Third time in seven years diagnosed with PMR

[janimaths]

Really truly horribly let down and disappointed as I was about to enjoy exercise again but realise that prednisolone is again my fate for the next couple of years. Over the seven years I’ve had 2 years free of steroid, started to get accumulated weight to shift a bit then all the truncal pain and stiffness and inability to do things started up again. I’m alive. I have things to occupy my mind, friends, family, grand children. I don’t want to pile on pounds again. There must be a way of taking weight off. I remember, perhaps a male, with PMR posted on here that he had weight loss sorted. Can someone help please?

[PMRpro Ambassador]

Loads of us, mainly female, would say we have pred weight problems fairly well sorted - cutting carbs drastically will allow weight loss while still on pred and reduces the likelihood of gaining weight if you adopt it right fom the start. Some people need to cut the carbs more than others but it does work.

You sound as if you have been reducing too fast - of course it is a balance whether reducing quickly and having a full relapse after a period without pred is better or worse than reducing more slowly and spending longer at a low dose. I have had PMR for 15 years or so. It definitely never went away in the first 5 years - I wasn't on pred, it wasn't diagnosed, it was my age I was told. In the 10 years I have been on pred I have been stuck at 10mg-ish quite a lot but did get down to 5mg before having another flare that put me back to 15mg.

This research

medpagetoday.org/rheumatolo...

says there are few adverse effects with pred for PMR (i.e. low dose) that wouldn't be found in a similar age-matched population not on pred. In my book I would rather stay on a low-ish dose for years and not have the relapses and have to go back to higher dose pred. 40% of people with PMR are on about 5mg or less after 10 years. My quality of life is all to me.

[janimaths in reply to PMRpro]

I didnt think I had been reducing too fast as I followed “Celtic”s plan on here for very slow tapering and slowly came off it so that I had no symptoms and felt good when I reached zero after almost three years. There were 2.5 good years until I broke both ankles, one really badly, was in a wheelchair 4 months then one day about 9 months after the breaks when I was struggling to become more mobile I started with sudden huge pain everywhere. My consultant started me on daily 10 mg pred. That time it wasn’t as bad as the first and I was on them for a year without flares, finishing last year. Ten months off then it began again 6 weeks ago. This time it’s back to serious pain with it radiating up the back of my head in two precise places. I notice this evening someone else on this site has the same thing. I see my consultant a week on Friday and he has already expressed concern about that. He is on his annual holiday but maybe I should be talking to my GP? I have learned on this site about the gravity of head pain in these circumstances and don’t live too far from a hospital should my sight begin to be dodgy. I have Kate Gilbert’s excellent book. I keep it about me, and finding the wisdom in it very soothing. Following her eating advice. Maybe I won’t put on too much weight. I have a stiffening aortic valve and could have the TAVI procedure in about 18 months. This a bummer to have to go back on pred again right now. I worry that pred and TAVI might have a train crash. But it is what it is. I have a nice marrow and some minced pork which I will bake tomorrow for my friend with garden rhubarb crumble sweetened with Stevia. Things could be worse. Thank you for your response. It’s so good this site. I think maybe I’ll sleep now after ventilating.

[PMRpro Ambassador in reply to janimaths]

I wonder if the vasculitis you have is related to the stiffening aortic valve - that it isn't "just" PMR but, like me, probably large vessel vasculitis. Mine seems never to have gone into natural remission - maybe I just haven't managed to match reduction of pred to a quiet period as you did the last time. But I do have intermittent flares - and they all seem to have been linked to a surge in the cardiac stuff.

hindawi.com/journals/isrn/2...

"Celtic's plan" - I don't remember her having one! Are you a member of the Surrey support group?

[janimaths in reply to PMRpro]

I’m interested in the possibility of a mixed diagnosis as you suggest. I see my rheumatologist a week on Thursday and will put it in front of him. He winces when he sees me coming as I have been so against pred but at last I am giving in to the reality of needing the magic bullet maybe for the long term and he’ll find me rather quieter about pred, poor man. Maybe Celtic replied to me as an individual but it was an extremely slow and effective way of tapering. If I could find my old posts I would refresh my memory. Not in Surrey, Scotland, near Glasgow - coolest city in UK, not my words but it has its charms.

[PMRpro Ambassador in reply to janimaths]

I lived in the Dundee area for many years, my daughter is still in Rosyth and works at Forth Valley hospital.

It isn't really a mixed diagnosis, it is the degree of vasculitis and the underlying extent.

academic.oup.com/rheumatolo...

Was it the Dead Slow and Nearly Stop concept? I think she used to quote it quite often - my development based on a germ of an idea from Ragnar the Swede.

[janimaths in reply to PMRpro]

Again can’t remember. Wish I had kept notes. It did seelm never ending but did the business for me. When tapering comes for me, a long way ahead I fear, perhaps it will have been superseded by something else. Born in Stirling I left Kilsyth age 7 with my parents and was raised in central Africa until adulthood, but we missed Scotland like a physical pain and I love being back home. Dundee now has Discovery in which my husbands second cousin went to the South Pole with Capt Scott Once and Shackleton twice. I love going there but haven’t yet seen the new Tate. Thanks for the links to publications it’s good to read right now., and the comment about the degree of vasculitis. Something to ponder before I am next seen.

[PMRpro Ambassador in reply to janimaths]

My daughter got married on the Discovery!! Not sure if it was a good augury though, she's just getting divotced!

