Plaquenil?

[MLC1972]

Does anyone have experience with Plaquenil? My Rheumy wants me to go on it. Thus far I have resisted because I don’t want to be on these drugs. Unfortunately, Not much seems to be working. I have limited use of my right (dominant) hand. I welcome all feedback, please. Thanks!

[nomoreheels]

So is this your first DMARD? It was mine & I did well on it until after a nearly a year it stopped working. I was prescribed 200mg twice a day & I took one tablet with breakfast & one with my evening meal as recommended.

Have you had an eye test yet? If not try to before you start it then the optometrist has baseline results to work off because we're advised to have them annually whisky on hydroxychloroquine Also tell him you're about to start HCQ, you'll probably have a comprehensive eye test which will include taking photos of your retina but it doesn't harm to tell him so he can add it to your records.

Hopefully once around 12 weeks have passed the HCQ should be working & your hand will have improved but if it doesn't do ask if you can be referred to either Physio or Occupational Therapy. I recently had hand problems which have improved with personalised exercises.

Hope this helps.

[MLC1972 in reply to nomoreheels]

Thanks so much - this is helpful. You’ve not had any bad side effects?

[nomoreheels in reply to MLC1972]

I did have light sensitivity, not helped by living in a sunny country when I was taking it but sunglasses eased that. I had bad headaches too not helped by the light but they eased the longer I was on it, I was fine & happy it controlled me so it was worth it. It's not a given you'll have any if that's why you've delayed starting them, if they don't suit you your Rheumy will find something else, just as long as you become controlled that's the main thing. Your hand would be my concern if it was me, I'd question what else is going on if I have that outward sign.

[helixhelix]

Why don't you want to take these drugs if they control your disease? If you had malaria would you avoid taking drugs to cure it (plaquenil is originally an anti-malarial drug)?

I know people get hugely put off by the horror stories of those who had a bad time with drug X or Y, and the lists of side effects that are possible. But forums like these do tend to emphasise the bad effects as those of us who do well don't really post as it's boring, it's more the people who are having a bad time. The awful side effects are very rare. And you can stop the drugs when we you want.

I've been on plaquenil for 7 years now without a problem. And for me the disease is far more scary than the drugs. I want to live my life normally, and if that means taking these drugs well that's an ok compromise for me. I've been in remission now for around 5 years thanks to the drugs, and have my life back. Before I could hardly move, couldn't cut up food, make the bed, walk far etc etc. Now I do what I like when I like.

[MLC1972 in reply to helixhelix]

I think people come to their decisions in their own way. Thanks for your feedback.

[helixhelix in reply to MLC1972]

Oh absolutely! It's a personal choice and a hard one. I was terrified when I first started. But I realised that many of my fears were unfounded so now I wonder why I gave myself so much grief.

[Milo247 in reply to helixhelix]

Hi there helixhelix,

I just want to thank you for your post, it is an unfortunate fact that mostly negative stories are on these forums, which is so difficult for a lot of us who are looking for hope and courage, the stories as honest as they may well be only represent one side, I need hope, positivity and truth if I am to thrive. Please keep popping in, you and all others who are having positive experiences. I need to know your journey to hold onto all that I can that feeds the hope, if you are not in these forums I miss out.

I know they may not be easy to participate in but we need a true representation of all stories, Thanks again, with deep gratitude Milo247.

[Sjhoney in reply to helixhelix]

I think you’re so right. I had bad reactions to methotrexate and sulphasalazine and am now on hydroxichloroquine which so far has been, fingers crossed, side effect free. Just hoping I feel the benefit soon. It is a scary disease and I would take anything if there’s a chance it will help.

[Hidden]

I have been on it for two years now, I may be moved up to Methotrexate . RA is progressive and causes permanent damage. If you wait, you may get damage that will always remind you that you did not listen to the doc. Mine started out with my hands, mostly my right but the left had some swelling too. My PCP caught it early. I do not have any further damage in my hands because of Plaquenil, but I may be moved to methotrexate soon because the disease has started in my feet and toes.

I have had four knee surgeries in my life. The last was because my Synovium was completely torn to pieces. A lot of people don't even know that RA attacks the joint like regular arthritis, but it also attacks the Synovium. The pain in that knee almost crippled me before I broke down and got yet another surgery. I am so glad I did.

Please don't wait until the pain is unbearable, because that means there will be damage. Best of luck and a big hug to help you along the way.

[MLC1972 in reply to Hidden]

Thank you so much!

[AgedCrone]

Well if you have been diagnosed with RA you have two choices, take the drugs recommended by your rheumatologist or do nothing. If you take the drugs, hopefully your hand will improve, if you do nothing it probably won't

None of us want to take Dmards, but as the RA progresses we realise unless we want to be in pain & miserable all the time - when there is a drug to help....we take it.

