How good is Hydroxychloroquine, and any side effects?

[larsonsmum]

What are people's experiences of taking Hydroxychloroquine? It has been suggested I might begin taking this after my next visit to the Rheumatology Consultant, and he has given me a very brief leaflet on it to consider.

[Hidden]

Hi I have been taking hydroxy for a few years I found it took a bit off an edge of some of my symptoms primarily the joint pain. However it made my stomach and gut issues worse. All in was a good thing. Its effects took about 8 weeks to get in my system . Hope it helps you if you deside to take it.

Laura

[senorascully]

I have been taking this for years - just had my dose upped. Have found it does ease joint pain and has reduced my facial lesions.

Experienced nausea in first few weeks but soon eased.

If it keeps me off the steroids I'll carry on using it.

Debbie

[kb281 in reply to senorascully]

Hi Debbie

Does it help with fatigue?That's my main issue at the moment.

[chrisj in reply to kb281]

Yes it does. The main thing it helped for me was feeling tired all the time. I've been taking it for over 6 years. There are rare side effects on the eyes, I have a bit of double vision now and its been corrected with prism lenses in my glasses.

[senorascully]

It's hard to know if it helped with the fatigue - I still have problems with that.

Not sure if it would be so much worse without it though.

Sorry,not that helpful I know!!!!!!

Anything's worth a try.

Debbie

[marypw]

I've been taking hydroxychloroquine since last Autumn - dose increased to 400 mg per day in April. I think it helps me, but it can take 6 months to kick in. Still have to be really careful not to get over-tired. Can give you wind and stomach bloating. Definitely worth trying as baseline medication, as other drugs have a lot more side-effects. Hope that helps a bit! xx

[Djlr in reply to marypw]

Everyone we need to remember the new guidelines if we’re not back at seven and above we cannot take 400 mg of plaquenil.

Chances of our Paris feel vision going bad after seven or more years on plaquenil increases exponentially.

Guidelines put out by the ophthalmologist was in 2011.

lupus.org/resources/protect...

Please review this with your rheumatologist, not all of them are aware of the new guidelines.

I do know at least five people that have had toxicity and cannot take it anymore and also they have lost their peripheral vision.

It is best to stay on the correct dosage as indicated in the article posted above😐

My friends who cannot take it anymore are so upset that they let this happen and did not know this before 2011 because most of these occurred in the early to mid to 2000’s.

5.7 ‘ height and above 400 mg only

5 1/2 feet - 5.6 1/2 feet = 300 mg

5 .0’ and below equals 200 mg

I have to take 1/2 of a pill to make the 300 mg. Good luck to everyone we need our hearing, we need our eyesight, we have other things going bad we don’t need to make them worse 😳💜🙃

[Yols]

Hi, I have been taking hydroxycholoroquine for several years now. The dose has been increased to 400mg daily. I have not noticed any side effects at all. It is difficult to say whether the drug helps me as I still suffer with joint pain, fatigue etc. I guess maybe my issues would be worse without the drug? Who knows? All I can say is, give it a try. Good luck. :0)

[larsonsmum]

Thank you all for this information - really appreciate it.

Glad to hear it does seem to make a differnece for most of you.

I am a terribly 'anti-medication' person, and I cope reasonably with Diclofenac at the moment, so like the hip replacements I'm putting on hold, I think I may defer taking Hydroxychloroquine a bit yet

[chrisj in reply to larsonsmum]

Diclofenac gave me an ulcer. I ended up in hospital having major surgery to repair my gut so be careful..wouldnt touch the stuff now. The surgeon warned me against taking any antiflammatories ever again and so far I havent. No plans to either

[LaughItUp]

I've had a terrible experience with it. Extensive muscle wasting which eventually resulted in a weight loss of about 40% and three near death experiences in approx. 6 years. It's also very bad for your eyes in the long term.

[Jude65]

Hi,

The one thing that you have to be aware of is that in rare cases the drug can affect your eyes and eyesight. There seems to be a difference of opinion as to how often you should have your eyes checked but look on the instructions that come with the drugs and you will see what they recommend. Always tell the optician that you are on hydroxychloroquine.

My rheumatologist says that it is a safe drug and has lots of benefits. Adverse effects on the eyes is very rare if you are on a safe dose. A safe dose depends on your weight. If you are on 400mg ask if this is safe for you.

