time to get real!!, the goal is learning to live with PMR

[Purplecrow]

I was diagnosed with PMR almost 5 years ago. At the time, my rheumy said, "you will be on prednisone for a year, your blood sugar will go up, you will gain a lot of weight. but here is your prednisone".

Fortunately, this Forum was alive and chugging along, with PMRpro and Kate Gilbert and a few others carring the load. the group was still pretty small then.

Since that time, research has kicked in, literature has increased, but the old myths persist!

for starters... Newbies first question is always "when can I start TAPERING!, to get off prednisone".

the answer.....drumroll please......you will be on prednisone, not months but YEARS!! Tapering off Prednisone is gradual, and depending on the severity of each case, takes finesse and patience to manage without the dreaded yo-yo FLARE! Even with experience, flares happen, and are managed with prednisone.

question, how to keep from gaining weight... answer, check the white carbs at the door, and begin healthy eating, exercise moderately as your body tolerates.

question, blood sugar? I have no answer there, but I suspect carb control may help.

Other questions continue to roll in...fatigue, pred head, and the list goes on. As I read, most new users start with managing prednisone, then over time, move to managing life with PMR!

We have a huge forum of experts right here. The answers are here! They are repeated daily by our experts, who provide this service kindly and freely. I love you girls/guys.

as always, kind regards, Jerri

dx: PMR, 5 years, currently 6-7 pred.

[Rose54]

I love my little white tablets in the morning

As without them I would not have much of a life

And as you say a great forum with Fantastic people and so knowledgeable

[PMRpro Ambassador]

Got it in one!

[SheffieldJane]

Nice to hear from you Purplecrow. Love you right back.

[scats]

The charity educates us well, how do they approach educating GPs?

[PMRpro Ambassador in reply to scats]

That, I understand, is something that is in hand. The question is - what is the best way.

But we are now the ones who know - so we have a role in telling those who don't. With suitable references being supplied there are a few GPs who have accepted some of our wisdom and have ceased to fight the patient.

[scats in reply to PMRpro]

Think horses and water!

[PMRpro Ambassador in reply to scats]

True - but it does work sometimes so is always worth trying...

[Hidden in reply to PMRpro]

There is a poster in my GP surgery asking patients with certain conditions to meet groups of student drs. The list did not include PMR but did have heart conditions, depression and diabetes on it along with a dozen I can't remember. I left my details and hopefully will be contacted soon. I will chase it up. In my mind it will be PMR 101 at some point during the discussion. It might be my only opportunity to pass on all the brilliant and horrible experiences I have read on this forum.

[Purplecrow in reply to Hidden]

Brilliant move Ppd.. great opportunity to be part of the solution.

[Telian in reply to Hidden]

Sounds like your opportunity to shine - or not - depends who's there on the day that will listen and not be put off by the GPs who don't think it a priority - I'm surprised at the number of health professionals who haven't heard of it, they have 'heard' of GCA and that's about it. Seriously I think student doctors area good group to target. Good luck and if anyone can make them listen it's you.

I've often thought of joining my surgery's PPG - Patient Participation Group, but unfortunately I had 23 years working in the NHS and even though I loved it then times have changed and I count my blessings I'm out of it now - I don't miss it at all. Too much stress.

Let us know how you get on.

[ConventCassie in reply to Hidden]

I HOPE they respond!

[Dovelady in reply to Hidden]

I do this at St Andrews University medical school. It’s a great way to spread the PMR message, the tutor always tells the students, if the lady complains they have difficulty brushing their hair, holding a hairdryer, has an odd burning scalp sensation , always think PMR. You may not diagnose a case for years but you WILL have seen cases you just might not add up all the clues.

[Hidden in reply to Dovelady]

Thanks. I have a few key issues I want to cover. I was lucky that my GP DX on first visit with symptoms...it just took me a few months to get there lol.

[Dovelady in reply to Hidden]

I too was one of the lucky ones, I was diagnosed five years ago and one of my GPs patients was a keen member of the association as she had PMR and had left posters and leaflets. I was only the second case she had seen!

