GP Monitoring

[sauntergirl76]

My GP is looking after my PMR does not seem keen to refer me to a Rhummy had PMR 10 weeks not had a blood test since the first one. How often should I have ablood test.

[Mary63]

It varies a lot I think. Some people have them monthly. I haven’t had one since diagnosis in Jan 2016!

[sauntergirl76 in reply to Mary63]

Many thanks.

[Theziggy]

What dosage of steroids are you on? What is your tapering plan? I would say that a good GP is better than a bad Rheummy

[sauntergirl76 in reply to Theziggy]

thanks for your reply. Started on 20 9 ,weeks ago reduced to 17.5 4 weeks ago.

[sauntergirl76 in reply to Theziggy]

started on 20mg 9 weeks ago now on 17.5 see GP on Monday no tapering plan he just suggests a reduction.

[Visby in reply to Theziggy]

Most definitely

[PMRpro Ambassador]

You might wait months to see a rheumatologist depending on where you live and providing there are no difficulties about the diagnosis, pred works at a moderate dose and you are able to reduce OK there is felt to be little need for a specialist. As Theziggy says, a good GP now is far preferable to a dodgy rheumy in 6 months time!

You should get checks of Hba1c for diabetes monitoring every 2 or 3 months to be sure it isn't rising (pred can lead to steroid-induced diabetes and prevention by changing how you eat is far better than cure). BP checks are also good. If your ESR/CRP were raised at diagnosis they need to be checked to be sure the pred is working and that you are still on enough to keep the inflammation under control but if your symptoms are well controlled that is a good guide and one that trumps blood tests anytime: you can have normal bloods and symptoms showing that maybe all is not well or you may have a raised blood test because you have a cold or chest infection and that doesn't necessarily mean you need more pred.

[Dewdrop456 in reply to PMRpro]

Can I jump in?

My latest ESR was 21 I felt fairly alright.Would that level of inflammation be enough to do any harm? Should I increase the Pred a bit? This has been something that makes me curious.

Thank you very much.

[PMRpro Ambassador in reply to Dewdrop456]

ESR is affected by all sorts of things (even pregnancy, not that I'm suggesting that applies to any of us!) and it also depends what your lowest achievable ESR is. Mine is 4, so 21 would be a sign of a fair bit inflammation but someone else may have an ESR of 20 and that is their "normal" even though they have no inflammation that can be identified. However, it could be due to a cold! Usually they say that an increase in ESR which is not accompanied by symptoms should not result in a kneejerk increase in dose - the test should be repeated a week or two later and the trend established. ESR itself isn't a particularly meaningful test - but the trends it shows in individual cases are useful.

[Dewdrop456 in reply to PMRpro]

I will bear that in mind and see what the next level is .

It was 85 when I was eventually diagnosed but I really don’t know what my lowest achievable is .Thank you.

[Purplecrow]

Since my PMR diagnosis , Sept, 2013, My blood checks are rare, and have never revealed anything of substance. Last time the tech took about 6 vials of blood, and I never heard a word about anything.

I think there is a box that needs to be checked, but IMO the blood tests for PMR are pretty overrated as diagnostic or preventative measures.

One caveat, It is important to monitor A1C (blood glucose) levels if diabetes is a concern. I bought my own blood test kit at the pharm, and check it monthly. No problem after 5+years pred.

These are Just my opinions, I expect the scientific minded folk view it differently .🤪

Kind regards, Jerri

[PMRpro Ambassador in reply to Purplecrow]

I agree with you Jerri - and you won't find many more science-minded than me!!!

[Purplecrow in reply to PMRpro]

Happy to note😁 ! You are my Hero.

[PMRpro Ambassador in reply to Purplecrow]

I worked in the labs - many doctors put far too much faith in numbers without understanding them!

[alvertta]

I have a fasting blood test every two weeks. Check diabetes, sed rate and protein. Then I decide my reduction of prednisone. Been doing that since GCA diagnosis in October 2018 Results remind me to stay on track with no sugar no carbs diet. See my family doc once a month. See rheumatologist every three months.

[sauntergirl76 in reply to alvertta]

thanksfor your reply.

