The Rheumatology Saga Continues!

[Paulx222]

UPDATE.....

Was offered an NHS Rheumatologist appointment today due to a late cancellation and I thought I'd take it rather than wait until February to see my Benenden Rheumatologist.

I met a Dr Chung and he was absolutely lovely.....spent 45 mins running me through everything and checking my results from my Benenden Rheumatology screening.....

He agreed that based on my conversations with him and the results that this looked like potentially PMR and he agreed with the Benenden Dr's diagnosis.

What he didn't agree with was the plan moving forward and he essentially scrapped the fast track if 30-20-15-10-5mg over 5 weeks. He said he'd never heard of a plan like that and 30mg of steroids would probably mask most issues and it wasn't helpful to be on such a high dose.

As I had reduced to 20mg only yesterday he said he wanted me to drop further....to 15mg for another 2 weeks before 12.5mg for a month then 10mg for a month before reducing at a much slower rate from that point depending on symptoms.

He said it would be for the long haul at least 18 months to 2 years.

He also said that he would ask my GP to prescribe some other supplements etc.

He will see me again in February to discuss how I am getting on.

He also asked me to go for a chest x-ray to rule out anything 'more sinister' and he waited to talk me through that after it had been done. It was clear.

Don't really know what to say....I suppose it's good to have a longer term plan complete with steroid card and he said if there are any issues, to ring and move the appt forward and he will see me.

Overall, I couldn't be happier with my consultant but it's all a bit of a rollercoaster.......he said I was at the start of something and it would be long......try to eat healthily to avoid weight gain and everything in moderation.

Thanks to everyone on here for advice and comments, I had much better questions ready due to everyone's help.

I will continue to post updates in case anyone finds it useful 😃

[DorsetLady PMRGCAuk volunteer]

Good you got an appointment - at least you won’t be worrying all over Christmas.

Agree with the advice given in that initial dose of 30mg was maybe too high… but just be a bit careful about what has been suggested, especially the drop to 15mg . As you’ve only been on 20mg for a day or so, then that is essence is a 50% drop - and you might find it a bit uncomfortable… and would have preferred you to be at that dose for 3-4 weeks rather than 2.. but all you can do is try his way.. and at least he’s told you to contact if there are issues.

Also he may be a tad optimistic in the 18 months to 2 years timeframe - hope he’s not, it is achievable for many - but not all.

Having said all that, good luck and hope it all goes according to plan. .

[PMRpro Ambassador]

I'd agree with most of that - though I think the 20/15/12.5/10 reduction is on the fast side and especially with the start being over xmas and NY. Nevertheless, far preferable to the other guy's approach. And as DL says - 18-24 months????? Some do but it would help if they were a bit more realistic! But very positive that they agree on the diagnosis though.

[mpartrid]

Hey Paul

That sounds far more sensible, good luck.

Matt

[Paulx222 in reply to mpartrid]

Cheers Matt

Fingers crossed!

[Charlieanna12]

Hi Paula, I really find reading other PMR sufferers journeys. I have only just joined this group and am looking for whatever support/help is available.

I saw my GP last week and he is of the opinion that PMR may be why i have so much pain. However, a blood test hasn't supported his thoughts.

I saw the Doctor again today and although he's not certain what is wrong he has asked me do start a 10 day course of steroids. I have to take 20mg daily and then report back.

I'm really not looking forward to starting these tablets but I need some answers.

If steroids don't help the next step I'm told will be scans might be next.

Thanks for reading

Christine

[PMRpro Ambassador in reply to Charlieanna12]

Is he not aware that at least about 5% of patients and up to 20% depending on the study you read never have raised inflammatory markers - or at least, not outside the normal range? That doesn't mean they aren't raised for them - my ESR never went about about 18 but my own personal normal is low single figures. It was very raised for me.

[Paulx222 in reply to PMRpro]

That's interesting!

Thanks for sharing.....I was confused when told my inflammatory markers were borderline raised at 23/24.......I was always thinking to myself 'It really doesn't feel borderline!'

Now I know

[DorsetLady PMRGCAuk volunteer in reply to Paulx222]

They may be borderline according to the labs range , but as PMRpro has explained that doesn’t mean they aren’t high for you individually. Have a look at this -

healthunlocked.com/pmrgcauk...

[Paulx222 in reply to DorsetLady]

Fascinating......thanks x

[DorsetLady PMRGCAuk volunteer in reply to Charlieanna12]

Well at least he is trying steroids -and not dismissing PMR completely-but as PMRpro has said bloods aren’t always raised. Sometimes too much emphasis is given to them - symptoms, ruling out other illnesses and the reaction to steroids are as important in the diagnostic process.