[Hidden in reply to Dovelady]

I think my Dr must have just read something as her reaction when pred worked straightaway was almost a sit down dance lol. Looking back the taper was fast and the usual flare happened but she did refer me to rheumy then.

[jinasc in reply to scats]

Scats

One of the major difficulties is that GPs are issued guidelines of the treatment of illnesses only when those guidelines are issued and cleared by NICE. The backlog is quite substantial.

Consultants have what is called a 'Society' (think Trade Union) but they have to join them it is compulsory. Those organisations issue the relevant guidelines to their members and only to their members. They are also sent for approval by NICE and once that is given they are then issued to GPs.

Consultant Rheumatologists join the British Society of Rheumatolgists. Not only they then issued with new guidelines they also for new treatments and develpemtns. When new improved guidelines are needed as progress has been made (research etc) they have committees to discuss these and thosecommittees must have patient representatives as well. Some people, who post on here, were invited to take part on the committees for PMR and GCA. (new guidelines for GCA are in the pipeline ready to go when cleared).

Consultants also have to attend quarterly meetings in there areas where they work - think support groups, only compulsory attendance.

One of the best way is to take copies of these guidelines to the GP when you discover that they really did not know about PMR but following confirmation of PMR and then finding stuff out on this forum and two others, one of which is Patient Info, which GPs use all the time.

They then took copies of the BSR guidelines and offered them to their GP and/or Practice Managers. Sometimes they were refused, but in most cases they were thanked and accepted nicely. Younger GPs are more likely to accept.

My practice has 4 GPs and they each have over nearly 50,000 registered patients (that figure has gone up over the last ten years as practices have closed down), however I was lucky, they already had 5 people with PMR on their books, what they did not have was a GCA person. One of the GPs in my practice had come across a person 30 years previously in another location and that person had lost their sight as none of the GPs had ever come across it before. She had vowed then it would never happen to her again. I was that next one.

We can make, as individuals a difference, but be prepared for knock-backs. We will get those guidelines down to GPs - who knows when, but people are working hard to make it happen.

Just over 10 years ago, you would have been lucky if anyone in the NHS had heard of PMR and GCA.

Now they have, those 25 people who met in London and who were determined to raise the profile, have worked hard and it had and is paying off. But it costs and 99.9% of all the work is done by volunteers who have PMR and/or GCA.

Pennies count you could find a very good use - and help the ocean at the same time - by using a 'plastic' bottle as a container for some of those 'pennies' and send them to one of the three existing charities or become a member. I empty my purse every night of coins up to 5p, you would be amazed how it mounts up and you don't miss it.

Here endeth a long post......................

[Purplecrow in reply to jinasc]

Thank you jinasc , isnt it just amazing what comes out in a discussion...your experience and wisdom is appreciated!!

Thanks for sharing. Jerri

[Purplecrow]

Also...rain eventually erodes rock...i think some of our medical community are just stuck at the rock stage...however, those of us living with years of PMR , who are vocal and able to persist , eventually begin to see some of that rock erode to enlightment...🤓

[shella]

Hello lovely people.... how could we manage without all this amazing help from those in the know!

Six years on and apart from sleepless nights tummy probs cataracts and days of fatigue ... down to 7 or 10 now ..... when I look back to progress made over the years I am so thankful and really appreciate all the good times which I thought I could never enjoy again....

Love and hugs to all

Maybe we should all flood our surgeries with flyers and booklets they can’t ignore!!

[Hidden in reply to shella]

We should call a sit in at drs surgery...but not show up because we all feel rubbish while tapering. 🤔😀

[shella in reply to Hidden]

😅

[scats in reply to Hidden]

The fact that PMR is not on the list perhaps shows the priority it is given. Or perhaps they think they've got it nailed.

Then there's the fact that we are mostly older women

[Hidden in reply to scats]

I will go and see what was on to get a sense of criteria they used. It's like anything...I was blind to things that didn't seem relevant to me and mine. 😂

[HeronNS in reply to Hidden]

Do you think the criteria is at least partly based on how common a disease is? A website called Vasculitis Foundation says lifetime risk for developing PMR is 2.4 % in women, whereas elsewhere I read the risk of developing diabetes is over 38% for females born since 2000. On the other hand, when you think how disabling PMR is and how it's connected to GCA it is a pity it was left off the list.

