new here, looking for advice

[Margiepargie]

Hi, I’m new to this group but was pointed here by someone in the Thyroid group. I’m looking for some advice please.

so I’m a 48 year old female that was diagnosed with Hashimotos 10 years ago. I was told by my GP that once I have one autoimmune condition that it’s very likely I’ll develop another one.

Last October I noticed a pain in the middle of my back and it was excruciating to breathe in deep or sneeze. This has since developed into terrible pain in both shoulders, the right a bit worse than the left. Pain in forearms, neck, ribcage, knees, thighs and calves. It’s impossible for me to kneel or sit on the floor as the pain is really bad when bending my knees. Sleeping is bad too as I just can’t move in bed. I can’t push myself up on my arms, lift the kettle when it’s full.

I’ve always been very fit. For example I was previously a kick boxer, fencer. Walked 12 miles everyday and did yoga daily. I’m not one either for making a fuss when I’m in pain ( I broke my arm but didn’t go to the hospital for 3 days) but this is pain is none stop.

I don’t drink at all, don’t smoke and eat relatively healthy ( I’m a vegetarian) I don’t have any swelling in my joints, my bloods came back negative for rheumatoid arthritis, and my inflammation markers were slightly raised.

i recently changed my GP and they have referred me to a rheumatologist but that’s not until the end of October. My husband thinks we should pay to go private and has found a Dr Anthony Isaacs on line.

I’m at a loss of what to do and any advice whatsoever would be greatly appreciated.

Xx

[SnazzyD]

Well, PMR doesn’t just start from your 50th birthday. You could ask your GP to do a trial 3 weeks of Prednisolone as manyGP’s do in order to classify your symptoms as being steroid responsive or not. For many this and symptom history is what the diagnosis is founded on. The trouble with PMR is that there isn’t a blood test that specifically shows it up. If you’re lucky, you’ll have some raised inflammatory markers but they just increase the probability and some don’t get that at all.

If you are desperate, private may be your best option, but if it were me I’d want to try steroids while I’m waiting because if they do work and the pain comes back when they stop or the dose drops, you have some good information to take with you.

[Margiepargie in reply to SnazzyD]

Wow, thank you so much for that. Do you recommend a starting dose?

I’m going to get an appointment with my GP ASAP thank you so so much for your advice I really appreciate it.

Xx☺️

[DorsetLady PMRGCAuk volunteer in reply to Margiepargie]

Agree with SD - and 15mg is usual starting dose. You can just stop after the trial if it doesn’t do anything..,

[Margiepargie in reply to DorsetLady]

Thank you so much 🥰

[PMRpro Ambassador in reply to Margiepargie]

And I agree with them!

However - if that is Anthony Isaccs at the Royal Free, you are in the London area. Our favourite go-to anyway but especially for out of the ordinary PMR, is Rod Hughes in Chertsey. He doesn't play the "too young" card as many will and he is a thoroughly nice guy.

[Margiepargie in reply to PMRpro]

No I’m in the midlands but don’t mind travelling anywhere to be honest. Thanks for your advice I’m going to look Rod Hughes up 👍🏻☺️

[PMRpro Ambassador in reply to Margiepargie]

finder.bupa.co.uk/Consultan...

has Jody's number - his secretary. Think that'll get all the info you need - some other sites have some less reliable contact info.

[Margiepargie in reply to PMRpro]

Wow thank you so much. 🙏🏻☺️

[PMRpro Ambassador in reply to Margiepargie]

The Midlands is a bit of a desert! But Chertsey means you don't go into London and he often does video/telephone after the first f2f one.

[tangocharlie]

As someone who has recently suffered spinal fractures but got fobbed off and told it was just muscular, your description sounds very similar to how I was. I'd ask your GP for back and chest x-rays and an assessment by a physiotherapist

[Margiepargie in reply to tangocharlie]

Thank you I will☺️

[Margiepargie in reply to tangocharlie]

I also wanted to ask if arm or knee braces work? 😊

[tangocharlie in reply to Margiepargie]

It depends on getting to the root of the problem first. you need diagnostics

[Hopelessatbest in reply to Margiepargie]

I had a specialist fitted knee brace which was suggested I try by my Orthopaedic consultant. I have knee osteoarthritis and considerable pain. It was very expensive and rather than improving, made my knee worse. Even on the lowest number I found it increased my knee pain levels. I persevered for some time but now it sits in the cupboard.

[Margiepargie in reply to Hopelessatbest]

Thank you.

That’s rather interesting as I got myself a knee brace from Amazon but it made my knees feel so much worse. I thought it might just be the type I brace but maybe nit now. X

[Hopelessatbest in reply to Margiepargie]

The one I had was customised for me. I’d say forget it.

[PMRpro Ambassador in reply to Margiepargie]

Not if the problem is PMR - there are add-ons it may improve things. But don't make the mistake of trying everything you can think of just in case they might help in order to avoid trying pred. How it works is a good sign of what it may be you are dealing with.

[Margiepargie in reply to PMRpro]

If my GP gives me a trial of Prednisolone When do you think I’ll notice things?

