Disappointed And Unsure About Progress

[Gc2596]

I've only just found this site and already learning. May I outline my journey so far and hope helpful as opposed to waffle.

Early April 2024 I slipped on a slimy wet paving stone and fell very heavily on my left thigh. After a couple of weeks then top of opposite arm started to be painful and achy. Struggling to get any relief from paracetamol/ibuprofen or even Naproxen (take rarely for osteoarthritis in fingers and one toe) I spoke initially to the Pharmacist who advised see doctor. Co-codamol 15/500 prescribed and x-ray. The results fine and indeed have "well preserved hips", which I'll take! By now pain spread across shoulders and down both arms and backs of thighs/buttocks. When I mentioned arm doctor said to do with fall, even though opposite side. I'm sure everyone knows how debilitating it is and got to stage of little sleep and wondering how to even get the bedclothes off me in a morning. Physiotherapist suggested doing bloods though thought Tendonitis as did doctor and a private Osteopath. I have a close friend with the condition (hadn't heard of PMR before she got it) so I had queried. The blood results changed the diagnosis to PMR with crp-41 esr-36. So on 2nd July started 15mg Prednisolone. 22nd July crp-4 esr-6 The following is my titration:-

7/8 -12.5mg

28/8-10 mg(very slight discomfort around neck but started after saw doctor and thought manageable)

25/9-7.5mg (same discomfort)

16/10-5mg (after 3 weeks a lot more achy and around shoulders)

25/11-10mg (crp-15 esr-16) Doctor increased

6/1/25-9mg (doctor said if felt on top of it could reduce by 1mg before saw him)

20/1-10mg (within 2 days of drop felt achy. crp-4 esr-6)

That's where I am at the moment.

I'd mentioned previously about a calcium supplement but doctor said as reducing just make sure have plenty in diet. This week I brought up my friend having Alendronic Acid and he thanked me for reminding (as been on Pref 6 months) and after talking about staying upright etc. and looking after teeth (which do) prescribed 4 to see how get on taking and referred for Dexa scan. After reading more I'm minded to wait for results before considering as concerned about possible effects. I take Vit D3(1000iu-year round now), cod liver oil with omega 3, vitamin C and zinc, glucosamine and chrondroitin (osteo arth). I lost 6lbs before diagnosis and just put 3lbs back. I'm 5'4" and weigh 8st9lbs. I'm always active (except when unable in early days) resting not really in my vocabulary and do 2 5-7mls walks a week and twice daily 20-30mins with my dog. No real after effects from a long walk and conscious had a good appetite anyway but now even more so and don't want to put much more weight on.

Sorry about 'war and peace' but basically appreciate any thoughts or advice as feeling not much progress being made. What am I doing correctly or not? Am seeing the same doctor since diagnosis as he wants continuity.

Many thanks for reading, if you're not asleep by now!

[SnazzyD]

To recap, you were on 15mg for about 5 weeks and then dropped a whole 2.5mg. Then after only 3 weeks you dropped another 2.5mg to 10mg. Already sounding like a helter skelter. Indeed you had some discomfort by this point. The mantra here is not to reduce if you have symptoms but you were told to reduce. In just about 3 months you were at 5mg having been suffering symptoms for weeks. You are still uncomfortable having been raised to a level where you not coping before. On the good side, your really useful account doesn’t bring any surprises. On the bad side an awful lot more patience is going to be needed by the doctor.

Your lack of progress sounds like the reduction plan on paper coming up against of the reality of the PMR doing its own sweet thing as it always does. Pred is only dealing with the inflammation to make life manageable and the point of reducing is to find the lowest dose that controls your particular autoimmune activity level. It doesn’t cure anything so you have to tiptoe your way down slowly while it burns itself out over years not months normally. Blood results don’t always give a good guide to progress and can lag behind symptoms. In the presence of symptoms, a normal set of results doesn’t take precedence.

You’ll get more replies so sit tight.

[Gc2596 in reply to SnazzyD]

Thank you for your response SnazzyD. I have to take some responsibility, especially the 7.5mg to 5mg drop. I kept telling myself had an appointment in 2-3 weeks so would soldier on as the 2.5mg drops were the way to go and I'd be okey dokey before 2 years. Foolish eh! It was when I got really bad left buttock pain which made me feel every walking step knew big mistake. Once back to 10mg within 2 days buttock pain disappeared. The doctor this week said "we may have to accept 10mg your baseline at the moment". The plan is to keep there for 2 months then much slower reduction. Only been on 4 days and aching neck/shoulders improved but not entirely discomfort free. Worried too about my 5-7mls walking couple of days weekly and if overdoing that, although don't feel tired or any more achy. As a Walks Organiser it's a big part of my life, as is tending my large garden. Absolutely distraught at the onset when couldn't hardly do anything let alone garden/walk. Very appreciative of the information I'm finding out.

