Ra hydroxychloroquine and mtx: Hi just looking for some... - NRAS

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Ra hydroxychloroquine and mtx

Louis- profile image
14 Replies

Hi just looking for some advice. I have been on 20mg metoject (mtx) for 5 months . It was going will until last week when I had a flar up and now they have added 5mg a day hydroxychloroquine. I have tried to read up on this but a lot of conflicting reports on siderfects? Any tips on best time of day to take it might help .thank you for reading my post and I hopefullyyour all have a good day .

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Louis-
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nomoreheels profile image
nomoreheels

Sorry to hear you're flaring. Are you sure it's hydroxychloroquine you've been prescribed, not prednisolone, or the other way round? HCQ tablets are 200mg either in one dose or two a day. Pred is often prescribed to dampen down the inflammation & pain of a flare & comes in 1mg, 2.5mg, 5mg tablets upwards.

Louis- profile image
Louis- in reply to nomoreheels

Yep definitely hqc sorry me getting it wrong your right 200mg one a day.

nomoreheels profile image
nomoreheels in reply to Louis-

Ok, that helps! HCQ was my first DMARD & it worked well for around a year, that's when MTX was added. I was prescribed 200mg twice a day so took one with my morning meds & one with my evening meds. It's really your preference unless there are specific instructions on the pharmacy label on the box. If you take a ppi, omeprazole of similar, leave at least 4 hours before or after taking your HCQ.

I had light sensitivity, which in turn caused headaches. It worked well though so I was loathed to give up on it, it was only as I've said that it stopped working that it was stopped. Some can experience nausea & we're advised to have a baseline eye test before starting it or soon after & annually unless specified because there is a rare side effect of retinal toxicity. It really is rare though & I always suggest we don't assume we have any side effects when starting a new med, you may never have them, but I think there's something in suggestion can cause us to think we will.

Louis- profile image
Louis- in reply to nomoreheels

Thanks for the reply really helpful x

DelicateInput profile image
DelicateInput

A certain brand of hydroxychloroquine has caused diarrhoea in a lot of people on here. If you do a search, you will find the posts. The NHS hospital I attended does not use Quinoric but the GP gave me a repeat prescription for HCL, which was Quinoric, and it seriously aggravated an existing stomach problem. The favoured brand is Avista. You will find most people recommend taking in the morning but not on an empty stomach. Quinoric has a coating which irritates the stomach. I ended up having to have an endoscopy and colonoscopy. I still have the diarrhoea, two years later. Most people recommend that you take Omeprazole, which reduces stomach acid, along with the HCL. At the moment, I cannot tolerate Omeprazole as I have an ongoing stomach bug.

There are also a number of posts on here about HCL itself (not the coating) causing nose bleeds. I took it the first time in winter/February and in conjunction with a cold, I was coughing up blood and had a heavy nose bleed.

As regards its effectiveness, it worked on my shoulder in conjunction with Chinese herbal tablets. It did not work on my hands at all - I had a serious flare up on my hands when I was taking it after I ran out of Chinese tablets. My shoulder also stopped improving when I ran out of the Chinese tablets and just continued with the HCL though the shoulder did not flare or deteriorate back.

It took quite a few trials and perseverance for me. I personally found HCL was best first tried in the summer months when there is a lower risk of colds and flu. I have an ongoing viral infection which is probably why it caused me to cough up blood in the winter months. Also, it is best taken with food in the morning, to minimise stomach problems. Some people might be tempted to give up at the first hurdle, but I think you have to give anything a fair trial.

Louis- profile image
Louis- in reply to DelicateInput

Thanks for your reply. how do i find out the brand ? I got pills from hospital and just says hydroxychloroquine on box and pill packed were will the information be please?

DelicateInput profile image
DelicateInput in reply to Louis-

Hi Louis

The brand would be there on the packet and also on the metallic strip that encases the tablets, but it is probably not prominent. On the one packet, the word "Zentiva" is on the bottom righthand corner and is also stamped "ZENTIVA" underneath the words "Hydroxychloroquine sulphate

200 mg film-coated Tablets".

I no longer have the packet for the Quinoric brand but the film-coated metallic strip states

"QUINORIC 200 mg

film-coated tablets

HYDROXYCHLOROQUINE SULPHATE"

If you still can't find it, I suggest you ring the hospital pharmacy or just pop in with the packet. If that is difficult, you could take the packet into Boots or Superdrug and ask the pharmacist.

