2 month wait for hydroxychloroquine: Was told I'm... - LUPUS UK

LUPUS UK

27,254 members23,416 posts

2 month wait for hydroxychloroquine

BonnyB
BonnyB

Was told I'm bring prescribed hydroxychloroquine at my first rheumatology app on Monday.

Just had the letter for a telephone appointment to discuss this medication and around a prescription.

It's on 21/01/2021!!!!

2 months away, plus 12 weeks before it works. That's 5 months with my current symptoms.

I'm on no other medication, so would be a fairly simple telephone appointment.

Is this normal? Or just because of covid?

Any advice appreciated X

34 Replies
oldestnewest

Could be combination of covid and xmas .you must have your eyes tested before starting hydroxchloroquine and every year whilst taking it as it can cause retinol toxicity. Unfortunately though that's the way its goes with lupus.i was started on azathioprine but after 7 weeks I developed drug induced hepatitis. I had to stop it and wait 3 months for my liver to recover before starting mmf and then wait for it to start working ...... 7 months in all.you will go on like that until they fi d the drug combo that works for you.i also take hydroxchloroquine and had a bad head and nausea every day for a month I've now been on it 2 years .you got to be patient I'm afraid.i hope it helps you x

I've cancelled my opticians app fir tomorrow, no point. I'll need another in two months.Thank you for replying. X

Please do not confuse the word, “ retinol” (Vitamin A) with retina, which is the pigmented layer at the back of the eye!

For more info on Hydroxychloroquine induced retinal toxicity or retinopathy try this link from the MACULAR SOCIETY:

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

Ooops....

Hidden
Hidden in reply to Spanielmadlady

Ah that’s why the rheumatologist nurse said they couldn’t start treatment for myself as liver enzymes high currently referred to Hepatologist

Spanielmadlady
Spanielmadlady in reply to Hidden

They are such powerful drugs.my liver recovered and I've had no issues since .I hope the same happens to you and you are able to start a treatment plan that helps.best wishes xx

Sounds rather iffy to me. Call your GP, they have a designated helpline and ask them to expediate it for you. Alternatively, phone GP and ask if they have recieved letter from rhuemtology with advice on meds. Either way, it seems rather ridiculous to have to wait so long for a prescription. It may end up just being an admin error. x

BonnyB
BonnyB in reply to RosieA

Thank you. I've phoned the rheumatology department, said they've given me the first appointment they've got. Said if I'm not happy phoned nurse helpline , which I have but can meet only leave a message X

RosieA
RosieA in reply to BonnyB

Still might be worth the GP trying on your behalf. My GP has used the direct line to consultants a couple of times now as I have been struggling. I hope the nurses come through for you. They can often send prescriptions through the post. Fingers crossed. x

BonnyB
BonnyB in reply to RosieA

I'll email gp too, thank you X

Oshgosh
Oshgosh in reply to BonnyB

It’s worth leaving a message, my rheumatology helpline always get back to me, even if it takes a couple of days.I hope you manage to get some information

BonnyB
BonnyB in reply to Oshgosh

I hope so, thank you X

Sadly I had the same experience long before Covid - 7 months to get a referral, then 8 months of the rheumatologist telling me there was nothing wrong with me, then a letter saying 'actually you have some kind of autoimmune disease and we want you to start hydroxychloroquine' and an appointment for two months later. It was a horribly anxious time so I feel for you.

If it's any consolation, it started helping me much sooner than 12 weeks. My fatigue improved after about two weeks and it was uphill from there.

I would use this time to get a baseline eye test and tell the optometrist it's because you are starting this drug.

BonnyB
BonnyB in reply to whaleroad

Really! That's awful for you.I did get my first rheumatology appointment really quickly based on my blood test results- 3weeks. I'm really grateful for that.

But 2 months to start medicine that you've been prescribed by a consultant is ridiculous!

I'm getting worse every day. X

HiI’m in the same position. I had to come off hydroxychloriquine and rheumatologist at last appt is going to put me on methotrexate. My appt has been cancelled due to Covid and I have been left hanging with no medication and my lupus is not stable at the moment. So I understand how you feel.

BonnyB
BonnyB in reply to Josiah150767

So rubbish for you X

GP should be able to prescribe hydroxychloroquine too if it has been already decided that you have lupus. Did you get cleared by eye doctor that you can take it?

BonnyB
BonnyB in reply to miccika1

The consultant said UCTD , still doing other tests, waiting for chest x-ray and some different blood tests results I had done whilst there.The consultant gave me a quick eye test, asked me which paragraph I could read from a sheet. Gave me a leaflet on hydroxychloroquine.

