Newly diagnosed.

[alanmitch]

Hi,I'm one month in taking steroids for large vessel vasculitis,things don't look too bad at the moment,just this last week I had both arms and legs scanned , it was said both lower leg arteries were blocked.Has anyone had experience of this?

[orsen-trapp]

Not personally but I have a large vessel vasculitis so dropping by to say hello. How much pred are you taking just now?

[alanmitch in reply to orsen-trapp]

On 35mg daily,3 weeks ago I had a stroke so at that point meds were put up to 50mg.how long have you suffered for

[Hidden]

I'm sorry to hear that. By the time I was diagnosed with GCA both my femoral leg arteries were blocked and I had to have my right leg revascularized. They replaced the artery with the vein from my lower leg. That was 2 years ago. I used to be an avid walker, but now I'm more of an ambler, but at least I can walk. The important thing is to keep on top of things so that the blockages don't get worse.

[alanmitch in reply to Hidden]

Hi,so good to hear the experiences of others,probably going the same way,heart scans come back all clear,have you been on maintenance steroids all this time then

[Hidden in reply to alanmitch]

Yes, got to zero last September and had a flare within a couple of weeks. Too fast a reduction at the end. My blood tests had been all normal within 2 weeks off the initial treatment so it was probably a bit of overconfidence on both my part and the doctor's. Take it S-L-O-W near the finish line.

[BronteM in reply to alanmitch]

It is good that you have had a heart scan and that it is clear as you will know not to worry if you get any pains in your chest - some people do.

Also, have you had a PET scan to check how active the inflammation is? My consultant advises no stents etc until the inflammation is no longer active, and ideally that needs a PET scan. It usually seems to take some time on immunosuppressants for that to happen; more than a few months in the cases that I've met, I'm afraid.

[alanmitch in reply to BronteM]

Blood results have shown inflammation levels are down from 143%% back in January to 25% and they said 15% is normal levels,so more patience needed on my part.Good to have jour experience and advice.I did have a pet scan 2 months back.

[orsen-trapp]

Alan, i was officially diagnosed with TAK in December, though on pred from august. No damage, thankfully, as pet scan picked it up after 3 emergency admissions with high fever and other interesting symptoms! Been reducing pred but relapsed so now on 15 with mtx added. Definitely not suffering, though can sometimes feel a bit grotty!

[alanmitch in reply to orsen-trapp]

We all seem to have it so different,my gas consultant hinted at me having TA,I think so.he did also hint at going on mtx maybe,how have the steroids affected your bones?I'm just just starting on bone protection..?.full of questions ain't i

[orsen-trapp in reply to alanmitch]

Gas as in gastro? Mine was the first to suspect vasculitis too.was put on calcichew at the same time as pred, plus alendronate, though I'm off that now. Still waiting for dexa result. My TAK seems to be hand in hand with crohn's.

[alanmitch in reply to orsen-trapp]

Auto correct,it should be vast consultant.lol.

Sorry to hear your vasculitis sounds complex,fingers crossed mine isn't as so,

[orsen-trapp in reply to alanmitch]

The only complicated bit is working out whether all sorts of odd symptoms are crohn's, TAK, pred, relapse, mtx, or none of the above!

[Hidden]

What specific type of large vessel vasculitis do you have Alanmitch? Is it Giant Cell Arteritis which is the most common form of vasculitis and affects large and medium sized arteries in the body. (sorry to hear about Jonnypup1, there is an emphasis on saving sight with GCA sufferers but the powers that be tend to sweep the rest under the carpet!)

[alanmitch in reply to Hidden]

WMTuk,not had a full diagnosis but hinted at TA,suffered pain at knees,hips and shoulders in the joints,pet scan confirmed.have had a stroke, bleed and clot plus a few little ones,hope this settles in due course.

[Hidden in reply to alanmitch]

Sorry to hear this alanmitch. Did you have symptoms for a long time or was it discovered as an emergency? Are you on Prednisolone or other meds? How are you now?

[alanmitch in reply to Hidden]

Symptoms were bad pain in knees,hips and shoulders,no emergency,I first started prednisolone 5 weeks back, the pain is all under control but my feet suffer with blocked arteries so are part numb and my calf's cramp up,,,

[Hidden in reply to alanmitch]

Hope you are soon well. At least they recognised the blockage. Have you had scans?

[Hidden in reply to alanmitch]

My feet and legs cramped up too,even at rest during the worst of it. Now with inflammation under control, my legs have developed alternate routes for the blood to travel. I can walk further with no pain. Hopefully you will be on that path soon.

[alanmitch in reply to Hidden]

I'm wondering with inflammation being well down and the Doppler scan last week showing blockages which way they might take things

[Hidden in reply to alanmitch]

Looks like you are responding to treatment, but what I learned is that the disease is still there, but being controlled by the prednisone, until it decides to go into remission.

[alanmitch in reply to Hidden]

Thanks for the info,I'm gaining more and more knowledge for the future,

[BronteM]

Hi Alan, sorry we have to welcome you to our very select band! I have TAK, diagnosed in January 2012, and am on rituximab, steroids and all the other things that go with them. Luckily? it is the arteries in my upper body that are most affected, particularly those in my arms and shoulders, so I only have intermittent pulses and my blood pressure is all over the place. I'm slightly surprised at your initial steroid dose....I started on 60mg a day, and have failed to get below 5mg as I'm not making enough natural stuff on my own. The 50mg you are on now sounds better. Also on calcium and vit D and going for a DEXA scan next month. You need one soon to establish a base line.

Jonnypup is right though - do try to keep moving gently as its good for the blood flow and your mood, even if it's only into the garden and back. Alexander technique has proved wonderful for me....breathing exercises when I was at my worst, and lots of gentle things to help me use what I've got as well as possible. Right at the beginning of all this someone told me, "I can no longer go for a good walk, but I've learnt that a gentle amble with a camera is still pretty OK".

But at this stage you will probably need to take things slowly and pace yourself carefully. Good luck.

[orsen-trapp in reply to BronteM]

Exercise also helps keep bones strong, of course. Wonder if I'll ever get back into the mountains :-\

[BronteM in reply to orsen-trapp]

Even a hill would be nice!

[orsen-trapp in reply to BronteM]

Yes. Had to resort to a stick on Fri to get back uphill with the shopping. Not been outside at all today -too woozy and heart messing around. Good day to do one of those jobs that get put off when I'm functioning! Hoping it's just my body getting used to the mtx I took for the first time on Friday.

[BronteM in reply to orsen-trapp]

It could be the MTX, so you probably need to take things pretty carefully. It seems to be a wonder drug for some, but not everyone. Have they given you folic acid too?

I just find it so boring that I can feel pretty good one day, do lots of gardening (yesterday) then have to spend today taking things quietly. It makes it so difficult to plan anything.

[orsen-trapp in reply to BronteM]

Yes, have folic acid. Felt good yesterday and planted some spuds but didn't overdo things. I agree, it's hard to plan anything in advance.

[alanmitch in reply to BronteM]

I've had a baseline bones can 2 weeks back and I'm starting on meds for bone care Tuesday,just hope the stroke side keeps OK.

I'm mobile but wonder about damage to my feet with blocked arteries,I had them scanned just last week so I'll be chasing things up next week.

[orsen-trapp in reply to alanmitch]

If it's any encouragement, and it is TAK that you have, my rheumy said it's the one she'd choose if she had to have any vasculitis!!

[alanmitch in reply to orsen-trapp]

That's good to hear,see how we go