PET scan & blood test showed no inflammation so Rheumatologist said I don’t have PMR & he cannot justify giving me any more Pred 🥲

[JEMOK]

Rheumatologist said the atrial fibrillation & glaucoma I have been diagnosed with are not symptoms of PMR. I had to reduce to 5mg for PET scan & all the original symptoms of PMR have returned with a vengeance but he has told me I have to reduce to zero pred at the rate of 1 mg a week

[Maisie1958]

Morning JEMOK just wanted to say how sorry I am you are in so much pain, others will be along to give advice on your AF (I thought it could be linked to uncontrolled AI problems) and results of PET scan (again thought 5mg of pred daily could possibly interfere with results) If they are absolutely determined to get you off pred you have my sympathy -perhaps if your CRP or ESR started to rise even if still within fairly normal limits, they might decide you definitely had something inflammatory going on? Otherwise I’d be looking for a more caring doctor that would actually listen to me, 1mg a week reduction seems very fast and I’d be worried about adrenal function not catching up as well as feeling so bad. Did they say what they thought could be going on if not PMR? My inflammatory markers stayed solidly in the “normal” range while on tiny doses of pred even if I felt awful, only getting to the not very high levels of ESR 27 when off pred completely but it was enough for the rheumatologist to decide it wasn’t just “wear and tear” making me so miserable and treat accordingly

Anyway, wishing you all the best and hope you get sorted very soon.

[JEMOK in reply to Maisie1958]

Thank you Maisie x I asked him if he didn’t think it is PMR what else he thought it might be & he said he had no idea. I also told him I was concerned about adrenal function when tapering so fast especially as I am already in so much pain but he just told me to do it & he would see me in 2 months when I’m off the steroids 😩

[Maisie1958 in reply to JEMOK]

Very difficult 😥 x

[123-go]

There is definitely a connection between AF and PMR. This has been discussed on the forum. If you put 'atrial fibrilation' in the search bar at the top right you'll be able to see these. Try the same for 'glaucoma'.If there was ever proof that your PMR has not 'gone' it's the return of your symptoms. Inflammation wasn't showing up in blood tests because it was being managed by the Prednisolone and here you are again in unnecessary and disabling pain! I'm so sorry for you.

You really need to see someone else who is more knowledgable than this rheumatologist and I would ring the department at your hospital first thing on Monday morning to ask for an urgent appointment with another rheumatologist. Be firm!

Just found this. Pages 1 and 2! ncbi.nlm.nih.gov/pmc/articl...

[JEMOK in reply to 123-go]

Thank you I will try to be firm. It is so difficult when someone implies you’re not in pain. I wish they could spend a day inside my body 🥲

[123-go in reply to JEMOK]

Yes, very difficult and so frustrating when the rheumy is dismissive of your pain. You know your own body better than anyone.

[PMRpro Ambassador]

I asked Prof Mackie about the a/f connection - she said it is common in the age group anyway. Which isn't what I asked - I asked was it more common in PMR/GCA patients!! No-one has looked at it seems. My a/fib coincided with the PMR and is always worse in a flare. It has also become far less of a problem since I started taking tocilizumab and when I do have an attack the tachycardia is far far less - heart rate hovering in the 90s and low 100s instead of 115-130 as it was before. And I don't think it is coincidence.

How long have you been on pred altogether? I suspect that even 5mg pred can be enough to hide PMR inflammation. I just looked - since Feb 2021. Taking you off pred now that fast is risky - 5mg is plenty to suppress adrenal function and 5 weeks is NOT long enough for it to return. Since he obviously is unlikely to be amenable to discussion you must try to get help elsewhere, your GP may be well enough up on adrenal function while tapering pred - demand referral to an endocrinologist immediately.

