I wonder if any of you on the above have had any eye problems as a side effect? The thoughts of it are rather scary.
I've now been on this drug for4 months and it seems to have succeeded in stopping the excrutiatingly painful night-time attacks of inflammatory arthritis / Palindromic Rheumatism now . I've had 9 to date and It was like Chinese torture and before being given this drug I was on the phone to out of hours doctors in sheer despair doubled up in pain in my hands - as though they were being injected with burning oil!
I had the first attack a year ago in many joints (about 8 weeks after accidentally inhaling Bifenthrin pesticide - Multirose spray which has now been withdrawn from sale!) This all came on very suddenly (age 61) and a big shock as I am fit and play tennis often.
It is good to feel 'normal' again although my knee is a bit twingey and I am wondering whether it is the RA or a sprain. i.e. does the drug just subdue the inflammation but not the joint problems? Foot joint also swollen but not painful now
How long is Plaquenil likely to work for?.
Also, some readers might be interested to look up the NICE guidelines on RA after reading some of your blogs - this lays out what you should expect from your medical team.
Unfortunately there does not appear to be a help group or a Rheumy nurse to contact here in West Sussex as far as I know. I don't want to keep worrying my GP and she admits she does now know everything versus the Consultant who of course you only get to see every few months.
Any feedback much appreciated
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Zena
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Hi Zena, I also live in Fitflops and also invested in the Fitflop boots for winter months. The only shoes I can get on for the last 2 years ! This summer I also sent for a pair of Trimsoles (very similar to fitflops but half the price) and I have found these to be just as good. I suffer badly from swollen feet also and my hubby has adapted my fitflops by cutting the inside join and attaching a ribbon which I let in and out as the feet require. It works a dream for anyone in a similar position to me.
Hi, Zena,
I have been taking plaquenil / hydroxychloroquine for a few years with no problems. I, too, was anxious about the eye involvements so I had a couple of eye tests and talked to the optician. I was reassured that eye complications are unlikely. But I am meticulous in remembering to get my eye tests regularly.
re: Fitflops. I am an addict. I have got more pairs than I could ever admit to. I especially love the furry lined boots. My oldest ones are now my house slippers. So comfy and warm when my circulation starts to pack up on cold days.
going back to the question about eyes.... a yearly exam with a retinal photo is the best way of checking/ looking for any changes.. boots and kodak express do retinal photo option usually £10 good for piece of mind
Alison x
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thanks Alison, didn't know that, worth every penny
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thats on top of the eye test!!. I had a voucher for a £5 eye test(normal one at boots) so for £15.00 pounds I had full eye test and retinal photo.. be aware normal eye test about £20.00 so without a voucher/ or special offer the eye test and retinal photo would be about £30
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Wow, we have free eye tests in Scotland, I assumed you were the same in England!
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patients in uk pay for eye tests pay unless under 16 or over 60.. exempt cases are people over forty with family history of gluacoma or diabetes
have no info on how long it might work.. its individual.. would say possibly 2-10 years provided no complications. ie. in terms of alteration of eye function/ macular structure. if it suits you carry on as long as possible! x
I am on plaquinil about 3 years and had my eyes checked, the eye specialist said it was a risk yes, but he had never seen any adverse side effect and had checked many people over the years.
I wore Fitt flopps in the first summer after diagnosis, and still do some times, but after the first summer the podiatrist said they were not doing my feet much good in long run, and that when winter comes in, they are inundated with people who have not been wearing theit orthotics during the summer. Still they are Grrreat!
"Also, some readers might be interested to look up the NICE guidelines on RA after reading some of your blogs - this lays out what you should expect from your medical team"
The NICE guidelines are purely that ... guidelines, and nothing more! NICE are an independent body made up of a wide variety of professional and lay members. Their guidelines are NOT MANDATORY but provide only a basis from which practitioners may work. At the end of the day a rheumatologist will always put their patients particular needs first, and in the case of RA one size does NOT fit all!
Hi - I read an article somehwere on the web that if Plaquenil is at dosage 2 tablets a day then there is a small risk of eye damage, but when the dosage is stablised at 1 tablet a day then it is virtually eliminated. Can't remember the source of this info.
