Christmas help needed!

[Hazyma]

My lovely husband was diagnosed in May and started on 15 mgs which made him feel much better but still with niggles. He has continued down to 10mg and because of his scientific background he has been pleased with this! After 5 days of 10mg he has excruciating hip pain. I have been encouraging him to go back to15mg but he feels that is a backward step. What would you wise experienced people recommend?

[DorsetLady PMRGCAuk volunteer]

Hi Hazyma,

Sorry to hear about hubby. If his pain is only in one hip it may be myofascial pain syndrome, often associated with PMR, and he may find that ordinary pain killers help temporarily over the holidays. Doesn’t it always happen at the most inconvenient time. Physio or acupuncture may help in the longer term.

However, if his pain is bilateral it may well be his PMR, especially if he’s done a bit more than usual in the run up to Christmas. If that’s the case then extra Pred would be a good idea. I know he sees it as a retrograde step, but no point in being in pain!

Try the painkillers first, and if they do nothing then a bit more Pred is probably the only answer until he can speak to his doctor. If you’re in UK you could try NHS helpline, but I guess they’d probably say similar.

Do hope he feels better soon.

[Soraya_PMR]

From what you say I would guess he was OK at 11mg?

As I have no idea what leeway his doctors have given re increasing, and this forum can’t ‘prescribe’, I shall tell you my experience:

Started on 20 (in April) dropped with some stutters to 10 and flared. Tried to catch it at 12, unable to do so, went to 15 for a couple of days, then 14 couple of days, then now I’m at 13, my hip pain is improving slower than the rest of the flare, but it is getting there.

So maybe upping to 15 NOW, just temporarily then 14.......etc, will give lovely hubby a better outcome than I had by fannying around at 12. I should have just bitten the bullet and gone straight back up to 15. Silly me! So would not be a backward step, just a small kink on the general downward trajectory of his scientific graph. Better than a huge jump in his y coordinate later!

Wishing you both a good Christmas. Xx

[Sandy1947]

PMR does not follow rules. Pain relief is the only goal. Why not try 12 and if it doesn’t work increase? Hope he feels better.

[PMRpro Ambassador]

It isn't a backward step if he has gone too low to manage the inflammation - it will just get worse. If he's a scientist he should see that logic!!

I developed awful low back pain a few weeks ago - not in response to a reduction and probably sacroiliacitis. The GP did some needling which held it off for a week but it came back. So I added 2mg to the dose - result: no backache! I'm now on the way back to the 7mg I'd been on, managing alternate days 8 and 7 at present. Two consecutive days of 7mg is too low though, the back pain is there though not bad.

He could try a couple of days of 15mg and straight back to 11mg if that is where he was good - no need to taper again but I wouldn't go back to the 10mg for a while give it a few weeks before trying.

Is it both hips? Or just one? If it is one it could be trochanteric bursitis.

[Rugger]

As Soraya says, we don't know what's happening with your husband, but we can share what happens to us.

My PMR flared in the summer as bursitis, which started in one hip, then moved to the other hip and both shoulder joints! I was in denial that it could be the PMR, as the symptoms were so different from those when I was diagnosed 12 months before.

I was on 4mg pred a day at the time. My GP advised an increase to 10mg and the bursitis resolved. It took quite a while, as I had waited at least 2 months before accepting that it was a flare.

As your husband is a scientist, he may be interested to see the graphs I produced for my Rheumatologist, showing what was happeneing with my bloods results and my pred dose during the flare. (Click on my name to see the posts.)

2 weeks ago, my blood levels were up again and I'm having them repeated in 2 days - hoping it's not another flare, but if so, I'm wiser now and won't wait any longer to increase the pred.

It's not a 'backward step' if we need more pred to deal with a flare - it's just how it is! It's not a failure on our part, but part of the disease process. The backward step is ignoring it, as I did and taking longer to recover as a result.

Season's Greeting to you both.

[Hazyma]

Thanks to all who took time to reply. He went back up to 15mgs for two days which helped a lot, and then went to see our GP to try to persuade them that it is not a race to zero. They reluctantly agreed to give him enough prednisolone to allow that . He was surprised that what is usually a very supportive practice seem to be of the opinion that the best way is a fairly quick taper. He even took stuff from this group with him, but they are still not entirely convinced........The good thing is that he is convinced that it is a case of finding the correct dose and he will be tapering more slowly this time.

[PMRpro Ambassador]

Your husband may find these links helpful in starting to compile his own list of "stuff" from the medical literature and charities:

patient.info/forums/discuss...

is our collection of reading on another forum. These are also interesting and very relevant:

academic.oup.com/rheumatolo...

medpagetoday.com/rheumatolo...

Doctors seem unable to make a link between the speed of reduction of dose and the rate of flare. By no means everyone gets all their underlying inflammation cleared out in a few days - and every morning brings a new top-up of inflammatory cytokines, the clearing out of which is the task for the daily dose of pred. If it is slightly too low the dripping tap of inflammation will eventually fill the bucket and overflow - and if you were reducing fairly fast then you won't know where it happened. The authors of the "Bristol paper" acknowledge that a reduction rate of more than 1mg per month is predictive of relapse - and are proud of being able to get it down to 20% from the 60% seen by other reduction plans. But they still stick to their preconceived plan without considering that every patient has a different version of PMR/GCA/LVV: they may only have PMR symptoms but as you see from the paper in the second link the underlying problem may be different. They happily accept that GCA patients need more - but how many patients only show PMR symptoms but really have more extensive disease and would do better on more pred?

Using the slow approach we patients are so keen on results in almost no flares because we won't let one happen - though we don't have data to prove it other than the posts from people who are at well below 5mg, even off pred altogether without ever having had a problem, neither steroid withdrawal or a flare. Flares almost always result in having to raise the dose a lot - removing all the perceived advantage of the fast reduction. If it happens more than once or twice many patients find it increasingly difficult to reduce and the doctor jumps to the conclusion the patient is "steroid-resistant" and introduced other drugs - of doubtful benefit. More and more doctors are being shown the approach and approving it - and see a difference in their patients journey.

You say your husband has a scientific background - what is his field?

[Hazyma in reply to PMRpro]

Wow! Thanks for all that, PMRpro. I'm sure that he will spend a happy time trawling through all of those links

His degree is biochemistry but he spent many years as a University administrator, ironically heavily involved in training medics!!!

[PMRpro Ambassador in reply to Hazyma]

Then he has a chance of understanding it fairly well - once he gets started it will grow and he'll end up knowing more than his GP (often not difficult!).