Hydroxchloroquine

[teresahunter]

Hydroxchloquine Hoe does it help What are the possible side effects ?

[lupus-support1 Administrator]

Hydroxychloroquine or Plaquenil is an old anti-malarial, effectively used in the treatment of systemic lupus erythematosus or SLE. It has mild blood thinning properties but isn’t used as a blood thinner. It’s a side effect.

It has been proved to be safe & effective. I have used it for over 20 years.

It is best to start at a LOW dose ie 1 tablet as in some cases it can affect the muscle of the eye if started at 2 tablets or more.

IT IS VERY IMPORTANT TO SEE AN OPHTHALMOLOGIST BEFORE STARTING HYDROXYCHLOROQUINE!

For people taking hydroxychloroquine over a LONG period of time there is potential for eye toxicity so it is strongly advised to see an ophthalmologist (a medical doctor not an optician) annually.

Hydroxychloroquine is a safe drug and indispensable for SLE and autoimmune conditions.

All medications have potential side-effects. Always take the advice of your doctor and not what you read online, even here!

With good wishes,

Ros

[teresahunter in reply to lupus-support1]

Thsnk you for this information. I have aps and struggling with joint pains at the moment snd not sure if hydroxochloriquibne the next step!

[lupus-support1 Administrator in reply to teresahunter]

That will be up to your specialist. It’s effective, safe & can help with fatigue.

Be well!

Ros

[HollyHeski Administrator in reply to teresahunter]

For me, it was prescribed for my hip pain with sjogrens.

I have my eyes tested at the hospital once a year, as have been on it now for over 10 years. I have no side effects.

[teresahunter in reply to HollyHeski]

Thsnk you holly I have pains in both arms and wrists snd speaking to consultant today. Send had she had mentioned this before I wanted to know a bit more sbout it!.

[Piscesdreamer in reply to lupus-support1]

I have primary APS. I had bilateral wrist, finger, hip, achilles, knee, foot, etc pain. It was debilitating along with terrible fatigue.

Hydroxychloroquine gave me my life back. It alleviated the joint pain and fatigue. Now I only experience that if I have a flare.

I had a baseline eye exam prior to taking my first pill. I made sure the eye exams were the 3 recommended exams for hydroxychloroquine patients. Then follow up exams 6 months later and at1 year.

I did experience nausea for the first month or two. Some people take it with food or before bed to avoid this.

I started feeling relief about 3 months in and by 9 months I felt great.

The specialists told me it takes about 9 months to feel all of the benefits and I agree.

I have no side effects.

I have been taking it since January 2019.

♡

[MaryF Administrator]

Hi, I agree with the advice you have already been usefully given by lupus-support1 I personally and unfortunately can't tolerate this medication, it made me have a severe allergic reaction, however my daughter does very very well on it, Please make sure you do the eye tests in a hospital setting or where the consultant advises. MaryF

[Wittycjt]

I don't, and never have, had joint pain except when they had tried me on a specific anticholesterol medication- and they switched me to a different one (which i never had high cholesterol either)... when i asked why i was put on this, the response was it helps to prevent more APS antibodies... i still dont have joint pain nor high cholesterol. Hope this helps! I know it sounds weird but that is what I was informed.

[teresahunter in reply to Wittycjt]

Thank you very helpful

[Elaine77c]

I have also been taking it for a number of years, I used to take it as Plaquenil and having seen posts on here about the fact that other makes, using different 'fillers' in the tablets did not work as well, only used to take that brand. When they stopped making it, I again followed the advice on here that the Zentiva brand was the same make up as Plaquenil, so I only take that brand, and refuse to accept other ones they try to give me - I have it written into my prescriptions that it should only be that brand. This drug has pretty much stopped any joint pain due to APS and also the bone wearying fatigue that I used to get, if I ever get the eye side effects and have to stop taking it I will be bereft.