Pmr???

[Lola5670]

Hi, had been experiencing horrendous pain in my shoulders, literally woke up one morning and the pain was there. Doctor eventually got me to have some blood tests which showed abnormally high levels of esr and crp, he then put me on prednisolone 10mg and within a couple of hours the pain had almost gone, in meantime am now aching in my hips and gp has increased dose to 15mg, last blood test results showed crp levels had come done from 44 to 2 and esr now down to 14, am awaiting appt with gp on weds but he seems pretty convinced it is pmr. Are there any tips anyone can give me as know virtually nothing about this condition. I am 48 years old!!!! When I googled pmr it says it is very rare in people under 70 years!!! Thanks for any help x

[Hidden]

Hello Lola & Welcome 💐

Phew! A bit of a shock for you but glad the pain is settling down for you.

Rest, Rest & More Rest is the order of the day until things settle a little. The Pred works like a charm on the Inflammation but the actual condition is still there rumbling underneath.

‘Dorset Lady’ will be along shortly, she has a document she has prepared for New Comers to read & we will answer your questions as they occur.

I was 55 when l started with PMR it’s not as rare in younger people as GP’s think.

Take some time & speak soon

Kind Regards

MrsN

[Lola5670 in reply to Hidden]

Thank you so much, was so worried it was something a lot more sinister due to my age, Dr Google did not help at all!!! Am so glad I have located this wonderful help site with people experiencing and living with this horrid pain xx

[Hidden in reply to Lola5670]

Ah, Dr Google ~ can be very worrying!

I think PMRPro has now sent you a link.

Take Care

Speak Soon x

[PMRpro Ambassador]

No idea who claims it is rare in under 70s! The average age of diagnosis is 72 years or so but that is probably skewed because many younger patients are not diagnosed or not diagnosed for a long time. Mine started at 51, I was diagnosed at 56. The guidelines say "Over 50" - but it doesn't take much notice of birthdays, as we keep telling the docs.

Others will be along with replies but for the moment have a look at the replies from DorsetLady and GoodGrief on this thread:

healthunlocked.com/pmrgcauk...

Do as they suggest and then come back with some more specific questions. You were lucky to get such a good response to 10mg, that is a very low starting dose. But just because you feel better, don't go rushing around as normal. The pred only manages the inflammation - the actual illness continues in the background and makes your muscles intolerant of acute exercise. Rest and pacing are required:

healthunlocked.com/pmrgcauk......

as a bit of light reading - with a serious point.

[Lola5670 in reply to PMRpro]

Thank you, am still trying to work daily doing cleaning work, and it is only the last couple of days that pain in hips has got worse, pain is worse when resting xx

[PMRpro Ambassador in reply to Lola5670]

Have you mentioned that the hip pain is worse at rest? Or is it when sitting and it is on the outer aspect of your thigh?

[Lola5670 in reply to PMRpro]

It has only started hurting in last couple of days, not seeing gp till weds, yes it seems to be on outer side of hip xx

[PMRpro Ambassador in reply to Lola5670]

It could be trochanteric bursitis, it is common in PMR and is probably part of PMR for some people. It's possible that you are very much in the early days and it is still building up. The 10mg was very low and may not have been enough to stop the bursitis getting worse - I get steroid injections to knock mine on the head. It will be fine for ages and then raise its head again. Google stretches which may help and try icing where it hurts.

[MamaBeagle in reply to Lola5670]

That's where mine started! Then it went all the way round like a belt of fire is the only way I can explain it.

[DorsetLady PMRGCAuk volunteer]

Hi Lola and welcome.

This is the post MrsNails mentioned. Hopefully a bit easier to read than some on the net.

As already advised, please come back with specific questions - you will have many in the days/weeks to come

healthunlocked.com/pmrgcauk...

[Lola5670 in reply to DorsetLady]

Thank you so much for this info, it's invaluable. Have not been given a blue card, but will mention to gp next week also the extra meds that may be required. Am so eternally grateful for this site and all the help already gleaned, thank you

[Hidden in reply to Lola5670]

They invariably have to dust them off, the GP’s Surgery or Pharmacy should have one. x

[scats in reply to Hidden]

I had to get mine from PRMGCAuk.

[Hidden in reply to scats]

I had a new one this week from PMRGCAUK

[Lola5670 in reply to Hidden]

How do i get one from pmrgcauk?

[Hidden in reply to Lola5670]

This is the Charity that supports this forum & many of us are members. Lots of Info available.....

pmrgca.co.uk/content/home-page

[Hidden in reply to Hidden]

You can also find details of local support groups.