Cheers Judith

[StAndrews-Lupie]

Hiya Larsonsmum - Go for it! I have been on hydroxycholoquine following a successful reaction to steriod injections so started on a 6 month trial 200mg twice day and that was 3 years ago. It does take time for it to build up in your system so you wont notice much difference to begin with.Of all the drugs I am on I had relatively no side effects although its hard to work out whats causing what!- before I started I had a full eye check and also colour blind test and see my optician every 6 months to check eyes out although as others have mentioned it is very RARE. So far no problems at all....plus it meant no more steriods which is always good. I was advised to avoid long haul holidays where you would need to take different antimalarial drugs so if you love travel watch that one!. Word of warning though - really watch diclofenac - I was on it for more that 6 months straight from hospital and suffered terrible stomach problems - resulted in start of a stomach ulcer as you shouldnt be on it for any longer than 6 months - my pain clinci stopped me taking it and stomach problems eased within 2 weeks!! Best of luck

[larsonsmum]

Thanks StAndrews-Lupie, Jury still out on taking it, as there seem to be some terrible side-effects....for some people.

I take Omeprazole as a stomach protector with the Diclofenac, so haven't had any bother regarding stomach, but am familiar with how it can cause ulcers if you're not taking a proton pump inhibitor.

LaughItUp - I can see you've had a terrbile reaction with it - poor you

Jude65 - interesting to hear about the eye aspect of it - thanks.

[JJ37]

I was given it, after 35 days I developed a nasty rash all over my body, it got progressively worse over the period of about 5 days. I saw 2 gp's and they both said it was just an allergic reaction to something, I spoke to the the hospital they told me to stop taking it immediately and the rash went away slowly over 48-72 hours. It did worry me a bit, but it was only a rash at the end of the day.

I havent tried it again in fear of wasting another month trying a drug which doesnt take effect for 2-3 months.

I too take diclofenac with omeprazole.

I did speak to the nurse and say that I no longer wanted to try any new drugs after a couple of bad reactions, but she gave me strong words of warning. As my joints give way every now and again and I have pains in my hands, wrists, elbows, knees and ankles (not all the time), without medication to control it, it could result in permanent damage. This surprised me as no one had ever told me that before... So please check with your consultant by not taking anything that you are hindering your bodies recovery...

Take Care

JJ

[Paula1968]

Hi ,

I've been on Chloroquine on and off for many years now. I was diagnosed with Lupus in 1986!! It has helped me reduce the need for steriods and I havent noticed any side affects. I gree with the other comments of 'keep getting your eyes checked' and be careful with 'diclofenac', I too have manyt stomach problems now after a prolonged period on that particular drug.

Hope this helps.

[larsonsmum]

Thanks JJ37 & Paula1968

[NickyB]

Hi

I started Plaquenil in Feb. I'm anti meds but the time came to try improve quality of my life. The side effects in the 1st week were amplified fatigue & nausea for a good month. I kept taking them & now I don't have any side effects. My energy much better, no more daytime napping needed optition side the retina toxification is very rare. Especially on such a low dose.

[NickyB]

Sorry I forgot to mention I had some bloating & wind eating when taking them is a must. I feel very sick if I take alone

[larsonsmum]

Glad you persevered NickB, and that you found side effects lessened, and that they work well for you - thanks for that

[loops1983]

Ive been taking Hydroxychloroquine since december. As im not too good at taking tabs anyway Im trying to steer clear of steroids. So I tried this one I agree with mrschewie it SOMETIMES takes the edge off the pain but I get very nauseous and try to take after food (when I can eat). I still suffer from severe headache fatigue insomnia and back pain. Side effects: indigestion bloating stomach and gas.

Omprezole for me made this worse.

My consultant suggested increasing my dose but i couldnt face more side effects.

Though Im seeing him next month.

[nettie]

I too was taking HYDROX 400mg daily....I had very bad tinitus which resulted in poor sleep my consultant said it was NOT caused through taking Hydrox and refererd me to ENT....after 9months of test's...the cause of buzzing in my ear and light headedness was due to the dosage of Hdrox...once my dosage was dropped ....back to a blissful sleep pattern.

[nettie]

My lupus condition affects mainly my small joints ie. wrists hands elbows.. most recently i have been experiencing pebble like hardness in the ball's of both my feet and pain in the larger toes inflamation too.Can anyone relate to these symtoms please?

[Jude65 in reply to nettie]

Yes I can exactly relate to that. At one time I felt as though I was walking on marbles and I do find walking for long very painful. Its also difficult to find comfortable shoes. I haven't worn glamorous shoes for years - very frustrating when getting dressed up to go out.

[chrisj in reply to nettie]

Me too - I have the same problem, I cant walk barefoot round the house any more. Its so uncomfortable like there are hard pads where my soles used to be I have to wear shoes that are slightly too big and fashion is right out the window. Thank you for your post, I was beginning to think no one else had this problem...

[1happylady in reply to nettie]

Hello, I have been experiencing that pain (like I stepped on a golf ball) and aching in my ankles and have found out it is called plantar fasciitis. Since taking hydroxycloroquine for the passed 2 1/2 years it has almost completely gone. I was told to try to extend the lower leg muscles by standing on a slope and leaning forward slightly... But I think it was the medication that actually worked. Hope that helps x

[shaunalouise26 in reply to nettie]

Mortons neuroma. I get steroid injections in my foot foot for it. Also causes numb, pain and tingling in the toes. Usually affects the 3rd and 4th toe and we space.Pain in the sole of the foot like walking on rocks in your bare feet! Although not lupus related there do seem to be a lot of us with it so may be connective tissue related.

