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[Mootje1967]

Hi I'm Monique from the Netherlands and diagnosed with vasculitis takayasu a few months ago. I want to know and learn how other people deal with this strange and difficult disease and share things. In my own coutry it's hard to find people who also diagnosed with tak.

[joglo]

Hi

I was diagnosed with TAK 2 weeks ago but seem to have had it for around 14yrs undiagnosed. I don't have any active inflammation but have considerable damage to my aorta cos it went so long untreated.

Best wishes - Jo

[BronteM]

Hi Monique,

The problem with TAK is that it is very rare; I believe there are about 380 known cases in the UK, so there will be even fewer in the Netherlands. I was diagnosed in January 2012, but like Jo, mine has probably been rumbling along for a long time. By the time I was diagnosed I had no pulses in either arm, damaged carotid arteries, and an inflamed aorta. Still no accurate figure for my blood pressure.

In the UK the initial treatment is with high doses of steroids (60 mg of prednisone a day is typical) then with immunosuppressants such as methotrexate or cyclophosphamide. The tests done can include CT scans, MRI or MRA scans or even a PET one. My arms and shoulders and the arteries in my neck have been monitored regularly with ultrasound too. In my arms the arteries were so blocked that I had grown little capillaries round the blockages, which meant that I still had fingers that worked!

I lived in Holland some years ago, so have some idea of how your health system works. I do hope you are beginning to feel better and understand more about this very weird disease. This is a great site...there is always someone who can answer your questions!

[Mootje1967 in reply to BronteM]

Thanks for you're answer. I think I've been walking around with it for a year and last February I've got all kind of scans,and the petsan showed that my aorta and the connectict arteries were all infected. So the name takayasu came around. I've got prednisone 80 mg a day but it didn't work out. They took me up in the hospital andgive me 1000 mg prednisone by infusion a day for three days, that was hard to go trough but the infection in blood went down,so it works. My blood pressure went high,but it's stay stable now with medication. No I'm on 80 mg prednisin a day and next month it go's to 60 mg. I've got a lot of pressure and pain in my head, shoulders, arms en legs,and stomach pain when I've been eating.And I feel so very tired ,I feel like i'm 86 in stead of 46. I hope when the prednisone go's down and my blood stays good. I'm gonna feel a bit better, it's not nice to go through like this everyday. But I must stay positive and go on, there are worse things in live I think. Thanks again for you're reply. Xx

[ipswichlady]

Hello Monique,

Good to talk to you!

I too was diagnosed with TAK in January 2012, but before that I had polymyalgia for approx. 2-3 years. The TAK was diagnosed like yours with a PETCT scan and, like you too, I started off with 1000mg prednisilone infusions in hospital over 3 days. I can remember being frightened and not understanding quite what was happening. My aorta is disfigured and I have sub-clavian,(arms/legs), iliac (groin) and gca. If your medication follows on like mine - my prednisilone went down and down over the last 2 1/2 years so I am now only on 5mg per day - but also take Methotrexate (to supress the immune system) firstly by injection once a week, but now changed to tablets. Again - a mirror image of yourself, pressure and pain in head, painful wrists, stomach pain, fatigue, painful to walk etc. However, with the amount of time that has passed since diagnosis, I am so glad that the doctors are "managing" me, love spending time with my family and grandchildren and friends and, as you say, being positive is a great strength. Days or nights can be difficult but look after yourself, give into the fatigue a rest when you can and, as you so rightly say, there are worse things to have! Keep smiling and there are lots of brilliant people on Vasculitis UK who will always listen and help when they can! Very best wishes to you x

[Mootje1967 in reply to ipswichlady]

Oke but how are you now, still in pain and problems with arms and leggs,ore is that become better? At the moment I've got totally no condition, I feel like a very old woman, the normal easy things ti do are taking so much energy from me ,I wonder if that's get better in the future. Or isn't much to say about because it's changing in periods when the infections ate active again? I also thinking a lot about my work as a nurse. My cheaf cold me on the fone how it's going and hopes when I'm going down with the prednisone , it's getting better with me and maybe come back to work. I said I don't know how it's gonna work out,at the moment I can't say a thing about it.ofcourss I hope I can go back andwork again,but how I feel now,I'm glad I'm alive and wrestling each day trough. I think she don't understand how it is to feel what I feel. But I'm just in the beginning with the medication and it's gonna take some time and patience. I hope you can read my English, sorry if it is wrong in some words .

[BronteM]

There was a meeting for vasculitis patients near Cambridge last December, and I met two people there who have TAK and are working. I'm not, and I admire people who do. As you say, the two main problems are fatigue and infection, so once you feel you are improving enough, it is probably best to start with one or two days, and then do more if you can.

