Is anyone out there on the Generic Hydroxychloroquine Sulfate roundabout again?
Plaquenil was my first prescribed drug and it worked like a charm, first on 400mg daily dose and then able to wean to 200mg daily dose. Then came the crunch, the Nhs no longer licensed Plaquenil and the generic drugs took over, mainly Quinoric.
I tried Quinoric and had adverse reactions e.g. rashes, joint aches and bad mood swings. I sought an alternative, can’t remember which one was offered but, similar side effects to Quinoric with a touch of nausea thrown in. My Pharmacist was very supportive and suggested Zentiva. After a few arguments with my GP, who insisted they were all the same because it was the same active ingredient, She allowed the Pharmacist to try me on Zentiva. The result was not 100% the same as Plaquenil, but no drastic side effects. However, I had to give my Pharmacist up to 10 days notice of repeats because he had to order it in especially. Today I received another month’s repeat, but not Zentiva. Bristol Labs version who also brand Quinoric. The Pharmacy note with the repeat was ‘Can’t get Zentiva brand’. Hey ho here we go again! I have been on LupusUK site and obtained Zentiva Customer Service phone number if difficulty of supply is found and e-mailed it to my Pharmacist! I’ve only got Zentiva until Thursday this week. After that, I’m stuck. Any advice please.
Zentiva®
If your pharmacist has any difficulty obtaining Zentiva® branded hydroxychloroquine, the product description is: "HYDROXYCHLOROQUINE SULPHATE (ZENTIVA) 200MG FILM COATED" and the 'PIP number' (product code) is 1201730. If for any reason they cannot find the product on their system they can ring the customer service line on 0800 854 430.
From the LupusUK site.
Looks like it has to be the Pharmacist who has to ring them. Any information on the shop floor ADMIN?
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Mines on order at the minute it wasn’t in yesterday, I have zentiva brand listed on my script... let you know how get on... it is normally ordered in...
Delay in getting the Zentiva brand. Zentiva gave my pharmacist 2 suppliers that they use. My pharmacist cannot raise an order yet because the supplier will not be putting their order in to Zentiva until Tuesday ( after Aug Bank Holiday Monday). So, if everyone does what they do and in the right order, I may get my prescription at the end of the week. I suspect though I might have to do some memory prodding on Tuesday! I did send an email to Zentiva myself to ask about the situation with supply and also about the vague rumour (via my pharmacist) that Zentiva is changing? -closing down?- or something. My pharmacist couldn’t go any further with information. So far I’ve only had an acknowledgement reply.
I have now been without Zentiva hydroxychloroquine sulphate for 3 days.
By the way I rang two branches of Boots and they too have to organise supply orders well in advance of need. I saw in the NIC site that Zentiva is the most expensive generic version and probably shoots itself in the foot as far as the NHS is concerned, but, at no time was it suggested I might like to pay the difference. I most certainly would. At an extra £17 approx per month for 60 tabs, it would be a worthwhile investment.
Comments very welcome.
In the mean time I’ve stocked up on some organic naturopathic anti inflammatory products from Holland and Barrett- now THAT’S expensive!
I am now starting to have problems with supply of this with my local pharmacist telling me it's due to private clinics stockpiling prior to Brexit. He told me he can't afford the prices that are being charged so I'm going to have to trawl pharmacies looking for it.
Update to my posts. I have managed to stockpile 3 months Zentiva hydroxychloroquine using my normal monthly repeat prescription. Right or wrong I was without initially for 2weeks and bought Holland & Barrett Turmeric. After 4 months I am still taking the Turmeric instead of the Zentiva.
No, Admin, I haven’t done this under Drs instruction and am not recommending anybody else do what I’ve done. I see my Rheumie this month and will tell him how I’ve fared.
Actually, I have no ill effects to report at all. I don’t know how long Hydroxychloroquine stays in the body after 20+ years taking it so I kept up my monthly repeat in case I have to return to it. Slap my wrists if you must but I was encouraged to make the decision for myself after your blog, Angie, that you no longer took any medication. Not blaming you, promise.
You and I have had Lupus about the same length of time and as I haven’t had a bad ‘flare’ for 12years I thought it worth the risk. I’m 71 yrs old now (just) and wanted to try out natural remedies. The lack of supply of Zentiva brand provided the opportunity. I shall be asking my Rheumie about the Prednisolone too. Nothing I can do about the Levothyroxine as my over active thyroid was ‘killed’ off with a radioactive ‘drink’. I have to admit, psychologically or not, I feel less ‘poisoned’.
I iterate again, I am not recommending anybody else do what I have done.
Update: I remained off Zentiva for 6 months and actually, surprisingly, felt good for it. I was supplementing with Turmeric 2x 400mg capsules a day (1 morning, 1 evening). I felt ok and I slept really well at nights. I stopped wheezing and energy levels were great. I took up my appointment with the Rheumatologist who dismissed the Turmeric as unproven and recommended that I not only go back onto the Hydroxychloroquine but also reduce my 5mg Prednisolone maintenance dose. I had blood tests done, the results for which I had to get from my doctor after 2 weeks.
Still on Turmeric and still feeling good, the Doc passed on same advice of going back onto the Zentiva because the blood tests had shown through the ANA activity that my Lupus was active.
So, here I am, I’ve been back on Zentiva again for about 2 months. My body feels as though it’s been through a wringer. My ‘false’ knees are swollen, my wrists and arms hurt like mad, I’m wheezing and yesterday I had a ‘fat’ lip. What in earth is going on?
Any suggestions please?
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