Pmr

[Uglow]

It’s just dawning on me that pmr is serious. I’m scared I’m not going to ever get better. This site saves me. I can’t believe there’s no great continuity from docs, If it wasn’t for you I’d be totally terrified. Waking up everyday is great! But it’s also oh my what is today going to bring 😢

[PMRpro Ambassador]

It isn't particularly serious in that there are far worse things to have and unlike most autoimmune disorders it mostly burns out and goes into remission. Even if it is a pain in the anatomy and does change your life for a time, it doesn't kill you, isn't life limiting nor does it leave lasting joint damage like inflammatory arthritis.

You have to learn to listen to your body and be sensible about adjusting to manage it. But it is perfectly possible to live well with PMR if you are sensible. Remember that a forum tends to have the worse cases or those who have other things going on at the same time which complicates things.

Most of us live very well with PMR even if there are things we have had to give up - but far worse things happen at sea as they say ...

[Uglow in reply to PMRpro]

Thanks for reassurance much needed.

[Bedwell in reply to Uglow]

That’s a great reply.. and reassuring for us all! I had 3 years remission after a 6 month pred reduction… then feel sure this time was triggered by the vaccine and have done my yellow card… hope everyone who feels the same, has done it too!

[Lovetobe in reply to Bedwell]

Hi Benwell, whats a yellow card? I'm convinced my covid jab astra zeneca was the start of my polymyalgia. I'm 62 have had fibromyalgia since 2012 diagnosed and managed it well without meds, then boom after the vaccine completely different symptoms 😢

[Bedwell in reply to Lovetobe]

Google it! It’s a forum where people post adverse reactions to vaccines medicines etc

[PMRpro Ambassador in reply to Bedwell]

It isn't a "forum" - it is the official sysem for reporting drug reactions, there are other places where people post about them which is where a lot of people decide a drug isn't for the, - not thinking about the fact that the people who get on fine with the drug don't bother saying anything!!! Except in a clinical trial where positive and negative comment is needed.

[MrsNails in reply to Lovetobe]

yellowcard.mhra.gov.uk/the-...

[PMRpro Ambassador in reply to Lovetobe]

If it hadn't been the Covid jab, it could have been the shingles or flu jab. Or Covid, or shingles or flu. Or an accident, surgery, other illness, Or stress. Eventually one thing is the final straw that upsets the immune system and it goes haywire.

[Ana-16 in reply to PMRpro]

Such a balanced and wise response

[Viv54 in reply to PMRpro]

This is so true i have all sorts of problems going on , then to get PMR on top of it caused me to feel really low.This site is full of kind and like minded people , its helped me so much and im very grateful for it . 🌸

[Sophiestree in reply to PMRpro]

Can I ask how you would view GCA/LVV? Serious? Not serious once treatment starts?

[PMRpro Ambassador in reply to Sophiestree]

They are due to a serious systemic illness and not to be taken lightly - but once diagnosed and treated it is like anything else . A heart attack is serious - but once treated you are no longer really "seriously ill for life", you have reset the dial in a way.

[Sophiestree in reply to PMRpro]

Yes. Thanks. I had the same thoughts but needed confirmation.

[Snnib in reply to PMRpro]

Well said...

[Kendrew]

PMRpro has summed it up perfectly. Like you, I felt very scared in the early days after diagnosis, but over time I've taken the time to learn about the condition and the meds I'm taking and together with the reliable advice I've received here, I now feel better equipped to manage things more effectively and more competently. Don't get me wrong!... one day can be very different to another and sometimes you get caught out with something 'new', but there's always usually a remedy, a recommendation or a piece of advice offered here that will help.

I truly don't feel scared anymore.... sometimes a bit perplexed maybe.... but this is a manageable condition for most people.

I have had to make several adjustments to my life but in actual fact, I'm beginning to see new 'positives' as a result of these.

As PMRpro suggested.....there are far worse things we could have been diagnosed with, so don't be scared.... you will improve and get better but be prepared for one or two setbacks (perfectly normal) and be prepared for it to take time. As I frequently say.... "Patience is the key"!

[Uglow in reply to Kendrew]

Thank you so much x

[Kendrew in reply to Uglow]

You'll be ok. As time goes on you'll begin to recognise what different symptoms mean and distinguish them from potential side effects of the medications. You'll also learn what your own physical limitations are and how to pace yourself better. Realising that rest is essential and needs to be plentiful is a big game changer and will make life much easier once you can accept that.PMR definitely has it's challenges but if you listen to those on here who can advise us then like me you'll not walk this journey alone.

