How long is safe to go without hydroxyqloroquine ? I can’t seem to get it and it’s been 2 weeks now.

[Mag17]

Does anyone know the answer? It’s impossible to get any help or advice... it’s so hard to be ill in crazy times...

[Spanielmadlady]

Can you not get any at all or just a certain brand ? X

[Mag17 in reply to Spanielmadlady]

Certain brand. I can only handle Zentiva brand. Even have the letter from my doctor. But there’s been trouble with this brand since new year I think.Am I still okay not to take it?

Thank you for your message x

[Spanielmadlady in reply to Mag17]

I didnt get zentiva last script think I got Bristol but I seem ok with it.i think you can just stop hydroxchloroquine so in that respect you will be ok but symptoms might start up again if you are without it for a while.have you rang your consultants secretary to ask some advice ? X

[Mag17 in reply to Spanielmadlady]

Yes I actually had a rheumatologist consultation last week and she said that one week isn’t a problem but it’s a bit longer now. And I don’t really want to have all those symptoms back...I’ll try more pharmacies tomorrow but not sure how helpful will that be.

Hopefully I’ll get some lack.

Also the Bristol ones gave me bad stomach last year and I had it put specifically that I can only take zentiva. I am quite sensitive to all medication I ever take.

[Spanielmadlady in reply to Mag17]

I hope you manage to find some if not get back in touch with rheumatology xx

[Mag17 in reply to Spanielmadlady]

Thank you. Will keep trying x

[whatsit in reply to Mag17]

Bristol is coated good alternative to zentiva suits me x

[Mag17 in reply to whatsit]

My body doesn’t like Bristol ones... thank you for your response x

[happytulip]

Write to your MP. I was in this situation and it helped.

[Mag17 in reply to happytulip]

Thank you

[Jmiller623]

I’m so sorry Mag. HCQ stays in your system for a fair bit of time. I hadn’t taken it for a month and my level was still detectable. However, I start feeling bad if I miss it for even a week. Two weeks, I’d be crippled with pain probably. I think it all depends on the presentation and severity of your disease activity. It’s not something that has to be titrated down on anything. It’s a med that can be stopped suddenly without any harm (other than lupus symptoms Re-emerging) unlike say, antidepressants or steroids.

I hope you find some soon. ❤️xx

[Mag17 in reply to Jmiller623]

Thank you very much. That’s very helpful. The pharmacy promised to chase it so hopefully I’ll get some answers early next week.I’m not feeling much different apart from odd joint pains but those are often triggered by stress.

Stay safe x

[larainehudson49 in reply to Mag17]

Could I ask you how the hydroxy helps you? I've been taking it for some years, I was hoping it would help with my fatigue but alas, it hasn't. I do hope you soon get your meds and feel well again soon x

[Mag17 in reply to larainehudson49]

I can definitely say I feel more like human not a zombie. And since hydroxyqloroquine is the only med I take for my lupus that’s what helps me. Also my flare ups are less frequent and less severe. Other than that... living with lupus is not easy to say the least...Take care x

[larainehudson49 in reply to Mag17]

Thank you for your reply. I agree its certainly not an easy path. We are Lupus Warrior's. You take care too!

[smudge in reply to larainehudson49]

Yes alas nothing seems to help the fatigue! However I went from being on the Bristol brand after 8 yrs to Zentiva and I noticed a difference with less aches and pains, then I went on to Blackrock and omg what a differnce for me with the aches and pains, fatigue and infections I am so much better on this, however if I stop taking it which I have when they couldn't supply it then I suffer badly within a couple of days. On the Bristol I was suffering all the time so I would say it's always worth trying other ones to see what suits you better.