You are right to be cautious about taking these drugs. As others have mentioned, Hydroxychloroquine can cause retinal damage. I had only just had a normal eye test when Hydroxychloroquine was prescribed and did not think I needed another. I was not advised by the hospital to have one nor was one offered. However, I started getting some sight problems after a few weeks on Hydroxychloroquine and booked a private test with SpecSavers. The test of the retina for Hydroxychloroquine users is different from a normal eye test, as they examine the retina carefully. The optician found some damage on the retina of the left eye, which came up as a blind spot when he then tested my sight. He did the tests three times and was very perturbed. He was irritated that I had not had this test before I took Hydroxychloroquine, and wrote to my GP pointing out that we had nothing to compare it with and therefore could not say whether the Hydroxychloroquine caused the retinal damage. I now pay for a retinal sight test every year though I am not taking any drugs. The rheumatologist told me that hydroxychloroquine only causes retinal damage after about ten years but the optician said this is untrue and he has a number of cases.

I feel the attitude to these drugs is quite cavalier. I have had problems with others like Prednisolone, to which I am allergic and it therefore did not work. Naproxen also caused diarrhoea and stomach upset.

If you do find that you have been prescribed Quinoric, I would not take it. You could go to your GP and get a different brand until your next hospital appt. I somehow don't think though that a hospital would prescribe Quinoric. The gastro enterology dept at the hospital said they thought the stomach problems were caused by the Quinoric. They found a stomach ulcer and chronic gastritis on investigation. I had tested positive for Helicobacter-pylori, which is a stomach bug that can cause stomach ulcers but also stomach ulcers that turn cancerous, which is why I went to the GP about the diarrhoea - and she referred me as an urgent cancer referral. The bug is very common and, combined with Quinoric, will likely cause an ulcer. The test for h-pylori is a breath test, stool test or blood test.

Doctors always seem to be second guessing who has RA and who hasn't, and who will get a bad reaction to certain drugs and who won't. I just wish they could be more scientific about it. My niece, like a lot of young people, though she had RA because of pains in her hands. She got an early rheumatology appt and the consultant told her she had wonderfully flexible hands and could not possibly have RA. I had to wait six months for an appt even though I had lost the use of my hands and the RA meanwhile caused considerable damage.

I'm afraid I take what they say with a pinch of salt because in my case they have been wrong every time.

Good luck and I hope you get it sorted out. You are wise to investigate first. I wish I had.

Louis- profile image
Louis- in reply to DelicateInput

Thank you for your reply and in depth information it is very helpful. I have booked an eye test for Tuesday and informed them that I am starting hydroxychloroquine so they have said they will do an in depth test so they have a base line before I start. Thank you again.

munchkin profile image
munchkin

I took hydroxy for a few years it can cause eye problems so make sure,you get your eye sight tested regularly and also as someone has already mentioned light sensitivity so carry a pair of sunglasses and Wear them in any slightly glaring sunlight.

Louis- profile image
Louis- in reply to munchkin

Thank you I have a new eye test booked .I wear glasses anyway and have sunglasses on prescription so am prepared. I am a bit mad the hospital didn't say anything about the light sensitive information.

Thank you

munchkin profile image
munchkin

Good to hear you have an eye test booked I would mention to the optician you are taking hydroxy. I used to always carry a pair of sunglasses with me when I took hydroxy.

Joy_1 profile image
Joy_1

Hi

I am on 17.5mg MTX (jab) + HCQ (400mg).

Have you had an eye test? It's recommended. You need to get a baseline reading first and then an eye test every year. Info should be in your PIL.

I just had one side effect from the HCQ - needing the loo twice a day and lets just say when I needed to go I needed to go! Side effect was resolved by the lovely folks on this Forum. They suggested splitting my dose. So I have 200mg with my breakfast and 200mg with my dinner.

As you are only on 200mg - then you could do what I was doing anyway which was to have my HCQ slap bang in the middle of my meal, that way my stomach was nicely 'lined with food'.

And no antacids within 4 hrs of taking your HCQ.

Joy

Louis- profile image
Louis- in reply to Joy_1

Thanks for the tips that will help he lots x

BoneyC profile image
BoneyC

I've taken Hydroxychloroquine 200mg bd for 9 years, but suffer from a bloated gut and burping. Although I've reported this to GP, nobody gets to the cause. Recently I requested my pharmacy not to supply Quinoric, but Zentiva. This worked initially, but subsequent repeats ended up being Quinoric. The pharmacist has now given me a film-coated version of HCQ. The manufacturer is Bristol Laboratories Ltd. The box is lilac/white with Hydroxychloroquine Sulfate 200mg film-coated tablets on the front. I can't say its helped my bloating but may help others reading this.

I saw a Rheumatologist recently and told him the above. His response was HCQ doesn't cause stomach problems! I told him that's not what patients say on the forums!

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