Hydroxychlorquine: Quick background... - Scleroderma & Ray...

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Hydroxychlorquine

StormySky profile image
3 Replies

Quick background:

Around 2 years ago, shortly after diagnosis, I was given hydroxychloroquine. I struggled to tolerate it and vomited regularly for the 3 1/2 months I tried to take it (lost over 1/5 of my body weight). However, it did seem to reduce swelling, rash and pain a little (it was combined with prednisolone, so not sure which helped, or if both did). One time the pharmacist gave me a different brand and, whilst I was nauseous, I wasn't vomiting, yippee! I saw a thread that some people are able to tolerate other brands and not Quinoric, so wonder if that is the case for me. Unfortunately, the next month the pharmacist went back to Quinoric and the vomiting, etc. started again. My GP won't prescribe hydroxychloroquine now due to the reaction to Quinoric and other brands being more expensive.

I am in a lot of pain and struggling to do my job. I know it is possible to buy hydroxychloroquine online e.g. as an antimalarial for travel. However, I'm unsure which companies are reputable or if the hydroxychloroquine used for travel is the same as the one used for autoimmune. Does anyone know? My local optician is able to do the eye checks. I was due a dermatology review in June, but am told I am still on the pre-waiting list list. Once I move onto the waiting list it will be around 3 months till the appointment.

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3 Replies
Gmargs profile image
Gmargs

Hi, not sure if you see a Rheumatologist but maybe they might consider prescribing the other brand or review/suggest other brands to try (could be expensive doing a trial and error, but if you found a brand that works for you it might be worth it). Also if you are happy to pay for the more expensive brand because it causes less side effects it shouldn’t be an issue.

Maybe the GP is playing it safe, seeing you had lost weight due to not tolerating one brand. Or the dosage is not quite right for you? Personally I wouldn’t be purchasing my medications online.

I do believe that it is quite possible that you can’t tolerate the excipients or binding substances (ie: not the actual drug substance) used in a particular brand. I had a similar experience with a proton pump inhibitor (acid reducing drug). One brand was fine another which was once given actually caused me to get reflux, where it should of prevented it. Other medications I have trouble with relating to brands are antibiotics. So yes finding a brand that doesn’t cause you discomfort is possible. Keeping in mind that some medications require blood tests to monitor if they are helping and/or causing more harm than good.

Some side effects can happen also due to when you take the medication or if on an empty stomach. I take a medication that says not to take with food but my specialist said it was OK to have it with food if it stopped me feeling nauseous or reduced the chances of vomiting or diarrhoea.

I feel your medication needs need to be discussed with a specialist first more so than a GP. Once sorted and established then your GP could take over for ongoing repeats.

Hope you can work out something with your doctors

Marie

Blue_feather profile image
Blue_feather

As Gmargs has suggested, this is surely best dealt with by your specialist/ rheumatologist. As a side thought, I wasn't even aware that GPs are allowed to prescribe it, so why did he not write to your specialist and ask permission to try something else/different brand rather than leaving you with nothing?

Perhaps write an email to your specialist's secretary, or phone the rheumatology nurse if you have one.

If you can afford it, you could consider a one off private consulration with a rheumatologist with a view to prescribing a different brand of the same thing, with follow up private prescriptions in case your GP digs his heels in.

Please don't buy online, there is too much risk involved.

Hope you find a solution soon.

grannyannie profile image
grannyannie

Rather tardy in answering, sorry. I did not have such a bad experience as you, however I found the Hydroxychloroquine manufactured by Blackrock caused much fewer stomach problems. I also find if I take them with food, my porridge in the morning, things are better. My pharmacist does try to get the Blackrock but it is not always possible. Hope this helps, keep warm.

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