Hydroxychloroquine

[ISAWAL]

After experiencing the disgusting aftertaste on the tongue with this medication, I was prescribed hydroxychloroquine supplied by ZENTIVA, (previously plaquenil) which I am very happy to report of no horrible taste!!

[Caza]

Yes I had the same experience. Disgusting taste, made me feel sick. Thank goodness for this site, went to see the pharmacist, had words as he was trying to tell me they were all the same. Anyway I was armed with info that I got from here & I managed to get what I wanted. Result!

[popsmith1874 in reply to Caza]

Yup sulfazalasine leaves a horrible taste especially when it gets stuck in your throat

[Smw-69 in reply to Caza]

Hi, I'm new to this forum although I was diagnosed with RA 16yrs ago. At that time before I was diagnosed, I had a year with nearly every joint affected and even ended up in A&E one Saturday night in agony with both shoulders. ( I apologise if this post is long winded but it's been a bad year for me.). I've been quite healthy for the last few years on just sulfasalazine. This year after a bad virus all over Christmas into February, (both my husband and I coughing really badly) my RA kicked off. My hands swelled so much one morning my husband had to cut my rings off. My wrist too was swollen, and my right foot and ankle. Saw the Rheumy nurse in March and was put on Hydroxychloroquine along with increased dosage of Sulfasalazine . By the end of May was feeling a little better and my hands were improving and felt ok to go to abroad on holiday which had been booked before I got ill. I needed a repeat prescription of Hydroxychloroquine which I went to the Pharmacy to pick up. I was given Quinoric a generic brand. I was told there was absolutely no difference...OMG how wrong was I going to find that to be. It started dissolving on my tongue and left a foul taste. It was too late to do anything before the holiday and we flew off. 5 days after taking this med I had the most tremendous diarrhoea, going nearly every hour through the night ( my right foot swelled too and hubby had to help me hop back and forth to the bathroom). My husband organised a doctor who prescribed antibiotics and took a sample. I spent 5 days in the hotel room feeling nauseous and unable to eat, I stopped the quinoric just because I couldn't eat. Doctor came back to me and said there was no bacteria showing in my sample (we thought I may have caught a bug) and maybe I had inflammatory bowel disease (I don't) My diarrhoea stopped and I was able to fly home. After a week when my nausea had calmed down I started taking the Quinoric again and lo and behold back came the diarrhoea and nausea. I started investigating Quinoric, typed this into google and up popped a report on the Lupus UK website saying a lot of their members had bad reactions to this drug and to insist on Plaquenil from their doctor. I immediately saw my GP, told her about it and received a prescription for it. My pharmacy said Quinoric was half the price of Plaquenil but that Plaquenil was not now available but would look into it. They found that it is now made by Plaquenil's sister company under the brand name of Zentiva with the same ingredients and sourced it for me. I waited for a little while before taking it as I still had leftover nausea from the Quinoric. I've now been on Plaquenil for about 3wks, still feeling sickly, My wrist and hand and foot is still swollen and painful, and after an appointment with the rheumatologist Reg last week, she said Hydroxychloroquine obviously isn't working for me and wants to put me on Leflunamide! She has given me a month to think about it. My thoughts are that if I had been continuously on Plaquenil from March without all that's happened and the time missed I may have improved by now, who knows, but I'm worried about starting on Leflunamide with all the new set of side effects to get through! At the moment I'm feeling emotional, and when I'm on my own having a good sob. I have found a lot of comfort in reading posts from fellow sufferers, and hope my experience with this generic drug is of help. Can anyone tell me their experiences of Leflunimide? My best wishes to you all.

[ISAWAL in reply to Smw-69]

I am on hydroxy and methatrexate and it works well for me. Flair ups now very rare. Have you been offered methatrexate?

[Smw-69 in reply to ISAWAL]

Thanks for your reply. Reg never mentioned Methotrexate, I will look into it. How long have you been on it and did you have any side effects?

[ISAWAL in reply to Smw-69]

I have been on methotrexate for about 3 years. I was put on hydroxy 300gms then 400 gms for a few months , which did not control my flairups. Methotrexate was then added, and after a few months there was a vast improvement. I get my blood checked every month, as metho can affect your organs, but luckily for me, my organs have not been affected.

[Smw-69 in reply to ISAWAL]

Thank you, something to think about. Keep well.

[Caza in reply to Smw-69]

It's horrendous what you've been through & how awful that it had to happen when you were away.

The taste of the Quinoric made me feel sick, it didn't affect my stomach, if you get my meaning.

Your RD sounds way worse than mine & my thinking is that your rheumy is probably right.

Good luck. Big hugs

[Smw-69 in reply to Caza]

Thank you, in need of a lot of hugs lately, as we all are at times.

[dtech]

Someone on this site said that plaquinal was being discontinued. I asked my pharmacist and he hadn't heard about it. So I still get it. They tried to change me to a generic a while ago but, due to horrible taste, I told them I wanted plaquinal, which I got.

[ISAWAL in reply to dtech]

We cannot get plaquenil here in Scotland . It is indeed discontinued, but now taken over by "ZENTIVA". Tablet seems unchanged. No horrible taste on the tongue!!

[nomoreheels]

I've heard of this before though it wasn't a side effect I had on HCQ. I didn't take my 400mg together, I took 200mg at breakfast & 200mg at dinner, not sure if that made a difference. The one I was prescribed wasn't generic, I took Dolquine made by Laboritorios Rubio (living in Spain at the time).

[dtech]

That's weird we still get it here in England. It's probably a plot by us evil English to deprive you Scots of drugs.....going into Mel Gibson Braveheart mode 😂 lol.

[ISAWAL in reply to dtech]

No too worried detch!! Feeling smug because we don't pay for our prescriptions here!!

[carotopgal]

Mine here in the US is a generic. It's just too costly to ever get brand name drugs here. But I've never noticed any kind of bad taste from mine, so I guess I'm lucky!

[ISAWAL in reply to carotopgal]

I'm pleased to hear it. Probably the generic pill issued by the American health service has been coated with a substance to alleviate the vile taste, unlike the generic kind supplied by our NHS!!!

[Barbara17]

I received Incepta hydroxy rather than zentiva last week. Within two days I felt dizzy and nauseous so took them back to pharmacy and they happily ordered zentiva for me. I'm not sure if other pharmacies would be so obliging but I have a good relationship with mine. I live near Edinburgh.

[ISAWAL]

I am glad to hear you were able to change to zentiva Barbara17, I am convinced it is the best choice.