Hi Zena, I was on Hydroxychlorquinn(don't know if that is spelt right) for 6 months - it had absolutely no effect on the RA at all with me but did give me changes on the retina which my optician picked up and referred me to the eye specialist at the hospital. He had a look at the little spots (only way to describe them) onthe retina, asked if I was still taking the Hydrox etc but by then I had stopped taking it as it didn't work for me. He did advise me that now I had stopped taking it the eyes would settle again and by the time of my next eye test a year later, there was no sign of the spots on the retina.
Hello everyone and thank you for all your feedback.
Re the eye tests, yes I've had my retina checked - and for free - as a) both parents had Glaucoma b) Over 60.
Sorry to hear (Lavender Lady) that Plaquenil did not work for you as it does seem to be the DMARD with the least side effects. It does take 8 - 12 weeks to start working but obviously it didn't for you.
My Rh.Doc said he might reduce the dose to 1 per day when I go back in October to see him. Meanwhile most symptoms have ceased apart from clicking tendons in my right arm/knee and a swollen right foot joint - but no pain.
Have any of you had itchy arms? One side effect is rashes but the Rh.Doc said if it was the side effect causing this then I would have it all over? I've been scratching them a lot and they sometimes bleed. I didn't have this before starting the Plaquenil.
Perhaps I should ask another new question but I'd also be interested to know people's experiences if they've got a high Anti CCP Antibody blood test as mine is 223. (Also positive Rh.Factor)
Hi Zena, I've Not had itchy arms but perhaps you could use an antiseptic cream to soothe the skin? Do you have dry skin? If so, you can get some very good creams which have uric acid in and which promote moisture into the skin. Your GP/chemist can advise on that.
Don't know whether there is a connection between Rh. Factor and Anti CCP antibodies. Your GP will be able to let you know if there is. When first diagnosed my ESR was off the scale and my CRP was extremely high and I was put onto dripped steroids for 4 days in hospital to bring the reaction down.
I do have a clicking tendon behind my right knee which is a nuisance and can be painful but I usually find it goes when I straighten out my leg (as it I have cramp). The swollen joints in the foot are more likely to be the RA - it does affect ankle and foot joints - my ankles flare up occasionally and I can never understand why the rheumy clinic does not measure the activity in the feet. It is as if rheumy does not affect feet when we all know it does and can be very painful when walking etc or finding comfortable shoes.
Many thanks. Reading your blog on another question, it sounds as if you have it really bad. Did it come on suddenly?
yes my feet can be bad and I get carmps in calfs because I cant bend toes on either foot,
I have heard that there can be some reversibiltiy from eye side efffects from hydroxychloroquine.. but its not always reversable. so regular monitoring v important... I wont take it personally as I have retinal pigmentation already.. quite close to the macular area.. so if that area got bigger, or moved the result would be very undesirable sight wise for me!
Im lucky at the momemt I have 5/6 and 6/6 vision.. England does not use the 20/20 system that every one quotes that is an American system.
Anti Histamine... these are available in tablet./ cream ..skin allergies itching/ OR rash are recognised side effects of hydroxychloroquine
The royal college of opthamologists review guidelines on screening 2009
states regular sceening of eyes should take place and if visual acuity changes
or vision become blurred...Drs advice should be sought when using chloroquine salts
I was taken off hydroxychloroquine earlier this year as i developed a severe rash and my arms were on fire, within in days of stopping it stopped but i siezed up so i restarted them adn felt better but the burning started immediately so stopped again. One good thing is it cleared up my hayfever ,well at least uptil now..
Thanks Mark, that is interesting. I didn't see the Consultant last time, but one of his team who is a GP too. Seems he had not come across it but will see how it goes and then ask the Consultant next time (if I get to see him!) That's why this site is so helpful and we can exchange experiences for real.
How are you coping with things now then without Plaquenil?
To be honest its becoming a struggle, trouble is you don't know what is causing what, is it just coincidence. I stopped the Plaquenil Christmas and i noticed straight away that my improvements stopped and the started going backwards, then i made a slight improvement the i have been then more or less same since about April.
I forgot to say before, but your the first person i have heard of apart from me who had palindromic arthritis, i had it for about 5 years then bang full blown RA and all i did was wrench my knee..
Hi Mark, Interesting your comment about Palindromic Rheumatism - as you say - it seems little spoken of. Internet says that 50% of people who have this go on to get full RA. Have you had an Anti-CCP Antibody blood test? I would assume so. If so, what is your score?