[SnazzyD in reply to Gc2596]

It is a real cruelty isn’t it? Having one’s joys out of reach. Same here with the garden. Gardening, I found, is a devil for inducing one to over do it!

[Nextoneplease in reply to SnazzyD]

Oh 100% true Snazzy 😣x

[Gc2596 in reply to SnazzyD]

Agree. I've always been 'I've started so I'll finish' 3 or even more hours later. Aargh!

[DorsetLady PMRGCAuk volunteer]

As SnazzyD has said, and so will others, too fast a taper. Even though the beginning is in guidelines there are many that cannot manage., but from 10-7.5mg - 5mg is bonkers… and I’m guessing your GP has little knowledge of PMR - many don’t and are used to prescribing Pred for acute illnesses where this approach may well work.

Suggest back to 1omg, get things well under control [stay at least a month, but 2 might be better considering what’s gone on before] and then reduce 1mg every 4-8 weeks [as stated in guidelines - relevant paragraph here- but in our view ignore the comment re alternate day reductions very rarely works!

This is tapering regime from guidelines -

The suggested regimen is:

. Daily prednisolone 15 mg for 3 weeks

. Then 12.5mg for 3 weeks

. Then 10mg for 4–6 weeks

. Then reduction by 1 mg every 4–8 weeks or alternate day reductions (e.g. 10/7.5mg alternate days, etc.)

**However, there is no consistent evidence for an ideal steroid regimen suitable for all patients.

Therefore, the approach to treatment must be flexible and tailored to the individual as there is heterogeneity in disease course.

Some benefit from a more gradual steroid taper.

Dose adjustment may be required for disease severity, comorbidity, side effects and patient wishes

You only need AA if DEXA scan proves necessary necessary - but I would add in a calcium supplement [Pred leaches it from bones, so you may need extra despite what doctor thinks] usually prescribed a vitD/Calcium supplement like AdcalD3.

Walking is as good an exercise as any -but just be aware not to overdo it, PMR affect muscles aren’t as resilient] and cutting carbs certainly helps the weight…

If you haven’t read these please do -

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

[Gc2596 in reply to DorsetLady]

Thank you DorsetLady. As you can see from my previous reply, before seeing yours, my doctor is indeed suggesting stay on 10mg for 2 months so that concurs with your thoughts. I'm hoping shortly the aches will subside. When I queried if they didn't I asked if should increase he said to contact him. From our conversations he himself has an autoimmune condition (don't know which) and just come off Prednisolone after 2 years. Also took Alendronic Acid though Iwould guess he's only in his mid to low 30s age group.I've now read the introduction link and will go onto the information on tapering.

Will, mindfully, continue my enjoyment of long walks.

Thank you for your time.

[Gc2596 in reply to Gc2596]

Can you tell me is the AdcalD3 on prescription only and would this be in addition to the 1000iu D3 I currently take or instead of?

[DorsetLady PMRGCAuk volunteer in reply to Gc2596]

Most get it on prescription, but you can buy it … some find that’s enough [its 3000mg Calcium/800IUVitD per day [taken as 2 doses].Perhaps discuss at next appt.

[Gc2596 in reply to DorsetLady]

Thank you. Will do. Need to get my notes amended to reflect that I've decided not to consider Alendronic Acid until after Dexa scan anyway.

[Excelsior80]

Hello and welcome! Your comment about the bedclothes brings it back ... before diagnosis I remember lying there thinking they were too heavy to move..... I started prednisolone a month before you, early June 2024 at 15mg but Ive had an easier time so far, 15 for 3 weeks, then 12.5 for 3 weeks then 10 for 6 weeks .... after 10. its drop 1mg every 6 weeks. This is a standard protocol but it doesnt work for lots of people, and the guidelines do say it has to be adjusted for the individual. Lots of people have to stay longer at higher doses before being able to reduce. Different levels of underlying pmr and inflammation I assume. I'm only taking prednisolone so far, (and thyroxine which I already took) plus a calcium supplement. Just had a dexa scan, not too bad so Im thinking exercise rather than Alendronic Acid for now, but others might disagree. Your doctor sounds nice, wanting continuity.

[Gc2596 in reply to Excelsior80]

Thank you for your welcome and it appears we are about the same age. I think it manifests itself on receipt of the State Pension 🙄. Apart from osteoarthritis (fingers/toe) until 9 months ago I would have said I was very healthy. I hope I can get on the same track as yourself as you sound to be doing very well.

[PMRpro Ambassador in reply to Gc2596]

" I think it manifests itself on receipt of the State Pension"

If only it had waited that long!!! Mine first appeared when I was still 51!!!!

[Gc2596 in reply to PMRpro]

Oh heck ☹️

[Excelsior80 in reply to Gc2596]

me too ... it was a big shock as I never had much wrong with me before, and happened when I was 2 months from retirement ... from planning lots of acivity after stopping work to fearing I would not be able to do anything I'd planned, and would stay exhausted, weak and in a lot of pain indefintely. I thought maybe it was a long covid type thing, and it was a relief to get a treatment that gave quality of life back. Ive been able to do some of my original plans, I just need care not to get too tired.