In your own time you have to decide which path to follow.

Good Luck!

[Caza]

Hi, I've been taking it for over 4yrs now & it works well for me. I have stupidly tried to reduce them & even stopped taking them altogether 😖 back to square one, couldn't get out of bed 😩

[Blythegirl in reply to Caza]

I found that my inflammation skyrockets if I miss dosses! It’s on my must-have regimen with Enbrel.

[MLC1972]

Thank you all for your stories and feedback. I just returned from my doc. It’s much worse and he said we’re past plaquenil. He has prescribed Methotrexate. I do not want to do this. I’ll probably do another post for experiences with methotrexate. Thanks, all.

[nomoreheels in reply to MLC1972]

Seems delaying start meds didn't work out for you, that's a shame, you must be kicking yourself. Well for what it's worth you'd have a fight on your hands if I was asked to come off MTX. I've been taking it ever since HCQ stopped working so that's 8 years now. Do remember you'll get various experiences as with any med so you'll have to work out which are most helpful. Some before they start MTX are concerned it's a cytotoxic, a cancer drug, but we take it in far lower doses & only once a week. It works in a similar way, targeting unwanted cells, but in our case the ones that cause inflammation. Honestly if they didn't know that most wouldn't even question them, they'd think they were just another DMARD which of course it is. Also unlike any other DMARD we can take another little tablet to help if you have side effects, folic acid.

[AgedCrone in reply to MLC1972]

You can read how everybody on every Dmard reacts ...but to be honest it only matters how you react to a particular drug.We all take a leap of faith when we start any drug.

Most of us here are really grateful we live in a country where we can get expensive drugs for the price of an NHS prescription, or free if we are over 65 (? The age changes all the time)

Waiting only means more pain & possible irreversible joint damage....bite the bullet & start taking what your rheumatologist advises. If your rheumatologist recommends Mtx, respect his many years of training & experience. He is prescribing to help you,, not to punish you for being unlucky enough to be diagnosed with RA.

I took Mtx for 7 years & got my life back....but not many people bother to post " Hi- I'm fine"!

[Sjhoney in reply to AgedCrone]

Free in Scotland 👍

[AgedCrone in reply to Sjhoney]

But for how long? Income tax looks like going up in Scotland!

Hope our Mr Hammind isn't getting any ideas!

[Sjhoney in reply to MLC1972]

That’s not good news, sorry to hear that. Good luck with your meds, really hope they work 😊

[Smiler53]

Hi, I have been on a combination of Hydroxychloroquine, MTX and Sulfasalazine for around 9 years with no problems and in remission for around 2 yrs. I would hate to think how I would be now if I hadn't been taken these meds or followed the advice given by my Rheumy. Wishing you all the best.

[KrsD]

Yes, I've taken Plaquinel and it works great for sjogrens autoimmune artheritis issues.. my Boss has Lupus and he's taken it for 30 years. He says it's the only thing that helps him get out of bed or he'd be stiff and wouldn't be able to move..

You do have to go to your eye Doc due to issues with the eyes but it hasn't bothered me yet..

Good luck and hope this helps...

[Saynso]

I’ve been on plaquinal and methotrexate for 3 yrs now, it seems fine to me. No Bad effects. All good

[Staycalmandcarryon]

I've been on Plaquenil (400mg daily) for one year and in remission for eight months. I don't take anything else. Pain and swelling are completely gone. Very mild soreness from time to time just to remind me the disease is still there. For now RA has crawled back under its stone. Long may it stay there.

[nessa11]

Hello

It is scary to take these drugs. I know exactly how you feel. Plaquenil worked well for me on and off for 17 years! No side effects. My RA got very bad about 8 months ago. I started on methotrexate 3 weeks ago. Was very scared but so far no side effects and it seems to be really helping even after such a short time. You will be monitored really closely and any sign of issues your doctor will take you off it.

Deep breath. All the best

Nessa

[Diane004]

I take 200mg Planquinel daily and 20mg MTX once a week. It seems to work for me, still have ups and downs but on average things are good.

[Moleymum]

I have been taking plaquenil and methotrexate for around 2 years and haven’t had a flare since taking them. I get nausea from time to time but that is all. I’m not thrilled about taking these string medications but the alternative would be far worse. The main thing is to prevent further damage, once damage has occurred it can’t be reversed.

[Dianne123]

I have taken plaquenil and gold for over 30 years, added in sufasazine for about last 15 years. Never had any problems except for gold which caused some mild side effects at start which disappeared.