Advice please on symptom / pain control on pred and W London rheumatologist

[Grannyasbo]

Morning all. I have a few questions if I may about my symptoms and pred. Been on 15mg a day for nearly 3 weeks which I now take as soon as I wake (usually about 7.30am). My pain comes on around 30/40 mins after waking when I get up and start moving around and doing things eg empty dishwasher. Not too bad (moderate). If I don’t do anything physical it reduces over the day to low/ almost none by evening. If I do anything physical even very light (15 mins gentle dead heading roses) it comes back and let’s me know it’s there. Stress causes headache (not a GCA type am relived to say) and fatigue.

I have in last week developed painful wrists / pads on hands, bilateral and they feel sort of hot inside. Worried about RA now. My GP is great and being very diligent (but seems to follow guidelines to the letter) and is still not convinced I have PMR, I’m open to this discussion but think I do... probably. I’m talking with her on Thursday again. I know from this forum (🙏) that it can take 6 weeks to get full benefits of pred.

So here are my questions:

- in order to “spring clean” the inflammation is the aim to get totally pain free first before any taper is considered?

- if that’s right I feel I should at least do the 6 weeks before anything else, do you think that’s right?

- in case my gp wants to refer me to rheumatologist can anyone recommend a good PMR rheumatologist in west London. My local Nhs trusts are Imperial or Chelsea and Westminster. But very willing to go further for a good one.

Thank you all so much for this forum. Couldn’t do it without you. X

[DorsetLady PMRGCAuk volunteer]

Hi,

Answers -

1.Ideally the built up inflammation should be cleared (so as pain free as possible) - otherwise the new daily shedding just adds more each time, and it becomes more difficult to control.

2. You may need 6 weeks for that to happen, but you may also need more Pred. Although 15mg is the usual starting dose, it may not be enough for your circumstances (the guidelines state lowest dose between 12.5-25 to get relief).

3. Can’t help - sorry!

[Grannyasbo in reply to DorsetLady]

Thank you. Confirming what I thought. Adds to my confidence level when thinking about and prepping to talk to GP. Really helpful when I feel a little unsure to get the expert patient view.

[Bcol in reply to Grannyasbo]

Good afternoon, same as DL really, my first doc started me on 15mg and after 2 days another doc, same practice, upped me to 30mg for 5 days, 25mg for 5 days then I've slowly tapered down from 20 Mg since. Pain went pretty much immediately from the higher dose.

[Grannyasbo in reply to Bcol]

Hi Bcol. Thanks for sharing your experiences. Really helpful and much appreciated. Having a bit of a worried day today full of doubts. I’ll see what my gp says and am thinking about what I would like to happen next. 🙏

[madhouse1 in reply to Bcol]

My pain went immediately too!

[piglette]

If you have a good GP which it sounds like, you may not need a rheumatologist unless your GP wants to send you to one. Some people are never totally pain free, that is in fact quite a lot of us. PMR is life changing so you have to give into it and rest rest rest. It is possible you do not have PMR, 40% of people initially diagnosed with it do not have it. RA affects the joints while PMR affects the muscles.

[Grannyasbo in reply to piglette]

Thanks piglette. Am keeping an open mind about PMR diagnosis but seems that the pred treatment is a key way to rule it in or out. My pain went down from severe (8+ on standard numerical pain scale) to moderate (5-6) at its worst after the pred kicked in after a couple of days. And now it’s around 4-5. My pattern is wake up feel ok. Have tea in bed feel ok. Get up and do ablutions start the day (eg do dishwasher) pain starts and is moderate (4-5 occasionally only 3). Then as day goes on reducing to mild or virtually nothing (1-2) by evening then sleep, pain free and repeat! Been tracking it very carefully as you can see.

I’ll discuss with gp but really quite frightened that she will decide it’s not PMR and take me off pred and I’ll be back to the horror days of severe pain and sleepless nights with it too.

[piglette in reply to Grannyasbo]

It does sound like PMR. Some people find that it helps splitting the dose. Perhaps you should have started at a slightly higher dose of course. Tell the GP that the steroids have helped but perhaps you need a higher dose. Stick to your guns.

[PMRpro Ambassador]

I would also be doubful about PMR since you say the pain gets worse when you get up and move around and I always found it improved with gentle movement - I had PMR for 5 years without pred and the best days were the ones I had an aquafit class at 9.30, after that I could move, even though the pain was still present.

No - shouldn't take 6 weeks, you should get at least 70% relief within at most a couple of weeks and if 15mg doesn't work you should be told to try 20mg. The guidelines say the lowest effective dose in the range 12.5-25mg.

ard.bmj.com/content/74/10/1799

Rod Hughes in Chertsey would be my rheumy of choice - but then, I'd class that as west London!!! The London hospitals don't seem very good at PMR and GCA!!!

[Grannyasbo]

Hi pmrpro. Thanks for reply and rheumy recommendation. I just replied to piglette with my pain pattern and open mind (doubts?) on diagnosis and my fears. But I guess we all have these. This is hard and am having a bit of a hard day today. So really appreciate your message and advice. Guess I’ll have to see how the story unfolds. It is good as I say to have my PMR support posse on my side though. 🙏

[Zebedee44]

Rod Hughes at Chertsey would be my recommendation too. My GP actually started me on 50mg for three days when blood tests suggested PMR, with a fast reduction to 10 mg and below. But frankly he didn’t have a clue!

[Zebedee44]

Good bless this forum and all who contribute to it with their own personal experience.