Who gets monitored by a blood test every 6-8 weeks when they are on hydrochloquine..?.

[loppylou68]

My Gp just said I should of been monitored by blood tests every 6-8 week's since o stared on hydrochloquine needless to say that's not been happening...... My whole diagnoses and treatment has been a catastrophe from start to finish

She says this could be why I'm now looking like the colour of a corn 🌽 fed butter ball chicken...and is sending me for emergency ultrasounds and blood tests...?

Has anyone else?!

[HollyHeski Administrator]

Been on it for over 5 years & not been told or had blood tests?

Have been told to have eye test yearly. Was also given a grid to check my eyes weekly-any changes to go to A & E.

Hope you sort your probs out-you do seem to be going thru it! xx

[loppylou68 in reply to HollyHeski]

Thanks x

[loppylou68]

Yes on 200mg twice a day

was diagnosed by Bhatia at hillingdon hospital and then confirmed by kashmater at guys an St Thomas at London Bridge Louise Coote Lupus centre

I'm am now under Dr Sangle at the same clinic..... The specialist's.....

I had a baseline measurement by optician when started hydrochloquine last year.

With all these new symptoms / issues and info from this forum I will be seeing the lupus nurse on Friday instead of having to wait till my next scheduled appointment at London Bridge.

My GP new nothing about APS before me.......so where this information has come from has thrown me...3-4 years ago she said I just had anxiety lol

Interested to know what the eye grid is though....

Continuity between GP's, APS specialists anticoagulation clinics, rheumatologists, gynecologists, Nephrologist, 2 neurologists and now possibly a hematologist has got me in a spin

Thanks for all your responses I can't talk to my family about most of this so I do appreciate your responses.

[anniesensi in reply to loppylou68]

I am under St Thomas' for APS, in my opinion you could not be being cared for by a better team. If you have multiple medical issues as I do they are usually very keen to transfer all your care to the specialists there so that they can easily liaise with one another. That could help with your continuity concerns.

They'll look after you.

I hope that's if some help.

[loppylou68 in reply to anniesensi]

Thank you for your supportive message.

I am just off to see them now,For that emergency pow wow / appointment with the Lupus Nurse.....

Just scared I suppose about now having multiple medical issue's that need continuity.

Just when your getting the grip of one diagnoses e.g APS

it's all been moving to fast for me

Thanks again though

[Ozchick]

Eye grid is possibly "Amsler grid" You can Google and print out one. Usually used to detect Macular degeneration. If you view it and the lines appear bent you get to an eye doctor pronto. I was told it's fairly low risk of eye problems but possibly you have an interaction with some other drug you're taking?

[loppylou68 in reply to Ozchick]

I will have a google later.....thank you

[CheddarAddict]

My GP got all uppity when I was put on Hydrox and decided I must have some blood tests for Kidney check even though they had been done by St Thomas before he would repeat prescribe but then he can be a plum.

[cami]

yes i was...blood tested every 6 weeks for 2 years....now blood tested every 3 months an of course have yearly eye test

[rlupus]

Hi i am tested every 6 to 8 weeks only because i have a lot of other medical problems , and my INR is done twice a week as its never in range.

And other have all ready said a yearly eye test.

[Jillymo]

I love butterball chicken would, you object to a bit of paxo ? Only joking. You be careful Christmas is on it's way and you never now where they may stuff it.

I'm on hydroxycloroquine and have not had any blood tests requested because I am on it but my eyes are checked every 6mths. I do remember reading something about the possibility of turning slightly yellowish whilst taking it. Sounds like your in the right place with regard to your care I hope they get on top of it soon or the yellow will clash with your red at Christmas. I hope your feeling ok in yourself whilst they are sorting this problem out. Aw bless ya our little chick. xx I appreciate it all seems to be moving all to quick to be able to take it all in but your in the right place and getting answers........that's the main thing. x

[KerryA]

Have you had a liver function test? Looking yellow could be linked with a liver problem.