Takayasu arteritis Please help!!

[jackson83]

I got diagnosed about 2 years ago, I was put on steroids and methotrexate, I took steroids for a matter of months and slowly came off these i was also having methotrexate. in about January thia year i stopped taking methotrexate as i didnt see it doing anything and i get a appointment about every 6 or so months, I have now been in the past 4 weeks in so much pain at the top of my arm and really bad headaches, My doctor is useless i struggle to get a appointment, I would just like some advice

[PatriciaAnn]

Hi Jackson

Unfortunately you don't see the methotrexate doing anything. It keeps your immune system dampened down and that way your body can't attack itself (or at least it reduces the chances).

Did you stop taking the methotrexate under the guidance of your doctor? I am not a doctor but I think what is happening is that you are flaring.

The relapse rate is high with Takyasu's, according to the Route Map for Vasculitis, "in the region of 90%".

I think you need to make an urgent appointment with your consultant.

PatriciaAnn

[jackson83]

No I didn't take advice off my gp to stop it, it was just not making a difference I was still in a lot of pain, I do not want to take steroids again as they made all my face and body bloat, it's just agony at the moment

[RichardE Volunteer]

Hi Jackson. As Pat says, I do think you need to urgently see your consultant to discuss this.

If you were still getting symptoms on the Methotrexate then they may have needed to adjust the dose or even switch you to another maintenance drug.

Unfortunately both the maintenance drugs and particularly the steroids do have some unpleasant side effects for us. But in my view the alternative doesn't really bear thinking about. Please talk to your consultant to see what they can do for you.

All the best,

Richard.

[jackson83]

Thanks, I have managed to get a telephone appointment with my GP this morning, I will have to see what happened from there

[Ayla Volunteer]

Felt obliged to dive in here, having read the conversation so far. Just to say that it is an appointment with your vasculitis consultant that you need, rather than your GP who is likely to be uninformed and basically unhelpful. Can you ring your consultant's secretary direct and ask for an urgent appointment? Tell her that you feel really bad. It is important that you do this before things get any worse. Let us know how it goes!

[BronteM]

I have Takayasu's too, so I can understand the pain that you are in. And I back Ayla....it is really important that you see your consultant as soon as possible. Takayasu's is a close cousin of Giant Cell Arteritis, and headaches and visual disturbances are really bad news. I went to the Hammersmith hospital for a second opinion, and they told me that if I had bad headaches I was to take emergency action, and put my steroids up immediately, or I could go blind. The Takayasu's unit at Hammersmith saw me very quickly...I found Professor Justin Mason's email address on the internet, and had an appointment ten days after I contacted him. Worth trying?

I was also on methotrexate...it did little for the disease and I had real problems with the side effects. It sounds as though you need to see someone quickly, and to review the drugs you are taking. Thinking off you - and with my fingers crossed!

[ipswichlady]

Hello Jackson, I too have Takayasu's and was diagnosed Jan 2012 like you. I also have sub-clavian (arms and legs) giant cell (head) and iliac (groin) and take steriods, and methotrexate by injection. - these are all part of Large Vessel vasculitis. I could not agree more with all the kind comments you have received and I so hope your consultant can help you and that you manage to get an appointment asap. Your body really needs the drugs - even though you don't wish to take them!

[jackson83]

Thanks everyone for your reply's, spoke to my GP this morning who was really good, gave me some painkillers but also have me the number for the consultant who he said I needed to speak to straight away as a result I have an appointment to see him at the hospital tomorrow, just wanted to say a big thanks for all your comments as they have been a great help as sometimes I feel like I am suffering alone with this

[BronteM]

That is really good news. Before you see the consultant it will may help if you look up all the info about Takayasu's on the Vasculitis UK road map. The website for the John Hopkins hospital in Baltimore, USA, is also good...they are the leaders in the treatment of Takayasu's in the States. I find that most of the other US websites are too over the top to help me.

[ipswichlady]

So pleased you have got an appointment tomorrow - very good luck - and don't forget to let us all know how you get on!

[jackson83]

Hi

Just to let you know, I saw the consultant today, he has done my bloods and a chest X-ray, he has also said he wants me to have a PET scan urgently to see if there has been any progression, he has not put me back on methotrexate yet as he wants the results of the scan first, they have given me a steroid injection, still don't feel the best, I have another appointment in 6 weeks when hopefully I should of had the scan then. Thanks

[BronteM]

The PET scan was probably the most important one that I had. Actually going for the scan was pretty boring though - you wait around a lot and you need to take a good book. I needed warm clothes too as it was done in a huge van that goes round to different hospitals, and there was snow on the ground. They give you lots of warnings about being careful for the rest of the day, as you are slightly radioactive for the next six hours! The results were very interesting though...any inflammation shows up quite clearly. I had a good(?) glow in my aorta, as well as my sub-clavian (arms) and carotid (neck) arteries but my legs were clear. Hope yours goes well, with no problems...