[piglette in reply to scats]

I should imagine it will be based on the number of people with particular problems eg cardiovascular, arthritis, anxiety, diabetes and depression .......

[ConventCassie in reply to piglette]

In a perfect world...it should be “pain based”.

[markbenjamin57 in reply to Hidden]

Such irony Poopadoop...!

[markbenjamin57 in reply to shella]

Yep shella, I agree. Maybe an Information / Education Campaign for all Doctors' surgeries conducted by the PMRGCA Special Forces..?

[shella in reply to markbenjamin57]

Good thinking .....get 00Ted on the job!

[scats in reply to markbenjamin57]

The mind boggles. Groups of elderly people in balaclavas ( hand knitted of course ) and armed with walking sticks, invading surgeries and leaflet bombing! Count me in.

[markbenjamin57]

Greetings from the UK Purplecrow

Well put - and an important message for confused Newbies especially..?

MB

[jinasc]

Purplecrow,

Just in case you think the USA is doing little, take a look at this persons profile -

member of a big heap of experts who are part of EULAR/ARC. You can read up on it using your search engine.

mayo.edu/research/faculty/m...

[PMR2011 in reply to jinasc]

Thanks jinasc, Matteson has coauthored several papers with Dasgupta. If you click on the link listing his published articles there are some really good ones on PMR/GCA, many of which have been cited here. Those are the ones to bring with you to Dr visits when needed.

The charity road show and literature sharing are great ways to impact physician knowledge. I wish we had something similar in the States! This forum has been a godsend for which I and many others are incredibly grateful.

[Chrisbox]

What a great post Purplecrow! I'm an 18 monther and it has taken me until now to realise what you have just said. It becomes to a newly diagnosed PMRer, a mission to get of the pred. I have added weight, but remained reasonably well with the pred over the last 18 months, with only flares when I reduced too quickly. I've had great advice on this site, not that I am a really active user, but when I've needed help the answers come in all too soon. Now at 3.5mgs - got pred head and fatigue but a daily rest manages the condition quite well. all in all about an 8/10 today. Chrisbox

[Louisepenygraig]

One year in I think I'm reaching the same point as you. My doctor, backed up by the NHS website, made it sound so easy. Take the pred, reduce slowly over 2 years and then it will be gone!. I felt so good on 15mg Prednisolone that I thought it would all be plain sailing. One year on and I haven't been to get below 12mg and now the side effects of the steroids, including muscle weakness, are getting more obvious I'm beginning to think I'm in it for the long haul. It's not easy adjusting. Being a member of this forum is a great help though.

[LMAR]

This forum has been invaluable for me & my PMR.....

[Nap1]

Purplecrow. I hear you. I haven’t posted in a very long time because I have been really sick. After seven years of prednisone I now require two new knees ( had one already replaced in 2011 ). I had been very good with food but still developed sugar problems. I need 4 eye surgeries. I have adrenal insufficiency. Skin cancer is a regular. presently I have three spots that require Mohs surgery on my face. Just last week I lost a cap To add to this impressive list. I am on Tramadol,Actemra, 9 mg of prednisone Which cannot be lowered because they are treating my adrenals. I cannot begin to talk about the constant pain from osteoporosis and osteoarthritis for which I take prolia. Clonipin doesn’t work anymore. I spend 2 days a week at the wound center. My skin is like paper.

I’m learning about high blood pressure and low blood pressure and water retention all the little things that are controlled by adrenals. More meds,more tinnitus, more headaches.

I am done ranting. There are others out there with much worse. So I Watched The Notebook the other night and cried for them and for me and today will be a better day.

God bless us all.

[Purplecrow in reply to Nap1]

Wow! Sorry you have had such a rough time...hope things get better for you💜

[Nap1 in reply to Purplecrow]

Thank you. Me too just a little health would be great.

[Leilagirl]

Right on Purplecrow. How lucky am I!!! Thanks to all who have endured and persevered so that I may benefit!

[Purplecrow]

🙏🏽