Hydroxychloroquine side effects!!

[NatalieMai]

Hi,Ive been put on hydroxychloroquine. They said it would take 3 month to kick in. Its been 3 months and im getting rashes, itchiness. Last week at work and went very dizzy, my report writing was merging into one, i could barely stand up! My head is throbbing! Im just wondering if anyone has has these effects?

Many thanks

Nat

[Turquoise-1]

Hi NatalieMai,

I had adverse reaction to Hydroxychloroquine, some symptoms as you describe.

Scalp - burning, sore, taut, itchy

Face & Eye sockets - bright red, itchy, sore, burning, stinging, felt like acid had been poured over it!

Neck & Chest - Red, sore, itchy

Hair broke off at front, turned yellow & bald patches appeared, plus I had severe abdominal pains, overactive bowels & weight loss.

GP told me to get some antihistamines from the chemist but didn’t offer to prescribe me any; They didn’t ease symptoms so I contacted Rheumatology who told me to stop taking them immediately…

I only managed to take them for 24 days……did not suit me at all

I will never take them again!!

Hope you’re soon ok & your suffering doesn’t continue 🤕

[StriatedCaracara]

I had rash when first started. I worked with rheumy, starting back on lower dose, three days a week. Then back on full dose. This time I had no rash.

Dizzy spells I had to start with but found if I had something sugary like sweets it helped.

I also have a bigger breakfast now when I take HCQ.

I started to notice changes after 3 months, most came after 6.

I went to rheumy, and told them all that happened and they helped me. I emailed pictures of rash to their secretary.

Now 15 months in I still have no issues. It was only initially and maybe other factors affected things too. I don't know.

There are also different brands. Also there are other antimalarial. Your rheumatologist is the person to go to aa they should help.

Hope all goes well and you feel better soon.

[Jances13 in reply to StriatedCaracara]

Hi , I am also having an issue with some to the generics of hydroxychloroquine, they make me itch. My Dr. recommended the brand but it’s way to expensive so I’ve been trying different manufacturers to see if I find one that works. If you don’t mind me asking did you take the whole pill or cut it in half ? And then you mentioned you spaced them out ? Thank you so much.

[StriatedCaracara in reply to Jances13]

Hi Jances

Here is the post I did when I had the bad reaction to hydroxychloroquine (HCQ).

I knew from watching an LFA Dr Donald Thomas video that HCQ was so important.

Then this happened. Utter dismay.

I was having Zentiva.

I worked with my rheumy. I had to stop for a short while whilst the rash went.

Then I went back on Zentiva, but just taking my normal dose on Monday, Wednesday and Friday. I did not take anything the other days.

After getting no bad reaction, I went back to the full dose...and was fortunate as this time I did not get the rash.

healthunlocked.com/lupusuk/...

I have now been taking HCQ 15 months, and have recently needed to increase the dose. It has still been okay.

I think my rash may have been a combination of factors. I got soaking wet walking back from a hospital appointment. I had worn a new jumper with a bit of wool in over a long sleeved t-shirt, but the rash was everywhere, apart from my face.

I never wore the jumper again.

I have read somewhere in a paper, that bad reactions to antimalerial can be caused by multiple things happening at the same time.

Wishing you all the very best. SC (in the UK)

[Jances13 in reply to StriatedCaracara]

Thank you for sharing about Dr. Donald Thomas . There's so much to learn . This gives me hope . I am also going to purchase the book . Am going to try just starting back on 1/4 pill a day instead of 1/2 to see how that goes . I've been off the hydroxy now for 3 months . Am praying that this will work .. If I could afford the Brand I would go that route but way to expensive in US. I hope things go well for you ! Have a great day !

[Hidden]

Hi Natalie

Definitely report this either to your Rheumatology helpline or the Consultant’s secretary, as they need to know. It can be a side effect but you really do need medical advice.

I had phases where they sent me dizzy and lowered my blood pressure amongst other things.

I hope you get help soon, keep us posted ✨

[Betty909090]

Never dismiss hidden, SERIOUS invisible ocular side effects of HCQ:

healthunlocked.com/lupusuk/...

Have a read of above posts!

Enlightening about this drug.

[BeeManShrop]

Hi Natalie Sorry to hear that you are having ongoing issues either with your lupus or as a reaction to hydroxy. Firstly, I am not a medic in any way, My wife was diagnosed with SLE over two years ago. She has had RA for about 20 years and was taking methotrexate for this but it suddenly seemed to stop working . With the SLE diagnosis she was put on hydroxy at 200/400 alternate days. But she has now been changed to 300mg per day tablets made by Black Rock Pharmaceuticals-- this makes life much easier as you just take one tablet every day. As far as we know she has had no trouble with side effects -- maybe this was just good luck. It took about 6 months before the effects of SLE started to become less and under some degree of control.

Your problems could be because the dose you are on is too high (or too low) -- your rheumy is the Dr to decide / review your prescription. OR perhaps you may have a contact number for a specialist nurse helpdesk-- this may be quicker than waiting for a rheumy appointment -- our experience is that the nurses are very helpful and will consult the rheumy if they feel it is necessary.

Alternatively, I have read on here, that some people react badly to the hydroxy made by some manufacturers but not others. Apparently, they use different fillers in the tablets that can cause side effects regardless of the hydroxy content. Maybe a change to another manufacturer will help you.

I do hope this is of some use to you -- good luck.

[Blue_feather]

I have read somewhere that you can get symptoms such as headaches and nausea but that the symptoms tend to settle down after a few months. But l have also read anecdotes where it is clearly not suitable for some. I have been on it since last September, and for me it took about 9 weeks to kick in, and about 16 weeks of mild headaches to stop.

It has been a game changer for me, a wonder drug of sorts. No inflammation and no constant fatigue anymore.

[Cal66]

HiI didn't have any of those symptoms, I think that you should phone rheumatology nurse and discuss your symptoms with her & if she is concerned then she can get your rheumatologist to phone or see you. I came off Hydroxychloroquine 4 years ago as I was diagnosed with toxic retinitis as a result of the medication, so please have plenty eye tests and tell them you are taking the tablets as they will then do a more thorough check and good luck.🐶

[BK47]

please read the NHS info on hydroxychloroquine as the side effects you mention should be reported and possibly a reason to stop taking them!

I’m having problems with hydroxychloroquine too- breathlessness and muscle weakness so I’m asking rheumatologist if I can be phased off them. I have no idea what will happen to my lupus if I stop the meds but I don’t think it’s wise to continue and get weaker and weaker.