Then was told you'll get a letter with a date for a telephone appointment to counsel you on the drug and make arrangements for you to pick the prescription up. X

miccika1
miccika1 in reply to BonnyB

If you end up taking hydroxychloroquine please bear in mind that a simple eye yest is not enough to monitor your eye health. There is a very specific test dor hydroxychloroquine toxicity that you need to perform once a year. So going dorwatd please remember that.

BonnyB
BonnyB in reply to miccika1

Is that at an opticians? Or hospital? Pressure this is what I'll be told in my appointment in January. I'd just booked in at the opticians because the consultant didn't say, thank you X

BonnyB
BonnyB in reply to BonnyB

Presume

miccika1
miccika1 in reply to BonnyB

As long as they are able to perform "hydroxychloroquine toxicity test". I go to an ophthalmologist. The test involves two part. One is you look for tiny dots apearing on the screen and you indicating if you saw them or not and second part is they take a picture of your retina and an opthalmologist takes a look. Now since you haven't taken any hydroxychloroquine yet im not sure if the first test needs to be this comprehensive. I cant remember what was done for me for that very first test.

The first test before you start the drug is to determine if you have an existing maculophaty - so make sure that's what they are doing. For consequent ones you can ask if they arw doing 1. automated visual fields and 2 spectral-domain optical coherence tomography (SD OCT) - those are the two tests i described above.

BonnyB
BonnyB in reply to miccika1

Thank you x

Hi Sthwing As already mentioned you will need to have an eye test but the optician will need to have an "OCT" machine -- they do not all have them. It takes a picture of your retina that can be used as a baseline for comparison with later tests. We used Specsavers. Once this was done and providing you have no issues with your retina, the optician forwarded (emailed) the results to our rheumy I rang the helpline and the specialist nurse made out the hydroxy prescription there and then, sent it to the hospital pharmacy and it was posted to us -- received the following day. I am not so sure anything would have happened had I not chased them though. Best wishesPS -- The dose of hydroxy is calculated dependent on your weight -- which your rheumy should already have.

BonnyB
BonnyB in reply to BeeManShrop

Thank you. I did explain to Specsavers why I needed an appointment and the medication I'll be on.I guess each hospital must do different things and this is the system my hospital uses !

Yes the consultant told me I'll be on 400 X

I take 400 mgs of hydroxchloroquine and Specsavers do my eye test every year in sept and have the OCT machine for which the fee is £10.they also gave me the amsler chart which I keep on my fridge door. If you cant see the whole square theres a problem. X

Thank you very much X

Im so sorry your going through this. I’m in the US, so I’m not sure how doctor appts go there. But ... I had a video appt with my rheumatologist, and hearing all my symptoms she suggested a bone scan because blood work was pretty normal. After the bone scan test was complete, and from those results she prescribed me Hydroxychloroquin. Our prescriptions are sent electronically to the pharmacy. I would call your doctors office and ask why you have to wait. It’s hard but you have to be strong and ask questions. This is your health! Good luck I hope your feeling better!

BonnyB
BonnyB in reply to Nvrenfhorses2

Oh you had a bone scan. Is hydroxychloroquine your first medication too?

I'm not sure why they dispense meds in this way here- maybe that's just how it's done now.

I'm in no other medications and never have been so...

I'm going to give the hospital another ring today.

Thank you X

Hi Bonny, yes , the hydroxy was her first choice because of COVID, she wanted to try the least immune lowering drug. I must say I personally didn’t see results for at least 8-9 months. I haven’t had a flare for almost two months now. Which is the longest I’ve gone. I’m taking 200mg 2x /day. I also have Lyme disease so the struggle is real. I hope you you feel better too. It’s so difficult for us, thank goodness for this forum! Sending warm wishes!

BonnyB
BonnyB in reply to Nvrenfhorses2

I really hope the flares stay away for you.I've had a call from the hospital. They've apologized and I have a telephone appointment on Thursday X

Nvrenfhorses2
Nvrenfhorses2 in reply to BonnyB

Fantastic, I hope they take care of you and answer all your questions! Good luck 🤞

BonnyB
BonnyB in reply to Nvrenfhorses2

The rheumatology nurse phoned last week. Went through everything. Prescription should arrive in the post this wk. Thank you X

Nvrenfhorses2
Nvrenfhorses2 in reply to BonnyB

I’m so happy you resolved this. Good for you! It’s difficult navigating healthcare, especially when you’re feeling so unwell. Sometimes it’s easier to stay in bed, and pull the covers over our heads😔. I hope you feel better soon! Sending hugs! 🤗

You may also like...