To come off Hydroxychoroquine with No alternative drug replacement for it.

[KnitSewPurl]

Hi Everyone,Gluten free chocolate chip cookie they are absolutely delish 😋 crispy top and gooey in the middle my recent baking .

Thought I give you some update about my current situation that is ongoing at the moment.

So , last month we (hubby and I ) saw my eye genetics consultant who felt that I need to come of my Hydroxychoroquine after being on this drug for 12 years plus as they now tell me they cannot tell if it is actually genetic or Hydroxychoroquine even though I have no toxicity in my eye because I have slight increase macular changes.

Complications during appointment: consultation registrar did not ask for current meds . I was about to give him the list . He dived into history and my eye and had a look at my eyes and saw that it was extremely dry.

So I was put on Xailin night , which they did not put in their letter to my GP nor to any of the letters to the rheumatology either . No implications as to how long I was to be on it .

Was told I was to be referred to my original Corneal consultant but I am not. So this is all going down really well for me at the moment.

We saw my rheumatologist "nurse" last week that was so distressing really. Said that all my levels were normal except my CRP.

I also told her about my recent drug that I was put on which I felt have caused the changes because over the 12 years I have been stable until now . And I made that decision to stop that drug after I researched to find that the particular drug actually causes increased macular when a patient is already has macular. Drug is called Alendronic Acid.

So, she had a look and said she was happy for me to stop as long I continue on my calcium. Which I have been all this time.

Then after discussion with consultant they decided that I am to come off my Hydroxychoroquine totally. We ( hubby and I ) said that the last time I came off Hydroxychoroquine I was so ill, I could bearly walk and I was so inflamed and full of lesions. All she came up with was you blood does not show anything and you don't have anything to show at the moment. I said to her nothing to show ? I have them on my legs . Yup , she did not look at my legs or my hair or my arm or my body. Yes you could tell both hubby and I was absolutely livid. What we wanted was something for me to fall back into not to be totally cut off . If she says off Hydroxychoroquine in the letter. There is no way I can be prescribed again if I have a flare up at any one time .

This is what we wanted her to be aware of .

This was the situation we had the last time.

So I ended up speaking to my GP and we both agreed that if I do get a bad I will have to restart my Hydroxychoroquine.

Oh you know what , I ask her (Rheumy nurse) how do I reduce this tablet , guess what her reply was "oh just stop it just like that! "🤦🤦 Both my husband and I looked at each other , I said to her seriously! .

With any medication, you never stop a drug just like that!!! No matter what dose you are at . You reduce it to give the drug and your body a change to adjust.

What really bugs me is that I have been so stable all this time now and now they are making me to come off this drug . This really concerns and worries me quite a bit 🙄

So we shall see , I shall keep all of you updated over the next few months .

So now I am just waiting to see my Corneal consultant in Feb . For my next saga.

Keep smiling ☺️😜 my lovelies and have a lovely day.. whatever you are doing today ..

[StriatedCaracara]

I'm feeling hungry after looking at the mouth watering cookies

I believe only a rheumatologist can make the decision to stop hydroxychloroquine.

Was the consultant who suggested stopping a rheumatologist or eye doctor?

See foot of page 28

rcophth.ac.uk/wp-content/up...

[KnitSewPurl in reply to StriatedCaracara]

Genetics eye consultant suggested an alternative drug whilst I stopped Hydroxychoroquine but Rheumy doctor wanted me to stop Hydroxychoroquine all together as felt it did not verify me to continue the drug as all the bloods shown and the biggest joke of all she did not even see me this was all done via a nurse . No examination what so ever even though I was at the hosp next door to her room🙄🤷. This is a new consultant that they have just brought in to the hospital. Not impressed at all. Even my husband is not impressed with the treatment we got from them . We were told we will be seen by consultant in the spring somewhen in May what a laugh. With no medicine back up .. My old consultant has gone private🙄...Like everyone else ..They go private to earn more..Anyway I am just taking a day at a time. Just doing what I am doing and taking things slow

[StriatedCaracara in reply to KnitSewPurl]

You need a better rheumy. It is really wrong to stop treatment because bloods improve. Dr Donald Thomas discusses your situation in the video link sent earlier reply.

But if your GP happy to prescribe HCQ then it's okay. Are they allowed to do this now? So much changing in NHS..🤔

[StriatedCaracara]

Retinologist Dr Sri Sharma in Oxford is doing research on Hydroxychloroquine retinopathy if need a second opinion from the eye perspective.

So often we can end up seeing people who don't understand the situation fully and say ridiculous things. I am really sorry about the experience you had.

[StriatedCaracara]

Linking into post with links to videos looking at the importance of hydroxychloroquine, with some mention of situations where it has been stopped.

healthunlocked.com/lupusuk/...

[StriatedCaracara]

I have just started on Mepacrine, another antimalarial which is not known to affect the eyes. Might they consider this as a back up?healthunlocked.com/lupusuk/...

