hydroxychloroquine: I want to try to find out if... - NRAS

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hydroxychloroquine

Radiogram profile image
34 Replies

I want to try to find out if hydroxychloroquine is safe for rheumatoid arthritis compared to methotrexate. I have been taking methotrexate (and prednisolone when needed) since 2008.

My problem areas are balls of feet and stiffness of all toes that also stick together, also fingers cause swelling and stiffness occasionally.

My consultant wants me to go on hydroxychloroquine along with methotrexate.

Can anyone advise on this, also any other recommendation?

With many thanks

K

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Radiogram
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34 Replies
JenniferW profile image
JenniferW

It's quite common to be prescribed both. As far as side effects are concerned, the main one with hydroxy is stomach problems, make sure you take it with a good solid meal. I had to change from a weetabix at breakfast to toast to give my tummy more ballast.

Fruitandnutcase profile image
Fruitandnutcase

I’ve taken hydroxychloroquine since 2015 and so far have had no problems with it. I take it in the morning after breakfast (2 egg tomato omelette, grapefruit segments, mug of tea and a glass of water) along with pills for blood pressure, some seaweed based calcium, boron and D3 capsules for my bones - 🤞 haven’t had any problems with it. I sometimes top up with a couple of paracetamol of I’m feeling particularly creaky. I’ve got sero negative inflammatory arthritis

Haz58 profile image
Haz58 in reply toFruitandnutcase

Hi Fruit. Im surprised you've not been told not to eat grapefruit with blood pressure tablets. I was told not to and so was my husband. It can interact badly with meds, blood pressure meds especially.

Fruitandnutcase profile image
Fruitandnutcase in reply toHaz58

No, it’s never been mentioned and I’ve taken the same tablet for about 20 years. I knew I couldn’t have grapefruit when I took stat8ns for a very short time - Ron’s of the reasons along with the fact that after a week I had so much muscle pain I could barely walk. So I stopped stat8ns and got back to my grapefruit.

Must read the PIL and see what it takes although I imagine the fact that I’ve always eaten grapefruit and it’s not just the odd morning might make a difference.

Just seen this ‘ACE-inhibitors like enalapril, captopril, lisinopril and ramipril have not shown any interaction with grapefruit juice although such an interaction might be possible with angiotensin II type 1 receptor antagonists like losartan and valsartan [18].’

Phew, I take lisinopril.

CinnamonRose profile image
CinnamonRose in reply toFruitandnutcase

I think it's usually printed on the label on the box if you can't eat it, my husband's is on the label where it'll often say do not drink alcohol whilst taking this drug etc one of my husband's drugs deffo had printed do not take grapefruit

Gymcactus profile image
Gymcactus in reply toHaz58

Hi just looked at my bp meds, lisinopril is OK but I also take amlodopine and that has the warning on not to have grapefruit, stari s as well.

Tessie62 profile image
Tessie62 in reply toHaz58

My thoughts exactly, when I read that.

jell profile image
jell in reply toHaz58

I remember I had to sign a form confirming I had been told of the dangers of grapefruit on my body with my meds in the 1990s. . I also had the same warnings from the new surgery after I moved ten years ago with another reminder from the pharmacist. But nothing when I moved again two years ago.

Boxerlady profile image
Boxerlady

I've been on both since diagnosis in 2019 and had Sulphasalzine added in 2020; the combination works well for me.

AgedCrone profile image
AgedCrone

You must listen to your rheumy…s/he will prescribe what might suit you…..we can only say what we take….& how it makes us feel…but you have to try & see what you are prescribed to find out what suits you….You never know Hydroxy might just be your magic bullet….but until you try…you will never know!

Good Luck!

allanah profile image
allanah

Good luck with it xxx and if your rheumy suggests it then I think you have to follow that advice xx

sylvi profile image
sylvi

I take Hydroxy with little side affects darling. xxxx

Haz58 profile image
Haz58

I was ok on hydroxy except I came off it as I had very bad dreams. Once I stopped it the nightmares stopped again.

orange33 profile image
orange33

hello and happy New Year to you. I was also offered this drug along with methotrexate but as I have great difficulty swallowing pills I declined and also I suffer with peripheral neuropathy. Which has caused me more trouble than my RA. I also have diverticular so I was really worried that would also cause more trouble. I do wish you well and I hope it works for you.

BoneyC profile image
BoneyC

I've been taking HCQ for 15 years and MTX for 45 years. Never had any problems with HCQ. I was told it was an anti-malarial drug and its been around and tested for a while (about 60 years) before it was found to benefit RA patients.

Lenash profile image
Lenash in reply toBoneyC

Hi BoneyC,That's a long time on methotrexate. How much did you take, and did you have any problems with it? Was it tablets or injectors? I've been on 15 mg for 15 years and concerned with long term use. Had a lot of hair loss and get the usual tiredness. Also take 1mg of folic acid every day except metho day.

BoneyC profile image
BoneyC in reply toLenash

I was dx age 6 in 1971, 54 years ago and was put on MTX tablets when I was about 16. I took 25mg and only stopped it before I had children and a couple of times I've had neutropenia.

