Scared ...

[jennyall12]

Has anyone not been able to continue taking plaqunil due to some side effects and had to go off of it? I am SO upset. I am unable to be on it after years ... I am so depressed with this disease,

[Su1112]

I'm so sorry to hear this!! I swear this disease imprisons us all. It hasn't happened to me so far... but I think I've heard of it happening before.

What are they going to do now? Are they going to have to but you on steroids, or a cocktail of different medications?

I'll be praying they figure this all out for you. Try not to let depression win... I know how hard that is. But remember you are a victor! Anyone who lives with this disease is a warrior... and that's a fact. God bless, and sending prayers your way!

[chrisj]

Hi Jenny - My rheumatologist reduced my lupus pill (hydroxy) to one a day a couple of years ago, mainly because he was concerned about the effect on my eyes according to government guidelines. I was apprehensive about it but its been fine so far..

Have they suggested other medication for you???

[nonny]

Really sorry to hear you are having problems taking Plaquenil. I don't know what side effects you are suffering but I have been struggling to get my digestive system to tolerate Plaquenil for the last 2 years after taking it for 15 yrs without any problem at all.

When I first started taking it I had such a good response, within days rashes disappeared and I began to regain mobility both of which stayed until my problems occurred. All the other stuff, nose and mouth ulcers and flare ups have all returned. When I last saw Professor Khamashta, just before he left, he advised me to take it after my evening meal even though I take stuff to protect my stomach at that time and on and off I have been able to go on tolerating it. I am now gluten,lactose and FODMAP free and I believe it is all worth it in order to go on tolerating the plaquenil even if it's only twice a week sometimes.

I hope you find a solution that suits you maybe if you let your consultant know how you are feeling about it you can work together to find a way around it.

[Hidden]

I had a slow form of anaphylaxis (hives and then mouth and tongue swelling) so had to come off it after 18 good months. I'm now doing fine on Mycophenolate🤞

[CaliforniaGail]

Plaquenil was great (no more stiffness and aches) and worked for me for over 5 years. (Diagnosed APS 2010, UCTD around 2012 when joints were getting painful, Lupus officially 2016 when DNA double strand test became positive during the worse flare I've experienced up to that time.)

I knew about the Plaquenil 400 mg daily "safe" limit (I was taking 400), but did NOT know about there being a "cumulative toxic limit" which the opthamologist said I was just hitting. I had lots of questions for her due to this group's postings about Plaquenil and eye problems (Thank You All !!) -- but I didn't need to ask her since she started the appt by saying my annual tests show a field of vision decline and her examination showed "worrisome" eye changes that corresponded to the tests. Also now I have a cataract; no doubt egged on with steroid use (I'm 63). She contacted my Rheummy and I was told to immediately stop the Plaquenil. This was about a month ago -- I'm due to repeat the tests and see her in August. I haven't felt much different without Plaquenil except it's the first time I'm getting rashes on arms and legs. But it's difficult to say any other symptom changes since the past 2 months I've been tapering from 60mg prednisone to currently 20mg (roller coaster withdrawal time) and have had 2 rituxan infusions 4/21 and 5/5 (in order to stop Lupus from attacking lungs and reduce my long term/high dose steroid.) Myco did not work for me.

I don't know your side effects, but if the doc took you off there's good reason. It's hard enough to keep a positive attitude when thinking of our Lupus symptoms, and in my case, risk of death from Lupus attacking lungs, BUT the thought of losing my eyesight definitely gave me something else to think about !! My main activity these days to find joy in the moment is sitting in the garden with my morning coffee, listening to the birds and looking at the details of flowers and the world around me. To risk eyesight - nooooo !! Take every precaution. I know you'll find something to manage your symptoms without Plaquenil.

When I researched years ago the benefits/risks, the issue of eye damage was that it's a "rare" side effect, but I'm getting very skeptical of what they've told us and how many people it has actually affected. For those taking it a long time, like for 10-15 years, it's great you've done OK, but you may be a minority (I know 70+ year old lifetime smokers who haven't had any issues either) -- my skepticism is reinforced with the fact that I hit the cumulative total at about 5 years and I've already had changes in my eyes.

Also I read years ago that with Plaquenil's risks, you need the annual exams, and to stop taking it if there are changes -- and then the damage reverses. That sounded fine with me but now it doesn't seem to be true. I've read that it may reverse-- or may not reverse -- or the damage may PROGRESS up to 5 years after stopping the drug due to the half life of Plaquenil in your body.

So now I wait. My fingers are crossed that the next eye appt will explain more and show very little eye damage, and that Rituxan will cover any symptoms from my loss of taking Plaquenil. I know, it gets so tiring to manage our disease!! Try to think of the things you're grateful for to keep your spirits up... I'm glad I can see