Hydroxychloroquine

[Welshlasscerys]

Hi everyone, I was diagnosed with SLE 8 weeks ago. I’ve been on hydroxychloroquine now for 7 weeks but have not seen any improvements as of yet. I still suffer with tingling in lower limbs, inflammation and sore joints. I was told I needed to wait the 3 months before seeing any benefits but wanted to see if anyone else found it took this long? Feeling slight discouraged at the moment with no improvements. Any feedback would be great. Thanks

[Spanielmadlady]

Hi.Yes it takes that long.many of the lupus drugs take many months to work.they take 8 weeks to start to work 6 months to get full effect.ive been on hydroxchloroquine for 2 years now xx

[Welshlasscerys in reply to Spanielmadlady]

Thanks for the reply! Oh, gives me hope then, thank you. What were your main symptoms please? And have they improved since you’ve taken the medication?

[Spanielmadlady in reply to Welshlasscerys]

My main symptoms were extreme fatigue, joint pains,stiffness,headaches and recurrant breathing problems..I find it hard to decide what drug has helped what if that makes sense as I also take prednisone and mycophenolate but what I will say is since I've been on the drugs for lupus I've been stable with no hospital admissions.i still do get fatigue and occasional joint pains but not to the same degree.

Google the spoon theory xxx

[Welshlasscerys in reply to Spanielmadlady]

I see... oh so you’re on more than just the one! Hard to know then, yes. Glad things are better for you though! I will take a look at it now. Thanks so much

[Spanielmadlady in reply to Welshlasscerys]

You may well find they add different drugs as you go along. Hydroxy is the cornerstone of lupus treatment x

[Spanielmadlady in reply to Welshlasscerys]

Hope you've had your eyes tested x

[Welshlasscerys in reply to Spanielmadlady]

Ok thanks, did you just start on hydroxychloroquine then they added along the way? Yes, I have had them tested thanks, said I needed it before started the meds xx

[Spanielmadlady in reply to Welshlasscerys]

Good stuff.its every year whilst taking hydroxy.hydroxy can also make you photosensitive so dont forget the factor 50+ and a hat when you go out 👍 I was already on prednisolone when I started hydroxchloroquine in sept 2018 .then in oct 18 they found I had lupus in my kidneys.i started azathioprine but developed drug induced hepatitis so had to stop it.after waiting several months for my liver to recover I started mycophenolate in sept 2019.im also prescribed pregabalin for nerve pain.Dont be surprised if you are diagnosed with other autoimmune illnesses as they go hand in hand.i have 4 in total 🙄 x

[Welshlasscerys in reply to Spanielmadlady]

Oh gosh, bless you! You haven’t had it easy by the sounds I know, I’ve heard that...

[Spanielmadlady in reply to Welshlasscerys]

Comes with the territory lol .....I just go with the flow.thats only part of my story I've been ill for 7 years took 5 years to get a diagnosis. In that time I've had 6 bouts of pneumonia in 5 years (all hospitalized) which put me into heart failure for a year so the lupus has also affected my lungs,heart and kidneys .So you can see what I mean now when I say since the hydroxchloroquine I've stable with no hospital admissions xx

It's all trial and error until they find the drugs combo that works for you...its a long process x

[Welshlasscerys in reply to Spanielmadlady]

God gosh.... you really have been through it! Poor thing glad it’s been more stable since for you! What an awful time you’ve had!

[Spanielmadlady in reply to Welshlasscerys]

Good luck with your journey...dont be afraid to ask here.they are a lovely caring bunch with a wealth of advice to share xx

[Welshlasscerys in reply to Spanielmadlady]

Thanks means a lot... And thanks for your reply and for sharing your experiences ❤️ Good luck too xx

[Spanielmadlady in reply to Welshlasscerys]

🤗😘 xx

[Sunphoenix in reply to Spanielmadlady]

Like you, spanielmadlady, I’m on hydroxychloroquine for over 13 yrs, increased from 200mgdaily to 400mg daily, over the years and several flares and hospital admissions, I’m now on pregabalin for nerve pain and Mecophenolate 300mg twice daily plus numerous painkillers and various doses of prednisolone. So to welchlasscerys, I’ll say stick with it as with time you’ll see the improvement of your symptoms. And most of all, communicate your worries and symptoms with your consultant rheumatologist. I wish you all the best. Xx

[CecilyParsley]

Hi Welshlasdcerys it took about six months for me to feel the real benefit of Hydroxychloroquine. I was on it for 11 years. I really helped me with the fatigue and pain but you might need other drugs added which they will not know until the Hydroxychloroquine is effective. Hang on in there. I hope that you are feeling much better soon xx

[Welshlasscerys in reply to CecilyParsley]

Thank you for the reply Cecily! It’s nice to have feedback from people who have been through the same! thank you

[Kevin53]

As well as this wonderful site there is also lots of free information on the Lupus UK website. If you live in Wales there are support groups in Cardiff, Pembrokeshire and Carmarthenshire and North Wales. Best. wishes Kevin

[Welshlasscerys in reply to Kevin53]

Thank you Kevin much appreciated

[BeeManShrop]

Hi Welshlass My wife started hydroxy (200mg) at the beginning of Sept in an effort to, at least do something for her illness. Rheumy then was not sure whether it was her RA or Lupus (which had been talked about as a possibility but had not been officially "diagnosed").The dose was increased to 300mg in November, can't take any more as her weight is now less than 60kg (lost 5 stones) so 300mg is the max she can be given.

