Seeing my rheumy today who may prescribe Plaquinel. What to expect?

[Bonnie39]

Hi all,

Like so many of us I've had a long journey to dx. 9 years and many consultants to be precise!

I am seeing the rheumy today and finally she said she is happy to give me a trial on Plaquinel to add to my warfarin. I know enough that I should insist on the brand name, and that the ininitial propsed 3 month trial is unlikely to be long enough.

Should I expect an opthalmology appointment prior to gettibg a script or anything else?

[MaryF Administrator]

Hi, I just take my daughter to the local opticians, (high street main one), I did this prior to her starting, and every 10 months or so since. It is slow to start working, but it has made a huge difference to her. I can't tolerate Plaquenil, I had a serious allergy to it, but that is probably down to my over active immune system and in particular Psoriatic Arthropathy. I wish you all the best with your new regime. I am sure it will help you. MaryF

[Bonnie39]

Thank you Mary. Is a regular opticians qualified to check for this? I was wondering if it was something I needed to get done at the hospital?

[Lure2]

May I suggest you see an ophtalmologist. I have like you had blepharitis also. An optician is not qualified enough for this illness.

Best wishes from Kerstin

[Manofmendip in reply to Lure2]

Hi Kerstin.

I have it too and have been to an opthamologist.

Dave

[Lure2 in reply to Manofmendip]

Hi Dave, Sorry to hear that.

I have it inside (inner eye) also. Not so bad because I use Ficortril 0,5 % every 3 day around the eyes for some minuters. Then I take tops and rub around the eyes just very delicate.

This eye-doctor thinks I have SLE also. He is so interested in me as it is very unusual. He says that SLE can come after APS. New research he says. He handed me a paper and wanted me to ask my APS-doctor if I had SLE.

I use drops for dry eyes also but I do not know if I have dry eyes the Schirmers test show the opposite!? It is not so bad when you do those things.

My eyes have really been affected in different ways by this illness.

Best wishes from Kerstin

[Manofmendip in reply to Lure2]

Thanks Kerstin.

I was getting pain in my left eye on waking. I now use a hot flannel on my closed eyes every morning and viscotears as necessary.

Dave x

[Bonnie39]

Thanks Kerstin. That is what I supposed. I asked the rheumy and she said see my usual high street optician and explain what I have and what I will be taking it for. Not 100% convinced of this. Although am hoping that an optician will refer me back to the hospital if needed.

[Hidden]

I am in the same position as you Bonnie.

I saw my Rheumy at the end of May and was told that I needed to have a blood test in order to guage the right dose to start me with. Having picked up my prescription on Wednesday, it said one a day for four weeks but as I hadn't heard from GP or rheumy I checked with GP unsure if that was my dose or the generic dose. She actually suggested getting a sight test (I didn't remember the rheumy saying that but my memory is still shocking!) so I am going to get them checked prior to starting the Hydro... meds so there is no ambiguity on how my eyesight is. Good luck, we'll bumble along together then!

[Bonnie39]

Thank you all. I had not specific blood tests prior to the prescription being given to me. She based the doseage on my weight.

I will collect the prescription today (hospital pharmacy closed by the time I came oht of my appointment! ). I will phone an opticians today and make an appointment for a check.

I was due back at the hospital today for another INR check today so don't mind the trip back to the hospital. Next step is to try and get them to agree to let me home test my INR as it has been very unstable despite no diet changes or anything for me.

I am feeling vert lucky to get this advice from you all. Thank you!

[farmerfester]

Hi as everyone says you will need regular Eyre tests particular field off vision my hospital eye clinic can't do this but my high street opticians can take care g

[Elaine77c]

I've been on it for about 3 months now. Before I started I had an eye test. My GP and the pharmacist they have at the surgery (not dispensing just advising them about prescriptions etc - which I think is an excellent idea) did some research about what sort of tests the optician should do along side the normal eye test. One was that the bouncing white dot test should be done with a red dot instead - don't ask me what that was testing but as Plaquenil can build up on the retina it must be to do with that - they wrote down exactly what they should do so I could give it to the optician (if you wanted a copy of that send me a private message and I'll copy it out word for word for you). The optician couldn't make the machine do the red dot so they had to do a different test with red lines instead. I have to have my eyes tested at least every 12 months when on it, the first test was the baseline before I started the drug.

With regard to the impact of the Plaquenil, I had a week where I didn' t have any at about the 2 month stage and boy did I feel it! My arthralgia got really nasty, I had shivers and it felt like I had a fever (I didn't take my temperature), I was also wiped out. As they had told me it would take 3-4 months to start working I really did not expect that! Anyway when got my supply (of Plaquenil - not generic) it got a bit better. Now at the 3 month mark - for me - I have much better energy levels which is worth the slight eye risk in itself as the fatigue is terrible without but it has not really had any impact on the arthralgia (but I have a feeling if I come off it again I would know the difference). Although I think everyone may react differently it has the potential to help symptoms - I've had no side-effects

[Bonnie39]

Thanks all. I will be phoning the opticians tomorrow and ask for advice. I will also see my (good) GP and ask if he will do a referral for me to the opthalmologist.

Unfortunately the hospital only dispense generic hydroxy. I tried to get my GP to call me about this but had no luck. I will chase him again and see what I can do, as I only have 3 weeks worth of hydroxy and will be away for a bit over the summer - don't want to run out whilst away. I am hopeful it will help!

[jetjetjet]

I see my eye Dc. every 6 months for now because of the hydroxy--

if my dosage is increased then so will my check ups --- Casey & i

[SteveRN]

Hi BonnieI do not know where you live but I go to a centre of eye care excellence which is linked to our local university. You are seen seen by an ophthalmology student and then double checked by their tutor the appointment sometimes lasts and hour and a half or more but the examination is very thorough and any issues are referred to our local eye specialists. It not only reassures patients but helps the students and they have all the up to date equipment to hand. Kind regards SteveRN