has anyone else got large vessel vasculitis , I was told this week I have this .my problem started 12 months ago with cramps and twitching,

[lisaains]

pretty much all over my body .I was sent to a nuro who said I had isaacs syndrome .after a long battle with the medical team I was given a chest ct scan to check for tumors as I had a horrid pain in chest , on the scan it showed my large vessel plus some others had large vessel vasculitis . they say this a very rare to be in the places is it , can some one please give me some info to the treatment they are on .I am currently on 12 prednisolone a day for 6 weeks

[ipswichlady]

Yes I too have large vessel vasculitis. All I can really tell you is that I was diagnosed at Addenbrokes Hospital in Cambridge, via a PET-CT Scan which shows up where the vasculitis is. These may now be done bi-annulally. Mine - like yours - is through my heart Takayasu's (aortitis) vasculitis (which mainly affects Japanese women under 30!!) and I also have sub-clavian (though my arms) and iliac (groin) through my legs), and Giant Cell (head).

I was started off with steroid infusions (which I believe prevented sight/hearing loss) then progressed on to prednisilone in tab form - very high doses per day 60mg - and now - 18 months on - down to 10mg one day and 5 the next day etc. I also have to inject methotrexate one a week take several other tablets as listed on my profile. I am looked after by Addenbrokes and Ipswich Hospital - where I live. I am not sure where you are based but Addenbrokes has a specialised vasculitis clinic to which people are referred to from all over the country. It is very good. I too have been told what we have is very rare - welcome to the club - please send me a message if I can help you at all - and hope this helps a bit?

[lisaains in reply to ipswichlady]

many many thanks for all your info I live up north and my main hospital is preston and I must say they have not been great so far , but now they have found the problem I am really hoping to get more help I will let you know how I get onx

[BronteM]

Hello, I also have large vasculitis;Takayasu's probably. Not sure that I should say welcome, but you are joining a very select few! I was diagnosed in January 2012, after a CT scan, ultrasound on my arms and a PET scan. They showed up inflammation in my aorta and inflammation and scarring in the arteries in my arms and neck. Explained why I felt so ill and dizzy every time I searched for cat food on the top shelf... The biopsy of an artery in my temple was clear, so makes GCA less likely. I was started on 60mg of prednisone a day, but have now tapered down to 8mg. The consultants don't like you on high doses of steroid for too long (you'll feel the same after a bit) so you get put onto another anti-inflammatory such as methotrexate, cyclophosphamide, cellcept, rituximab...there are several and its a case of finding the one that suits you best. I'm now on rituximab, as well as all the pills that go alongside prednisone.

I'm also looked after at Addenbrookes. I had a new ultrasound there on Wednesday. The expert who did it told me that he has worked there for six years, and I was only the fourth Takayasu's patient he had seen. He was very interesting, and pointed out lots of differences between the problems that he was finding in my arms, and the usual atherosclerosis that he sees.

BTW, do get everyone to check your blood pressure carefully. If your arms are affected, you probably have a poor/no pulse and the smaller machines don't pick it up well.

Good luck!

[lisaains in reply to BronteM]

thanks so much for your info , I kind of feel I am in a mind field the is so much I don't know yet , cause I have not yet seen my consultant I know very little I have spent months looking for what it could be moto nurons ,ms ect then to get told it could be things that may never be found , now I know I am just as lost , would either of you know what our long term prognosis is as I am still in shock at what the dr told me the other day which was if had it been not found I may have only had a few months left ,xx

[BronteM in reply to lisaains]

Long term prognosis for large vessel arteritis isn't bad. But you are absolutely right that the outlook isn't good if you are not treated. The specialist's main aim is to get us into remission and keep us there on the minimum number of pills. I've been told that its not a "we will cure you" disease, but a "we/you will learn to manage it and keep it under control" one. It's one of the many autoimmune diseases, so it can strike at any age; think rheumatoid arthritis or Crohn's disease if you want some sort of a comparison. I'm much more stable in the last six months and getting back into a more normal life and routine. BUT, you must learn to pace yourself and not get too tired. A busier day often has to be followed by a quiet one, and I always keep something quiet to do for when I have no puff left. There are things that i have had to put by ... no more travelling to obscure places, long walks (especially up hill), standing for any length of time, etc. This site is fantastic - there are so many people out there to give you help and advice and reassurance. But it is a very steep learning curve - not just for you but also for the people looking after you. A couple of weeks ago, my GP told me that she felt nervous every time she saw my name on the appointment list! I give her a different problem every time...

[JontyW in reply to lisaains]

VasculitisUK have produced an excellent document to describe all the disease types, it is called "Route-Map-mar-13" and if you private message John_Mills I'm sure he will send you a copy.

The section about Takayasu Arteritis says this ...

(Note that the mortality is low, but relapse rate is high at 90%) .. I hope this helps...

What is Takayasu Arteritis?

Takayasu Arteritis (TA) is an inflammation of the large blood vessels. The disease is also known as “Pulseless disease”. It primarily affects the aorta (the major blood vessel which carries blood from the heart and supplies oxygen to the body) and the largest arteries as they branch off from the aorta.

Who are affected?

The majority of patients with TA are female (aged between 10 and 40 years).

What is the aetiology (cause)?

The cause of TA is not yet known.

What are the symptoms?

Initially many patients do not have symptoms, but those reported include fatigue, fever, weight loss,myalgia (muscle pain). Other possible symptoms include necrotising rashes, ulcers, and facial rashes similar to those found in Lupus.

