plaquenil toxicity?

rere7896 · Posted: Mon Jun 30, 2008 8:37 am Post subject: plaquenil toxicity?

I was just curious about anyone else with SLE experiencing plaquenil toxicity? I had to get off of plaquenil b/c of damage to my eyes and was wondering if this has happened to anyone else and if so, what are you doing now?
Ever since I got off of it my pain has gone through the roof???? Thanks

Saysusie · Posted: Tue Jul 01, 2008 1:50 am Post subject:

Hi Rere7896:
Retinal toxicity from Plaquenil is of serious concern because even after cessation of the drug, there is little if any visual recovery, and sometimes a progression of visual loss over several years after the drug has been stopped. No medical therapy has proven effective in Plaquenil toxicity other than cessation of the drug. There may be a stage of very early functional loss where cessation of the drug will allow a reversal of the toxicity. Crying or Very sad

Peace and Blessings
Saysusie
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rere7896 · Posted: Tue Jul 01, 2008 9:54 am Post subject: thanks

I know - trust me about the vision changes - but I was wondering if anyone knew of a replacement for the plaquenil that worked as good as plaquenil?????

Saysusie · Posted: Tue Jul 01, 2008 11:24 am Post subject:

Plaquenil is Hydroxychloroquine. The only other similar drug is chloroquine. They are essentially the same, except that Hydroxychloroquine is much better tolerated. Chloroquine and hydroxychloroquine belong to the quinolone family. They are related drugs with different therapeutic and toxic doses with similar clinical indications for use and manifestations of retinal toxicity. Initially, they were for treating malaria, but now they are used by rheumatologists for treating rheumatoid arthritis, systemic/discoid lupus erythematosus, and other connective tissue disorders. Because their use has been expanded, this has resulted in prolonged duration of therapy and higher daily dosages leading to cumulative doses greater than those used in antimalarial therapy, thus the risk for toxicity.
If your doctor has taken you off of Plaquenil due to toxicity, I doubt very much if he will prescribe chloroquine. Perhaps you and he should discuss Prednisone and/or Methotrexate. There really is no drug that is used in place of Hydroxychloroquine. There are other drugs that may help the symptoms, but are much more potent that Hydroxychloroquine.

Peace and Blessings
Saysusie
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rere7896 · Posted: Wed Jul 02, 2008 4:58 am Post subject: thanks

I'm on prednisone and methotrexate didn't work -- thanks though.

Saysusie · Posted: Wed Jul 02, 2008 7:57 am Post subject:

Prednisone and Methotrexate are the standard and first line defense. There are other drugs that can be used (none that replace Plaquenil) which you may find that will work for you.
Almost all of us have had to go through several different medications and combinations of medications until we found one that worked for us. Do not give up because one or two do not work for you. Sit down with your doctor and discuss your options so that the two of you can make informed decisions about a treatment regimen that works for you.

Peace and Blessings
Saysusie
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lornak · Big Guppy Joined: 29 Oct 2007 Posts: 47 Location: PA

Rere..

I have an allergy to plaq. and my dr. moved me to cellcept and low dose of pred for about the last year. it has helped, I think, but every now and then I still gets the flares, but that is to be exspected I guess. I also took ultram for pain, which seemed to work well for me. hope this helps.

rere7896 · Posted: Sat Jul 05, 2008 10:12 am Post subject:

Thanks for your reply. I took ultram in the beginning but now that does nothing and I've moved on to other ones. I take loretab 10's mostly and diludad sometimes. I've tried oxycodone but that gave me bad/weird dreams and the diludad keeps me up. Things that should make you sleep don't for me.....

sits_inthe_corner · Posted: Sat Jul 05, 2008 5:35 pm Post subject:

I'm having my eyes checked on Monday. I've not noticed any changes my self, so I'm expecting a clean test.
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rere7896 · Posted: Sun Jul 06, 2008 4:36 am Post subject:

Good luck!

kamillah · Sea Monkey Joined: 07 Jul 2008 Posts: 10

Hi,

I am on the hydroxychloroquine and was told I would need an eye exam twice a year. I have just started this drug and notice i am not as tired.

K

Karol · Posted: Thu Jul 31, 2008 5:13 am Post subject:

I am just dx and getting ready to start Plaq.

I was also told a eye exam 2 times a year and also now before I start the drug for a baseline.

Gerri54 · Posted: Fri Aug 01, 2008 5:33 am Post subject:

Hi Karol,

Ask your doctor about low dose naltrexone (LDN), many are taking it for other autoimmune diseases. Many are swearing by it, and how good it is. Another forum I belong to is KickAS, for my Ankylosing Spondylitis, another autoimmune disease. This is where I first found out about LDN.

I was told to ask my doctor about it. Unfortunately, I can't take it because of my liver disease.

Hugs

Gerri

Karol · Posted: Fri Aug 01, 2008 1:04 pm Post subject:

Thanks Gerri 54.

I will ask about it. Wink

sits_inthe_corner · Posted: Sat Aug 02, 2008 3:27 am Post subject:

I had my eye test a couple of weeks ago...everything is good. No signs of any problems...will go back in six months.
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