[PMRpro Ambassador in reply to Margiepargie]

Impossible to say - I took my first 15mg at 10.15 am standing outside the pharmacy. I drove home and crawled upstairs to the computer to get on with my work. At 4pm I stood up, walked dowstairs and made a cup of tea which I then carried upstairs quite normally - and then realised what I had done. I had literally crawled upstairs in the morning - mug on the highest step I could reach, crawled up on hands and knees, rinse and repeat! I usually walked down like a toddler, one step at a time. piglette had a similar effect but about 16 hours. Some need a few days, some a couple of weeks. Being put on 20mg probably speeds things up. Less than 15mg is too low.

[Margiepargie in reply to PMRpro]

Thank you for sharing that. That is how I come down the stairs, one step at a time and just so slow going up. I kind of shuffle when walking and sometimes I’m not too bad I just limp a bit. But at night it’s truly awful. It’s hard when no one realises just how much pain you’re in. X

[PMRpro Ambassador in reply to Margiepargie]

Tell us about it!!!!!

[readingbooks in reply to Margiepargie]

This is just an example, Margiepargie, but I was started at 20 mgs and had a 'miraculous' ( like PMRPro above ) response within a few hours. That was a relief, but here I am 6 years later and slowly tapering from 2 to 13/4 . That's PMR for you ! No good speculating really.

[79andCounting]

This sounds very familiar… I was negative for RA, inflammation markers only slightly raised, in fact the CRP was at the high end of the normal range. But I react immediately to steroids, first dose mid-day, by bedtime all but pain free. Your reaction, or lack of, is the best indicator .

[Margiepargie in reply to 79andCounting]

Thank you. I’ve managed to get to see my GO this afternoon and hopefully can start a trial of steroids. X

[DorsetLady PMRGCAuk volunteer in reply to Margiepargie]

Please let us know how appointment goes.

[Margiepargie in reply to DorsetLady]

Thank you I will x

[Margiepargie in reply to DorsetLady]

So I’ve just come back from seeing my GP and she wants to expedite my rheumatologist appointment which is the end of October. I said I wanted to see a private Rheumatologist but she thinks she can get me seen sooner. I asked about a trial of Prednisolone and she wasn’t too keen. So she’s asked for bloods to be done on Tuesday and I’ll go back and see her after that. She did say if after the bloods come back and I still feel the same she will give me a 3 week trial of Prednisolone. So I’m okay with that, I’ll just keep plodding on. X

[DorsetLady PMRGCAuk volunteer in reply to Margiepargie]

Okay…well at least she is listening to you … hopefully you can come to an agreement on the Pred…

[Margiepargie in reply to DorsetLady]

Yes that’s what I’m hoping. Fingers crossed x

[PMRpro Ambassador in reply to Margiepargie]

That's a start ...

[Margiepargie in reply to DorsetLady]

Hi,

So I’ve had my bloods back now and the ers and crp have come back high. So my GP has started me on 20mg of Prednisolone from today and then she wants me to go down to 15mg from Monday until I see the rheumatologist.

I took it this morning and not noticed any change yet. I do feel a little lightheaded, not sure if this is the Prednisolone Or just me. I am pretty tired too is this normal?

X

[PMRpro Ambassador in reply to Margiepargie]

It may take a few days - I and a few others had relief in under 6 hours, some find they feel a massive difference the next morning, some need longer. Don't get your hopes up too far about her expediting the rheumy appointment though - it's August and many of the few left are on holiday. There is massive shortage at the best of times.

[Margiepargie in reply to PMRpro]

no I’m not holding out much hope to be honest. I have an appointment at the end of Oct, she just wanted to expedite it. But I won’t hold my breath 😊

[PMRpro Ambassador in reply to Margiepargie]

Some rheumy depts turn down patients with classical symptoms and who then respond well to pred - just to try to keep the waiting times down a bit. Most PMR is dealt with by GPs - a situation created by the rheumies themselves and they admit it, although now they are starting to feel they should see all patients at least once because GPs often get it wrong. Can't win!

[Margiepargie in reply to PMRpro]

That’s terrible, but not surprising.

[DorsetLady PMRGCAuk volunteer in reply to Margiepargie]

Some get almost an immediate reaction, for others it takes longer.. so you need to give it more time.

Lightheadedness can be a side effect of Pred, as can fatigue, but it may also be down to your illness.

[Margiepargie in reply to DorsetLady]

Thanks for that. I’m not sure 🤔 f I feel like this because I’m expecting it 😂 but I’m hoping that by tomorrow I can feel a little relief ☺️

[DorsetLady PMRGCAuk volunteer in reply to Margiepargie]

So do I .. but [old cliche I know] take each day as it comes.

[sidra1968]

Please ask for a trial of Prednisone. 15 mg to start but some need more to really get rid of the inflammation and pain. Please keep us updated.

[Margiepargie in reply to sidra1968]

thank you,

Yes I’m seeing my GP this afternoon and asking if I can start a trial of Prednisolone. Fingers crossed x

[Thelmarina]

Just to add that for me it was 20mgs and took over a week to kick in. Perhaps because it was a late diagnosis and the PMR well established. Either way good luck!

[PMRpro Ambassador in reply to Thelmarina]

That seems to vary - I'd had the symptoms for 5 years and 15 was a miracle in hours. Still got it though!

[Thelmarina in reply to PMRpro]

The variations are so interesting. And just good to know how differently we react to that first dosage. Gives hope! 😀