Is there anyone that has been diagnosed with Takayasu Arteritis?

[Queenie-Stardust]

Hi Everyone it would be great to hear of anyone that is suffering from Takayasu Arteritis. (Inflammation of the large vessels) I was diagnosed in summer 2017. It's very rare apparently! My immune system is attacking the large vessels.

I take 20mg Methotrexate a week, I'm currently on 7mg Prednisone (started on 40mg!) 5mg Folic Acid daily except on days I take Methotrexate. Meds seem to be working, although I do get slight symptoms occasionally. Be amazing to hear if there are any other sufferes out there?

[Hidden]

Hi, You would be better to join the Vasculitis UK community on here. There will be other members with TAK. You could also visit vasculitis.org.uk/ website for more help and information. All the best.

[Queenie-Stardust in reply to Hidden]

Thank you so much. How do I join the Vasculitis forum? Much appreciated 😊

[Hidden in reply to Queenie-Stardust]

At the top of the page you will see "my Hub" you can search in there, or visit healthunlocked.com/vasculit... and tick the "Follow" box. The group name will then be added to your list of communities in yoy hub.

[eidsnowball]

Hello Queenie-Stardust: Hi - I am unfamiliar with your medical problem. I could probably answer questions about prednisone, however, you should ask your physician first.

[3imara]

I use it for flares. When I am really sore for more than two to three days I increase it to 6 or 9. On the sore days I take tramdol but if I need it for more then 3 days in a row I up the prednisone. This way I do not get dependent on either one. When it calms down I taper down to 2 or 3 over 4 days if a short period. Slower if I have been on it a while. Was off of it last summer but a death in my family put me back. Methotrexate gave me a staph infection and I only do Meloxicam now. I do the paleo diet and yoga. RA.

[Hidden]

Hi I was on methotrexate tablets for about a year, felt I’ll all the time, nausea, dizzy and just not right, I was then put on to the injections at 20 mg. but still not great, I was then on 10mg injections and coped with that but have since been put onto Cosentyx injection and have been taken off the methotrexate as rheumatologist said it wasn’t doing anything, I was diagnosed with rheumatoid about 20 years ago but I came off all meds 3 years ago and was covered in psoriasis so they said it is psoriatic arthritis I have and this biologic drugis what I need, I do not have any psoriasis at all now but my joints are still painful, I have read on this site a lot of people who swear by methotrexate so I hope you have some success with it, best wishes for the future.

[Queenie-Stardust in reply to Hidden]

Thank you. It seems to be working at the moment, fingers crossed! I take 5mg Folic Acid daily except for the day i take Methotrexate and it has helped with side effects which had been horrid. Hopefully reduce prednisone by another 1mg soon which will bring me down to 6. I'm sorry your still suffering so much, it's very difficult to keep positive at times. I've come to terms with my illness now and try my best every day but even so, it can be quite challenging at times. It's good that your psoriasis has now cleared up but horrid that your suffering such pain. I hope you feel better soon. Take care.