Worried about latest decision made by new consultant

[lilliebetfairies]

Hi I have been taken off hydroxy I was on 200mg daily. Recent optician appointment show macular degeneration in both eyes. Went to see hospital and told to stop by rheumatologist still waiting on seeing eye clinic told 4 to 6 month wait really worried as really breathless since stopping them. Heart rhythm changes, pains are back in hips, joints etc. Face develops rash after being in the sun. Vision is blurred, blindspots, and black and white lines in a circle of the middle of my vision. Worried about eyes. becoming worse with no one checking them over.

Had a worry about the person I saw because his questions were do you have ulcers yes, due you have problems with blood flow to hands and feet answer yes. Do you have vascular issues don’t know.

Not lupus fibromyalgia. I have been diagnosed as possible lupus since 2004 and placed on hydroxy. I was in and out of his office in 15 minutes at most.

[MissusTee]

I think that you should go back to your GP and asked to be referred elsewhere. Covid has meant a delay in outpatient appointments, but you should also be seen by an ophthalmologist for your eyesight. This is an unfortunate side effect from hydroxychloroquine, but there are other meds that they should try.

[lilliebetfairies in reply to MissusTee]

Problem is new rheumatologist has said not lupus so I need no other intervention

[MissusTee in reply to lilliebetfairies]

I would still ask for a referral to a rheumatologist that specialises in connective tissue diseases. Non specialists can be quite dismissive in my experience. You can do the research yourself, and ask to be referred out of your area if need be, which is your right.

[rodders1941 in reply to MissusTee]

hi Missus, l wondered if you had heard of the medication HYDROCORTISONE,

as you seem to be well informed about medication,what l have researched on it

ther seems to be very little side affects with it , l would be interested in what you have to say. Rodders 1941

[MissusTee in reply to rodders1941]

I guess it depends what you are using it for, it's commonly prescribed for skin allergies, eczema etc. Overuse can cause the skin to thin. If you have connective tissue disease I would be anxious about its overuse and want a specialist opinion.

[rodders1941 in reply to MissusTee]

hi thanks for your reply , lm waiting for a nurse to call today ,she s going to give the information on the medication prescribed by the specialist , lm

still waiting for these so called specialist to tell me what my condition is this is after 16 months of any number of tests , but we will see what they have in ther bag of tricks, thanks again for your interest . take care Rodders 19041

[custardpot]

hydroxy can cause severe eye problems even to the extent of blindness in a few people. I could not take it as after taking it for a couple of weeks I got eye problems

[miccika1]

Ask for a different rheumatologist. They need to explain why they think you dont have lupus. If you feel worse after stopping hydroxychloroquine that's a good signal that you have some autoimmune disease. Maybe not lupus but there are other similar ones. If you can't take hydroxychloroquine due to eye issues there are plenty of other meds you could do instead. If you take a round of prednisone and you feel better that's another sign you might have autoimmune condition.

[Sara_A in reply to miccika1]

Hi, can I just ask what are these other medications u are suggesting??

I have also had to stop hydroxychloroquine after 10 yrs due to possible eye damage as apparently have patches on my retina or macular cant remember which they said!! I'm well overdue a f/u scan due to covid my 3m follow up has turned into about 6months or more !! And I could potentially be losing sight who knows when I will be seen! Its worrying

[miccika1 in reply to Sara_A]

There are many different immunosupressants that treat lupus such as mycophenolate and then of course prednisone i the most common medication... Regarding eye sight you mentioned macular degeneration. I dont think this was caused by hydroxychloroquine, as hydroxychloroquine causes retinal damage called retinal damage called retinal toxicity. There is no treatment for that so even if you go early there should be no difference in saving you eyes. If you had regular at least yearly tests for retinal toxicity there is a good chance your eye sight will be fine. The earlier they recognize it the better chances are you keep your eyesight. Usually yearly exams are ok. So unless you didn't do hydroxychloroquine ey test for more than two years you have high chances of being fine.

[Sara_A in reply to miccika1]

Oh right yeah I'm on all those already I thought there was maybe an alternative to just the hydroxychloroquine as that helped with my fatigue which is literally killing me atm!!

Yeah it's the retinal problem then, I was having annual eye checks with retinal screening too. I know it wouldn't change anything it would just be nice to know that's all as my vision is getting quite blurry x

[miccika1 in reply to Sara_A]

Maybe it's getting blurry because if macular degeneration not hydroxycloroqinine toxicity. Macular degeneration i believe has some good treatments. If i was you i would make sure you get to the source of eye issue with ophthalmologist and see if there is a treatment. If it is macular degeneration due to age you want to treat it sooner rather than later. I believe nowadays there are a lot if successful surgeries for this. Also diet interventions (saturated fat and being overweight is a big risk factor) as well as hypertension management. Good luck with this. Hope you fix the sight! I had a scare one time and stopped hydroxychloroquine but then it was discovered that the vision issue was due to something else and i resumed hydroxychloroquine. It's my favorite medication too.