[Gc2596 in reply to Excelsior80]

Let's hope you're new found retirement isn't unduly affected. Should think myself lucky able to retire at 55.

[PMRpro Ambassador]

Hi and welcome! We don't mind W&P, we know more to make suggestions!

Having missed this yesterday evening, it was a busy day and I'm an hour ahead of you, there is next to nothing for me to add to what the others have already said.

You do seem to have an advantage in having a GP with something that needs pred - as long as he also accepts that everyone is different. and while he got off pred in 2 years - you may well not be so lucky.

Now you have survived the hiccup and your GP is happy to leave you at 10mg for a couple of months at least, you should be on a better course. That first bit was very fast but actually it worked down to 10mg, just. Had you been left at the starting dose a bit longer, you might have had a bigger buffer for starting to taper. I think of it as a bucket and a dripping tap - when the bucket is full to overflowing you feel the symptoms. The pred cures nothing, it doesn't switch off the tap, it just mops up the puddle around the overflowing bucket. If you stay at a higher dose a bit longer, it also has time to scoop out some of the accumulated inflammation and give you some leeway as you continue tapering.

You aren't reducing to head relentlessly for zero - you are tapering the dose to identify the lowest effective dose, a process also known as titration. Did you do chemistry at school? Same concept. You reduce until symptoms reappear and go back to where you were good. It doesn't mean you won't get lower, just not yet, And that is why a slower approach with smaller steps is so much better.

Weight and hunger pangs: cut your carbs, Possibly quite a lot but again, everyone is different. Pred causes the liver to release random spikes of glucose from the body stores in liver and muscle. This results in the release of more insulin than required because the body is expecting a meal to follow. The BS plunges - you crave carbs to bring it up again and a roller coaster starts. To keep the peaks lower, it pays to control what you CAN control, your dietary carbs. Moderating the swings in BS also helps the hunger.

The AA question is a bit more complicated than the dexascan result - it is not just bone density that matters, pred also has an effect on the structure of the bone and weakens it. My dexascan was always better than -1.6 which is the borderline for a bisphosphonate. But a year ago we nevertheless found a spinal compression fracture and I started a course of 3 annual bisphosphonate infusions. I was lucky, just one, tangocharlie had similar dexascan results to me so no bisphosphonates but she has multiple fractures and was in a lot of pain and very disabled. I had had severe back muscle pain for some time but there had been nothing to see on the spinal x-ray when it started. Since the infusion the back pain has steadily improved.

[Gc2596 in reply to PMRpro]

Thank you so much and have previously read your 'bucket' analogy which makes for greater understanding. Even after 4 days on the site communicating and reading about others in the same position is so beneficial. As mentioned in my initial post I'm already taking year round Vitamin D3 (1000iu). I did omit to say had my ovaries removed aged 37 but immediately on HRT until aged 50. I'm supposing this won't help the strength of my bones. Still going to wait for Dexa scan before considering AA. A neighbour had terrible long term reaction, hence my reluctance. I have decided to purchase some Vitamin K2-MK7 supplements. Looking at other posts a bit unsure which dosage to get (perhaps should have started new post?) Confusing as some measured in mcgs and others in ugs. Googling conversation just confused me more 🙄. Hopefully, if not yourself, someone can point me in the right direction. If it helps I weigh 55kgs, as some mention weight in calculating, just to complicate further. Many thanks for your time.

[PMRpro Ambassador in reply to Gc2596]

The longterm HRT is likely to have helped your bones though, the usual vit K2 recommended dose is about 180mcgs - I think your mcgs and ugs is the same thing, micrograms.That is a u with a little tail on the left arm of the u????

HeronNS is the vit K2 guru, I've tagged her so I hope she answers.

[Gc2596 in reply to PMRpro]

Thank you again!

[HeronNS in reply to Gc2596]

Hi, yes, mcg is the Roman alphabet way of writing when you don't have ready access to the Greek symbol. My Vitamin K2 is in 100 mcg capsules so I take two. I take one morning and one evening but I think it's okay to take the whole dose at once if more convenient. The recommendation of 180 mcg is the Australian RDA. As far as I know no other country has established a recommended dose. There is very little chance of taking too much of this vitamin, unlike other fat soluble vitamins which may build up over time with supplementation. Basically most of us are supplying our basic needs with a Vitamin K2 supplement, not adding to what is already in our diet (as with Vitamin A for example) because hardly any of us will be able to get much from our food these days.

[Gc2596 in reply to HeronNS]

Thank you so much for the information. I've just ordered K2 MK7 200mcgs. Hoping when I get my Dexa scan appointment/results will be more positive than negative outcome. Can but hope.

[HeronNS in reply to Gc2596]

🍀