[JEMOK in reply to PMRpro]

Thank you PMRpro for your reply. My heart rate averages 145/150 during AFib attack. These attacks only started after onset of PMR as did Glaucoma but still I’m told it is nothing to do with PMR. I will speak to my GP when he returns from holiday but he is not open to discussion so it is unlikely he will agree to refer me to an endocrinologist. I live in Christchurch Dorset & am wondering if anyone knows of a GP who is knowledgeable on PMR 😔

[DorsetLady PMRGCAuk volunteer in reply to JEMOK]

Deeroy2015 lives in/near Christchurch so she may know.. hopefully she will see this and reply. If not you could Message her or contact the East Dorset support group - email - [e-mail]

[JEMOK in reply to DorsetLady]

Thank you so much for the information 😊 I will try to make contact with her via the support group email as I’m not sure how to message her 🤔

[DorsetLady PMRGCAuk volunteer in reply to JEMOK]

Just tap her name in my reply above -takes you to her profile-then select message -new page The contact at ED group is Pat -not same person

Further to PMRpro’s comments raised eye pressures are quite common with Pred especially at higher doses. Mine went up, but not enough to cause concern, but were monitored for a few months until they returned to normal as Pred was reduced.

So whilst the Rheumy is correct in saying they are not a symptom of PMR they can be a side effect of Pred.

But there is a difference between raised pressure and glaucoma.

[PMRpro Ambassador in reply to JEMOK]

Glad my cardiologist is more realistic! As an expert in a/f he is quite confident it was the autoimmune part of the PMR that also damaged the electrical cells in the heart that govern heart rate.

The glaucoma is possibly due to the pred - it is known it raises occular pressures and it can happen very quickly so we are usually told to get them checked for a baseline and then regularly after. Just raised pressures is not glaucoma, is it full blown glaucoma? - but the raised pressures can lead to glaucoma by damaging peripheral vision and the optic nerve which IS glaucoma. It can usually be managed with drops to reduce the pressure

msdmanuals.com/home/eye-dis...

Not sure about a new GP - is there another in the practice? But you could do with a better rheumy! Although to be fair - they aren't symptoms of PMR per se, but you have them BECAUSE of the PMR or its treatment so they must be considered as part of the overall picture. And even if they weren't - they need managing.

In the meantime - stopping the pred that fast could make you very ill so I would remind any doctor of that fact and that you will have no hestitation in making a complaint, with legal assistance if they persist with the plan. The UK isn;t the US in that respect but medical negligence claims are becoming more common.

[JEMOK in reply to PMRpro]

My eye pressures were raised & I was prescribed Latanaprost & advised I had open angle glaucoma & optic nerve damage & required laser therapy. The eye hospital have been amazing. I will share your comments with my cardiologist at my next visit too. He has put me on Edoxaban 60mg & Flecainide Acetate 50mg. With everything going on & the pain I am in I feel I need to increase my pred rather than reduce it at this present time 😞

[PMRpro Ambassador in reply to JEMOK]

At least they are rather more with it than your rheumy!!!!

[JEMOK in reply to PMRpro]

There is always a positive if you look for it 😊

[Nextoneplease]

I agree with the others. Please don’t reduce pred so quickly. I hope your GP can support you with pred, and ideally refer you to another rheumy, and/or an endocrinologist.

Hugs xx

[JEMOK in reply to Nextoneplease]

Thank you for the hug 😊 I really need to change my GP as he always blames the Pred for my symptoms & just wants me off them asap x

[cycli]

all good advice. Don't take any nonsense from medics. Just another opinionated Rheumy who is wrong. I am simply lost at their professions lack of knowledge and concern. They aren't all like that but the profession needs a thorough shake up in my opinion.

[JEMOK in reply to cycli]

You are so right cycli x

[yogabonnie]

Get a new Doc!.. so sorry you are in pain. If you have had PMR since 2021 it is unlikely it is gone (sorry) but it sticks around a long time in many cases. I am coming up to 5 years.. and while I think it really IS almost gone as I tolerate it on low dose prednisone now.. I have thought so before and flared... It goes when it goes. but you need to stay on the prednisone and not listen to this guy. !

