Questions for those of you on Hydroxychloroquine

Asnina

Hi All,

Day two of taking Hydroxychloroquine for Seronegative Inflammatory Arthritis and I have a few questions for those of you that take it regularly.

1 - How do you deal with the horrible taste? I've tried having water ready & drinking straight away - the tablet was only in my mouth for a few seconds, but I managed to have a horrible taste in my mouth until I went to bed over 14 hours later (eating and drinking did nothing to take the taste away). Have the same issue today, where I tried starting with water in my mouth, dropping the pill in and swallowing straight away.

2 - Symptoms so far have been feeling light-headed, a bit dizzy, and nauseous (I could almost describe it as feeling drunk or very badly hungover). I had to take yesterday off work, as I could not concentrate properly. Do these symptoms get better over time? / I know there is a risk of side effects that can start after a while on these (I've had that with other meds, OK to start with, horrendous side effects over time). I have an optician appointment booked for Friday for a baseline assessment of my eyes

3 - The best time of day to take Hydroxychloroquine. I was told to take it in the morning with food, I asked the hospital pharmacy if I could take it in the evening before bed (or closer to bedtime with dinner, as I don't eat right before bed) and I was told no, best to take in the morning. My thought process is if I take it at around 6 pm with dinner, most of the symptoms will be whilst I'm in bed (I won't say asleep, as I've been going through a period of insomnia). I'm really busy at work and could do without the time off (I also don't have many sick days in a year, so I'd rather keep those for when I'm really bad, such as during my last two flares where any movement was agony).

Any suggestions, hints or tips would be most appreciated. I'm going to ring the Rheumatology nurse's helpline when they open later to see if I can switch to taking it in the evening.

Currently, the plan is to see if just Hydroxychloroquine eases my symptoms (I have a history of adverse reactions to medication, so the Rheumatologist thought it would be best to start with the less potent option).

stickywicket

Hi. I've been on hydroxy (and methotrexate) for well over 20 years with no problems, including eyes

Taste? I've never noticed a taste and don't recall anyone on here mentioning it. I take all my meds with a large mug of tea at breakfast. I like the down-the-hatch method then I can get on with my day.

I wonder if you have exceptionally sensitive taste buds. How are you wirh eg very spicey things? The only time I had a taste problem was many years sgo when I was on chemo and had a permanent metallic taste in my mouth. I could very temporarily banish it with sucking a hard boiled sweet but obviously one can't do that too often. Maybe an ice cube? Indeed, maybe if you sucked an ice cube before swallowing the pill it might deaden ýour taste buds unril the pill was down.

JenHB

I know that I need to take mine with a large glass of water as otherwise I find I get a bit of an aftertaste.

I don't know if it will help, but I think on one of the other forum threads someone mentioned the aftertaste for Paxloid and said they had a haribo tangtastic afterwards which got rid of it (this may not be the best option long term though!)

Asnina

Thank you for the suggestions, I don’t think my tastebuds are overly sensitive. I can tolerate somewhat hot food and will on occasion have my coffee black with no sugar. I tried with orange juice this morning and it seemed to do the trick. Nausea and dizziness still hits me about an hour after I’ve taken the pill though. I’m waiting to hear back from the nurses line to find out if I can take it of an evening.

Glamnanjan

I have been hydroxychloriquine for the last two years and also 16 years ago. I have to take mine twice a day. The taste is not nice if you put it directly on your tongue although recently my pharmacy has dispensed a different brand that seems to have a slight coating, I’m definitely not tasting it as much. I literally take mine with food, my last spoon of porridge in the morning and actually put the tablet into the porridge on the spoon and swallow it straight down and then have no problem. As far as side effects go the first time I took it 16 years ago I did have a little nausea but it soon passed after the first week, no problems since thankfully. Sadly it hasn’t worked as well this time so methotrexate was added in 18 months ago, but my ReA is currently flaring up again, I also have seronegative RA and some osteoarthritis and most joints are affected although knees are by far the worst at present. I’ve already had both hips replaced. I just want to be able to walk the dogs with my husband or go shopping on my own two feet!