[Theziggy]

As a type 2 diabetic - who pre this immune disease kept it in the 'normal' range with diet and exercise for 10+ years, but steroids have seriously affected my blood sugar levels. Even fasting shows high BS levels!!!

As for check ups - I get called in maybe once a year for an Hab1c and other tests.

[Hidden in reply to Theziggy]

They should be calling you in every 3 months for hba1c. 12mths is a long time. Despite your experience of management if pre-existing diabetes, hba1c can change a lot in 12mths with steroids and other meds. I started new med and it pushed my morning BG from its usual 6.5 to 7.7-8. for a few days I had forgotten the new med and wondered why it was rising.

[Polymialgia]

As you are in UK it would be most unusual for you to see rheumatologist, PMR is not really a serious condition ie, you won’t die from it , so NHS guidelines do say GP management should be sufficient, I think how you feel and taper yourself is far more important than blood tests,

[PMRpro Ambassador in reply to Polymialgia]

Although many UK rheumatologists are of the opinion that every patient should see a rheumy at least once. I was referred to one and so were many of the people I know - but it takes such a long time in some places it does make sense for a GP to at least start treatment.

[Polymialgia]

As I said I took the information from NHS website, I also think there are various strains of PMR as the Americans seem to have so many more symptoms. I was almost paralysed by the time I saw my GP but not really in any severe pain, 4 hrs after 15 mg of prednisone I was moving again it was almost a miracle I’m now entering my 3rd year and down to 2mg no pain , no stiffness just a bit of fatigue with each taper

[sauntergirl76 in reply to Polymialgia]

So many thanks for your positive reply. How much do you taper at a time. I see my GP tomorrow.

[Hidden in reply to Polymialgia]

I would be interested to know why you think Americans have more symptoms.

[Constance13 in reply to Hidden]

So would I!!! PMR is PMR!

[Polymialgia in reply to Hidden]

They seem to take so many medications and see so many doctors and yet still complain about pain, stiffness etc

[Hidden in reply to Polymialgia]

Mmmm. Hard to respond to that. I have not really noticed that trend. Maybe expectations differ as regard to diagnosis and treatment if it is a trend. Perhaps there's a cultural difference. I don't know. PMR is PMR as c13 says.

[PMRpro Ambassador in reply to Polymialgia]

They are often given painkillers which are a waste of time, the right dose of pred is the painkiller. And many US doctors are very keen to lower/stop the steroids too soon. There are varying presentations of PMR but not a US version and a rest of the world version. And as Poopadoop says - expectations have a major role to play. After all, Brits do have a reputation for being stoical ...

[Yellowbluebell]

I was diagnosed in Oct 2018 and gp started me on pred after the blood results came in. He referred me to a rheumy because of my age (55 and totally irrelevant as there are younger than me on this site). He didnt feel the need to taper until I saw the rheumy in January 2019. My rheumy appt was delayed so gp decided to start my taper in Feb at a very relaxed rate. Saw rheumy and he slowed.the taper down even more but he didnt feel the need to have me return to him as long as I was happy with gp monitoring it. I have an open ended appt to see him if I need to. My gp is great and has no problems handling my care. I have only had one blood test since the diagnosis one. I check my glucose levels myself. I am.lucky in having a great gp and rheumy but as people have pointed out already a good gp is worth their weight in gold when you get a rubbish rheumy.

[Rugger]

It's almost 3 years since I was diagnosed with PMR and I've had 21 blood tests. Averaged out, that's every 3 months, although the intervals have been various. I've had 3 'flares', so my GP reviews me regularly. I'm fortunate to have a wonderful GP, who did refer me to a Rheumatologist, but I had to wait 6 months for the first appointment and most follow-up appointments are 6-monthly, but my GP is always there for me.

I hope Monday's appointment went well.

[sauntergirl76]

So many thanks for your reply. Saw GP on Monday and he really was very nice. I did not ask to be referred to a Consultant because he does seem caring. I have been reduced over 10 weeks from 20mg to 15mg. He has explained about problems with reduction. At the moment I am seeing him monthly. I feel that I can talk to him quite openly.

Thanks again for your reply.

[PMRpro Ambassador in reply to sauntergirl76]

Sounds positive!