[JEMOK in reply to yogabonnie]

Thank you I will do some research & look for a doctor who understands what PMR is. My body tells me every minute of every day that it is not gone 😔

[autumnlass]

I’m so sorry - 😔 that you’re suffering like this and hope you get proper treatment FAST! 🤗

[JEMOK in reply to autumnlass]

Thank you for your kind support 😊

[crafty_grannie in reply to JEMOK]

I know it is so hard to insist on what you believe you need when the doctor is being dismissive or dogmatic. Try writing down what you want to say before you go. I know I have trouble when someone disagrees and I believe they'e wrong. I just can't think of what to say in reply unless I have it written down. All the best and a big hug.

[JEMOK in reply to crafty_grannie]

That’s a great idea I will certainly do that & thank you for the hug x

[tangocharlie]

This makes my blood boil, we can't have meds that clearly help due to a patronising attitude that they are bad for us. It's supposed to be a two-way decision. The first rheumie I saw was an absolute idiot and said I couldn't possibly have PMR after 3 years so to get of steroids and take Gabapentin as it must be fibromyalgia. I protested the steroids worked brilliantly so it couldn't be fibro. I went back to my GP and insisted on seeing a different rheumie. But that was in the old days when we you could still get to see a doctor eventually. Yours may or not be PMR, all you know is that steroids work, as they do for many autoimmune conditions.

I'm in a similar position in a way, I have something called MdDS (Mal de Debarquement Syndrome) which is horrible, feels like I'm still on a boat a year later, rocking, bobbing swaying. There is no cure but for some people benzodiazapines MIGHT help, it is the only option available. The ENT consultant I saw last time wouldn't prescribe them because she said as they make you drowsy if I woke up in the night I might fall over. I'm stuck for what to do next, trying to go back to the GP to fight or get another opinion but can't get an appointment. I shall find a way, I'm not going to give up! 'These things are sent to try us' as they say in Yorkshire

[PMRpro Ambassador in reply to tangocharlie]

And the vertigo isn't going to make you fall? The risk of that at night is rather less than not being able to live decently all day surely ...

[tangocharlie in reply to PMRpro]

Exactly, tbh I was at a low ebb that day and didn't have the words, I was so shocked I muttered something about well I'm careful, hold on to things use a stick etc. She wanted to do more tests to rule out other things like Menieres, I said why don't we just try a short course of Benzo to see if they work, whatever it is, can't do any harm. I'll be better prepared next time,and my ultimate threat will be that I shall buy some on the internet if she won't give them to me. Or refuse to leave the room until I get them. I can't go on like this to be frank. Meanwhile I've had to have all sorts of other tests to rule things out like hearing tests (even though I protested there was nothing wrong with my hearing, which there wasn't) and visual tests to check my balance organs work correctly (they do) and now it's nearly a year since I first asked for a referral. All because doctors have fixed ideas about what's good for us. I know ther NHS was sued over Benzodiazapines as they are highly addictive and are reluctant to prescribe them, but when it's the only thing that can possibly help, surely?

[PMRpro Ambassador in reply to tangocharlie]

And you are a woman ...

[tangocharlie in reply to PMRpro]

I'm sure that's part of it, but AITA? (Am I The Asshole?) for thinking as a female doctor she'd be better? equally sexist of me. I also wonder what all the millions of (mainly) women who were previously prescribed Benzos for anxiety, sleep problems etc are offered now when they turn to doctors for help?

[PMRpro Ambassador in reply to tangocharlie]

Apparently they tend to be a bit marmite - either very good or very bad. And no, I don't understand the bad women either. Nothing probably ...

Just been reading the book about sex/gender imbalance in medical management, all aspects of it.

[tangocharlie in reply to PMRpro]

I've got some books on topics like that eg Invisible women and Everyday Sexism but every time I try and read them I get so wound up about the injustices of it all! On the whole my thinking is women professionals, not just doctors, are better than their male equivalents at the same level or higher because they have to be so much smarter and work much harder than their male counterparts to have got where they are. Luckily that's not hard as I think Mae West or some other wit said. My rule doesn't apply to senior politicians, who have probably used other ways to get to where they are and see other women as threats

Yes, I know over-generalisations and my tongue is firmly in cheek before anyone rises to my bait!