Thank you

[Dance62]

Thank you to everyone who has already replied to my post today about my condition. I've been told it's Giant Cell Arteritis, Vasculitis, Aortitis, depending on who I've seen in Rheumatology.

It's such a relief to be able to connect to other people with the same condition as me, because most places I've looked for information and support only refer to cranial or temporal arteritis which is not what I have.

My symptoms started with what I now believe was PMR. I was waking up in the morning unable to move due to severe pain and stiffness in my neck and shoulders. These symptoms were joined over the summer by weight loss, night sweats, rapid heartbeat, extreme fatigue and a general feeling that something wasn't right. I was only diagnosed after many other possibilities had been eliminated, including cancer in various areas, and a fantastic doctor who finally suggested a CT scan , where they found the severe inflammation in my aorta. I was immediately admitted to hospital and given IV steroids to try to bring my inflammatory markers down (they started at 132). After being discharged with a bucket load of medication, I was told to "live my normal life" I found that this was a long way from being possible and spent 6 weeks wondering if I would ever be 'normal' again. It was such an effort to do anything, I couldn't walk ten paces so going out was impossible. I lost all my confidence and I had to take a long look at how I was going to be able to continue to do the things I like to do, and had probably taken for granted.

I'm now 5 months into my treatment and getting a bit better at pacing myself, but still struggling with fatigue and now muscle pain too. I know this will be a long road but I'm trying to be positive and look ahead to the future with more confidence.

[DorsetLady PMRGCAuk volunteer]

You’re welcome,

Maybe have a look at this intro/info posts- and especially the links therein on pacing - and whilst I agree you need to live as normal a life as you can, life with GCA [whatever type] and/or PMR -it’s a new normal… and any doctor that thinks it isn’t needs a reality check.

healthunlocked.com/pmrgcauk...

I agree that most advice seems to refer to cranial GCA [and I think that’s because sight loss maybe catches the headlines], extra cranial GCA does get mentioned and in its own way is just as serious , but it’s seems to be more recently that it’s been referred to as LVV. So that may be why it’s appears more difficult to find information.

However once diagnosed, the treatment is virtually the same.

..and what muscle pain? What dose are you on now?

[Dance62 in reply to DorsetLady]

I'm on 20mg of Methotrexate and 9mg of prednisolone, amongst all the other stuff. Tapering down by 1mg a month on the steroid.The muscle pain is mainly in my arms and comes and goes. Also have tinnitus, which I think I've read may be to do with the medication.

In terms of pacing and living a new normal, I've actually gone back to doing exactly what I was doing before, which may be why I'm struggling with fatigue.

[DorsetLady PMRGCAuk volunteer in reply to Dance62]

Few points -

Going back to exactly what you were doing before - no wonder you are fatigued.

Do you mean tapering by 1mg a month? How come you are at 9mg then after only 5 months? That sounds as if you started at something like 15mg Pred -is that correct? If so then that a PMR dose, not GCA.

Tinnitus can be down to meds, but can also be GCA.

Is muscle pain more inmorning before Pred kicks in?

Would also be good if you could add to your profile please - just copy/paste what you wrote in this post. Then you don’t have to repeat yourself in future. Plus gender, age and country of residence .

[Dance62 in reply to DorsetLady]

I came out of hospital on 40mg, then dropped by 2.5mg once a fortnight each month until I got to 10 mg in January. Now dropping by 1mg a month until I stop at the beginning of November.

I'll add to my profile tomorrow, but I'm female, 61 years old and live in England.

[DorsetLady PMRGCAuk volunteer in reply to Dance62]

Okay -thanks

But there’s no guarantee on November…

Ps - re SheffieldJane comments see this-healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

It's the whole point of the forum - connections. The first English charity in the NE of England made a DVD called "You are not alone". Once you share your fears and problems, they feel less awful.

Muscle pain?

[winfong]

Don't know if it's any help, but our journeys are so similar

[Dance62 in reply to winfong]

It definitely helps, thank you.

[SheffieldJane]

Forgive me if I have misunderstood you. I am going through a phase of brain fog since Covid.

Are you expecting to come off Prednisalone to order in November? This is very unlikely. The average time for PMR to burn out is around 5 years, a little shorter for extra cranial GCA but it sounds like you have both - the typical PMR beginning and now pains in your muscles etc. It sounds like you are on too little Prednisalone with all these poke through symptoms. You don’t say if you are getting your advice from a Rheumatologist, you should be and one who knows about PMR and GCA/ LVV. A Cardiologist won’t necessarily be up on the treatment of these diseases and will tend to focus on what is best for your heart. In my experience specialists tend to work in silos on their own specialisms.You need to be on the correct dose of Pred that should relieve at least 70% of your symptoms. A tapering programme should then be followed, have a look at DorsetLady’s in FAQs, on here. You should not taper if you are symptomatic, under stress or ill. It is a good idea to do the last 5 mgs by half a mg. to give your Adrenals time to recover. Again, apologies if I have got hold of the muddy end of the stick.

[random901 in reply to SheffieldJane]

I agree with your comment re Rheumies and Cardis operating in isolation! Only one rheumy, a registrar, agreed with me that there was a possible connection between my thoracic aneurism and undiagnosed GCA!

[Missus835]

I'm so sorry you're going through all this. My current symptoms parallel yours, even arm muscle pain. Not so much fatigued as extremely shaky. GP phone appointment on Friday and I'm going to read her your post, as I'm pretty sure she thinks I'm bonkers by now. Can't get through to Rheumatologist as usual. Thanks for this post. It tells me exactly what I need to know. 🌹