Early relapse - anybody else experience this?

Bones, joints and muscles
1

Hello

My wife has been diagnosed with PMR. She is a couple of months into the steroid treatment regime - 15mg for 4 weeks, followed by 12.5 for 4 weeks.

When she was on 15mg, she was really good - had very few symptoms. The reduction to 12.5 brought a little pain. She's always been quite active and the enforced "rest" she had during the early days of the condition (where she couldn't get out of bed some days) is frustrating her and she went to a zumba class a few days ago.

The day after the zumba class was the day when the dose went down to 10mg. The day after that she had a HUGE relapse with pain levels back to where they were pre-treatment and perhaps even worse.

She has put the dose back to 12.5mg but that's not entirely successful at eliminating the pain. This morning her joints are swollen and she's in quite severe pain.

So my questions are:

1. Is the zumba likely to have caused or contributed to this?

2. Is it unusual to have relapses this severe so early on? We've read lots about people having relapses when they're on 5 or so milligrams, but never on 10/12.5!

3. She's going to put herself back to 15mg for at least a week - are there any problems doing this?

It's difficult to know what to do - her treatment has been organised by a consultant and we're not due to see him again for a few weeks.

Your help and advice will be very much appreciated - thank you

2

I have also been recently diagnosed with PMR, so am new to all this. I was also on 15mg but my rheumatologist has advised me to cut down by 1mg every 2 weeks. ( maybe your wife is cutting down too rapidly?) If it flares, I am to increase my dose to where I'm comfortable, even if that means going back to 15 mg. I have been advised that it is perfectly ok to do all the Zumba, step, running, massage etc that I did before, as long as I'm not in pain or a flare because the inflammation that causes pain can be aggravated. Hope this helps. I really feel for your wife. Revisiting the original pain is like a recurring nightmare. Hope she has relief soon.

3

Thank you Jobaby. The reduction regime my wife adopted was the one given to her by the consultant, and it's actually slower than the "normal" one we've read about. And it's not so dissimilar to yours - she hit 10 after eight weeks, as opposed to the ten it would have taken you.

I did see a post on here from a lady in France who seemed to have a different plan - it took her eight months to get to 9mg.

I think when my wife did Zumba she might have been in a little pain, suggesting that the joints were a little swollen so that could be it

4

I'm sorry to have to welcome you to our community - noone would want to be here in an ideal world but if you have PMR you'll get plenty of advice from people who live with PMR and have done so for some time.

First of all here is a link to another post at the top of this forum:

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

In it you will find links to a support site from the northeast support group with medically-approved info and stories from PMR patients past and present. I encourage you to read it and possibly to join the other forum at forumup which is far more active than this one and where we work more like a real support group - laughs and whinges included! There is also a link to a paper from a group in Bristol, aimed at GPs but mostly easy enough to be read by most patients, certainly something ALL GPs and many rheumatologists should have pressed in their hands and be encouraged to read.

This group in Bristol gives 15mg for 6 weeks, 12.5mg for 6 weeks and then 10mg for A YEAR and by doing this finds they have a much lower rate of flares at 2 years (20% as opposed to 60%). It has been said in the medical literature in the past that the most common cause of flares is reducing too far and too fast and tat the worst thing to do is yoyo the dose to control a flare - going slowly and avoiding one is far better longterm.

Noone will be able to cut down on their pred dose successfully until the inflammation is under control - a patient diagnosed and treated quickly might be fine after a month at 15mg - but in most cases they will struggle. After over 5 years with PMR (too young, no raised blood values) I was given 15mg for 2 weeks, cut to 10mg for 2 weeks when I started to feel bad again and then to 5mg - where I managed but was in pain most of the time. On stopping the pred after 6 weeks I was worse than at the start. After that I have struggled to get below 9mg/day - and every time I was encouraged to go below that level I had a flare. I have now succeeded by reducing 1mg at a time (and that is since 15mg) and not even doing that overnight - at higher doses I did alternate days old/new, 15/14/15/14 for eg, for at least a week before going to the new dose. Since 10mg it takes me about 6 weeks, working on one day at the new dose, 6 days old, one day new, 5 days old and so on until I get to alternate days. Then I increase the number of days at the new dose between the old dose in the opposite way until I get to 6 days new, 1 day old. Then I reckon I'm ready to fly on the new dose every day. I wait a few weeks before starting all over again for the next 1mg reduction. By doing that I have reached 6mg with no problems. Even at that rate my GP here in Italy is saying slowly, slowly!

Tony - your wife probably IS suffering because of doing the zumba I'm afraid. Even physiotherapy in PMR is associated with risks if it is too aggressive (good physios know that, others don't) and trying to be back to normal just because you are on pred is being far too optimistic. Many of us who work with the forums are constantly amazed at statement like "you'll be back to normal as soon as you are on pred", "you can do as much exercise as possible, it's good for you" - and from people who should jolly well know better.

