Lupus Medication

[just-typing]

Hello. Newbie here. can anyone please explain the pros and cons of taking Hydroxchloroquine Sulphate Tablets 200mg please. the information leaflet which is in the medication box makes it look scary.

[eekt]

HI there! Welcome aboard! Hydroxychloroquine can have some extreme side effects, but these are rare - most folks benefit a lot from the way it dampens down disease activity.

I had an adverse reaction, but I have hypersensitivity to pharmaceuticals - started on 100mg/day (yes, halving tablets!) building up to 400mg/day over a couple of weeks - then BOOM came out with an all-over pin-prick rash so stopped, as my Rheumy had advised. It also started bleaching my hair!! 👱🏻‍♀️

Had a second attempt, more extreme reactions. Now I take 200mg two or three times a week and tolerate it.

Most important thing is STOP if a rash starts, take a photo of it and see a doctor. And make sure you have your eyes checked every year.

There is science behind the benefits, and lots of posts on HU about other people's experience. You'll find lots of support here! xxx

[just-typing in reply to eekt]

Thank you very much eekt, that was very helpful

[0105luppyabby in reply to just-typing]

I had an awful reaction after taking it for a few weeks. Rash and fever like symptons, not good! I was taking it for my hands as in the winter they get cold and sore, but i'd rather suffer with that than the effects the tablet had on me. It suits some people but not me. Good Luck xx

[just-typing in reply to 0105luppyabby]

Thank you 0105 We will bear that in mind. I say we, because it is my dear wife who is suffering from it, but after 2 years, they have finally admitted that it is Lupus. That was after I took photos to her last appt and when they looked at them, they admitted it was so

[whisperit]

Hello just-typing

When I was first diagnosed, I was terrified at the medications (hydroxychloroquine and prednisolone) that I had to take. Three and a half years on, I consider HCQ a friendly and harmless tablet that I take twice a day without a second thought. This is not entirely a good thing! However, after the first few weeks when it gave me a bit of heartburn, I've had no further trouble. The consensus seems to be that it is one of the best tolerated meds for controlling auto-immunity, which is one of the reasons it is very widely used.

You do have to take some precautions - for example, having regular eye checks. But any drug that has a real beneficial clinical effect is bound to have real risk of unwanted effects. Few people would think twice about taking a couple of paracetamol tablets for a headache, yet a couple of dozen tablets taken together will kill you.

It's got to be up to you in the end; do ask your GP or rheumy if you are worried. meanwhile, here's the LupusUK leaflet on the main medications used in lupus lupusuk.org.uk/wp-content/u...

[just-typing]

Thank you very much whisperit I will use the link as advised

[Ladyatlunch]

I took 200mg twice daily for years and had no side effects at all. It’s best not to read the leaflets too thoroughly as every medication looks scary. It’s supposed to keep flares at bay and keep the disease under control. It’s pretty innocuous by comparison to other treatments. Everything is very personal though. Good luck.

[just-typing in reply to Ladyatlunch]

Thank you Ladyatlunch

[Chanpreet_Walia LUPUS UK]

Hi just-typing,

Welcome to the LUPUS UK HealthUnlocked Community! We offer a free information pack which you can download at lupusuk.org.uk/request-info...

Below, is a list of possible side effects of hydroxychloroquine ranging from common to rare (take from The Lupus Encyclopedia):

Common side effects: stomach upset, nausea

Common side effects after many years: changes of skin and gums (blue-black or grey pigmentation)

Uncommon side effects: insomnia, rash, light sensitivity due to corneal crystals, seeing halos around light

Rare side effects: weight loss, low white blood count, anaemia, retinopathy (very rare)

It is important to remember that each person reacts differently to medication and treatment. No two people with lupus are likely to share the exact same experience. What may work for one person, may not work for the other.

To read our factsheet on ‘LUPUS: and Medication’, click here lupusuk.org.uk/wp-content/u...

[just-typing in reply to Chanpreet_Walia]

Thank you very much Chanpreet. I will download them and pass them to my wife (she hates computers🙂)