Rheumy appointment

[yorkshiregirl44]

Hi,

Got to see rheumy this evening, he said i dont have PMR and he would not have prescribed steroids for me. He also said i have no inflammatory condiiton and put my symptoms down to chronic fatigue syndrome and wide spread pain condition.

I asked about my raised esr and he was not concerned saying that many people as they get older have a raised esr with no underlying condition.

Not having PMR is good news but living with these symptoms is not.

He is going to leave the my file open for twelve months and within that time when i have swelling of joints or a flare of symptoms he is going to arrange for me to have an untrasound scan of them.

My daughter thinks we should ask for a referral to chapel allerton, i am unsure as i dont think at the moment i can face another appointment and maybe i should just accept the CFS diagnosis which is not new yet some of my symptoms and raised esr are new.

Thanks Christine

[PMRpro Ambassador]

I think your daughter is probably right. To the best of my knowledge neither fibromyalgia nor CFS lead to a raised ESR as they aren't due to inflammation. He's quoting what I was under the impression is an old-fashioned attitude. It used to be accepted that ESR rose with age but even then they reckoned that after 55 it shouldn't go up further but in the meantime it is thought that the raised ESRs in older people is due to undiagnosed inflammatory conditions.

I can't remember what your ESR is but if it were me, I'd accept a reading up to about 35 as maybe "normal for my age" but anything above that isn't. But even so - my ESR is actually in single figures, it always has been, but I had excruciating pain and stiffness that isn't normal. If you have symptoms then I think as much investigation as possible is required if it is available.

I don't remember - but am I right in thinking you were started on 15mg and when it didn't work in a week it was stopped? That isn't enough to say it isn't PMR - go on, take a deep breath and ask for Chapel Allerton. It isn't going to cost you a fortune and you will have another opinion from a superb group. I would.

[yorkshiregirl44 in reply to PMRpro]

Im 57 and my esr was 32 which has been raised only in the last few months.

For the chapel allerton referral do i need to ask for a named person or the rheumy department?

[PMRpro Ambassador in reply to yorkshiregirl44]

That's not massive at least.

Dr Sarah Mackie and her team are the rheumies I know. Prof Ann Morgan is a rheumatologist who works with her and does other autoimmune and musculoskeletal diseases. It is a big research centre too - so you'd expect a broad-based approach to deciding what is wrong.

Don't get me wrong, maybe they would think something similar but I think you would be examined/tested thoroughly by them and they might be more helpful with helping you manage whatever it is. No-one can produce miracles but there is a lot more to diagnosis than looking at you and saying "I don't think it is..."

[yorkshiregirl44 in reply to PMRpro]

Thanks, it cant harm to get a second . If i didi not have symptoms and feel terrible alot of the time the level of my esr would not concern me.

Thanks for all your help.

[PMRpro Ambassador in reply to yorkshiregirl44]

If you hadn't felt awful and gone to the doctor then they would never have known what your ESR was. Symptoms should always trump the blood tests - either way.

[PMRandRA in reply to PMRpro]

True. I have recently discovered that if the ESR sample is not analysed within 4 hours then it will not be a true reading but will show normal whether it is or not.

[PMRpro Ambassador in reply to PMRandRA]

Not sure if it will show normal but it will certainly not be accurate. But there are so many things that affect it anyway - including pregnancy! CRP will also shoot up with a chest or renal infection - something even some doctors don't know.

[Runrig01 in reply to yorkshiregirl44]

I suffered for 2 yrs with GCA symptoms being dismissed by local Rheumys because of age and normal bloods. I asked for a referral to Dr Mackie and her team and wish I'd done it much sooner. I had a thorough examination taking 4 hrs to see various members of her team. I travelled 300 miles to see her, and she has now taken over my care and I travel several times a year for follow ups. I agree with PMRPRO that she may agree with your Rheumy but you can be assured of her full attention and thorough examination. Good luck 😃

[yorkshiregirl44 in reply to Runrig01]

I could tell the way the rheumy was talking that chronic fatigue syndrome and fibromyalgia or wide spread pain would be his conclusion.

I think i owe it myself and family to go to chapel allerton. I guess i will need a referral from my GP.