If she is going back to 15mg to control the symptoms she should go to the GP and make sure she has enough pred to stay there for at least a month. Take a copy of the Bristol group paper I gave you the link for and get the GP to read it - there is actually no reason why your GP shouldn't manage the PMR treatment as you can see from that paper. The PMR isn't cured by the pred - it allows you to manage it by controlling the inflammation that leads to the pain and stiffness. One day, sooner if she is lucky, later if she is not, the autoimmune disease which is the underlying cause will go into remission and she will be able to SLOWLY get off the pred - you always keep trying but always with a tiny dose because the pain due to a flare and the pain due to taking away the pred are similar. By creeping down you are less likely to cause either - you might find you are fine at 10 but not at 7.5 - you might be fine at 8mg but not 7.5. Half a mg can make a big difference!

Nearly all of us know the frustration Tony - most of us were fit and active until PMR struck. But you have to manage what you have - and when you are reducing in particular it is a good idea to clear the decks and have a few duvet days until you know you feel good at the new dose - I have to say I don't need that with my technique because the difference is so small. I wouldn't/couldn't do zumba even now! The effect of PMR is to make the muscles need far far longer to recover from any exercise, even walking, especially if there is an upward slope so that little session of zumba feels like a marathon to her muscles and they are letting her know. Rest is key in managing PMR - especially in the early stages. If she wants to do exercise then aqua classes would be better at first - but still take it easy. Many people mistake the wellbeing of pred for being cured - you're not. And if the inflammation is still there - you will have problems even reducing from 20 to 15. A lady on this forum a couple of years ago couldn't get below 20mg until she tried this very slow version - and then managed down below 10mg before needing a hip replacement which interfered a bit! Rule of thumb: never more than 10% of the current dose, anything over 1.5mg at a time has the potential to lead to trouble.

As you mention swollen joints - is the dx of PMR certain? Did the 15mg pred achieve a large effect within 24-48 hours? It is not unusual for PMR to be confused with LORA (late onset rheumatoid arthritis) but some patients with PMR do also have swollen joints though it is less common than the shoulder and hip stiffness and pain.

This is quite enough for a start - read the Bristol group paper and what you find on the northeast support site and come back with any questions you still have. We'll try to answer them one by one. Also - where do you live? There may be a real live support group within reach. And I do recommend your wife comes and chats to us on the northeast PMR and GCA support group forum at forum up because there are loads of encouraging photos there - this week one lady, who like me has had an interesting 4 years of PMR and has been reducing the way I have, walked round Virginia Water with photographic evidence. This time last year we could barely manage a few hundred yards - you do improve!

Eileen

5

Dear Eileen

Many, many thanks for your thoughtful, in-depth advice. I had seen the north east group website this morning and I will join immediately.

You have given us a lot to work with here - what's really frustrating is that we specifically asked the consultant if exercise was recommended and he said and I quote "you can do anything you want to"

I feel much happier having read this as you start to feel that perhaps my wife is experiencing something unusual and it very much sounds like she isn't.

Many thanks again

Tony

6

Hi to both you and your wife,Tony

Firstly, it is very likely that the zumba class has aggravated the inflammation. The steroids do not cure PMR, they just damp down the inflammation that is causing the symptoms. Most of us find that in the early days of treatment especially, we have to learn to pace ourselves, and have learnt to our cost that if we overdo things on a good day, PMR comes back to bite on the next.

Yes, it is very common to have relapses early on in treatment - just because 15mgs controls the symptoms, it doesn't mean to say that somewhere between 15 and 12.5, the inflammation will run away with itself again. If your wife had raised blood test markers at diagnosis, then those tests (ESR and CRP) should be repeated before each reduction to check that the present dose is controlling the inflammation and bringing the markers down. Some people do struggle to reduce from 15mg and have found that by going back and then reducing by just 1mg at a time works for them.

There shouldn't be any problem increasing back to 15mg for a week or so and then trying a smaller reduction. However, as your wife is under a consultant you might prefer to check this out with him/her via his secretary or on the rheumatology nurse helpline if there is one at your hospital. I had that facility and I found it invaluable.

Another important tip: many of us clear the decks for a week or so following reductions in dose to allow our bodies to adapt to the new dose - any stress, whether physical or emotional, can play havoc when suffering from PMR.

I hope this helps to answer your questions but do come back if it doesn't - there is always someone around within a day or two to help from their experience. Good luck to your wife and I do hope she starts to feel better soon.

7

Thank you MrsO - again, what say is reassuring as you hear so often about how people get down to 2 or 3mg before suffering relapses.

Much appreciated

8

Yes - well next time you see him ask him if he himself or anyone REALLY close to him has ever had PMR. I seriously doubt it.

No - your wife is far from unusual I'm afraid, even to the having an unrealistic consultant. He probably has no idea what sort of exercise we ladies in our 50s get up to! But I look a zumba and leave it to my daughters generation! Skiing is more my line! But last year even that was way out of my field. This year - should be fine if I keep it gentle :-)

Eileen

9

Thank you again, Eileen. The consultant seemed so helpful. We had a couple of months for the diagnosis during which time my wife was in so much pain she couldn't get out of bed on many days. The GP reckoned it was "flitting arthritis" and never mentioned PMR.

In the end, we paid to see the consultant privately on a recommend from a friend who has RA and he instantly realised it was PMR. That said, he doesn't always listen and I very much suspect that you're' correct in that his assumption of my wife's exercise ambition was no more than a gentle stroll.