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View Full Version : News of import - to me at least - Plaquenil!



KCat
08-26-2011, 09:03 AM
This is brief because classes started this week and I'm already worn out.

Spent 6 hours out for the specialist eye doc appt. on Monday. The short version (the long version is much more fun) is that I do NOT have to quit taking plaquenil. I am very very very very happy. The eye doc was surprised after having looked at my eyes and thinking she too saw a problem. The mfERG revealed otherwise however and she called me personally to tell me all was good.

So - no med change.

Took me up until yesterday to recover from all the exposure of that day but it was well worth it. I guess I'm not quite recovered. I'm still sleeping a lot. But at least the fever and headache are gone.

So happy. The idea of having to go off a drug that has kept me stable for 11 years was really scary.

K

debbie-b
08-26-2011, 09:32 AM
That is good news.
Doctor visits always wear me out too. Isn't it crazy that you needed four days to recover from a doctor visit.
Healthy people could never understand that.
Feel better and get as much rest as possible.

Debbie

Gizmo
08-26-2011, 09:53 AM
So happy for you! Maybe I'll ask about that test, since I just went off Plaquinil because of the same kinds of concerns.

KCat
08-26-2011, 11:42 AM
Gizmo - I've posted about that elsewhere on the board. It's much much more reliable than the visual capabilities of the vitreo-retinal specialist. She told me that she saw hyperpigmetation of the macula and suspected I'd come off the drug and started preparing me for that. Told me that my rheumatologist "had alternatives for treatment" and basically gently tried to ease me into the idea. But she followed it up with, "but the mfERG will verify this and will show whether or not your cones are actually healthy or not." This is what they need to know. Not just whether there is extra pigment in the macula which can be caused by any number of things, some bad, some totally innocuous.

My mfERG was "Absolutely perfect!" and she was so pleased it was like she could barely contain her enthusiasm over the phone. Needless to say, it still makes me a little emotional. I'd been fretting over this for a couple of months and this drug has kept me out of a lot of trouble with minimal side effects for so long that the idea of having to go to stronger meds was just putting enormous pressure on me at the same time I'm trying to finish my degree (thesis next year). I highly recommend finding someone in your general area who can do this test. I will ask a friend of mine if he knows the CO landscape in that regard. A lot of rheumatologists and optometrists are still very much unaware of this procedure. It's quite new for plaquenil toxicity but has been found highly reliable - in fact, much more reliable at detecting early damage than standard tests.

well, when things settle down after the first couple of weeks of class I'll compose a more in-depth explanation of the test (in layman terms) as well as any thing else I can think of that would help re: plaquenil and post it here.

tgal
08-26-2011, 05:01 PM
Gizmo - I've posted about that elsewhere on the board. It's much much more reliable than the visual capabilities of the vitreo-retinal specialist. She told me that she saw hyperpigmetation of the macula and suspected I'd come off the drug and started preparing me for that. Told me that my rheumatologist "had alternatives for treatment" and basically gently tried to ease me into the idea. But she followed it up with, "but the mfERG will verify this and will show whether or not your cones are actually healthy or not." This is what they need to know. Not just whether there is extra pigment in the macula which can be caused by any number of things, some bad, some totally innocuous.

My mfERG was "Absolutely perfect!" and she was so pleased it was like she could barely contain her enthusiasm over the phone. Needless to say, it still makes me a little emotional. I'd been fretting over this for a couple of months and this drug has kept me out of a lot of trouble with minimal side effects for so long that the idea of having to go to stronger meds was just putting enormous pressure on me at the same time I'm trying to finish my degree (thesis next year). I highly recommend finding someone in your general area who can do this test. I will ask a friend of mine if he knows the CO landscape in that regard. A lot of rheumatologists and optometrists are still very much unaware of this procedure. It's quite new for plaquenil toxicity but has been found highly reliable - in fact, much more reliable at detecting early damage than standard tests.

well, when things settle down after the first couple of weeks of class I'll compose a more in-depth explanation of the test (in layman terms) as well as any thing else I can think of that would help re: plaquenil and post it here.

