Immunosuppressed

[Booge_15]

I had PMR 13 years ago which was diagnosed eventuallyby my physio daughter when I visited her in London. I had what I think of now as typica PMR . My GP was very hazy about PMR but after a blood test that I requested she phoned to say my ESR was 70 and she had left me out some tablets. So was started on 40 mgs pred. I only saw the GP after that when I asked for a blood test. I managed myself by joining PMRGCA SW and helping the admin team I therefore had the benefit of an extremely knowledgeable leader who is a trustee of the the organisation and of course talks and visits from eminent professors. This lasted approx 5 years. About 18 months ago I felt it had returned but not quite the same. My shoulders this time had no pain or real stiffness and also hips not too bad . I was however very stiff generally when trying to turn in bed or get out of a chair and start to walk. and 'felt' as if I had PMR .So off to the GP had a blood test - ESR Raised. I started on 15 mgs of pred and am now reducing. I again instigate the interest from the GP (who I do realise this time is working in very different circumstances with all the work Covid has put upon the surgeries. )I chug along not too bad pain wise but I do have the feelings of PMR etc. I am wondering if I would be considered by the GP to have an autoimmune suppressed disease regarding covid vaccinations or at 77 next month my age for futher 'top ups' is sufficient . My ESR was 35 last week, having come down from 50 a few months ago. I phone her to ask for blood test very occasionally , I do not see the GP, she has never mentioned anything about being autoimmune suppressed. I have just recovered , I think, as there are no follow ups, from a blood clot the entire length of my leg.! I think that is a by the by!!!

I would welcome any comments although basically I think I am probably ok chugging along as I am1

[123-go]

Oh, dear! I really don't think you should be "chugging along" and managing this yourself. This forum is brilliant for advice and suggestions but it doesn't replace professional care. PMR requires monitoring and regular blood tests although these may be less frequent than initially and as you taper to lower doses of Prednisolone if your symptoms allow. You should have had a letter some time ago initiated by your GP stating that you are clinically vulnerable (immunosuppressed)and given advice for shielding. Did you ever receive such a letter? I'm shocked that your GP appears to have been extremely remiss in her duty of care. I would strongly advise you to press her for a referral to a rheumotologist specialising in PMR. If she refuses you should change your GP or if you are able to cover the cost, look for a rheumatologist in your area to seek an opinion.

You will be eligible, not least by age, for inclusion in the first group to receive the Covid booster vaccine.

The lack of follow up after the blood clot is also a concern. You need and deserve better care.

[Pixix in reply to 123-go]

But not everybody on steroids was ‘labelled’ clinically extremely vulnerable, I don’t think, & not everyone who PMR shielded...and after they’d learned a lot I think it has to be a pretty high dose to be called CEV? Am I right or wrong?

[123-go in reply to Pixix]

I couldn't say if you're right or wrong, Pixix. I can only go by my own experience. I had a letter early on telling me I was considered to be CEV with advice on shielding. Later on, my consultant confirmed this during a face to face appointment stating that I was very vulnerable.

[Sharitone in reply to 123-go]

I was never told I was CEV, even on 60mg. They just said to be sensible. But you can't have the booster till 6 months after the second dose, anyway.

[123-go in reply to Sharitone]

There appears to be a lot of variation re CEV among professionals!

[Pixix in reply to 123-go]

Yes, I was told early on...but then reduced steroids, but I have lung weaknesses, too. It was never as clear cut as in ‘if you have PMR you should shield’ in the UK! See reply below, 60mg & not CEV!!

[PMRpro Ambassador in reply to Pixix]

It wasn't the dose of pred that was critical - it was other adjuvant medications and comorbidities that it was based on.

[Viveka in reply to Pixix]

The JCVI advice on having a booster is:

high-dose corticosteroids (equivalent to ≥ 20mg prednisolone per day) for more than 10 days in the previous month

long-term moderate dose corticosteroids (equivalent to ≥10mg prednisolone per day for more than 4 weeks) in the previous 3 months

I dont know how they got to that, can only be a guesstimate, but I think the lesson is the further one is away from 10mg the less immuno-compromised one is. Do people think?

[PMRpro Ambassador]

It is less the PMR than the drugs you take for it that contributes to the immunosuppression - I think originally they would have considered 15mg immunosuppressed but whether they still do is another matter. I'm not in the UK, but as I understand it your age puts you firmly into the right sector for further shots and since you must be on a fairly low dose by now, you may well have developed some immunity with your first jabs,

Did they find a good reason for your lovely blood clot? I assume you were tested for the usual suspects?

[Booge_15 in reply to PMRpro]

I know I was sitting at the computer for too long however I do have Factor V Leiden which is a hereditary clotting disorder . About 1 in 20 of the population have it and may never know! My son had several clots out of the blue he had genetic testing as he was only early 20 s . Must admit as a nurse i had never heard of it. Often pregnancies are affected. The doctor at the hospital was surprised I had not had one before! . Anticoagulants for life now so all is fine. Thank you for asking - I have just started the maintenance do.

[PMRpro Ambassador in reply to Booge_15]

OH has protein C deficiency - same sort of thing. He had a femoral DVT in his early-mid 50s so has been on anti coags since and wears full length support stockings as well. The girls were clear though.

I'd think that also puts you up there for the boosters ...

[cycli in reply to PMRpro]

I'm AB+ and think I may have this gene also, so going to ask if I can be tested. i need to know as I'm on Apixaban seemingly for life now. Clots are worrying.

[PMRpro Ambassador in reply to cycli]

The thing to watch with Apixaban and some other NOACs is what other tablets you take alongside it - there are certain cardiac drugs in particular that affect the absorption and excretion and can cause the blood level to rise far higher than it should be. OH had that problem and his blood level was 10 times what it should have been with fairly serious consequences in terms of bleeding - the baseline level just keeps rising. It is fine if you take the NOAC and anything else at least 2 hours later. He elected to go back to warfarin and testing.

[cycli in reply to PMRpro]

thanks. That's worth noting. I was on warfarin and testing for the first DVT in 2012 and it was a pfaff but managed to get all clear after only 3 months of meds. so this situation of potentially life duration does present a practical problem.