompt action you won’t need to restart at 15mg, but the longer you leave it, the more Pred you will require.

PS - no quandary really…only one sensible option.

[SudsSuds in reply to DorsetLady]

I have fully replied to PMRpro which I think covers your thoughts. But suffice to say I best not stay in denial. Off back to the hospital.

[DorsetLady PMRGCAuk volunteer in reply to SudsSuds]

Just reading that - as you say symptoms are virtually same as 2021, think you have your answer,

PMR is usually bilateral but it can be worse one side at the beginning unless you have done anything to your right arm/shoulder that you are aware of. PMR dies have a habit of attacking weak spots….

Please let us know how you get on when discuss next week. ..and as you say no point being in denial

[SudsSuds in reply to DorsetLady]

Will do

[Lenore58]

You’ve already heard from the most knowledgeable people on this site. I’d throw Piglette in there too. I feel like every valuable thing I’ve learned I’ve learned from them.

One thing I learned from them that wasn’t mentioned yet is that when tapering, if you have a flare, you needn’t necessarily go all the way up to the starting dose, but just to the last effective dose of pred.

Also, that once you get to 7, you must taper more slowly, because that’s when people begin to have trouble tapering.

[SudsSuds in reply to Lenore58]

Yes thank you. At the time I just followed the protocol my GP suggested. I have learned from this group there are better ways to taper.

[Bcol]

Everything that PMRPro and DL have said but also think about tapering at 0.5mg particularly when you get to doses under 10mg. Plenty of tapering plans in the FAQ'S, but whichever you choose don't rush and only move on down when you feel ready.

[SudsSuds in reply to Bcol]

That is a good thought. Nothing sacred about 1mg at a time. I'll suggest it when I see the doc.

[SudsSuds]

By way of update I saw a rheumy today my own being on holiday. She consulted with the doctor that ran the clinical study who probably knows more about my PMR than any other professional. The upshot is I am back on 10mg of pred for 4 weeks with no tapering and then I have another appointment to review where I am including the results of the blood test done today. The review will also consider the possible use of methotrexate. I suppose I am putting this out there to see what people think.

[DorsetLady PMRGCAuk volunteer in reply to SudsSuds]

Doctors have probably done the correct thing - although you might have got away with a slightly smaller initial dose

See how you are at the 4 weeks mark -and then decisions can be made.

Good luck.

[SudsSuds in reply to DorsetLady]

I thought about asking to start a bit lower but I started having doubts about what point I started having symptoms previously 5/6/7 mg?? Thank you for wishing me good luck.

[PMRpro Ambassador in reply to SudsSuds]

If you want lots of replies - post it as a new thread, If DL and I will do, needn't bother!

They obviously think it is the PMR, as we do. As I said before, you were probably doing OK at 6mg and to be honest, if the 10mg gets you to a happy place and then you can taper slowly to 6mg I would say no to MTX. So at least postpone that decision.

Thinking is beginning to come around to what we have said for a while: if you can get to moderate single figures on your own, there is not much justification for adding another pretty powerful drug with unpleasant adverse effects. Low doses of pred probably have fewer long term adverse effects than a combo of pred and MTX - and there is no guarantee that the MTX will get you to a lower dose of pred. It MIGHT, but it might not. If you were stuck above 10mg I would say try it. if you are stuck well below 10mg - I'm far from sure it is worth it.

[SudsSuds]

I wondered about a new thread. On balance I will do that just to get as many views as possible. Maybe somebody has had/is having a similar experience. On the MTX point I agree wholeheartedly, I do not want another drug if I can avoid it. I raised the topic really because it had been mentioned as an option when I chose the clinical study. Thank you for your thoughts.