[Carrollee in reply to Lola5670]

Hi Lola. I get my blue cards from local chemists, ask the pharmacist. Seem to have plenty behind the scenes. Last one from boots! All the best cc 🤗

[PMRCanada]

Welcome Lola5670.

I imagine you are feeling quite shocked about the sudden onset of PMR symptoms. Accepting that you have a chronic illness and need to make some adjustments can be difficult, but worth the sense of peace. You cannot control the progression of the condition, but you can control diet, rest, mood and who you share with (and get support from).

It does get easier and more manageable over time (I’m 10 months in and doing well). Symptoms are the key to tapering at a rate that is doable and addresses the inflammation.

You are not alone....we are here and understand what you’re going through to some degree because we have a lived experience with PMR/GCA. Hope you find the forum helpful! Stay in touch and keep us updated, ask anything.

Leslie, age 56

PMR May 1/18

Started on 20mg, currently at 9

[Lola5670 in reply to PMRCanada]

Thank you for your lovely welcome, will keep you informed on next appt on 27th March xx

[Hidden]

Hi Lola

Like others I was early mid 50s when diagnosed but had symptoms for a good year maybe two before. Hope you are reassured by such info coming from a few of us.

I had never had hip problems but in first few months of diagnosis had severe pain. I think pred merely unmasked another symptom. I also got rib pain and piriformis syndrome in the first year but it all settled down even reducing pred. I did have to make sure I paced myself. The problem is that once pred kicks in you get a burst of doing things again. Unfortunately the body doesn't much like it so try and take it a bit easier but don't sit in one position for too long.

Btw. Never seen a steroid card despite asking at gp pharmacies and hospital. Someone kindly scanned one in and posted it last year sometime. You might to able to find it but I will check my pdfs. I had to cross some stuff out but it works. 🌻

[Lola5670]

Thank you for your reply and advice xx

[EdithWales in reply to Lola5670]

Welcome Lola

You have found the right place

I struggle to get a new blue card, my five year old one has labels stuck all over it. If you can’t get one, write down your details, dose GP details on any card. That will help until you can get one

Take care

[Lola5670 in reply to EdithWales]

Thank you, will do xx

[Hidden in reply to Lola5670]

If you search Google using steroid card NHS a few pdf from different health authorities have examples...as a last resort.

[piglette]

I think you have had good advice from the others. Has your GP offered you vit D and calcium? This is recommended as pred can cause bone density to reduce as a side effect. Also you should be offered a Dexascan to check your bone density if you have not been offered it already. Sounds like you have a good, sensible doctor which is a great asset.

[SheffieldJane]

Welcome Lola! It is a misconception that this is an older person’s disease. It is a misconception that ..... well so many things you see on the Internet. Perhaps it would be best if you ask about the issues that bother you most to begin with. There are a lot of responsive, knowledgeable, people on this great site. Ask away.

[Koalajane]

My pharmacist gave me my blue cards

[Daffodilia]

I am 65 and diagnosed last Oct - take meds and advice from gp - v good advice on line from support group - read book by Kate Gilbert on pmr

[Iloveholidays]

I highly recommend Kate Gilbert’s book too. I got mine on amazon. I don’t post on here often but read posts everyday, this is my go to place. I rely on this for help and information. My Gp has pretty much told me to get on with it as doesn’t want to see me unless a problem! This site is my lifeline hope you find it the same. X

[PMR2011]

You are absolutely on the right track. Being informed is key as you are right it seems this is a disease that few folks know about and we find we have to advocate for ourselves. Kudos to your doc for recognizing it as many won’t in younger folks (I was 51). Hold on to that one! Let us know what your questions are. You will learn how to manage both the disease and the Pred.

[Lola5670 in reply to PMR2011]

The first doctor I saw tried d to fob me off with physio, without even a diagnosis, the second doctor thought it might have been impingement so sent me for x rays and more detailed blood tests and it was finally the third doctor after the abnormally high esr and crp levels who started me on the steroids and thought it might be pmr. I have been on the steroids for about 3 weeks now and had another blood test, the esr and crp levels have come down quite dramatically am due to see him again next week and hopefully be given affirmative proof of pmr. The pain in my shoulders is still there as has pain in my hips increased but nothing like as bad as without the steroids, also experiencing today pain in elbow, is that normal??? Thank you for your input, as you said am glad the third gp I saw had the kudos to recognise the illness xx

[PMRpro Ambassador in reply to Lola5670]

There is no proof - just added evidence. Are you maybe trying to do too much because of the pain relief? I had elbow pain that reached diagnonally across to the inside of my wrist - tendonitis, part of PMR. Rest and ice helps.