So glad you get to stay on the plaquenil! It takes forever to start working but I fall apart when I stop taking! I am glad you have the stress of worry out of your life!

n.mac
08-26-2011, 07:09 PM
Serves as a good reminder to all of us on plaquenol to have our eyes checked regularly!

bunny28
08-27-2011, 05:18 AM
Hooray for you! So glad you get to stay on plaquinil!

magistramarla
08-27-2011, 04:05 PM
I'm glad that you get to stay on Plaquenil. I'm like Mari, I would be lost without it.
I'll be watching for your explanation of the test. I want to ask my ophthalmologist about it.
He's very insistent that I see him every six months, but I don't think that he's mentioned this kind of test.
Hugs,
Marla

steve.b
08-27-2011, 08:02 PM
i am also very happy you can keep plaquinel.
i am a different person because of it.

KCat
08-28-2011, 11:29 AM
So glad you get to stay on the plaquenil! It takes forever to start working but I fall apart when I stop taking! I am glad you have the stress of worry out of your life!

It's a med that really sneaks up on you, isn't it? For me I really didn't realize how much good it was doing until I started waking up in the mornings and thinking - hm. my hips aren't killing me. Things like that just started one by one getting better. So it's huge to be able to keep it.

tgal
08-28-2011, 11:50 AM
It's a med that really sneaks up on you, isn't it? For me I really didn't realize how much good it was doing until I started waking up in the mornings and thinking - hm. my hips aren't killing me. Things like that just started one by one getting better. So it's huge to be able to keep it.

I agree completely! I really never knew how much they helped until I copped an attitude (or as I say in... copped a tude) and stopped taking it. 2 weeks later I started it again but I still have not returned to "pre tude" place and that was months and months ago!

KCat
08-28-2011, 01:23 PM
I agree completely! I really never knew how much they helped until I copped an attitude (or as I say in... copped a tude) and stopped taking it. 2 weeks later I started it again but I still have not returned to "pre tude" place and that was months and months ago!

Oh yeah. "I'm not sick. I don't need this. It's not doing anything for me."

Six days later. "ow ow ow ow...."

Dumb move. Did it twice at that. But in one case I just ran out and thought I could manage because I convinced myself the first time was a fluke caused by a sort of reverse "placebo effect."

tgal
08-28-2011, 02:31 PM
Oh yeah. "I'm not sick. I don't need this. It's not doing anything for me."

Six days later. "ow ow ow ow...."

Dumb move. Did it twice at that. But in one case I just ran out and thought I could manage because I convinced myself the first time was a fluke caused by a sort of reverse "placebo effect."

LOL No, actually worse then that. I guess it was longer then that. I have been out of work for almost 2 years. Time flies ya know...

Anyway, The doctors wouldn't diagnose me. They gave me SCLE lupus and seizures but they said the seizures didn't have anything to do with the lupus. It was simply a freak accident. They all agreed that I had all the symptoms, one even said "Classic Lupus" but none would give me the diagnosis because of my blood work. Well, they wanted to see the blood work then I was going to GIVE it to them. Stopped taking my plaquenil and within two weeks I was so sick that I decided that was the wrong move. It didn't occur to me that the plaquenil was doing so much until they were not working!

Moral of this story to all of you just getting on plaquenil... it really does more then you think!

KCat
08-28-2011, 03:35 PM
LOL No, actually worse then that. I guess it was longer then that. I have been out of work for almost 2 years. Time flies ya know...

Anyway, The doctors wouldn't diagnose me. They gave me SCLE lupus and seizures but they said the seizures didn't have anything to do with the lupus. It was simply a freak accident. They all agreed that I had all the symptoms, one even said "Classic Lupus" but none would give me the diagnosis because of my blood work. Well, they wanted to see the blood work then I was going to GIVE it to them. Stopped taking my plaquenil and within two weeks I was so sick that I decided that was the wrong move. It didn't occur to me that the plaquenil was doing so much until they were not working!

Moral of this story to all of you just getting on plaquenil... it really does more then you think!

Sing it! If you (generic you) can take it (I know not everyone can though it's one of the milder drugs in general) than do give it time. I noticed improvement in my headaches in three weeks but thought it was just me and wishful thinking. But the real changes, the reduced joint pain, the waking up without hip pain, my hands and feet no longer burning, no more edema, etc. were about four months in when I noticed them. They probably changed before then but it was that slow dawning and bit-by-bit change. And there are still break-through flares but without it things would be so much worse.