I’ve just looked at the packet and these ones are by Zentiva and it says they are filmed coated!! Way better!

Tav

Hydroxychloroquine two tablets a day with no problems, just have eye tests every year this drug was added alongside leflunomide

Asnina

Just wanted to give an update. Side effects have lessened, now I only get bouts of random nausea and the occasional dizzy spell. I’ve found a solution to the nasty taste, I take it with orange juice, have the juice in my mouth and pop the pill in (mine also say film coated but they don’t look it, they are very porous on the outside). Also had a check at the opticians - they have a baseline retina scan and I will go in every year to get checked, they’ve given me a little card with boxes on it to keep an eye ur on my vision at home (if anyone’s interested I can post it on here).

Im still taking them in the morning with breakfast as I’ve still not had a call back from the nurses helpline (I called them last Tuesday & they have a 48hour sla apparently).

thank you to everyone that posted suggestions

Asnina

I realised I forgot to update this post, I managed to take hydroxychloroquine for approximately 3 weeks. The initial side effects had lessened, and all I had left was occasional nausea. I was still taking it in the morning (Nurses never rang me back) Bt the end of the 2nd week, all my aches and pains disappeared, all I had left was body stiffness. I then had to come off them due to an allergic reaction, I had hives up both arms, and itching all over my body. Within a week I was back to square one, and it a semi flare state. I’ve now gone 5 months without meds (long story, but doctors strike, 3 week holiday which meant I couldn’t start meds until I was back and waiting for a nurse appointment to show me how to inject Metho) meant I needed to find a way of controlling the pain. I overhauled my diet, eat much more greens, non starchy vegtables, eggs and meat. I’ve severely limited my process foods, including gluten free pasta and flour (I also have coeliac disease), limited sugar, and removed fizzy drinks. I also intermittent fast (been using Fast Like a Girl book), and have been doing much better. Although still haven’t got rid of the stiffness, and generally wake up ok, but by the end of the day, I am usually in pain, worse after commuting to and from the office, as well as any time I experience stress (major trigger as well as lack of sleep). I have also purchased an electric standing desk, for working from home, and this has been a godsend, I switch positions whenever I start to feel pain and stiffness. Started Methoject yesterday, see my other post regarding the initial side effects which were not great. Will try to remember to update that post with progress

EJayne

Hi There,

I have been recently diagnosed with Inflammatory arthritis, and although not a young woman, I have gone from from being really active to a sloth!

12 months ago I was at yoga classes, down to the gym and main main activity, playing golf 3 times a week. As 2023 went on I got more and more tired, lethargic, depressed and achey, oh yes and hair loss. After begging for a GP appointment and blood test, I finally got help in August. (My main problem is I am my husbands "eyes" and I need to be fit for him.) I had a course of steroids that really helped and then went on to Salazopyrin. After about 3 weeks I can out in a hot, scabby rash so stopped taking it. This put me back to square one. I have now had another course of steroids and should be starting on Hydroxychloroquine in the next few days.

I was encouraged to read some of the comments and those who were saying "no problem" but I am very concerned about hair loss and sensitivity to sunlight. I have already had an eye test, but am very anxious about taking something so invasive.

Does anyone control their symptoms with natural products, or are drugs the only option.

Thanks for reading

Jayne

stickywicket

@Asnina, I'm very pleased your dietary changes have helped. Well done you! And good luck with the mettoject.

@EJayne, many people have tri ed to control an i nflammatory arthritis by diet alone. It doesn't work. We have overactive immune systems and they need the meds to dampen them down. Hydrxy (I take it alongside methotrexate) is a mild DMARD. Yes, side effects are possible, as with all meds (Try reading the leaflet for the humble paracetamol!) but most people don't get them. Hair loss? I know meth can cause it (though not, usually, in the low doses we take for arthritis) but I think it'd be most unlikely with hydroxy. Again, I don't recall anyone mentioning sensitivity to sunlight on hydroxy. On meth, yes. We do have to be careful to avoid the 'meth rash' but it's not too difficult. Until covid I used to visit my son in California every year. I just used plenty of sunscreen and wore a long-sleeved thin cotton blouse i n hot sun. Eyes? We are tested regularly. Actually, my optician does mine now with my annual eye test. You'll be well looked after. Just go for it😀

