Hello

[Bramble2000]

Hello. I think I’m about three years roughly into my PMR journey and what a journey it’s been.

Throughout most of this time, I’ve been unable to take Pred due to debilitating side effects.

I’ve been feeling really rough throughout but felt pretty much the same until about six weeks ago when I’ve started to feel even worse if that’s possible. I have to have regular bloods done because of the Adalimumab injections I take for my Ankylosing Spondylitis. I had these done yesterday. My ESR has been hovering around 45 but has done up to 71. The CRP has gone up from being usually around 16/20 to 31.

I did try Methotrexate which I can only describe as the Devils work. Ive always been sensitive to meds. I’m fed up now. Is there anything else I can try that I haven’t thought about? No use trying to contact the Rheumatologist, they are cancelling appointments left right and centre. My ex husband has been doing alot for me at home but he’s moving away soon. I do have carers in each day but they won’t be able to do everything that needs to be done. Meanwhile I’m trying to look after my Autistic son who has severe ME.

thanks for “listening “. X

[Bramble2000]

couldn’t work out how to edit my post. This isn’t an AS flare. X

[DorsetLady PMRGCAuk volunteer in reply to Bramble2000]

Sorry no advice on alternative meds…

You can edit title of post to read something like - “Cannot take Pred for PMR, any advice on alternatives please” - or similar

Remember to select the Post option [in blue box] at the bottom of your post…

I know you probably don’t feel like it but would be appreciated .😊

[PMRpro Ambassador]

The only person who MAY be able to help is the rheumy. Don't think you can get past that.

[piglette]

Does your rheumatologist now think you have PMR?

[Bramble2000 in reply to piglette]

Yes after 18 months he finally sent me for a PET/CT scan that lit up like a Christmas tree for PMR. It’s definitely PMR.

[SheffieldJane]

When this happened to me at what I thought was the tail end of PMR it turned out to be extra cranial GCA. Ensure that you haven’t been brewing the sister disease. On the plus side it would open Actemra to you which maybe successful.

[Bramble2000 in reply to SheffieldJane]

Hi, how was that diagnosed? Thanks

[SheffieldJane in reply to Bramble2000]

My Rheumatologist has access to a Vascular Ultrasound Scanner. The abnormal ( GCA) cells were found in my left armpit. I have had various MRI scans since.

[PMRpro Ambassador in reply to SheffieldJane]

It isn't the cells they find - it is the changes in the artery wall that form the halo sign on the ultrasound that they find and it is confirmatory of the inflammation typical of GCA

researchgate.net/figure/Hal...

[PMRpro Ambassador in reply to PMRpro]

If you google "halo sign gca ultrasound" you will get a selection of images you can view online but which you can't download to get a link unless you pay ...

[Bramble2000 in reply to PMRpro]

How accurate is it? If someone has severe headaches, the next person has jaw ache and the next has a sensitive scalp, how do they definitively diagnose? Thanks. And, what about those who have eye issues? I’m mildly concerned about Scintillating Scotoma. Thanks

[PMRpro Ambassador in reply to Bramble2000]

It is said to be as accurate as a biopsy - although with both there is the limitation they rely on that artery being affected. The advantage with u/s is that the subclavian and brachial arteies can also be looked at - as was the case for SheffieldJane and large vessel vasculitis can also be identified, Symptoms vary from person to person, but that is the case for many diseases but they are often more significant taht blood marker results.

[SheffieldJane in reply to PMRpro]

I don’t think I have ever quite understood that, in spite of your and Dorset Lady’s efforts and even pictures. I kind of thought the blood cells showed their damage with the tell tale halo cells. Thanks as always. I find myself saying to people it’s not arthritis it’s Arteritis and it’s a disease of the arteries, then I kind of dry up.

[PMRpro Ambassador in reply to SheffieldJane]

The giant cells name comes from the fact several cells, each with one nucleus, fuse and form cells with several nuclei - which are bigger, giant cells. They make the artery wall thicker - and that is what creates the halo sign. Most inflammation causes swelling, swelling makes the artery wall stiffer and the space in the middle of the tube smaller - and reduces the blood that gets places the other side. What annoys me is that I can never find a simple explanation with good pictures. A picture paints a thousand words ...

[SheffieldJane]

I am so sorry for your situation. What are the debilitating side effects you suffer. We all live with some of them minor and major and have found ways to mitigate them. For you I wish you could experience the blessed relief that Prednisalone can bring. I felt reborn. I worry that other conditions will creep in like GCA with your unchecked inflammation. Is it possible to revisit this decision? Sending love to your dear son. Bless you. X

[Bramble2000 in reply to SheffieldJane]

My rheumatologist tells me that nothing bad will happen if the inflammation isn’t treated. I’m about 4 years in. Side effects, blood sugars more than doubled so I had to double the insulin which lead to loads of hypos and caused weight gain. Horrendous tinnitus. Extreme depression. Fluid retention. Severe insomnia which I got Zopliclone for but you’re only allowed to take it twice a week. The depression can’t be treated because I’m already on SSRI ‘s and the side can’t be increased. I just can’t cope with all that on top of everything else. I need to be able to help my Autistic son who has severe ME. I can’t make things even worse than they are already. The PMR pain and stiffness wise has remained the same throughout although my inflammation markers have gone up recently, I’m slightly concerned about the sclintillating scotoma I keep getting….

[DorsetLady PMRGCAuk volunteer in reply to Bramble2000]

My rheumatologist tells me that nothing bad will happen if the inflammation isn’t treated

Really? Can they give you a guarantee? Not sure many other medics would agree with them..

[PMRpro Ambassador in reply to Bramble2000]

"My rheumatologist tells me that nothing bad will happen if the inflammation isn’t treated"

He thinks does he? Well I know some who would disagree. Uncontrolled inflammation damages blood vessels and increases the risk of peripheral vascular disease. The risk of aneurysm increases if any of the main arteries are involved. It is said by several experts that there is a greater risk of GCA developing if PMR is not managed. Whole body inflammation is felt to increase the risk for various cancers and worsen mental health problems.

I realise you have problems with pred - but I think your rheumy is being a bit blasee about the risks.

[Bramble2000 in reply to PMRpro]

He’s blasé end of.

[SheffieldJane in reply to Bramble2000]

I would ask your doctor for an urgent referral to an Opthalmologist. This could be a warning sign of GCA, that doesn’t give second chances with your eyesight. I these attacks of disturbed vision continue I would be inclined to go to A&E or better an emergency Opthalmology Department, if you have one, within the hospital.

kind regards.

[PMRpro Ambassador in reply to SheffieldJane]

Doesn't need to be an ophthalmologist - the UES system in the UK will do the tests needed and refer if there is anything suspicious. Faster than via a GP.

[Bramble2000 in reply to PMRpro]

What’s the UES system?

[DorsetLady PMRGCAuk volunteer in reply to Bramble2000]

from FAQs -

healthunlocked.com/pmrgcauk...

Another for minor issues -

healthunlocked.com/pmrgcauk...

[Bramble2000 in reply to DorsetLady]

Oh yes, there’s one in Brighton. I was under them for years because of Scleritis.

[Bramble2000 in reply to PMRpro]

Also, if my symptoms are “just” scintillating scotoma and tinnitus, how would they test for it? I can’t see how I’d get a positive diagnosis? Thanks

[PMRpro Ambassador in reply to Bramble2000]

Examination of the retina can show if there is impaired blood flow to the optic nerve. And an awful lot of other things that may be signposts to serious conditions