[Uglow in reply to Kendrew]

How absolute reassuring. Thank you

[Daffodilia]

Things do get better - steroids help - a low dose seems to be acceptable even if it goes on a long time - good luck

[Pixix]

Just sending you a hug, I understand how you feel! It’s just struck me in the past three weeks that my body isn’t ready to end the daily steroid taking &, foolishly, I thought I’d be one of the few who’d be off them in 18 months! It’s a struggle, but one that needs keeping in perspective, as PMRPro has done above! But it’s also not possible to do that every day...I think it’s fine to be wondering if it will ever end, & be fed up, too! S x

[Uglow in reply to Pixix]

So me too

[Frewen1]

Yep…I’ve had GCA for a year and sometimes have to pinch myself ( not in a good way ) when I realise just how radically my life has changed in that time… and that this is a manage, not cure, situation. But ! I’m still here to grumble, so that’s a plus…and one day I may regain my cheekbones, who knows…and, this site is indeed remarkable.

[Luciejc in reply to Frewen1]

I also have GCA and my cheekbones appeared slowly as I lowered my steroids.

[Frewen1 in reply to Luciejc]

Good to hear, and pleased for you...x

[Sharitone in reply to Luciejc]

Hurray! But on the other hand, who else gets full-facial botox for free?

[oscarandchloe]

Yes - 2 years down the track and lots of learning about self-management thanks to this excellent forum. The double whammy of Covid lockdowns and almost inaccessible GP help has made our recent journey bumpier than need be. Life has altered through GCA/PMR and the restrictions of the pandemic, but my life needed to alter as I handled stress badly and now I listen to my body, rest when I need it and watch my diet (no diving into puds and cakes when under pressure). Sometimes I feel down, but I know this will end and I can help myself towards it. Don't be scared, we all have blessings if we stop and look. I really recommend you buy Kate Gilbert's excellent book Polymyalgia Rheumatica and Giant Cell Arteritis : a survival guide. 2nd ed. from Amazon. It will answer all your queries and give you confidence in understanding your illness. Keep calm and patient.

[Lonsdalelass in reply to oscarandchloe]

Great answer! 🤣

[Uglow in reply to oscarandchloe]

I would not have understood anything about this horrible PMR without this site. My Gp no way understands like this absolutely fabulous team. Thank you so much

[cycli]

I think that's the key word, understanding. This site has helped so many understand the issues and helped people find a pathway to a new way of living. Thanks to all those on here.

[Uglow in reply to cycli]

Yes absolutely true.

[kulina]

How long have you had PMR? I'm at 3 mg Pred after 5 years and feeling better then ever. I just remembered how hard it was in the beginning. I had never been sick and very active with lots and lots to do. It was a shock not being able to get out of bed or dress myself. I remember going through the 7 stages of grief. I cried a lot out of frustration but eventually, I adjusted to the new me and learned to enjoy every day for what it was. I also promised myself never to forget how painful it was so as not to take for granted all the good days. Keep a journal, it will help you how and when to take the Pred and when you get better you'll see your positive progress. PMR is not a serious disease even though in the beginning it seems that your whole world is upside down. There are worse disease out there and if I had a choice I'd pick PMR. While I was coming down with PMR a good friend of mine was coming down with transverse myelitis. He's in a wheel chair now. There is light at the end of the tunnel, just listen to your body and let it heal itself. It will eventually.

[lalar in reply to kulina]

Great thoughts and a positive outlook for sure for someone like myself that has more or less been diagnosed with PMR earlier this year. I have been on steroids' since end of April. I have tried twice to taper to 12 but haven't been able to get below that yet. I find it all very depressing, the lack of being able to do things I once could including my school job.

In the last month is when the prednisone seemed to kick in with the moon face and the extra 15 1bs. I had someone ask me if I was pregnant - I will be 60 in a few months! One day at a time I know but some days are definitely more challenging than others

[Uglow in reply to lalar]

He does hot you like a ton of bricks. And some days it’s hard to come to terms with it. Tears to smiles up n down like a yo-yo. You will get there too I’m sure. I only diagnosed in March too.

[PMRpro Ambassador in reply to lalar]

If you haven't seen it so far - cutting carbs really does make a difference to the pred weightgain, and you can even lose weight while still on pred

[Uglow in reply to PMRpro]

I did fast 800 and lost a stone in 3 weeks

[lalar in reply to Uglow]

You said you were diagnosed in March how is it going with your pred?

[Uglow in reply to lalar]

A bit up and down tbh. On 17.5 hopefully back to 12.5 after mysterious pains. I will taper very slowly now. The lowest I got was 11 but went up for a few weeks thinking I had flare. I need to get a grip.

[DorsetLady PMRGCAuk volunteer in reply to Uglow]

What you need us to understand your illness - doesn’t come easy, but it will in time….and try not to get in a panic about every little twinge. Not always related to PMR, we all get odd pains/feelings on certain days…part of life!