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?

[Hidden]

Hi. i am sorry that you are landed with a rare condition and are therefore likely to feel alone with it. i hope you have more response from the vasculitis site and get some support/reassurance.

[DeeDB185]

Please go see a FUNCTIONAL MEDICINE doctor.. You can continue taking your medication but the functional medicine dr can do a comprehensive blood workup and try to give you supplements to help with your side effects. Maybe get you off the medication. I will tell you this because I managed a doctor's office for 20 years... - it is not mandatory for doctors to take continuing education courses on nutrition nor positive effects of certain supplements on any disease. It is strictly a pharmaceutical- dominated society where doctors will stick to the Standard of Care so they do't get sued or fired form the large medical healthcare systems they all belong to. WE need to think outside the box, spend your money wisely and find out how the body can heal itself. This is my journey and anyone who wants to see how I do with this is welcome to follow me. Thanks and best of luck to everyone...

[watson3]

So sorry to hear the the methotrexate is giving you side effects. I atoppped the oral tablet due to stomach problem and constant sickness.

I didn’t respond to the injection metho either.

Could it be the chemo that is the problem with facial and body hair loss.

Worth trialling another drug. Lots on market. Better to switch now than suffering.

Best wishes

Carole