[PMR2011 in reply to Lola5670]

Since you are so active it will be a challenge to remember you have an ongoing autoimmune disease. Both sitting for long periods without moving and continual repetitive movement can cause your body to protest. Gentle steady exercise every day is best especially weight bearing for the bones.

[Lola5670 in reply to PMR2011]

Thank you

[Hidden]

Lola after 10days on Pred l was like a Whirling Dervish & wearing high heels 👠 again! l swept through the office like a whirlwind catching up on 6months of others taking an easy ride while l wasn’t well!

However, that does not last as we start to reduce & that is why l say Rest & Relax because you need to!

The elbow pain may have been there anyway but you’re really only noticing it because the inflammation of PMR is under control. Mention it to your GP at your next appointment & see what he thinks.

It’s very easy to assume all that ails us is PMR or GCA other things carry on or crop up so be mindful of that.

You could try an anti inflammatory gel to see if that helps, check with your Pharmacist first, make them your friend for checking out Contraindications now you are on Prednisolone, as it’s always best to double check especially if you are on any other Medication.

Have a Restfull Day 💐

MrsN

[Lola5670 in reply to Hidden]

Thank you xx

[YuliK in reply to Lola5670]

Lola, are you feeling any better today ?

I hope there is an improvement for you dear.

Yulik

[OutdoorsyGal in reply to Hidden]

Does arnica gel help with pain, or is it just for bruising?

What gels are anti inflammatory?

[Hidden in reply to OutdoorsyGal]

I’ve never used it but my Mother in Law used it all the time, l’m sure someone will come along with some experience shortly.

[PMRpro Ambassador in reply to OutdoorsyGal]

It does help with other things but it depends on the cause I don't think it helped with PMR pain if that is what you mean.

[OutdoorsyGal in reply to PMRpro]

I’m thinking of the tenderspots on elbows and wrists. I didn’t have them when PMR first struck (or before), but now I wonder if I have osteoarthritis all of a sudden.

Which gels are anti-inflammatory, please?

[PMRpro Ambassador in reply to OutdoorsyGal]

I'd think it is unlikely to be OA as suddenly as that in an elbow. Tendonitis is much more likely.

Ibuprofen gels - of the Voltaren type but generics are available and much cheaper - may help and are less of a concern alongside corticosteroids. They are absorbed and do get into the system so may cause gastric irritation (disputed but a small risk). There is also a gel, quite pricey, called Flexiseq which is sort of like WD-40 for joints and many people have found that works very well for OA. It did work for my wrist pain which for me is often a sign of a PMR flare.

[OutdoorsyGal in reply to PMRpro]

Thank you, PRO. I am so un-used to having pains, these post-prednisone wrist and elbow issues are rather demoralizing.

[Lola5670]

Thank you seems a lot better today may have been totally unrelated and me panicking and jumping to conclusions as I seem to be doing all the time recently xx

[Hidden]

You just need to relax a little now, you have your diagnosis, it might seem overwhelming but you’ll adjust.

Take Care 💐

[Lola5670]

Yes I agree, thank you all so much for the wealth of information, care and support you have all given me xx

[tangocharlie]

I was 51eventually diagnosed by the 4th GP I saw and at then dismissed by a rheumy who said I coudn't possibly have it at my age. Years later a PET scan confirmed it was PMR all along but I got no apology for all the grief and misadvice he caused, it was so lucky that I stumbled across the forum and learned everything I needed to know. Sorry if you have got PMR and from your description it does sound like it, it's a bugger, but you can live with it fairly normally with the help you'll get on here, and unlike many other autoimmune things at some point it will probably burn itself out and go away.

[tangocharlie in reply to tangocharlie]

PS I've also had elbow pain a while, been told its golfer's elbow but I don't think so.

[Lola5670 in reply to tangocharlie]

Thank you xx

[cn72]

Diagnosed at 44 and had awful job getting the diagnosis but thanks to a stand in gp I finally got there. I wish this rare in under 70 didn't exist as it means people like us have to suffer even longer. My pains started at 40 I just wish they had considered pmr back then.

[PMRpro Ambassador in reply to cn72]

Not "rare in under 70s", "rare in under 50s" (which is bad enough!). And recently someone spoke about an article with "over 40" being the age range. So it is getting there!