Update on Hostile Rheumatology Appointment: I Finally Have Treatment 😀😀. And Update on Punctal Plugs.

[Foggyme]

Hi All. In Janurary I posted my first post here - quite upset - and not a little angry - because I'd just had a consultation with a really hostile rheumatologist who was refusing further treatment following a severe reaction to hydroxychloroquine.

I saw him on Wednesday (the third appointment since the hostile event) fully expecting to be refused treatment again...but guess what, he's finally agreed to treat my symptoms (UCTD - with features of lupus, Sjogren's and vasculitis) and prescribed Azathioprine. Took the first dose this morning...no dire effects..but no improvement yet 🙄😀😀.

I think the fact that he had four letters from other consultants (ENT, Opthomology, Endocrinolgy, Dermatology), helped. They all pointed to an underlying autoimmune condition and suggested that treatment with autoimmune suppressants would (perhaps 😉) be useful.

And even more surprising...he was really...well...nice...pleasant...

So...I had decided that this would be the last time I saw him if treatment was not forthcoming...but as he's now changed his (what felt like entrenched) position, I'll stick with it and see how things go in the future (but I have an alternative lined up, just in case 😉).

Have to admit that the thought of having to take such powerful drugs is a bit daunting...but I'm so hopeful that they'll make a difference.

So...what next - re-referral to neurology (ANS involvement/power outages in legs), re-referral to gastroenterology (increasing dysphasia, multiple gastric symptoms and gut dysmotility etc.) and lip biopsy in October.

Punctual plugs are not going great - prickly sore blood shot eyes and pulling 'white string' out of eyes (but not infected). I think that they may have to come out when I see the Opthomologist. However, thanks to pinkandfluffy , Barnclown for suggesting hylo-forte eye drops - a great improvement on hypermellose and Actimist. Just introducing Artelec night time gel as well, since vision still very blurred. And will ask about ikervis ciclosporin when I see the eye 'bod' on 11 September. I'll post an update when I've been.

Have to say, I didn't realise how blurred my vision had got until I started having brief moments of almost clarity.

So...that's me for now...sorry it's a long one...and oh my goodness...autoimmune is so d****d tricky!

Thanks for the help all...don't post often...but read all the time😀 xx

[Hidden]

Hi there - this is all great news apart from the punctal plugs which I've been referred to opthamology for. But as this was ages ago and I've heard nothing - I'm becoming increasingly unsure about whether I should have them so I should start asking others like you. I use artelac and it's great but I use it during day as it gives me longer and is more like drops than gloopy gel. But I still need lacrilube at night - especially when things are bad. I also have celuvisc and Hyloforte and use whichever feels most appropriate at the time. I've now got a small black back pack for my kit!

It's lousy when we have to be flagged up by so many specialists in order to get further treatment from the main specialist. It should be the other way round. I do hope the Azathioprine works well for you.

[Foggyme in reply to Hidden]

Hi Twitchtoes. Yes...great news. And I know what you mean about flagging by other specialists. I think the endocrinologist said it all when he told me, 'what you need is a good rheumatologist' and went on to identify the very same name passed to me by Paul_Howard .

Have to admit, part of me still thinks I should change rheumatomogists 'cause I'm not very confident that the current one will do the right thing at the right time...or even spot what the right thing might be (but maybe I'm being unfair). But having just been 'allowed' to start treatment...hmm...

About the Punctal plugs. I think mine might be too large - when he put them in he had to swop to a smaller size, and still struggled to get them in (don't worry, it didn't hurt - just a bit scratch). So.perhaps I could benefit from ha I g a smaller size. Don't know.

My gut feeling at the moment is that I should have them removed and see how I get on with different (better) eye lubricants. Think it was Barnclown who commented that the jump from hypermellose and Actimist straight to Punctal plugs was a large one - and I agree (now that a I know a little more about it).

And I can always try the plugs again at a later date if lubricants prove not to be sufficient.

Haven't heard of lacrilube or celuvisc before so will have a look at them too. Oh want am I saying...there's sooo many things I haven't heard of...😀😀

I've got an appointment with the Opthomologist on 11 September so if I find out any more information about Punctal plugs, I'll let you know.

Keep,well and take care xx