[mammer]

Doc took me off plaquenil, cause it damages the eyes. Now on 5 mg of prednisone 1 time a day. Just wondered what to do now.
just found out about 4 weeks ago I might have lupus, Or a uctd. Another point of confusion, lol. Has anyone's eyes been damaged because of plaquenil? I'm legally blind in one eye, Can see but not like normal. Thanks for all the support lately.

 

[Clare.T]

Hello Mammer
I need to say that eye damage from Plaquenil is very rare indeed and frequent eye tests can detect it happening before it has actually damaged the sight and is reversible on stopping the drug. But when there are existing problems with sight it might be contraindicated and many physicians would be unwilling to take the slightest risk in a situation like yours.

The alternative anti malarial is called Quinacrine in the USA and Mepacrine in the UK.
I have read that there is only one recorded instance when it might have affected the eyes and that case could not be certainly attributed to the Quinacrine. This antimalarial isn't used these days but thousands of people have taken it over the years as antimalarial prophylaxis and for connective tissue disease.
So that is a possible alternative.

Otherwise you might want to consider a disease modifying steroid sparing drug like Imuran/ azathioprine or methotrexate. These days doctors want people on as low a dose of Prednisone for as short a time as possible considering the very wide range of serious side effects that this drug causes long term.
Depending how lupus affects you and your doctor's prescribing practices and judgment of your case Cellcept might be an option too.

All the best
Clare

 

[mammer]

Thanks Clare! I geuss I need to read more on these drugs. But it gets to be to much to take in sometimes.

 

[greenhaggis]

Mammer,

Was it your GP that took you off Plaquenil? Obviously I'm no expert, but I do have eye problems and had those before starting Plaquenil. I have porblems with pressures and dry eyes! I'm still able to use Plaquenil!

Has your good eye got any signs of damage, or is it just as good as anybodies good eye? How did you lose the sight of your other eye?
Do you regulary see an eye specialist if not I would see one for there opinion as I know sometimes GP are over cautious due to lack to knowledge in specialist areas!

Sorry if I'm spouting off a bit, but I do think you need more advice from the experts (not GP) regarding your eye problems and what course of treatment is best for them and the Lupus or uctd!

Take care and let us know how things go!

Lesley

 

[Clare.T]

No problems!

One of the great things about a forum is that you can access information from knowledgable people without having to spend an age ploughing through it all yourself because that has been done for you, predigested I call it.

I wasn't criticising your doctor's advice but I had to mention how rare eye damage is because a lot of newcomers get or pick up misinformation about Plaquenil eye toxicity and we don't want people unnecessarily scared about a most useful and beneficial drug with virtually no side effects, for the most part. It isn't right for everybody though
As to whether you have lupus or UCTD it really is a technical difference. The main thing is that you have been diagnosed with an autoimmune connective tissue disease. UCTD usually means there are no specific signs of any particular CTD; in the case of lupus it means no anti ds DNA or anti Sm and no lupus specific skin or kidney problems. I am sure that many doctors diagnose lupus rather than UCTD.
From the insurance point of view it is much better to have an UCTD diagnosis. Insurance companies run a mile when they hear SLE because they assume it is always the more serious 'risky' forms. Whereas in fact a person with UCTD could be much iller than a person not badly affected but with an SLE diagnosis label on them. Most people with UCTD stay in that category, but in others specific features of another disease will develop. Treatment is the same whatever the name.

Good luck
Clare

 

[mammer]

OMG Clare, Thank you for all the very helpful thoughts. Left eye has been messed up since birth, i have peripheral vision and amblyopia. Sorry about the spelling. The rhemie told me to stop plaqinel, fine with me. I'm hanging in there for now, i'm able to move and undress more than i have since November. So i geuss thats a great thing. Waiting to hear on blood work again, should hear this week. I'm having dry eyes and mouth, have to always have water with me, Doc's at hosp said probably sjorgen's. Told rheumy and she just said oh yea, well we treating you so it doesn't matter. Kind of got mad at that.