[Sara_A in reply to miccika1]

Goodness I thought macular degeneration was what older people got...I'm only 41!!

[miccika1 in reply to Sara_A]

There is age related one and non age related one. Did they tell you for sure it's hydroxychloroquine toxicity? Im 43 and has sight issues not related to hydroxychloroquine

[Sara_A in reply to miccika1]

They just said there were new changes on my retina (since last annual check) and to stop the hydroxychloroquine and see the ophthalmologist so saw him and he said I cant take it ever again and he wanted to re scan my eyes in 3m as he wants to make sure they weren't just incidental findings (found already on 2 separate occasions 1st at opticians and then seen again on the hospital scans!) So that's what im waiting for is the recheck x

[miccika1 in reply to Sara_A]

Got it. Hope it's incidental but since your vision changed maybe not.

[KayHimm]

Have doctors documented your rash or ulcers? I think rheumatologists insist on being certain that rashes and ulcers are actually consistent with a particular autoimmune disease. I get fairly frequent mouth ulcers but they are not the ones lupus patients get. It is best to get documentation from prior visits and photos.

Photosensitivity is not included in the new diagnostic criteria for lupus. I don’t know if those criteria are approved in all countries yet. But from what I read, the experts decided photosensitivity was too hard to document accurately and skin disease was duplicated in prior diagnostic criteria.

I am bringing this up to point to the dilemma doctors have when diagnosing lupus.

Sixteen years is a long time to not know what is wrong. You might want to see a new rheumatologist to get a second opinion.

K

[happytulip in reply to KayHimm]

Hi Kay,

Out of interest which lupus guidelines are you referring to? It might help me. I'm severely photophobic, not even 30 seconds in the sun.

They have looked into prophoryia with me but I don't think they have looked hard enough. So if the photosensitivity isn't from lupus it means I can push to get them to invest where it is coming from.

I hate being allergic to the sun. I would do ANYTHING to not be 😭

[KayHimm in reply to happytulip]

Happytulip - it isn’t that the photosensitivity isn’t from lupus, it is that the symptom was not helpful in diagnosis. The guidelines are for research purposes. So doctors certainly would know the photosensitivity is likely from lupus in a lupus patient, but the patient reports are not reliable. That is my understanding. Actually, maybe the guidelines have been approved. What I am looking at now says « new ACR and EULAR criteria for SLE classification »

Have you thought about seeing an immunologist who knows mast cell activation disorder? People with autoimmune disease seem to have this syndrome. I think it can cause extreme sun sensitivity. One woman on the forum was diagnosed with lupus and then referred to London where they suspected MCAD and referred her out.

Also, what kind of sunscreen do you wear? I was getting a painful rash on my neck that happened very rapidly upon sun exposure, which was not my usual pattern. It turned out to be photo allergy from the sunscreen. My current dermatologist specializes in CTD. She knew this was part of the lupus photosensitivity spectrum. No other dermatologists knew this. I don’t get the rash with zinc based sunscreen. You might want to switch and see what happens.

Thirty seconds - wow - that is a real burden.

Xk

[happytulip in reply to KayHimm]

Ah, thanks for the clarification.

I being investigated by immunology and infections diseases.

There are multiple btimes that are documented when I have been in hospital and put in a bed under halogen or UV lights. Within seconds I get a headache, go red, get palpitations and collapse.

Sunscreen band clothes offer no protection unfortunately.

Hopefully when this CV-19 is over I can get back to immunologist.

Yes, being allergic to the sun is dreadful.

[KayHimm in reply to happytulip]

Look up MCAD. I think that collapse and palpitations sounds more like that than lupus photosensitivity. It is so immediate. And when I saw a immunologist, he explained to me how my pattern was not right - MCAD patients crash. Sounds like you, right?

I wish I could connect you with the woman on the forum who was like you.

Don’t give up on this, Happy. Your sun allergy is severe and life-altering.

Do you have other allergies? There is another woman on the forum with an extreme reaction from the sun. It is the sun reacting to synthetics in fabrics.

🤓k

[KayHimm in reply to happytulip]

And yes, sunlight is a trigger in MCAD. Just looked it up. How long are you sick after the exposure to sun or light?