LUPUS UK
20,835 members16,541 posts

Told they are now putting me on Hydroxychloroquine ?

Been seeing an Rheumo and Nuero for past year. Told I had MS but MRI was clear head and neck, so then told it was not. Told although I had positive P Anca Lupus test was negative it was not Lupus. Told I have bad Raynards and CTD.

Saw Rheumo yesterday and said they want to write to my eye consulatant and if he agrees put me on Hydroxychloroquine as I have gotten so much worse.

In a state of shock, were do I go from here?

I have vision and bladder problems which have been put done to Nuero problems, but can Lupus do this?

6 Replies
oldestnewest

CTD can do this 2 u too. Sorry u're having such an awful time but hopefully, things will soon improve.

Reply

DO NOT WORRY. They will keep checking your eyes. I have been of them for 30 years. and have an eye check every year. JUST MAKE SURE THEY ARE PLAQUINEL - and NOT the cheap derritive as they are not Coated and they gave me a upset tummy and sent my teeth brown ! Not a good look ! Good luck my friend I hope you improve.xx

Reply

Hi ,try not to worry ,easier said than done.I get terrible neuro probs ,mri clear ,CTD can affect the nervous system ,unfortunatley so can the drugs which is why i couldnt take hydroxy ,keep batteling x

Reply

Thank you all for your replies, Rheumie has not given me a Dx of Lupus to my face, re doings some bloods and wanting to put me on what seems a toxic drug. She said if eye guy gives the go ahead I will be sent to see a specialist nurse for the drug.

Waiting for letter from Rheumie to my Gp, I have req a copy comes to me, last time this is how I found out I had CTD!

Thanks again

Reply

From what i've read and been told, hydroxychloroquine is the safest of drugs. I've been taking them for years. So i would try not to worry too much.

Reply

hi l am on hydroxychloroquine, have been for years, dont worry my eyes are tested every year

inside and out

Reply

You may also like...