Suspected Takayasu Artririts

[DiptiDesai]

Hi All,

This is my first post. I just had a call from Hammersmith hospital for my 1st consultation appointment on coming Saturday. I have severe dry cough since 1st October 2022 . The coughing has eased off a little bit now. Had 3 courses of antibiotics, several coloured inhalers, blood tests, Xray, endoscopy, two contrast CT scans, one contradicting the other. CT abdomen saying large vessel vasculitis CT chest saying clear. I do have raised serum alkaline phosphate. I have developed shoulder pain which is not shifting. I was urgently referred to Rheumatology department Hammersmith hospital 11 weeks ago. Apart from taking all the test and scan results, could any one with TA please let me know what else I need to take and ask at this 1st meeting. I know its short notice but it would be very helpful

Dipti

[DorsetLady]

Now you have posted - you can see related posts - there may be some advice in those, worth having a look whilst you wait for replies.

[AndrewT]

Dear Dipti,

I'm NOT Really Sure, how to Interpret/ Interpolate these, rather Contradictory, Results,,,, I suggest that, in the First instance, you Go back to your Doctors/ Consultant(s). Ask him/ her/ them to help explain them, to you. Yes you will, I strongly suspect, have to have Further Tests/ Investigations,

Hopefully, after these Test are 'done', there will be a, much Clearer, Picture of your 'Overall' Condition. Your Doctors should then be able to Better Advise you,

Sorry that I can't be Moe Help Dipti, a Lovely Name.... is it your own?

AndrewT

[Mooka]

TA is quite a rare type of vasculitis so a search on here is a great idea. Have you visited the vasculitis U.K. website? There’s a lot of useful information on there. You are finding out, as a lot of us did, that a diagnosis takes some time. I would certainly be asking what treatment options there are and ensuring you are talking to a doctor that knows a lot about vasculitis. Good luck. Let us know how you get on.

[DiptiDesai in reply to Mooka]

I am going thro the website pages. Seems a whole new world. I am seeing someone in Renal outpatients department in Hammersmith hospital. Is there anyone in the group who is patient at Hammersmiths. I will update you once I have been. Sorry Andrew I pressed the button quick. Thanks Its my real name

[Chezh]

Hi Dipti,I'm a bit late in replying but I have Takayasu & am treated at Hammersmith Hospital.

I now see Dr Youngstein (previously Prof Mason).

Hopefully, your appointment went well?

[DiptiDesai]

Hello Chezh. Thanks for replying. I saw Dr. Amjad Jilani at Hammersmith hospital and he has requested a PET scan and ANCA blood test. Waiting for the appointment now. Bit anxious. Not sure what to expect.