My Pal.Rh. attacks were getting more and more frequent - every 10 days or so - it was like Chinese torture - no exaggeration - so I had to make the decision to try Plaquenil which seems to have stopped the attacks after 6 weeks or so of taking it. Knees a bit weak and right hand gets numb but not half as bad as it was. Also tendons click a lot. Just hoping it will work long term.
Mine all started 8 weeks after accidentally inhaling some Multirose spray - containing Bifenthrin which is not licensed for sale now. Within 2 hours I had nasty tasting phlegm and chronic cough which turned out to be (after Xray) partially collapsed lung and late onset asthma as a result (non-smoker) and then this - coincidence or what?!
At least I have retired now so don't have to worry about work, poor you.
My Blood scores were very high. Not sure what they are now, I have my bloods taken at the trials and they very rarely tell me anymore but to be honest i know they are high without being told, you can fell it. I to get the clicking tendons , its a weird sensation as if my joints out of place and you need to crack it back and its painful.The worst place i found for my Pal RA attacks were my shoulders which were frequent but without warning and always at night and i could not sleep would the whole night sitting downstairs , it was as if all my weight was on my shoulders but when i sat up it took it off somewhat, i spent a month like that, thats when they diagnosed it was now full blown RA..
mark.. I had problems with a few of the meds.. we have no money for ant tnf.. were I am, so Im on the old gold injections.. think im physically having less side effects.( still early days though!). but they have found undesirable things in my urine.. bloods okish at moment.... think side effects are so individual.. your trial sounding disappointing.. are you getting the simponi. or the placebo?? by definition.. trials usually have a placebo.?, unless they are running a comparision trial ie .comparing two drugs?? xx
The trial i'm on is Simponi / Golumumab but there is no placebo involved. Almost ayear ago i was given the 3 choices by my conultant who luckily for me is the head of the trials unit in my area , 1, stay on the drugs that i was on at the time (Arcoxia- Hydroxycloroquine- MTX 20mg - folic acid) which would result in been unable to work in 5 years or go for Anti-TNF or a trial which would be quicker to start, i did start the Anti-TNF route as to get on a trial you have to meet certian criterias which i did with room to spare, the other choice was as you said Anti-TNF or Placebo which i declined. I have to say my consultant and his staff are excellent , the whole setup is first class. My Trial finishes next month and i understand i will be put on another Anti-TNF.
Best wishes
Mark
sounds good Mark.. great opportunity!!. do you know wether you are sero postive. or negative?? and is your RA v aggressive?..showing joint damage/ deformity?.. and did the simponi help with any fatigue issues?
I don't know if i'm sero positive or negative, i am told my RA is very aggressive, not showing joint deformity (yet) but i would guess theres damage, i have trouble with my shoulders, elbows knees and ankles , the simponi did help with my fatigue, before i started on it i only had to sit down and i fell asleep,which when your at work is not good, as i said earlier it has stopped working or possibley not as well for me, i was asked if i wished to stop the trial or carry on , i thought i maybe worse without it..
As bad as my RA is i am determined to carry on working as long as possible, i actually do 2 jobs , a daytime on and one in the evening which invovles some walking but luckily not to much, but i must admit i am shattered when i finish, but i need to make a living so needs must and i do get some help from time to time which helps.I still find it hard to believe how this desease can alter ones life so much, it just wrecks and mine happened over night.
I've been on Plaquenil for nearly 2 years and have had no eye problems.
My optician was very reassuring, and said that on the doses issued for RA (I'm on 2x 200mg a day) there was only a tiny risk.
He said the risk really relates back to the time when it was used for Malaria, and people had to take higher and higher doses to maintain its effectiveness.
I have my eye tests at Specsavers and I believe they routinely take retina photos for over 40's included in the eye test price - they made a big thing of this last year when comparing other opticians charges.
I'm 38 but as soon as I mentioned Plaquenil, the optician added a note to my files to say I should have a retina photo included in all eye tests.
Sadly someone I met who also has RA was put off trying Plaquenil because the consultant said "it could make you go blind".
I wish medical professionals would give accurate data so people can make informed decisions.
Thanks for the info. I think I had drops for the test which makes it difficult to see especially in bright light for two hours. In fact please note everyone - you are not supposed to drive for two hours afterwards. I went shopping with dark glasses on! (Any excuse!) Otherwise you need to get a lift.
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