Husband newly diagnosed.

[GeorgeReilly]

My husband was diagnosed with PMR two weeks ago. He had been in severe pain and was hardly able to move about because of the stiffness. He was like this for a long time but was fobbed off by his GP. Fortunately an appointment with a locum led to the diagnosis. He is on 15mg of prednisone which he takes in the morning. Although he is like a different man, he still suffers in the morning from tightness in his thighs and shoulders. His GP is already talking about decreasing his dose. I’m really concerned because I don’t think the steroids have been given a chance to work. Am I right to worry?

[DorsetLady PMRGCAuk volunteer]

Hi and welcome - to you and hubby

Some do still get a bit of stiffness in the morning, but 2 weeks on starting dose is not really long enough to clear out the accumulated inflammation as well as dealing with the new daily onslaught. Nor is 15mg always enough.

Although some guideline say 3 weeks, most of us think on here you need at least 4 and preferably 6 weeks.

My advice would be to stall GP if possible until your hubby feels better in the mornings.

Others will be along with their experiences - but in the meantime you might like to have a read through this post to give you both a better idea of what to expect - (read replies as well) -

healthunlocked.com/pmrgcauk...

[MrsNails]

Hi & Welcome 🌺

Realistically he needs to be on this dose for at least a month & there is also the most up to date information that suggests 20mg maybe more appropriate for some people.....

The inflammation needs to be ‘mopped up’ & then find the lowest dose that keeps the inflammation under control. Unfortunately, Prednisolone is not a ‘Cure’ it just reduces the inflammation & the PMR still rumbles along in the background.

What time does you husband generally wake, as he could take the Pred earlier to help with the stiffness.

Kind Regards

MrsN

[123-go]

Yes, you are absolutely right to be concerned. Your husband shouldn't consider reducing his current 15mg dose while he's still experiencing a limiting amount of stiffness. Other members will give you good advice; in the meantime, have a look at the related posts on the right of your screen.

Unfortunately, a number of GPS aren't familiar with PMR and this is borne out by the fact that in your husband's case his GP was unable to make a diagnosis. People in this group have found it necessary to educate their GP themselves!

[GeorgeReilly]

Thank you all for such prompt replies. It is so hard to advocate for yourself, especially when consultations are over the phone at present!

[Arflane97G]

I started on 15mg and stayed on that dosage for a month, was never entirely pain free (80% or so) but warm baths or even showers if I could not face clambering in and out of the bath really helped me get going in the mornings

[piglette]

A boost up to 20mg may help the morning stiffness, although a lot of people are never totally pain free even with pred. People tend to start to reduce after around 4 weeks. I started after 3.

[Charlie1boy]

Hi,I'm not a medic, so , in a way, this is not my advice, but it is what I experienced.

Luckily for me, my initial diagnosis was carried out by a GP, whose Mum had PMR., so she (the GP) knew all about it.

She started me on 20mg, then, after three days, moved me up to 30mgs. Others will say this was a bit high, but who was I to complain - I had never heard of PMR before.

I stayed at 30mg for three weeks, then gradually tapered down from there. My general rule was to stay at a dose for about four weeks, then, if all was well with the pain etc, reduce by no more than 10% at a time. This has worked well for me, and after six years I am now at 1mg a day.

With PMR, you will need to be very patient - it doesn't go away quickly, and, if you try to do too much physically, it will come back to bite!

So, keep in touch with this excellent forum - it has proved to be my lifeline.

Best of luck.

Paddy

[PMRpro Ambassador]

The stiffness first thing in the morning is a natural part of PMR - the new batch of inflammatory substances which is shed on a daily basis arrives at about 4 to 4.30am. The longer you wait after that to take the pred, the more inflammation develops and the more the pred has to do and the longer it will take. In some people the pred-effect doesn't last a full 24 hours, it can vary from 12 to 36 hours, depending on the person. So some people taking a single daily dose may have some stiffness developing before the next dose is due.

But the usual recommendation when using 15mg as a starting dose is 4 to 6 weeks until the symptoms have settled as much as they are going to. Then small reductions at at least 4 week intervals - no hurry, this disorder lasts years, not weeks or months.

This

rcpe.ac.uk/journal/issue/jo...

is an outline of an approach developed in Bristol UK which reduces the incidence of flares from 3 in 5 with most conventional tapering approaches to just 1 in 5. It is being used by the author of the paper who is now consultant in Luton UK. By our standards it is quite fast but probably better than most in the medical literature. The paper is aimed at GPs to help them manage patients without frequent recourse to a rheumatologist. I'd send him a copyif he tries to get him to taper before he is ready ...

When I first started pred I was put on a taper of 2 weeks each of 15/10/5 mg/day. Withink 6 hours the result was miraculous and I remained fine at 10 after 2 weeks and 5mg was alsoOK. But within 6 hours of missing the first 5mg dose I was worse than before - or maybe it felt worse than before because of the contrast! I have never been able to reduce the dose as well since then, and any time I have a flare it is harder.

[pata63]

Yes welcome. I'm relatively new here but have been helped greatly by the collective sharing of experiences.

Every body is different but my Prednisone regime went smoothly:

20 mg 1 month

15 mg 3 weeks

12.5 mg 3 weeks

10 mg 6 weeks

7.5 mg 3 weeks

6 mg 3 weeks

5 mg 22 months with occasional "sick day" doubled doses when I was in hospital a few times with acute bacterial prostatitis and a kidney stone and an inguinal hernia op and a week of gastroenteritis. That was my first half of 2020.

I am just now working on getting below 5 mg to 4.5 mg starting this year using a slow taper, but my first effort didn't succeed. Sick as a dog and in bed for 10 days starting with extreme exhaustion and progressing to daily migraine headaches and extreme light sensitivity. I'm back on 5 mg and am having appointments this week and next to discuss what to do next.

So yes, best plan to be in for the long haul. But my wife was delighted when I could move again after 9 months of having PMR but undiagnosed and untreated. I am so much nicer to have around when I'm not in pain.

[GeorgeReilly]

Hi all, I just wanted to update you. Having read the guidance document Dorset Lady linked in her reply, my husband now takes his steroids at 2am. What a difference this has made! So thank you from the bottom of my heart ❤️. We have stalled the GP this week, so he remains on 15mg.