But before you get that far, you have to learn to cope with the drugs, and they do make you feel very ancient and odd! My doctor warned me at the beginning that the steroids would give me a tough time until I could start reducing them. The lack of sleep was dreadful, and so were the weight changes etc, but they do go as you get on a lower dose. Now I am on 5mg a day, and things are a lot better; I'm sleeping better so I have more energy and I don't think I get cross quite as often. The last clinic told me that I am nearly 'stabilised' so things should keep improving a bit more. I do have less pain, and I've learnt to manage it, but it is still there! Changing the duvet cover is still sore, and so is getting dressed. Hanging out the washing too...but now I know that the pain stops as soon as I rest my arms, and so I can cope.

You are right to take things day by day at this stage, but things will gradually improve. Sterckte!

[Mootje1967 in reply to BronteM]

I know it's gonna take a lot of patience and time,but I'm just at the beginning of it and some days I'm so down and sick of it to feel each day so tired and pain everywhere. I'm 46 but feels like 86. My arm's and legs have a sleeping feeling ,and I'm so swollen up from the prednisone, I was on 80 mg and now for three weeks on 60 mg,but the swollen gets more,I thought it would be taking down.

[ireneghng]

Dear Monique. I got it in April this yr. Still under medication. I still do not know how I got it. My Dr said even a slight sore throat can trigger it. Most probably due to my immune system. I also hv Vertiligo. Also due to immunity. Will inform u once I hv more info.

[BronteM]

I'm sure you are feeling really dreadful right now - I know I was. This is a really tough disease, and there are lots of people who feel the same as you. The disease is bad enough...and then the doctors load us with steroids and a lots of other things that make us feel even worse.

One of the hardest things to learn is that this is a problem that can take a long, long time. Most of us expect our health problems to go away quickly nowadays; an aspirin or some antibiotics fixes it, and then we go back to our normal lives. Vasculitis is quite different, and there is a lot of anger and grief attached to that.

So, don't get too angry with yourself because you feel so awful still. Just try and give yourself little treats each day and grit your teeth - you will get through.

A neighbour of mine was put on syeroids three years ago for another problem. She put on a LOT of weight and had the huge circular face etc. Since she stopped the steroids, all the weight has gone, and I wave to her each afternoon as she takes her dog for a walk. But I do remember times when we propped ourselves on the fence and wailed together about how awful it all was.

[Mootje1967 in reply to BronteM]

Thanks, sometimes you need to hear these kind of words so you know you're not alone. Some people don't understand what this disease is and think you'll get better after the medication, and can say stupid things . Again and again I try to explain then what it is,and it's chronicle disease, so I've got to deal with it the rest of my live. And most important, accept how live changing and stay positive to go on.

[RosieK]

Hi Monique, jst saw your post. I was diagnosed with TAK in 1966, when I was 17. Very little was known about it back then. I spent a year in hospital on / off while they tried to find a treatment for me. I was. put on high dose of steroids, which was gradually decreased over the years. There is bit more info and treatment for it nowadays. I have helped out with research for TAK over the years ( hopefully has been helpful ) My left radial pulse is absent, jst had appt with specialist on Friday and at moment pulses in my feet are absent. In general though disease is calm at moment although , I believe once you are diagnosed with it , damage has been done. I have tried out methotrexate , and other meds. But didn't help me. I suffer pretty much same symtoms as everyone else with TAK eg, fatigue, pain etc. but you just get on with life. I had two children, none of them have disease . So That's. Good. I also have osteoporosis and Ankylosing Spondylitis , which is also an autoimmune disease. I think I got a lot of my other health probs through being on steroids over the years. I find it a little but harder to cope with it all as I get older, but we can't let these things beat us , can we ? Good luck x

[Mootje1967 in reply to RosieK]

Thanks Rosiek for your commend. I find it difficult to live with it or in other words to accept it,because in a short time it changing my life so fast,I can't do the things I use to do,feels like I'm twice as old in a few months. I've seen my doctor last week and the blood results were good she said and the prednisone is going from 60 to 45 mg a day. What I don't understand is that why I'm feeling so tired and have pain in my arms legs stomach and pressure on my face if the blood results are that good. And why I'm still so swollen up from the prednisone I started in March with 80 mg and now at 45 mg ,but still I feel like a balloon that's gonna explode. My bloodpresure was to high unless the medication I take for it,so I've got another pil to it. Hope it's gonna work. Next week I'mgoing for a exam off the arteries in my leggs,because they feel like sleeping all the time and offer are cold. I can't walk good because of it. And I get a angiography of my eyes because I don't see sharp and feel sometimes pressure on my eyes. It's a very complicated disease, that's for shure.