Please let us know how you get on..,

[Hidden in reply to DorsetLady]

When I was diagnosed, my rheumatologist had a student with him. He said to her something along the lines of... "As rheumatologists we treat the patient, not the blood results..." Although my bloods were pretty abnormal, I was much heartened by his attitude!

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

As it should be… hope he spreads that message far and wide…

[PMRpro Ambassador in reply to Hidden]

At least he teaches it - would there were more like him!! Far too many take what comes out of the lab as the gospel truth and not just a bit of (hopefully) supporting evidence.

[Charlieanna12 in reply to DorsetLady]

I was told earlier today that my GP has had another look at my recent blood test results and now I'm being told my calcium levels are outside the range.I've been booked for another blood test to investigate. Honestly, if I have many more blood taken ill be looking for a top up.

During the past year and after being diagnosed with Lymphopenia in October 22 I have had more blood tests than I care to remember.

Thanks for you're support as this is all new to me.

Merry Christmas to you

[DorsetLady PMRGCAuk volunteer in reply to Charlieanna12]

Blood tests -yes know where you are coming from.

I was a blood donor for many years before I was put on BP medication - so quite used to “giving”it… but like you at the beginning of GCA thought I might like some back.😊

Merry Christmas to you too.

[Charlieanna12 in reply to DorsetLady]

Hi,I thank you for taking the time to reply to my post.

I honestly don't know whether I'am coming or going. My gp said he thought I might have PMR but I'm not sure anymore. I'm also waiting for the results of a knee xray. Its was smashed up pretty badly after a car hit me at speed. It's being held together with metal plate, but I fear it might be failing me. Sometimes it fails to support me and is far more painful.

I feel like someone has it in for me.

Merry Christmas to you and thankyou for your kind words.

[PMRpro Ambassador in reply to Charlieanna12]

Is the knee an old injury? Joints that have been affected by such injuries are more likely to develop arthritis later, Giving way can be a sign.

Is your calcium low or high?

[Charlieanna12 in reply to PMRpro]

I was hit by a car 8 years ago and that's when my knee was badly smashed up. I do have arthritis in both legs, both feet and both hands.

And yes my calcium is high. I'm booked in for another blood test after Christmas.

[PMRpro Ambassador in reply to Charlieanna12]

Hope they are doing a vit D and PTH while they are at it ...

[Hidden]

I am glad you have someone who is flexible and who you can contact ahead of your next appointment if you aren't getting on well...that is what I have had to do and it is a huge relief to be seeing him today rather than having to wait until mid-January. On another topic...I know you have, as I do, bad shoulder pain...I have seen 2 physiotherapists recently and gained some interesting insights into the cause. In my case, inflammation has exacerbated a pre-existing problem with bad posture, something that I was getting away with before the PMR started. We had a good look at his rather macabre collection of plastic and rubber body parts and it all made some sort of sense. I have some very gentle exercises to be getting on with. All the best...!

[Paulx222 in reply to Hidden]

I was told on Tuesday not to force it. That I was on a long journey and that I needed to take it slowly and do what didn't hurt.

[Hidden in reply to Paulx222]

Yes...absolutely don't force it. If it is hurting it isn't working was the very strong message that I was given.

[Hidden]

When I saw my rheumatologist yesterday, he told me that a directive had just been issued declaring that PMR was to be managed by rheumatologists...not by GPs in primary care. This suits me very well, the rheumatologist gets back to me within hours of contacting him, the GP receptionist offers me a phone appointment in 3 weeks time. You said you had a difficult relationship with your GP if I remember rightly? Hopefully you will not be needing to contact them about your PMR care and can go straight to your rheumatologist with any issues.

[Paulx222 in reply to Hidden]

Wow, yes, that would be fantastic. Thank you for the update!

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Would be good if you could access that - is it nationwide or just local?

[Hidden in reply to DorsetLady]

I have just tried to find out...without success. I don't know who gets to decide these things. The rheumatologist said it was very recent news...just this week...but we had a lot to talk about so I didn't ask him any further.

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Would assume from BSR or EULAR - and that the charity [PMRGCAuk] would be aware - but nothing has been mentioned -so not sure. Which made me wonder if it’s a local NHS Trust edict.

Sure if it was widely known, PMRpro would be aware - she’ll be along shortly.

Interesting- but as it’s difficult to get to see a Rheumy at the moment, not sure it’s progress… 🤔