How often do you do bloodwork?

[sweiss72]

In Atlanta, GA, US, - have had since diagnosed in April of 2016 with PMR:

CRP (C-REACTIVE PROTEIN) 3/16: 1.2 and 10/104: 2.2

ESR: 3/16: 10 4/25:7 10/04: 14

Started on Pred 15mg and have been on 10mg for several months. Have tried to go down to 9 but had a relapse. Also developed shingles after the October bloodwork.

Rhumy had me down to come in again Feb. 17. Seems I understand that UK and other countries are getting bloodwork more often. Is that more normal?

Also had a steroid cortisone shot in my back on 11/28.

Rhumy has mentioned there is a new hopeful drug going through FDA testing here in the US, hopefully out next year. Anyone heard of this?

Love this site - your the only ones who understand when someone says their scalp and hair hurts or you can't lift something that this is real.

Sorry about our elections - we may be going to move and see you in Canada, the UK or like...... :{

[PMRpro Ambassador]

I very much think it depends on your doctor - some people will get bloods done every month, some every 3 months, some less often. Some - never, just like you!

However, if I have read your results properly you had them done pre-diagnosis and then a couple of times shortly after. I doubt they made the diagnosis using them did they? They look "within normal range" to me, particularly the ESR. Mine are also always down there so I try to avoid having them done as I have to pay!

Did your doctor not also do the rest of a panel of bloods? Urea and electrolytes, blood sugar, liver enzymes etc and a full blood count? They are also important to monitor the rest of your health - 6 monthly is usually considered adequate, mine are done annually-ish, and they should have been done around diagnosis to provide a baseline as well as ruling out other potential causes of your symptoms.

I imagine your rheumy is referring to tocilizumab/Actemra which has been Phase 3 trialled for GCA, seems to be very promising and has been granted breakthrough drug status by the FDA. It isn't yet clear whether it can be used in the short-term to achieve remission and stopped or whether, like in RA, it will have to be given monthly indefinitely. If the latter is the case it is expensive: $17K/year. Will reimbursement be approved by the insurers? And that is for GCA - not PMR. There have been a couple of VERY small short pilot studies, less than 20 patients if I remember rightly, using it in PMR. But the same applies - what happens long term and the cost implications.

[DorsetLady PMRGCAuk volunteer]

Hi,

Early days I had my bloods done every month, prior to reducing - but I did have GCA and it was diagnosed very late, so think my GP who missed the diagnosis was a bit worried about things getting out of hand again.

Once I got down to lower doses, and had changed doctors, I had them done every couple of months. As current GP says, the symptoms are the key things to go by,the blood results just add additional info to those symptoms

Don't apologise about your elections, many have already done that! Just so long as you did the correct thing!

My daughter, who lives in New Zealand, has said there is a lot of interest there from America😏

[TooSore]

I'm from New England and have PMR. I got a full panel of blood work, the usual for a physical, plus thyroid and lymes prior to diagnosis. I wound up switching rhuemetologist stop get better care. I then got SED and CRP every two months. The results were used in conjunction with my symptoms (more important) to talk about tapering. I'm 14 months past diagnosis and doing fairly well so blood work was just skipped and doctors appointment pushed out to three months. Since I'm doing ok, no other medications have been discussed., so I can't help you there. I'm sorry about the shingles- that must have made things more difficult.

[sweiss72 in reply to TooSore]

Thanks New England. I switched to a rhumy outside of Kaiser to get better care too. I am thinking I got PMR from the shingles vaccine last year. PMR is listed as an adverse effect of the vaccine. It took Kaiser almost a year to diagnose

[TooSore in reply to sweiss72]

For me it was six months for diagnosis. I think mine was a case of inflamation from an accident followed by a back injury. Add some MAJOR life stress events and the result was PMR.

[nancyannehanson in reply to sweiss72]

0H, I never put that together.what does this mean about your physical future??

[cdenoncourt in reply to sweiss72]

Interesting that you think that. I got shingles vaccine 1-1/2 years before PMR became noticeable to me and I sought diagnosis. If PMR was listed as a precaution for the vaccine in 2010, I doubt I would have noticed since I never heard of it. I too got shingles anyway when methotrexate was added to my treatment to try for "pred sparing effect". I think the 2 drugs together suppressed my immune system too much. MTX was stopped and the pred journey continued.

[cdenoncourt]

Hi sweiss72,

I live in Jacksonville, FL. I am treated by the rheumatology department at Mayo Clinic since late 2011 for PMR/GCA -- not confirmed by my Temporal biopsy on both sides. They rely on MONTHLY blood tests (CRP & ESR) and my perceptions to make their recommendations. Since starting pred my initially high inflammatory markers have stayed low and very similar to yours. After 4 years and 3 flares I learned to recognize an ESR rate climbing above 8 as a warning sign for me even though that is the middle of the acceptable range. It tells me not to reduce pred further until that number decreases. This usually tracks with my perceptions also. I'm doing very well at 4mg now and hope to reduce if next test is good. The monthly test is completely covered by Medicare and perhaps that encourages doctors here to order it as a guide to them.

[SusanEleven]

I'm in the US. My original blood work, physical exam and symptoms I reported led to the diagnosis of PMR. (Though my doc always reminds me she can't really say that's the diagnosis since there is no definitive way to diagnose it. But she ruled out everything else she thought it might have been. And the first dose of prednisone helped me in just six hours.) The next round of blood work was 30 days later. Now my rheumatologist has me come in for blood work about every two months.

[PMRpro Ambassador in reply to SusanEleven]

You have a VERY good doctor! Has clinical skills and did it right. PMR is a diagnosis of exclusion!

[Peggles in reply to SusanEleven]

Thanks for this - my story and diagnosis are very similar. But I'm still stuck on 14mg pred but with lovely low ESR and CRP. Is it the pred that keeps them down despite me feeling fatigued, stiff and sore? (Apologies for the whining)

[PMRpro Ambassador in reply to Peggles]

The fatigue is a different thing and isn't changed by the pred which just combats inflammation. The actual disease is still chugging along in the background and that is what makes you feel unwell. The stiffness and soreness I'd have expected to be helped by pred I must say - but I'm generally fine at my current dose, the weather today has left me stiff and sore all over. I know it is the weather because it was the same about 10 days ago - and all went away when it turned warm and sunny.

[SusanEleven in reply to PMRpro]

Yes, the weather. I have been a human barometer for a long time. Here in my part of the states it has been a wet and stormy spring and a nor'easter is due to hit Sunday. There will be many aches!

[SusanEleven in reply to Peggles]

My rheum doc only does CRP level. When first diagnosed it was 35. After my first month of prednisone it was 5. When I had my one and only flare from reducing too quickly I think the level shot up to the teens. It is now at 7. My doc looks at CRP trends over a period of time together with my symptoms.

My understanding is that since pred controls the inflammation your blood markers will be lower. Though this condition is so quirky I'm sure there are exceptions.

I'm at 5mg day after 16 months (started at 10). Fatigue is my biggest problem now. I am the queen of napping. I am better at pacing myself and have learned to be pleased with getting something/anything done in a day.

I'm also sore and sometimes stiff but it's not in any of my PMR areas and doesn't have the distinctive feel of PMR. I do have osteoarthritis that was masked somewhat by the early higher dose of pred. And fibromyalgia and likely bursitis. My soreness fades quickly in the morning unless rainy weather moves in or the local weather changes are rapid or volatile in some way. On rare occasions I take a single ibuprofen and it helps. So my doc and I feel that's my other "itis and algia" conditions and we'll hopefully find some approach that will help those things.

Sorry for the long ramble!