[larainehudson49 in reply to smudge]

Thank you for your very helpful information, I will definitely make enquiries. Best wishes, take care 😘

[kalas2008]

I have found the Black Rock make is a reasonable alternative to Zentiva, even though my prescription specifies either of those I still have to ring round all local pharmacies to find some or they will dispense the Bristol make. There is no difference in the actual drug content but the other ingredients used to make the Bristol tablets lead to severe gastro/intestinal problems for me. I suspect the issue that restricts the supply of Zentiva is cost !! Good luck

[Mag17 in reply to kalas2008]

Yes, I heard and read about the ingredients thing as well. And had issues with different brands. I don’t understand why there has to be so much drama with drug that is used by so many patients. They know we need it and for the last 3-4 years there’s been an issue but usually resolved within couple of days, nor weeks like now.

[Hamptons]

I stopped two years ago and it took about 8 weeks before symptoms became difficult to manage.

[Mag17 in reply to Hamptons]

Thank you so much. That’s very helpful to know.Stay safe x

[Lizard28]

I’ve not had the zentivia one for a while, I’m ok with the Bristol one, the quinoric one tastes vile but I’ve been on them for years and I’m ok, it was only at the very beginning my stomach didn’t like them, once in my system I can take any of them now.

[LalSD]

Hello Mag17, I took about 6 weeks to go back to my lupus symptoms after not getting it. Please try Boots as they have a wider selection. We have about 2 months after stopping it and we do go back to our flare given we are in flare when we stop it. So please make sure you rest and try to eat healthy whilst you find the right brand incase it might take a bit longer and you will need to manage lupus without the the right brand. That’s what we had to do begging of lock down back in March. L x

[Mag17 in reply to LalSD]

It is boots I’m dealing with at the moment. I will wait until Monday as they said they will get back to me regarding the zentiva one by then. And if not I’ll ask for black rock brand maybe? I had issues with the Bristol one already. I’ve been on hydroxyqloroquine for 8 years now and I know which one is tolerated by my body, hence the certain brand on prescription. I hope they will get it soon. Its really upsetting that we have to fight and beg to get meds...Stay safe x

[LalSD in reply to Mag17]

Mag17, are you based in London? I can ask my local and drive it to you? x

[Mag17 in reply to LalSD]

I am in London, but you would need my prescription to get, no?Thank you for the kind offer x

[Mag17]

Thank you to all who took time to reply to my question. I’m very grateful!Take care everyone and have a peaceful day x

[Piscesdreamer]

Valuable info regarding your question. Your question is addressed at the 17:35 mark.

youtu.be/cvtsS_ykpUc(Not working as expected?)

[Mag17 in reply to Piscesdreamer]

Thank you so much! Everyone here is so kind to me x

[Barbara17]

I’m a bit late to the party but I’ve just seen this. I picked up my repeat Zentiva this morning so it is still available. I’m in Scotland , just outside Edinburgh. I have heard that Boots don’t or won’t supply Zentiva so maybe try another chemist.

[Mag17 in reply to Barbara17]

I’ve spoken to another one this morning but have to wait until Monday to speak to my GP and request another prescription.Thank you for the update. x

[Poshcards]

I am on Zentiva, and I don't have any problems getting it x

[MDHa246]

Hi I have trouble with all makes except zentiva and like you my script is marked to only supply this. All the large branches seem to use the same provider ie boots and Lloyds. I changed to a smaller independant chemist last time it was short and he good it for me due to a different supplier. However even he could not get it 2weeks ago but tried again and it came on Friday. Hope this helps

[smudge]

I have Blackrock and when I stop I am really bad within a couple of days.Last time I was desperate for some I rang the rheumatology nurse and asked if they could do me a prescription, I had checked it was available at the hospital pharmacy and she did.

I have some here and Bristol which were delivered and I can't take!

Good luck on your hunt.

[Mag17 in reply to smudge]

Thank you x

[Mag17]

I finally got my hydroxyqloroquine! Alleluia!

But in the meantime I broke my tooth, got an infection and was put on antibiotics that most probably have caused an allergic reaction. As soon as I take them I start coughing, my throat feels swollen and tickly, I have severe thirst and my lips and inside my mouth feels weirdly numb... I called 111 but they said to continue taking amoxicillin and that I’m fine... I am honestly scared to keep taking it as I have only my child living with me...

Any idea what to do?

I seem to be having no luck with support from medical people.