[KnitSewPurl in reply to StriatedCaracara]

Yes , we did look into it but no one has even mentioned this as would you believe it!! 🙄🤔🤷

[StriatedCaracara in reply to KnitSewPurl]

My GP asked local hospital trust if they would prescribe if they referred me there. From the reply looks as if they don't prescribe Mepacrine. Believe there are NHS hospital trusts that do, and maybe more through Dermatology.

Lack of consensus, when you think they might all offer the same things.

Might be worth getting second opinion.

[Galaxy2]

Hi there, I have twice stopped taking hydroxichroroquine because of eye concerns and there has been no tapering just instant stopping. There were no side effects but I can completely understand your concerns as you have nothing to replace it with.

It’s peace of mind when we have a medication that is working , that’s huge and I think even medical professionals don’t understand that, we don’t want to be an experiment to see what happens when we stop a medication.

I do hope you get something else or can at least go back to hydroxichloroquine if your symptoms get worse.

[Treetop33]

Blood tests aren't the full picture. My blood tests were normal-ish last rheumy visit but they said continue as you are for now and they will monitor for a year. No-one suggested coming off things all at once. Can you get a second opinion, or try the London Lupus Clinic for a more sensible view?

[Lizard28]

I had to stop hydroxy a few times over the years while I had chemo. I was told it’s perfectly safe just to stop it, no need to taper, it’s one of the milder drugs. The only thing is it takes a while to get into your system again when restarting it again.

[dg70]

I came off hydroxychloroquine on advice from my Rheumatologist because of possible eye issues. I was off for a month instantly as eye damage is very serious and can even continue after stopping hydroxy. I had a full and comprehensive eye check with ct scans etc and was passed ok so started hydroxy again. As they had my baseline scans at the eye clinic pre taking hydroxy they can spot even a speck of change in the eye. If you have any hint of eye damage from hydroxy you have to stop it straight away to minimise the damage. I had no ill effects by stopping straight away and I understand you can stop it straight away as it takes time to build up and fade away from our systems. After three weeks I noticed like you how much hydroxy is doing for me. My exhaustion was another level. I was glad to start again. Unfortunately there is no alternative that works like hydroxy and is relatively safe yet. I would stop hydroxy though in a heartbeat to save my sight if that was at risk and after speaking to others who have suffered eye damage from hydroxychloroquine. Make sure you get yearly eye checks especially after a few years of taking it ( I pay for eye checks annually for my piece of mind and I've only been on it 3 years).

[KnitSewPurl in reply to dg70]

Hi DG70,I see a genetic specialist for my eyes and a Corneal specialist as well. Because I have alot of complexity with my eyes . I get so much scans about twice a year done. One at the optician and one at the hospital and one with the Corneal specialist

When I stopped the last time I suffered very badly I was off Hydroxychoroquine for a whole year !! Until I saw my old consultant Rheumy at the hospital who put me back on it .

The thing is the genetic team because they cannot be sure if my macular is actually lupus or genetic they want to be sure that it is actually genetic and not cause by lupus or drug. Because there is no toxicity at all in my eyes which is why they want to be absolutely certain. Which is why they want me to come off Hydroxychoroquine and be on another drug which doesn't effect the eyes. Which I know there is one . Which is very safe to have . But at the moment I will leave it alone until I am in my "worse" state 😂 .

I am pretty calm at the moment doing some knitting and sewing alternating them in the day. And baking experiments 😉 just to keep me out of mischief and a great distraction from everything around me..

[dg70 in reply to KnitSewPurl]

Glad you're keeping busy. Wish I could bake, I wander off in a brain fog and forget I'm cooking something until I smell the burning! Sounds like you need a definitive answer (which may be impossible) as to whether hydroxy is causing or making worse your eye issues. I hope you get an answer. Take care

[KnitSewPurl in reply to dg70]

Haha, we use the timer we found a loudest one possible that I could hear as I am so deaf 😂.. also I use my phone timer as well double timer 🤣

[Betty909090]

Hydroxychloroquine and retinal toxicity from the Royal College of Ophthalmologists, people who know what they’re talking about:

rcophth.ac.uk/wp-content/up...

nature.com/articles/eye2016298

“…Hydroxychloroquine and chloroquine (CQ) have been associated with irreversible visual loss due to retinal toxicity. Hydroxychloroquine retinal toxicity is far more common than previously considered; an overall prevalence of 7.5% was identified in patients taking HCQ for greater than 5 years, rising to almost 20% after 20 years of treatment. This review aims to provide an update on HCQ/CQ retinopathy. ..”

Retinal damage can occur without OCT picking it up:

sciencedirect.com/science/a...

Drug therapy for lupus. Published by LUPUS U.K.

Useful info and summary! Date?

lupusuk.org.uk/medical/lupu....

Regards

[Suvi8901 in reply to Betty909090]

Hi Betty,

Thanks for posting and going to the effort with useful links and research.👏

Yes, indeed.