I tried Humira but that put me in hospital with recurrent UTI's and Rituximab didn't work. I've been injecting MTX for about 8 years. Currently on 17.5mg. I take folic acid on 2 days a week. I'm thinking about reducing it to 15mg but it's difficult to get any rheumatology contact these days.

Hair is ok, maybe not as thick as it was but I put that down to my age. Fatigue I attribute to having the disease and the extra effort it takes to do things.

Hopefully you will be alright on MTX for a long time yet.

MJSlide1958 profile image
MJSlide1958 in reply toBoneyC

So interesting to read your reply. My daughter wants to have a baby, but scared because she has RA and needs to come off of meds to get pregnant. How did your plan go to have a baby? Grateful for your reply. Thanks

BoneyC profile image
BoneyC in reply toMJSlide1958

It was quite straightforward and no complications. I had discussions with GP & Rheumatologist to let them know my plans. Was told to pause MTX (think it was only for 3 months back in early 90's!) but once pregnant and around week 18 my RA was so much better. Of course, soon after birth RA comes back but I went back on drugs. It was harder the second time round because coming off drugs to conceive AND having a young child to look after, plus work etc. but worth it in the end.

I can understand your daughter's concerns but the way I looked at it was billions of women have had children and lots had RA, so why not me. Hopefully she will be fine.

MJSlide1958 profile image
MJSlide1958 in reply toBoneyC

Thank you so much, you are so kind to send your story! There is much hope for my daughter too. Many thanks

Florida1959 profile image
Florida1959

The only issue I think is digestive issues, so take after food. xx

ABwn profile image
ABwn

I've been on mtx plus hydroxychloroquine since just after I was diagnosed with RA 20 years ago and am now on prolia as well. MTX and hydroxychloroquine went well for me with no side affects. Good luck. Hope all goes well in 2025.

Dawn7 profile image
Dawn7

Hi there,

I was put on Hydroxy and Methotrexate together. They worked well, although one of the cautions is that it can damage the eyes, and you need an annual eye check. After 6 years of taking it, I am in remission and my Rheumy wanted me to try without it because of the eye situation. On my last optician appointment having opted for the extra scan, it was noted I have a very small indication of the start of macular degeneration (It can be combatted with diet/supplements, which I am now addressing). I have no way of knowing if it was the hydroxy or just my eyes deteriorating, but am glad the scan flagged it so I could act quickly. I will be interested to see in October when I have my next appointment whether its the same or improved. I have my 3 monthly blood tests next week so will find out if my body has stabilised without the hydroxy!

All that being said, I was comfortable on hydroxy for the time and as others have said it is often used in conjuction with Methotrexate, and I would consider going back on it if needed. Be guided by your Rhuemy and ask them about anything you are unsure of.

Chockyuk profile image
Chockyuk

Hello

I took it with MTHX just before Covid, but it gave me such severe stomach issues I ended up in A&E. But that’s just me it didn’t suit, I’m sure there are many out there who it works well for, I think they did advise at the time to have a particular eye exam once a year, I was booked in for this at the hospital but didn’t need to go in the end as I had to come off it. For me it was replaced with Sulfasalazine, which worked a treat!

welsh12 profile image
welsh12 in reply toChockyuk

What stomach issues did it cause you

Bookworm55 profile image
Bookworm55

You need to have yearly eye tests with hydroxychloroquine as it can rarely cause eye problems.

bowlsforu profile image
bowlsforu

hi

Aged 89. Have RA for 14 years. From the beginning. Been on metho. 15 mg taken on 1 day each week. Hydrx. 200 mg on 4 days ( reduced from daily 3 years ago ). It has worked well for me with no problems. Best wishes. JB

welsh12 profile image
welsh12 in reply tobowlsforu

Did they reduce hydrx because you were stable

Lenash profile image
Lenash in reply tobowlsforu

Hi JB,I'm 72 now, and have also been taking 15 and sometimes 20 mg of metho for the last 15 years without anything else, except Prednisone or celebrex whenever I have flare ups. I've always tried to stick to the least effective dose, but I'm having a lot of feet and ankle issues now so considering adding something else, but not sure yet. Have you been taking the tablets or injectors?

bowlsforu profile image
bowlsforu in reply toLenash

I take tablets plus folic acid 4 days after methax. .

Best wishes

Nana-8 profile image
Nana-8

I hear ya! Hydroxychloroquine did not phase my RA issues. Each time I took it I was goofy dizzy and took it for two months with no improvement . There is some issue with eyesight you need to see an ophthalmologist for a baseline eye health assessment.

JessJess21 profile image
JessJess21

i am on both - and responding well ( fingers crossed!) - i am steroid resistant so cant take pred. Still top up with paracetamol. Its early days for me ( 2 months) but so far so good! X

HappyD34 profile image
HappyD34

Hi Radiogram, I was on hydroxy for about 4 years . Initially prescribed 2 tablets daily but I reduced to one after speaking to rheumy as I thought my skin was a bit patchy. On reflection it probably wasn’t but it was fine for me otherwise. I think as Agedcrone and others probably mentioned that some drugs suit some of us but not all of us. Good luck tho 🙏👍

jell profile image
jell

My consultant told me they were stopping the drug because of issues but agreed I could stay on it for 3 days a week.

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