Watching House

[Willow7733]

I am off on a long weekend (tomorrow I go back to work), and watching House on Netflix. Funny how they focus on positive ANA for lupus on this. Of course it is never lupus, but the irony is, when you don’t tests positive on ANA - it can’t be lupus. BUT, if people test positive for ANA, you are told it can’t be lupus because people without it can test positive. 🤷‍♀️🤷‍♀️ No wonder it is almost impossible for people to be diagnosed.

[dg70]

I know. I have laughed rewatching House. It's never lupus even though they test nearly every episode. I think once it was and they fall on the floor shocked. 😃 I'm a negative ana with lupus so house would have written me off. At least they highlight how tricky it is diagnosing this thing. They did diagnose sjogrens once in an episode because she had no tears, didn't focus on positive bloods for that one!

[KnitSewPurl]

Yes , House is quite hilarious to watch . He always wanted a Lupus patient 😂.. but he did get one in the end eventually. Yes , they always test the ANA to check to see if it is positive.

One classic one is me .

I have been very well controlled with my drug -hydroxycloroquine I made sure I was not take any more dairy or gluten as they were causing alot of issues with my gut .

When I got my blood test back a while back because it was so well controlled and I was so well no inflammation in my body or joints or muscles . It came back negative. So , because eye consultant wanted me to come off it (there were issues that they need to weed out that it is not related to the drug) and my blood showed neg, rheumatology consultant(new rheumatology which I have not seen) felt that there was no need for an alternative drug, I am to come off it totally and to see her in April . Now I am not well. Had a flair up on Sun , unable to walk due to intense pain . Night sweats last night. Increase pain in my hip joint far more than normal. Joints on my toes and ankles and fingers.muscle on my left arms and my face is very sensitive and tingling.

"We will take you off and see what happens " is more like it !! 🤷😆

Could not stand any longer than 5mins in the kitchen. It is atrocious!!

Before I used to stand and work at least 4- 5hours in the kitchen. When I am on a baking spree.

Will see what happens in April

[Willow7733 in reply to KnitSewPurl]

That is awful. Why didn’t think that you have no inflammation shown because the drug is working and you may just be going through remission stage (which is normal as there is no cure for this). 🤷‍♀️🤷‍♀️

[KnitSewPurl in reply to Willow7733]

Because she is a new consultant, could not be bothered to look into all my previous notes of what it was found I had previously noted that was discovered by previous consultant's and dermatologist 🤷letter dated 2018 . Which she could not be bothered to look at . Even though my diagnosis was dated 2010 I had a major flare up in 2018 when my consultant up my dose and gave me prednisolone for a short while .

[dg70 in reply to KnitSewPurl]

I came off hydroxy for a month as had some eye trouble. The ophthalmologist gave me the all clear so I went back on. During that time I got double exhaustion by the last week so it was good to see what hydroxy is doing. I still have exhaustion but nothing like when I came off hydroxy. It was like glimpsing a future I don't want. I hope my eyes hold out ok. I get a full work over with my eyes every year to feel safer. I agree with Willow, we feel as good as we can because the hydroxy is dampening down our immune system to a greater or lessor degree. I just get pretty bad constipation all the time. I went back to normal bowel movements when I didn't take hydroxy. I can't increase my dose because of this as when I did I could not go at all without laxatives. For every ray of sun there's a cloud🙂

[KnitSewPurl]

Will see what happens , as I will be off it for 4months before I see my consultant Rheumy . If she still doesn't give me an alternative drug then I will be off it for a whole year with out it.

Also got confirmation about my eyes regarding its extreme dryness . As I asked the corneal doctor's if it has anything to do with me having SLE if any link it is Sjögren's as I am always dry in my mouth, nose is totally dry, no nostrils hairs. He said it all links with a gland that produces and secretes saliva , tear duct which is not doing it job in my case . So yes, Quite detail explanation . So , having x4 times a day eye drops Hylo forte and night Xyline night gel. Heat pad . It has effected my Corneal. As they are quite dry. So they are quite concerned. He said for the time being conservative but eventually I will need Steroids treatment. But not now.

[StriatedCaracara in reply to KnitSewPurl]

Found this additional eye condition, Dry Eye Disease (DED) thought to be prevalent in SLE.

healthunlocked.com/lupusuk/...

Even with the preservative free eye drops and ointments some are making my tear ducts and inside my lower lids sore.

Some days my eyes are getting sore using the USB heated eye mask. Think cornea is being dried out.

what used to work is not so think there is bigger picture.

So now just on Hylo Tear daytime and Hylo Forte night time. Also, find just rinsing eyes, using a clean warm flannel to wipe face and taking baby aspirin a day helps too.

Which is good as spending too much on eye drops that none of three doctors asked my GP to prescribe.

[KnitSewPurl in reply to StriatedCaracara]

Very interesting article.. had a quick read .

[Carcrashgal]

When the dermatologist toldf me I had lupus, I blurted, 'But it's never lupus!' And then had to explain why!