[TooSore]

I struggled with weight gain too. I put on weight before getting diagnosed because I sat on the couch with "comfort food" - moving hurt! By cutting carbs I was able to drop 25 lbs and am hoping to lose more. I found the first few days the hardest because I felt hungry even though I knew I ate enough. If you push through though, it settles down.

You don't have to wait to exercise. Once on prednisone and feeling a bit better you can start with gentle exercise. I found walking and water aerobics helped. Start with a very small amount and remember to rest. Very slowly do a little more and see how it goes. Listen to your body. I would feel ok exercising but would realize later that day or the next if I do too much. Each week or so you can add a bit more if you are feeling up to it.

[janimaths in reply to TooSore]

Thanks for this. What happens when you realise after exercise that you’ve done too much. Is it exhaustion, pain break through? I would like to compare. Thanks

[TooSore in reply to janimaths]

For me it's exhaustion that tells me I've done too much in general. If I'm feeling well I can forget to pace myself. I will get muscle knots if I exercise too hard. So if I've walked a few days and tacked on a meeting, appointment, or late night I wind up on the couch in tears. If I've tried to walk faster or increased the "weights" in the pool I'll have muscle issues. Does that make sense?

[janimaths in reply to TooSore]

Yes perfect sense and the ‘snapping elastic ‘ noises and feelings along my shoulders, which are new to me this time, are probably the muscle knots you refer to. I have left off aqua fit for a while as being too heavy and taken to gentle walking and arm swinging. Thanks for your reply.

[PMRpro Ambassador in reply to janimaths]

Any exercise shouldn't really result in an attack of DOMS (delayed onset muscle soreness) the next day. In normal people that may start later the same day and resolve over a few days. For us it tends to wait a day or so and takes longer to resolve because the muscles can't repair themselves. That's why we say you have to be aware of what your limits are - and one way of finding out is to walk/exercise for a time you know is OK, if you don't know, just do 5 mins! Rest next day and assess (or do something using different muscles). If that was OK, add a couple of minutes the next day, rest and assess. Keep doing that until you feel very slightly sore on the rest day. Go back a day and keep at that level for a week and then start to add the couple on mins every second day until it happens again. Usually the training effect will mean you won't get to a "sore rest day" for a long time! When you have a exercise period that suits you, stop adding time and work on speed or level. But again, that must be a slow increase - don't suddenly double the amount!

And in terms of tiredness - anything that doesn't improve with a night's sleep was probably a bit too much!

[janimaths in reply to PMRpro]

This advice I have followed and assessed as I go along. . It’s so good to be taking an interest in exactly what my muscles are doing and how they react and gives a lightening of mood instead of a constant irritation against PMR and steroid. Change of mental attitude gives great cheer. My rheumie should be pleased when I see him today. I have possibly not been the easiest patient sometimes. And the pain has largely gone. Hip hooray.

[PMRpro Ambassador in reply to janimaths]

It's apermanent learning process!

[Noosat in reply to TooSore]

This sounds like what I would say. I have tapered to 3.5mg from 4mg starting to-day. Through all the down tapering from 40mg, I have never stopped trying to do some movement. Walking as much as possible. Now besides the 2-3 miles I do 3 mornings a week over challenging ground, I do an hour of chair yoga twice and then try to go to gym to do what I can for 3-4 days. No matter how tired or stiff I get, I find the movements beneficial.

[Rose54]

Hi

I struggle to lose weight with Pred and a underactive thyroid I also consider I had a healthy diet .

However after a HA in May I have lost 1st .

I follow the eating plan for BHF you can down load info from thier site

Its more about portion control no weighing as everything is compared to what will fit in you hand .

[janimaths in reply to Rose54]

Thankyou Rose54. I’ll get into BHF today before I go to the supermarket. Didn’t know what you told me. So useful.. hope you are recovering well after the HA. All the best.

[Rose54 in reply to janimaths]

Hi

I am doing fine Thank you

never been so busy

I do try to walk for 30min every day

Or if not walk some sort of exercise

Good luck

[bunnymom]

After 3 and a half years I joined weight watchers thru an app on my phone. I lose very slowly, lb or two a month. Have now lost 18 lbs and weight less than when I started pred. I was slowing gaining and tried other ways, like counting calories. I had to adapt my mindset for the long haul. Wasn't interested in low carb as I enjoy bread and fruit too much. It's change I can continue. Good for you knowing what you are up against and making a plan. My Rhuemy was impressed as he said no one loses weight on steroids. ( Of course I know many on here who have) Wishing you well 💐

[janimaths in reply to bunnymom]

Words of wisdom from you. Many thanks I really appreciate it. I am realising that my worst enemy in all this is myself. I am far too impatient and always want results like NOW! Nothing good happens quickly, unless you win the Pools. There’s a slimming world in my local village. I had a little success there years ago - in the years before steroid and I’ve still got the Recipe

books. Putting the chocolate away. New plan to take up.

[Gumnut]

Hi so sorry to hear about your diagnosis. I can understand your frustration. If you are able to walk and exercise thats the best therapy apart from medication. I was advised to keep active. A walk every day helps or swimming or whatever you can do. I initially put weight on but have cut right down on bread, don't eat sugary things, and try to eat healthily. And only healthy snacks. No sugary drinks. Lotts of fish. The worst thing I believe is to be inactive. I am back down to my normal weight now apart from a bit of a midriff!