Making a diagnosis

Examination usually indicates decreased pulses in the arms and legs. Imaging tests (angiography) of the major blood vessels will show how severe the narrowings are. Some specialist scans such as

positron emission tomography (PET scanning) or magnetic resonance angiography (MRA) may be able to show if there is inflammation in the blood vessels or just scarring left behind by previous inflammation.

Treatment

When there is active inflammation treatment with steroids and possibly additional immunosuppressant drugs may reduce further damage or scarring to the blood vessels. If there is severe narrowing in the arteries restricting the blood flow to important organs then surgery or angioplasty may be required to improve the blood flow. This is usually undertaken after the inflammation has resolved.

Side effects

For the side effects of the drugs used see "Glossary of drugs and side effects".

Prognosis

The relapse rate is high (in the region of 90%) and in some cases damage is permanent. However, mortality is low. Mortality directly related to TA usually occurs from heart failure, heart

[lisaains in reply to JontyW]

so thankful to you guys , it is so much better to get real people to explain ,taking in medical terms can be hard to take in thanks from the bottom of my heart xx

[JElsom]

Hi. Sorry to hear about your recent diagnosis. I have Takayasu's Arteritis as well - diagnosed in January 2008 after an 'interesting' year of tests. Initially I had inflammation in my aorta, sub-clavians and carotids which seemed to be successfully managed with 18 months of steroids and a some immunosuppressants (azathiorprine and when I didn't tolerate that mycophenolate). After a couple of stable years they were even talking about me coming off the mycophenolate. However, I have now had a flare which has rumbled on for a couple of years (my TAK is not fast moving) which has been hard to control causing probably permanent damage to my left sub-clavian (causing problems with my left arm), new narrowings in an artery leading to my bowel and one of the arteries leading to my left leg. After more steroids and a course of low level chemo (cyclophosphamide) before moving onto methotrexate things have finally calmed down.

I'm lucky enough to live less than 10 miles from Addenbrookes in Cambridge which is one of the best centres for treating vasculitis and feel that all the Drs know what they're doing. Treatment is an ongoing battle as you have to find the drugs you can tolerate and ones that are effective for you. And then this can all change! Expect GPs (nurses, medical students etc ) to be fascinated by the condition but to not really have heard of it. You have to become a bit of an expert which is where sites like this are invaluable.

It's not all doom and gloom though. I should point out that during all of this time I have worked full time, had very little sick leave, maintained a pretty good social life, and been on more long haul holidays than I can probably afford. One of the first things that Dr Jayne (consultant at Addenbrookes) said to me was something along the lines of 'you've just been diagnosed with something pretty nasty go and do things that make you happy'.

Good luck!

[lisaains in reply to JElsom]

thanks for that , I most say at this time life feels pretty complicated and the unknown as to what will happen .Work has been playing on my mind a lot ,I have 3 children a 15 year old and 5 year old twins plus a very good husband but I feel as I am putting them through a lot of stress and the guilt I feel is massive .I want them to have a normal life and not have to worry about me .it is nice to know that you travel as I still want this for us . I feel a little worried that I will not get the advice I need as I am no where near this hospital that you are at ,and the hospitals are very honest with telling me the is very little they know ,which I fully understand and lay no blame ,would you mind telling me how the medication affects you ,ie did they make your hair fall out,how sick did you get . I ask this because I have taken them in the past for 3 eptopics and I felt pretty sick and it is only a tiny amount I took .I really do thank all of you for your help xx

[JElsom in reply to lisaains]

It is all very overwhelming to begin with and I hope you you start to feel more in control soon. I've had a few side effects-with azathioprine it affected my liver and with mycophenolate it upset my stomach both of which are pretty common. I actually find methotrexate to be fine- I have a very small amount of hair loss but only noticeable to me. I take folic acid to help with the side effects and the dose of this can be upped if you're suffering.

As BronteM said Dr Jayne certainly sees patients from much further afield and works with local consultants for continuity of care. It maybe something to consider if you don't feel like you're getting the best care.

[BronteM]

Good morning.....hope you are not feeling completely overwhelmed by everything we've all told you. In case you feel that Addenbrookes is the only hospital, there are other options. There is a very good TAK unit at the Hammersmith Hospital, under Professor Justin Mason. Both he, and Dr Jayne, are happy to work with, and through, local hospitals and will be able to advise you on your best options. I saw Prof Mason last year, and he was really down to earth and reassuring - but Addenbrookes is easier for me to get to.

[lisaains in reply to BronteM]

good morning thanks for that , I am going to pass this on to my doc , trust me to be northen lol

[LynneJ Vasculitis UK Volunteer]

Morning

As Jonty says. We have Routemaps available.

This is the link to the Routemap on line

vasculitis.org.uk/about/rou....

I have some hard copies and if you want one to take to your Consultant please message me, I took one to my GP and they have found it invaluable.

Best wishes

Lynne Jacques

[JontyW in reply to LynneJ]

Lynne,

That link does not work. Gives .. "Server Error in '/' Application."

[LynneJ Vasculitis UK Volunteer in reply to JontyW]

Sorry. Try this one vasculitis.org.uk/about/rou... If that doesn't work I will ask Pat.

[JontyW in reply to LynneJ]

That works fine .. thanks. JontyW

[lisaains in reply to JontyW]

thanks again for all this info and help from you guysxx

[lisaains in reply to LynneJ]

brill , xx

[cedric]

I have just come out of hospital after two wks been on r chop infusion got to have six more infusions as day case over the next twelve wks monoclonal igm kappa and polyclonal igG suggests type II mixed essential cryglobulinaemia but I believe had flare up due to minor trauma turned into alca as any one else expericed this plz let me know many thanks cedric