Coming on this site has helped me so much and like your and many others i have been fobbed off from doctors only to find somewhere down the line my symptoms were significant.

Thanks

[Runrig01 in reply to yorkshiregirl44]

You will need a referral, if your in the Leeds area it will be straight forward. For out of area referrals your gp needs to have funding approved by your local CCG. I have attended a conference with Prof mason did a talk, who also seems to have an interest in pmr/ GCA. I sent Dr Mackie an email with my summary, and had a detailed response showing a lot of empathy. You have to have faith in your specialist, and feel you can work in partnership with them.

[yorkshiregirl44 in reply to Runrig01]

I intend to ask my doctor to refer me but see Dr. Mackie, if they refuse do you know if i can be seen as a private patient.

[Runrig01 in reply to yorkshiregirl44]

I'm afraid she doesn't do private work, as I asked her when I initially made enquires. Good luck 😃

[tangocharlie in reply to yorkshiregirl44]

I've just managed to get an appmt with Dr Mackie for January after an awful appointment with Dr Pease at Chapel A in summer. She is busy and you may have to wait but she comes highly recommended by several people on this forum.

[HeronNS]

You certainly deserve much more than you got from that doctor. Regarding inflammatory markers - I went to my GP repeatedly with no idea what was wrong except that I had pain "all over". When I told her that she said I would have to be more specific.... Eventually she sent me for a slew of tests, but told me everything was normal. She left the practice and my new doctor looked at the same test results, noted that my inflammatory markers were up (I'd never heard of such a thing at this point) sent me for more tests and within a week I had my diagnosis. My point is that my markers were not high enough to be noted by one doctor (a young one, I should say) but were a red flag for another, more experienced practitioner. I guess they say doctors "practice" medicine for a reason!

[PMRpro Ambassador in reply to HeronNS]

Some doctors have been taught and accept the older concept that anything up to 35-40 is OK in an older patient. The newer realisation seems to be what I always maintained - that the higher levels seen in older patients that contributed to the "normal range" upper level were not due to there being a natural rise simply with age but that the higher figures came from patients who had undiagnosed inflammatory illnesses.

Normal ranges are compiled by taking readings from thousands of "healthy" individuals and drawing a graph. There are always outliers of course but if you had a lot of elderly patients with sub-clinical PMR or other forms of autoimmune arthritis that were being put down to the "normal aches and pains of aging" then you would apparently naturally have higher reading in the older patient.

Like you I went repeatedly to the GP for 5 years - always normal blood markers, the highest my ESR has been is 7! The GP in the practice who would have recognised it was semi-permanently on maternity leave over that time and only worked part-time when she was there. I used to think continuity of care was important - I still do, but seeing a different doctor, even a locum, is often a good idea because they may see something your usual doctor has missed.

Anyone would think we enjoyed traipsing to the doctor to say we're in pain and then - even worse - are happy to take pred to NOT be in pain!

[yorkshiregirl44 in reply to PMRpro]

Yes who wants to travel in the cold and rain to yet another appointment..not me.

I had to have a urine test done at the end of the appointment and for the first time in a long time i had an ocular migraine attack, the loss of vision still terrifies me after all these years. I travelled back wearing a pair of sunglasses and felt very sorry for myself.

Since then i have needed extra pain releif for my head pain, miniues earlier i told the rheumy i only get mild headaches and not very often.

[yorkshiregirl44 in reply to HeronNS]

Even if its not PMR i still believe i have some inflammatory condition going on.

t scares me when you have an history of chronic fatigue that they put all symptoms down to that. I dont disagree with the rheumy about chronic fatigue as i have that but it not responsible for all my symptoms.

[Ida-June128]

I am sure I shouldn't post this but when my GP refused to admit that I had PMR I obtained some steroids through a private doctor and within 48 hours the relief from the pain was amazing. I then went back to him and said that this proved the PMR and he finally referred me to a rheumy. Possibly not the correct route to take, but it proved my point!

[yorkshiregirl44 in reply to Ida-June128]

You did what you had to do..lots of thyroid patients recieve medication that is not available on the nhs because they are not listened to by their own doctors.

Glad it worked for you.