Hydroxychloroquine side effects... is it worth it?

[Littlemisssunshine87]

Hi all 🤗

Recently diagnosed with Sjogrens after a 4 yr battle to get here (that’s a whole other story) I’ve been on hydroxychloroquine for nearly 3 weeks now, all was good for the first 2 weeks, no side effects, I thought wow great! Until... I thought I’d started with a flare but as the days have gone on it’s now feeling something entirely different. After taking a dose feeling dizzy and then started with bad stomach cramps and diarrhoea not long after, I started to wonder if it’s the medication?! My eyes feel horrendous, I shouldn’t be on here doing this as it makes it worse but I’ve left my rheumatology specialist nurses a message but they can’t always get back to you for days as they are busy.

So I’ve had some similar feelings to a flare...

Worse eyes, eye drops throughout the day don’t help. Steam and hot showers/baths/bowls help some.

Fatigue and weakness

Migraine type symptoms - although i can normal relieve these after a few days with ibuprofen and lysine but nothing’s touching this.

Not normal flare responses...

Stomach pains and diarrhoea

Zombie like feeling or as I call ‘med head’ don’t feel myself mentally don’t feel any emotion really. Increasing as days go on.

Itchy all over, couldn’t stop last night was driving me mad.

Irritable legs

Dizziness is increasing the more days go on

Brain fog increasing the more days go on

What do you do when this happens? Is this something you try and push though? Is there light at the end of the tunnel?

[milkwoman]

You could be reacting to a filler ingredient in the medication. I cannot tolerate generic hydroxychloroquine and can only take name brand Plaquenil

(I’m in the US).

When I was on generic, my symptoms grew worse and worse to the point I refused to take it anymore and asked to try the name brand. I have no issues with Plaquenil and I do feel the medication keeps things at bay. It does take 3-6 months to start seeing benefits from hydroxychloroquine and about a year to see full benefits.

[Littlemisssunshine87 in reply to milkwoman]

It’s a shame we don’t have that here in the U.K. I spoke to a pharmacist last week and she said if I’m having problems on this one, I will with any brand 🤷🏼‍♀️ They obviously don’t like giving the more expensive ones out. My rhuemy nurse told me to stop and take a break from it then try again at just 200mg a day. I’ve had a few weeks of hell from all the side effects it’s been horrible x

[milkwoman in reply to Littlemisssunshine87]

I don’t think you have to go with an expensive brand as there are other generic brands available.

Do you know exactly what brand you are taking? I’ve heard that some pharmacists are giving out Quinoric instead of hydroxychloroquine and some people have bad reactions to it.

The TEVA brand seems to be good for some but not for others.

I believe there have been folks here who have said they have had good luck with the brand from Black Rock Pharmaceuticals as well as the brand by Zentiva.

Once you find a brand that works well for you, you can have your doctor specify that brand only on your script. Otherwise, the pharmacy can give out whatever brand they have on hand.

[Littlemisssunshine87 in reply to milkwoman]

Yes I have been prescribed the Bristol Lab brand, when you research it it seems to be the one of the worst ones for side effects. Obviously if my rheumatologist decides to trial another brand to see if it helps then he can write it on the prescription. Otherwise most pharmacists are reluctant to give you another one on the NHS, I’ve found that with previous medications as well when a brand hasn’t suited. Rather frustrating. But the pharmacist I spoke to said that those side effects I’m having are off the drug Itself no matter the fillers 🤷🏼‍♀️ X

[milkwoman in reply to Littlemisssunshine87]

I would beg to disagree with that pharmacist but I suppose you never know. It’s like they are discouraging you from other brands so as to make their lives easier!

I would suggest trialing the brand from Zentiva or Blackrock as they seem to have the least side effects reported.

[Littlemisssunshine87 in reply to milkwoman]

Thank you, yes the zentiva one seems to be popular. I’ll see what my rheumatologist says on review x

[Catpuss66]

I came out in a rash all over chest and arms from hydrochloraqunine, I wanted to continue so took fexafenodine ( antihistamine for about 5 days) rash went, tried a different brand been fine, I am query dermamyositis as well as SS helped the scalp itching, got dry ears, scalp, nose eyes and mouth but coping ok, rash is progressing seeing a derm tomorrow. Think it has helped but a slow burner helped with energy now on my 4th month. SS caused all those symptoms you describe, just before starting, it may just be SS causing the issues as opposed to the drug discuss with rhuem nurses. Hope clears quickly .

[Littlemisssunshine87 in reply to Catpuss66]

Thank you I’ve had a rough few weeks that’s for sure. I could tell it was different to my usual symptoms as it started to affect me mentally. Slowly all starting to ease off now I’ve stopped as per rhuemy advice to discontinue use. I’ve been told it can stay in your system a long time though, heard some horror stories.

Funny you say a rash on your chest I started with one whilst taking it x