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Lupus Meds question

Posted by jerrysgirl3 @jerrysgirl3, Sep 22, 2023

I have chronic lymphocytic leukemia and SLE Lupus. Diagnosed Feb 2023. I was put on hydroxychloroquine and did not do well on it. I am having very serious issues, mostly internally, labs are totally off, don't know if it's the leukemia or lupus. Saw doc yesterday and he gave me printouts on Azathioprine and CellCept. They look worse then the hydroxy 😳!! I think he forgets I have cancer. I've had thyroid and breast cancer as well. Both of these meds can cause it and block your immune system! What had been people's responses to these medicines?

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jerrysgirl3 | @jerrysgirl3 | Sep 25, 2023
In reply to @reets70 "Ive been on hydroxy for more than 15 years and I have never had an issue..." + (show)
@reets70

Ive been on hydroxy for more than 15 years and I have never had an issue with it. I see my eye doctor annually and there is no change in my vision because of the meds.

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@reets70 I didn't have eye issues but had kidney and stomach issues which my labs are still messed up two months after stopping !

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1 reply
nhouston | @nhouston | Sep 25, 2023
In reply to @jerrysgirl3 "@windyshores a see attached photos : Mary Ruth's is the brand of organic vitamins. Had to..." + (show)
@jerrysgirl3

@windyshores a see attached photos : Mary Ruth's is the brand of organic vitamins. Had to stop today cos the vitamins pumped me up lol. Lots of B. So I found when I get up at 4:30, if I feed the cats and then go back upstairs to sleep I seem to have more energy rather than getting up and staying up every morning at 4:30 am😳😳😂 don't know why I never thought about going back to bed!!

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Thx for info. My problem is inability to get back to sleep.

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1 reply
jerrysgirl3 | @jerrysgirl3 | Sep 25, 2023
In reply to @nhouston "Thx for info. My problem is inability to get back to sleep." + (show)
@nhouston

Thx for info. My problem is inability to get back to sleep.

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@nhouston
I'm up all night peeing then up for good every morning between 3:30-4:30 am.....today I realized I should go downstairs, feed the cats and then go back up. I seem to be able to let my body sleep while my brain is whirring (and singing songs) and when I get up at 6:30 am I'm not as bad off...

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reets70 | @reets70 | Sep 26, 2023
In reply to @jerrysgirl3 "@reets70 I didn't have eye issues but had kidney and stomach issues which my labs are..." + (show)
@jerrysgirl3

@reets70 I didn't have eye issues but had kidney and stomach issues which my labs are still messed up two months after stopping !

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I’m sorry to hear that. I didn’t know hydroxy had those side effects. I’m seeing the doctor who prescribed it today, it will be interesting.

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bayhorse | @bayhorse | Sep 27, 2023
In reply to @jerrysgirl3 "@windyshores No the SLE was not affecting my organs until he put me on hydroxychloroquine. I..." + (show)
@jerrysgirl3

@windyshores
No the SLE was not affecting my organs until he put me on hydroxychloroquine. I don't think I needed it and it totally screwed me up. Are you in any meds? I think docs are prescribing before they are needed. This morning I took some
Liquid vitamins and I feel
Great!!!! It's so unbelievable since I was so bad yesterday!! Im having no breathing issues. Or fatigue 😳. Almost normal!! It's so crazy. It's like my body had a total vitamin deficiency!! I actually think one of the anemias listed talked
about folate and B12 which this vitamin has a lot of
The b vitamins and organics as well. I'll take the day even if it's only one!! I didn't complain once or feel bad!! Yesterday I was sure I was dying....

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What brand of liquid vitamins did you take?

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jerrysgirl3 | @jerrysgirl3 | Sep 27, 2023
In reply to @bayhorse "What brand of liquid vitamins did you take?" + (show)
@bayhorse

What brand of liquid vitamins did you take?

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@bayhorse Mary Ruth's Organic Women's Multivitamin. After initial two days of taking it I actually have to step back as my B vitamins get really elevated and I get super hyper lol. Now I'm taking methylfolate, Vitron C with elemental iron, vitamin D3, vitamin C by itself to help iron absorb, and calcium magnesium vitamin D3 all in one. I'm actually doing pretty good. No more fatigue. I'm getting up later. More energy. Getting more accomplished. Knee pain gone.
Until next flare lol!

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