On the good side, the rash she had on her arms and chest faded away within 3 weeks and now after 4 months we can see that her hair has stopped dropping out and we think has started to regrow (just a little). Thankfully, she has had no side effects so far as we know, but still has pain in arms, hands and knees and cannot eat anything other than Complan. Only last night I was rubbing Nurofen ointment into her biceps to ease the pain as she had her hands in splints.

You are not alone as we too are in this limbo period just waiting to see when, OR if, the hydroxy starts to ease the fatigue and pains. Currently, she can just about manage to get around the house but cannot do any of the usual chores. Hope this helps -- just a bit -- hoping you have a better New Year.

[Welshlasscerys in reply to BeeManShrop]

Thanks so much for the reply. I hope your wife starts to see some improvements in the NY- sounds as if she’s had it rough bless her! Yes, very similar symptoms to myself... I am on 400mg a day. I suppose it’s just a waiting process and just praying to god that everything starts to improve. Best wishes to you and your wife... and a healthy new year 🙏🏻

[Kevin53 in reply to Welshlasscerys]

You may find it useful to keep a simple diary. Score yourself out of 10 each day and write down any questions that arise.This can be useful to take to your medical appointments. Best wishes Kevin

[Welshlasscerys in reply to Kevin53]

That’s good advice! Thank you

[BonnyB]

Hi, I've been on hydroxychloroquine fir around 3 weeks. I'm on no other medication at the moment.Like you I'm waiting and praying for improvement.

Swollen hands, aching joints, tiredness and heady.

X

[Welshlasscerys in reply to BonnyB]

Ohhh best of luck! Are you taking 2 tablets per day? I’ve been advised 2 for the first 3 months and then one from then on in. Yes all the same symptoms as me... xx

[BonnyB in reply to Welshlasscerys]

200 am and 200 pm.Was given 3 months worth from the hospital, then will be prescribed by gp.

I like you hope this medication is enough X

[Welshlasscerys]

Yes, will be the same for me! I know I pray it will be as well! 🙏🏻Good luck ❤️ It nice having this group and speaking to people who are going through the same situation

[HelenL75]

Hello, as everyone has said it can take a while to work for me it was a few months and then they tweaked things with other drugs, I was relieved to get diagnosed and not being known for my patience 🙄 wanted everything to work straight off

Keep the faith we’re all different and they will need to try different things but you have people here who will have good advice and have been through or are experiencing the same so I found that really helped especially at the start

Take Kevin’s advice and keep a daily diary of symptoms and how you feel I did this at the start on lupus nurses advice (you can print diary pages off the lupus UK website) and it helped monitor how I felt but how things like food, stress or activity affect you when at the start you probably don’t realise they do

Good luck

Hx

[Welshlasscerys in reply to HelenL75]

Thank you Helen, I will take it on board! Yes- it really is nice having the support and advice from others! Thanks again for taking the time to reply

[Susieliz39]

Hi WelshlasscerysI was diagnosed with Lupus just over 10 years ago with the same symptoms as you, primarily fatigue and joint pain. My symptoms until recently have been managed well on hydroxychloroquine with periods of chest infections and flu like flares. I’ve worked full time and had an active social life too, although I have had to adapt and accept that I can’t do all that I used to before I had Lupus. However, that takes time and adjustment to get your head around but for the most part, I usually just cut my losses and put my feet up now when I need to.

This site is a wealth of information from lovely people who have been there and worn the tshirt. I only wish I’d found it sooner as I may not be in the place I am at the minute. Unfortunately my symptoms have worsened to the extent that I have lung involvement as a consequence of Lupus and need the ‘strong stuff’ to try to get the inflammation under control. As others have said on here, hydroxy seems to be the starter drug for Lupus, with others added in as needed. I wish I’d had others added in sooner, then maybe I wouldn’t need such drastic treatment now! But hey ho, hindsight is a wonderful thing.

I wish you well on your treatment plan, it worked for me for over 10 years, just give it time to kick in.

Take care and Best wishes Sue x

[Welshlasscerys in reply to Susieliz39]

Thank you Sue! That’s such a shame that treatment couldn’t have been intervened sooner for you sorry to hear that! I hope you can get it under control! Thanks for your reply and good luck to you xx

[Susieliz39 in reply to Welshlasscerys]

And to you too. Keep us posted, it’s good to hear how everyone is doing on their Lupus journey. Happy New Year..... it can only get better! X

[Welshlasscerys in reply to Susieliz39]

Will do 🙏🏻 And you! Thanks ❤️

[Jmiller623]

Hi Welsh. Haven’t read all the responses on here. HCQ takes a few months 2-3 to have any noticeable effect. I found the most notable effects around 6 mos - mostly skin, hair, joint pain. Optimal peak effects came around 9 mos. It hasn’t taken everything away esp my nerve stuff but has made it better if only minimally. You have to give it a good go for at least 6 mos before writing it off. I hope it provides you with some relief. ❤️xx

[Welshlasscerys in reply to Jmiller623]

Yea it sure has!! Thanks so much 🥰

[Janet-Haslam]

Definitely takes a few months. I've been on 400mg for 2 years now. Swelling and fatigue much improved though I still have flares. I have one now where feet too painful to walk on but I know it will pass 😀 Hope you find hydroxychloroquine successful for your symptoms too.

[Welshlasscerys in reply to Janet-Haslam]

Thanks for the reply that’s great! Good luck to you too xxx