Takayashu arteritis

[Julesbanks]

I have had this condition for 9 months and have been treated with methotrexate and prednisone but the mxt made me lose hair and didn’t actually seem as though it was working. I’m now on chemo and have my last dose next week but again still unsure whether it’s doing anything. Still having hair loss and pains in legs can’t walk far. Is anyone out there with same condition?

[BronteM]

Are you being treated with cyclophosphamide? Both that and methotrexate had exactly the same effect on me. In fact it turned out that neither was effective on my Takayasu’s - and that the rashes and blisters that both caused were making me worse, not better. But that was six years ago, and now I’m treated with rituximab..... and it’s turned my disease round. But I believe there are other drugs out there now that are also effective. Where are you being treated? TAK is one of the rarer forms of vasculitis and you do need to be in touch with one of the centres that understand it and have access to a wider range of treatments. Good luck - I’m now off to catch a train and get to the clinic and my next infusion.

[John_Mills Volunteer]

As BronteM has said TAK is one of the rarer types of vasculitis. This page on the VUK website will help explain more about the condition. It was written by Prof Justin Mason who is the lead Rheumatologist fir Large Vessel Vasculitus at the Hammersmith Hospital in London, vasculitis.org.uk/about-vas....

If you are a member of fb there is a very active Takayasu Arteritis Support group with around 400 members.

[AmyS1]

Hello I have a different type of vasculitis.

Both Methotrexate and cyclophosphamide cause hair loss. For me the hair loss with MXT settled after several months on MXT. Also it improved gradually after stopping cyclophosphamide. Practically I wish someone had told me earlier about shampoos that help to make your hair look thicker eg Elvive fibrology thickenong shampoo. This has been helpful and makes you feel better. Do ensure that you are seen by a specialist centre. Best wishes Amy

[michichgo]

Hello Jules.

I have MPA and was treated with Cyclophosphamide but my side effects were very similar to those you've described. Once I came off of the cyclo, the hair came back in (I was thin atop!) and the horrible shooting leg pain stopped too.

It can be difficult to determine what is disease and what is a side effect. Best to discuss with your doctors; hopefully you have one that hears you. Good luck on your path to healing. Be well.