Vasculitis

[Creamtea]

I have had PMR for 3 years and GCA for 1 year. Following a PET scan last week I have now been diagnosed with vasculitis of the subclavian arteries and have now had my Leflunamide increased from 10mgs to 20 mgs weekly. I am at present taking prednisolone 5mg daily and slowly tapering. Can anyone give me information on Vasculitis, treatment and prognosis.Thank you

[PMRpro Ambassador]

There are a few people on the forum with similar experiences. Although I think most are on tocilizumab, I'm pretty sure someone was put on leflunomide.

I'm sure one or other will appear soon

[marigoldb in reply to PMRpro]

Can you help with a group for this please? As well as pmr I have MGUS, since 2016, picked up by chance, I’m now anaemic on Folic Acid 5 MGM’s daily and as iron deficient starting on iron tablets. Feeling rubbish at present with fatigue and aches. Would love to hear from any one else with similar? Thank you

[PMRpro Ambassador in reply to marigoldb]

Group for what? This group, PMRGCAuk is also for patients with LVV and you will get more contacts here than you are likely to on the VasculitisUK forum.

If you mean MGUS - I would think you might get contacts on the LupusUK forum, I'm sure I remember it being mentioned on there, or on the NRAS forum because it is also associated with RA. OTOH, a new post here may get a response although I don't really remember anyone saying they have MGUS in the last few years.

[marigoldb in reply to PMRpro]

Thank you, MGUS is called smouldering multiple myeloma. I will try their website.

[Hidden]

You poor thing. What symptoms were you presenting with for your present condition ? Have the symptoms of PMR and GCA gone ?

[DorsetLady PMRGCAuk volunteer]

Might be worth having a look at this HU forum - healthunlocked.com/vasculit...

This is the main website as well - vasculitis.org.uk

[CathyMeg in reply to DorsetLady]

Thank you.

[123-go]

Hello, Creamtea. Snap!I was diagnosed with exactly that last September. I'm asymptomatic. I'm taking 10mg Leflunomide daily and 2.5mg Pred but will soon be starting a slow taper of the latter.

I've scoured the internet to find a name for this type of vasculitis but the closest I've arrived at is Takayasu which apparently affects young women in their 30 - 40s. As I'm in my late 70s I've discounted that but we all know that the age consideration is not reliable. The rheumatology nurse told me it's 'aortitis'....inflammation of the arteries, basically, and somewhat obvious.

To be quite honest, after initially driving myself up the wall with all the internet probing, and as I don't have any pain or other symptoms, I more or less now just take the meds and hope my consultant is doing his job. 🤞🏼This really isn't like me: I usually want to know all the ins and outs and a prognosis would normally be one of those things. I will find out more when I have my next face to face appointment in September but if anything changes for me as far as symptoms go, I will be on the phone to the hospital pdq.

In the meantime, I eat healthily, sleep well, do household chores, garden and walk for around 45 minutes most days. Some people like to swim or do gentle yoga. I keep promising myself to take up the latter ......

I wish you well and hope your new journey is smooth and problem-free.

I'll be looking out for more posts from you.

[PMRpro Ambassador in reply to 123-go]

Have you seen this?

academic.oup.com/rheumatolo...

[123-go in reply to PMRpro]

I've just read this-thank you. You are a mine of information and have an admirable knack of digging out papers and studies applicable to many of us here. I haven't seen anything as pertinent as this but admit I find it very technical! I'm going to need to read it several times as many of the terms are beyond me. Next time I read it I'll have pen and paper to hand to make a list and then, one by one, try to decipher them. 🤔 Watch this space 🙂.

[PMRpro Ambassador in reply to 123-go]

I'll tell him when I see him to make them a bit less jargony He's my rheumy ...

[123-go in reply to PMRpro]

Ha ha! Yes please. Jargonless would be even better for the plebs.

[Creamtea in reply to 123-go]

Yes I understand there doesn't seem to be any simple information about this problem. I felt I was doing well and slowly reducing the steroids and wham another problem. I didn't have any symptoms except jaw pain and headache which doctor

Thought it was because I grind my teeth so dismissed that As the temporal scan was clear.

[DeepThought2]

Dear Creamtea - sorry to hear about your diagnosis. I, however, think that it is nothing to additionally worry about. The paper linked by PMRpro above indicates that up to 80% of the GCA sufferers have also large vessel vasculitis (LVV) (e.g. of subclavian arteries or the aorta). As PET/CT scans are expensive this is however often not diagnosed. Treatment against GCA is also effective for large vessel vasculitis. I am suspected to have LVV and I am treated with actemra and prednisolone (6 mg at present).

[123-go in reply to DeepThought2]

You, I and Creamtea will be able to form our own club. I will be at the bottom of the class 😏.

[Rugger]

I have had PMR since 2016 and in 2019 was diagnosed by PET-CT scan with GCA-LVV (Large Vessel Vasculitis) in my aorta and its branches. I am on Tocilizumab (TCZ) and prednisolone. In the UK the prescription of TCZ is time-limited, so I may eventually be given Leflunomide or Methotrexate instead.

The academic paper that PMRpro has given is informative. I intend to talk to my Rheumatologist about prognosis, but I do hope that as LVV is a form of GCA, it may eventually go into remission, along with the PMR!

All the best.

[Frewen1]

Hello Creamtea, I was diagnosed with GCA by pet scan last August, after a mere week of feeling”fluey”,the only symptoms - I have left temporal and aorta inflammation. Started on 60mg Pred; when I was tapered down to 17.5 I had a double-vision flare and put back to 60mg, with extra Methotrexate added this time around. Still being asked to reduce Pred by 10mg per fortnight, which I’m ignoring and doing 5mg every two weeks from now on to see how I go ... but the MTX addition is a gift too far in my opinion .. as I’ve shared on here recently, the toxic dizziness and wobbliness is much increased ( although I try to,pretend it isn’t happening ). PMR Pro said she only took it for a month. I have a consultation hiatus now until mid June, but am going to ask about alternatives. Good luck to you.

Sorry about this length, but in other news, the Leeds research project being discussed a couple of days ago is actively looking for GCA applicants, they want “ as many as possible participants, as it’s a rare illness”.

[springeramber]

Hi CreamteaI have been diagnosed with large vessel vasculitis, as far as I know it is inflammation of my subclavian arteries and aorta and is treated in the same way as GCA - I did have temporal arteritis (not officially diagnosed) with the headaches and jaw aches but that seems to have disappeared. I do not have any symptoms, am on a tapering regime to be off prednisolone hopefully by next January and I am starting tocilizumab next week with a delivery schedule lasting a year - am feeling very positive now that I have a positive diagnosis - I don't know anything about the other drugs apart from methotrexate which did not work for me but the tocilizumab appears to be the in drug for GCA/LVV (if you can get it!!) you have to have loads of tests before you can be approved and it does not suit everyone - also depends where you live I think.

Hope you make good progress - just think of it as GCA