New to PMR

[Dilly-B]

After several years of localised pain that moved around my arms, thighs and lower back, a few months ago, the wheels feel off. In addition to the pain, I completely stiffened up and could barely move, get dressed etc. Stairs felt like Mount Everest. I felt like I was coming down with the flu although I knew I wasn’t and I was so incredibly tired.

My doctor did blood tests and I started on steroids within days. I do feel magically better but still tired, although not shattered as I had been and I have different aches.

This is all very new to me and I don’t know anyone with PMR so it is great to be able to read posts from others with PMR.

I have found lots of info on line but I don’t really understand what to expect and what it means for my future.

[SheffieldJane]

Welcome to the forum Dilly-B. I am glad that you were finally diagnosed. I found it a relief to be vindicated at last. It was the stiffness that finally sent me to the doctor. I could hardly walk, I couldn’t get in or out of the bath or out of bed. Unless I am looking back with rose coloured glasses, I think that I felt better than you do, on my start dose of 20 mgs. Have they started you on 15 mgs? Still, it is early days yet. The relief and flexibility were nothing short of miraculous. I stayed on my start dose for 6 fairly pleasant weeks, longer than average, before I began my slow taper down from Prednisalone.

There is a lot of knowledge and experience on here, and real support. Feel free to ask your questions as they arise, however trivial you think they might be. Don’t make the rookie mistake of returning to normal duties, even if you feel great. You are still ill, even though there should be at least 70% symptom control. So you need plenty of rest and to pace your activities. Ensure that you take Pred with something like yoghurt or kefir to protect your stomach. The doctor should prescribe Calcium and Vit D to protect your bones. Request a bone density scan ( DEXA) so that your doctors can spot any bone thinning over time ( Osteoporosis) before prescribing Alendronic Acid or similar. Start a low carb, low sugar diet you will bless yourself later. Of all the autoimmune diseases, I am glad I got this one. At least we have a drug that works and eventually it will burn itself out. Be prepared for a few years of it though. Managed well, a pretty full life can be lived. That’s probably too much information for now. Take care and I look forward to hearing more about how you are getting on.

[Dilly-B in reply to SheffieldJane]

Thank you so much. I really appreciate your reply.

I do feel hugely better than I did pre treatment and I am trying to be careful to relaunch myself into life very gently and slowly. I just don’t know what to expect.

I stated on 20 and will reduce to 15 after 10 days. I will see my doctor again at the end of next week and will ask for the bone density scan etc.

[Yellowbluebell in reply to Dilly-B]

Hi dilly, welcome to the forum. It is all very new for you and it takes time for it to sink in. There a lot of info on the site but dont be afraid to ask questions. There is usually one us around even in the early hours. Has your gp said to start tapering? There is no point in tapering if the build up of inflammation is still there as you will just go back to square one. Speak to your doctor if you still have symptoms before you start tapering.

You need to accept that whilst you feel a lot better you need to rest as well as taking pred. A low carb diet is essential and at the beginning of my pmr journey i ignored this and put on 2 stone! Others will belong in the morning to give more advics. Good luck. YBB

[Dilly-B in reply to Yellowbluebell]

Thank you. My doctor is being very helpful and supportive. We have a plan in place and I know what to do med wise according to our plan and if our plan doesn’t work. I will see him regularly - next appointment in a week. I can always speak to him on the phone so I feel very fortunate as I know others don’t get the medical support they seek.

My biggest uncertainties lie in other things and your comments help me so much.

Will be more careful with diet!

[PMR2011 in reply to Dilly-B]

Welcome Dolly-B to the group. Wealth of information and support here!

I would caution that 20mg to 15mg after only 10 days is a rather large and quick reduction! Many of us stayed at initial dose for 4-6 weeks before starting to taper. Then general rule is to not taper more than 10% of the dose.

[PMRpro Ambassador]

Hi and welcome.

Not sure what you mean by "what it means for my future"? PMR may be a bit disabling, life changing, but much of that can be managed when you know how. It isn't life limiting and for the majority of people it is managed well with pred at a fairly low dose until the underlying autoimmune disorder that causes the inflammation and symptoms burns out and goes into remission. It might not sound like that on the forums - but by their nature forums attract the people who have more problems of any sort. The ones who are doing well are doing just that - doing well and getting on with life either on pred because it is still there or off pred because it has gone.

I continued to work - I couldn't have commuted to a job that involved physical activity but I was a freelance translator working from home so could choose my hours and went to the gym every morning to do an aquafit class in a warm pool so I could move reasonably. Others are able to work, probably most people are retired and a few have to take early retirement or change jobs. But other than that - I still travel and go on holiday. My husband has far more limitations with his health conditions than I do.

[Dilly-B in reply to PMRpro]

Thank you. I’m just trying to get my head around that I have an illness that I can’t just push away. I need to learn what I can do and where I should cut myself a little slack. Eg I don’t make myself get up early unless I have to. A half hour extra rest no longer feels like laziness but rather giving myself a bit of strength that I need.

[DorsetLady PMRGCAuk volunteer]

This may help a little -

healthunlocked.com/pmrgcauk...

[Dilly-B in reply to DorsetLady]

A huge help. Thank you. I am in a funny place of dawning acceptance and denial feeling that all will be just fine.

[DorsetLady PMRGCAuk volunteer in reply to Dilly-B]

It will be fine... but not just yet! Life does go on, but in a slightly slower lane - and it’s takes time to adjust to that.

But you are not alone - we will always help when we can.

[Dilly-B in reply to DorsetLady]

A million thanks.

[Charlie1boy]

Hi,

If you wish to inform yourself about PMR, then, as well as reading Dorset Lady's paper, then I suggest you get Kate Gilbert's book " Polymyalgia Rheumatica and. Giant Cell Arteritis: a survival guide". You should be able to get it on Amazon.

Also, there is an excellent booklet, prepared by the Norrh East support group called " Living with PMR & GCA. Try "pmr-gca-northeast.org.uk".

I've lived with PMR for almost five years now, and got these booklets early on. They have proved invaluable.

Good luck.

Paddy

[PMRpro Ambassador in reply to Charlie1boy]

The NE charity has been discontinued and merged with the national group.

[Charlie1boy in reply to PMRpro]

Oh dear. Is their booklet still available? If so, can it be got from the pmrgca address?

Thanks for reminding me; I was under the impression they had resurrected themselves.

Paddy

[PMRpro Ambassador in reply to Charlie1boy]

I think there are a few copies - don't really know. I have asked if it could be put on the national website and be available for everyone that way.

[Hidden in reply to PMRpro]

There is an information pack available to order online but not sure what's in it. Some Arthitis things on pmr and a video channel.

pmrgca.co.uk/info-pack/

pmrgca.co.uk/downloads/2/

vimeo.com/channels/pmrgcauk

[PMRpro Ambassador in reply to Hidden]

Not my book

[Dilly-B]

Will look for these now. Thank you.