[larsonsmum]

nettie - my tinitus was worse when on the diclofenac, so I think many medications may cause this. Having said that it has never bothered me too much, but I'm stopped it just now, and tinitus gone.

I don't have true Lupus, as I have MCTD, Scleroderma, Raynaud's, Fibromyalgia & Oseoarthritis, but my Specialist Nurse, (who is called a Lupus Nurse, and deals with all soft tissue diseases), says 'it's as good as' as all the symptoms on all these 'overlap' diseases are the same.

Although the Fibromyalgia affects my entire body badly, I too have a lot of smaller joints affected as well, but it's not actually the joints as much as the tendons/muscles, etc, attaching them to bones which ache. The worst bit of my feet is the tops of my feet like a 'tennis elbow' feeling of burning/tearing and also where my 5 toes join my foot is more painful than my toes.

Likewise with my hands, it is the flesh in between my thumb and fingers which hurts the most.

[larsonsmum]

loops 1985 - thank you, I hope they find an alternative for you, as you could well do without side effects like that.

[Lyndsy3]

I've been taking it for over 7 years now, since I was diagnosed. Still have aches and pain and don't think it does anything to help the fatigue but apart from that I have had no bad side effects. Was disappointed to learn that because I take hydroxychloroquine I cant have laser eye surgery though, and my optician seems very wary of it.

[MaryHolder]

I took hydroxy and it nearly killed me - seriously, I ended up in intensive care with reaction called stevens-johnson syndrome over 98% of my body... am still trying to recover from it now and am very scarred on my skin..(it is like 3rd degree burns). Be careful taking anything and always read the leaflet - then, google it too as the manufacturers do not always put on their information leaflets all of the side effects

I am so lucky to have survived, so do be cautious..

[witch2]

After two weeks I had a skin reaction was covered in rashes and taken off

[HazelJ]

I was told by my specialist that Hydroxy is only for my Cutaneous Lupus "skin lupus" not for my SLE as I have both. Because I m older they are reluctant to give me anything that wipes out the immune system because it could leave me in a worst position. I dont feel things could get any worse. I wonder why our immunne systems want to attack us ? hazel

[chrisj in reply to HazelJ]

I take hydroxychloroquine for SLE, dont have the skin problems much, its in my system and the drug has helped...cause as yet unknown...maybe one day

[witch2]

like jj37 I had the same allergic reaction rashes all over my body after taking it for only 4 weeks. Once I stopped it took about 2 weeks for the rash to fully go

[larsonsmum]

Sorry, been on holiday for a week, so thanks to those who have added their experiences here, and they have just confirmed what I feel sure about - I don't want to take this! MaryHolder - that is an especially terrible experience you've had - so glad you did survive

[Georgea1211]

I've just recently started on hydrox and mine is for rheumatoid arthritis there is a quick what weight loss for me because I was full of Adema throughout my body and it's gone within a couple of days as far as the payments done nothing for that yet and I have been on prednisone for 6 months before this I was looking at every time I went to the doctors going up 2 pounds in weight I do feel better already and have a little more energy I am on 400 mg a day along with many other medications because I suffer from fibromyalgia so called diverticulitis emphysema Gerd went out and who knows what else is next that I've had that experiences with it so far

[Cruising2020]

Hi - I was on Hydrox for 20 years 400mg daily. I was weaned off it as told long term usage caused side effects. When I first started taking it,I did notice a difference in symptoms -however - I still found it difficult to cope with the fatigue and still had mouth ulcers, chest infections etc etc. I don’t know if those symptoms would have been worse if I didn’t take it. I also had my eyes tested every year. I’m now in remission 2&half years - still get the fatigue and joint aches - but now told ‘it’s my age’. (69) I do still attend yearly Lupus check-ups so have that as a safety net. To be honest, I think I can say it worked for me.

[SashaT64]

Been wondering about this myself too. Have been taking it since October last year. 200mg daily to start then upped in Jan to 400mg 3xweek and 200mg the other 4 days.

It is doing nothing for me. Symptoms are worst since starting - more inflammation and problems with hands, pain and inflammation in feet which I never had before and restless legs that just drive me nuts.

Rheumatologist in discussion 3 weeks ago said to continue because alternative are immunosuppressants which she doesn’t want me to start in current climate and hydroxycloroquine could also offer some protection v the virus (seems in doubt now on latest evidence).

Seriously considering stopping taking it to see if I feel better. Any thoughts from you more knowledgeable peeps please?

[SashaT64]

Anyone any thoughts?