EJayne

Thanks for all the positive comments, its al been rather a shock. As I haven't done any exercise for the last 6 months, too tired and a complete lack of interest, I am trying to build up stamina and get my fitness back. I hope to go back to yoga in the New Year. Does anyone have any tips for exercise?

stickywicket

Why not try 'Let's Move with Leon'? Many say how useful it is.https://versusarthritis.org/about-arthritis/exercising-with-arthritis/lets-move-with-leon/#:~:text=12%3A%20Celebrating%20success-,What%20is%20Let%27s%20Move%20with%20Leon%3F,strength%2C%20flexibility%20and%20cardiovascular%20fitness.

EJayne

Hi There

After asking the questions about hydroxychloroquine I have been told to stop taking as it was giving me splitting headaches, sickness, tiredness etc. I took sulphasalazine before and proved to be allergic to that. The specialist is now suggesting I take azathioprine or mycophenolate, both of which sound equally horrendous in terms of side effects. Has anyone had any experience of either of these. What about drugs that are non steroid based??

comments will be very welcome

thanks Jayne

Ellen

Hi @EJayne

The following are searches for threads I did about azathioprine and

https://community.versusarthritis.org/search?query=mycophenolate&scope=site&source=community

mycophenolate

https://community.versusarthritis.org/search?domain=all_content&query=%20azathioprine&scope=site&source=community

Best wishes

Ellen.

ljt79

Just in case people come to this thread later, I thought I'd leap in 😘

I've been taking Hydroxy since Jun 2023. It took about 3.5 months to take effect properly, but since then I've only had minor flares, which is great. It has caused me some GI problems (mostly excess gas), which was awful for 3 months, but more manageable on the whole now. Apparently, some formulations are known to be worse for this than others. I also had sun sensitivity, which is a known thing with hydroxy (although my rheum wasn't aware of it, despite the leaflet he gave me mentioning it). For me, it was the rash rather than the hives, etc. and as long as I'm careful with suncream it's not a problem (I'm not a hot weather person though, so less limiting for me 😅). I also had an initial increase in hair loss, but that seemed to ease off after about 5 months and is no worse than annoying perimenopause thinning for now.

I take it with milk to help disguise the taste, but I would be SO happy if they could improve that!

I have a follow-up in March, but all being well I imagine I'll be on hydroxy for the long haul and hope it will help keep things at bay for as long as possible. It must be so difficult having to go through trial and error only to find you're allergic - all those who experience that have my sympathy! I feel pretty lucky in the grand scheme of things.

Hermione

Re: horrible taste from hydroxychloroquine - the brand makes a real difference. I took it for 12 years and had a variety of brands from the pharmacy but found that the only ones that didn’t taste revolting and give me a tummy upset were Zentiva and Blackrock. Other brands, even if “film coated” were completely unpalatable. In the end, because my GP pharmacist was trying to save money and give me a cheap brand, I had to ask my rheumatologist to specify Zentiva only – the GP has to give you what is specified by a consultant.

Listy44

I was unable to continue taking hydroxychloroquine as unfortunately I was taken into hospital with Vasculitus which has left me with sore legs where the Vasculitus literally ate into my flesh! My legs are now scarred due to the medication. I too felt nauseous with the drug.

Pic of my leg!

Welsh1

Was it the meds or RA though?

Charlestown

Hi

ive been taking hydroxycholorquine for over 2 yrs for imflammatory osteoarthritis.

i never had a funny taste in my mouth with it but i did suffer nausea & tummy pains from taking it which lasted 2/3 wks. I very nearly stopped taking it but cm glad i didnt as it did completely subside. I take mine after eating my tea. I found when i took it at night it gave me bad indigestion & acid reflux. Defo better to eat first then stay upright so after tea time meal is perfect. Ive still had bad flare ups & tbh i dont think its making much difference. I can only take it for another 2 years then have to stop. I dont know what meds i will be offered then.