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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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Mentor
Ginger, Volunteer Mentor | @gingerw | Sep 23, 2023
In reply to @jerrysgirl3 "@becsbuddy Yes. The calls I've been making have been to RD's just by happenstance lol. I..." + (show)
@jerrysgirl3

@becsbuddy Yes. The calls I've been making have been to RD's just by happenstance lol. I didn't realize what it meant until yesterday. I live in NY State on eastern Long Island. The few good doctors we have (I can count on one hand) are totally swamped and overwhelmed and are into March 2024 with their appts!! People can't afford to live out here-even doctors. Not like this when I moved out here 37 years ago. We have NYU Langone and NY Presbyterian centers however they just gobbled up regular doctors out here. They are not trained NYU Langone doctors! They're the same crummy doctors whether they're with the facility or not. The facility name does NOT make the doctor 😳. I will not set foot in FL nowadays, even if it would save my life! Calling for a Mayo trained doctor is a good idea. Thank you!

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@jerrysgirl3 Use the link that @becsbuddy provided in her post, to find a Mayo Care network member who may be closer to you than a Mayo Clinic campus. They are in communication with Mayo Clinic, and can avail themselves to the expertise there. I know if I was in need of such help, I would use the care network, and head to northern California.
Ginger

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1 reply
jerrysgirl3 | @jerrysgirl3 | Sep 23, 2023
In reply to @gingerw "@jerrysgirl3 Use the link that @becsbuddy provided in her post, to find a Mayo Care network..." + (show)
@gingerw

@jerrysgirl3 Use the link that @becsbuddy provided in her post, to find a Mayo Care network member who may be closer to you than a Mayo Clinic campus. They are in communication with Mayo Clinic, and can avail themselves to the expertise there. I know if I was in need of such help, I would use the care network, and head to northern California.
Ginger

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@gingerw the link didn't work. Told me site not found. I'm not going to CA. I can't be in the air that long. I will be faxing my lab info to new cll doc. Maybe he will push up my appt or at least order some anemia tests to figure out what kind I have. I just took some great liquid vitamins and I feel good. I felt good when I first took them a few months ago so decided to try again. Lots of b vitamins and organics. I will look into other Mayo sites.

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jerrysgirl3 | @jerrysgirl3 | Sep 23, 2023

@gingerw
Oddly enough after taking that liquid vitamin I feel almost normal. No breathing issues. No fatigue. I also cut back on my water and I think that is helping my blood sodium levels stabilize and stop going down. Very bizarre to change so quickly, no? Total vitamin deficiency??? 😳😳 I hope it lasts as my grandson is sleeping over tomorrow 😊❤️💙

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jerrysgirl3 | @jerrysgirl3 | Sep 23, 2023
In reply to @jerrysgirl3 "@windyshores Dont know. Doc seemed to be having long appts with people yesterday. I was happy...." + (show)
@jerrysgirl3

@windyshores Dont know. Doc seemed to be having long appts with people yesterday. I was happy. I get in and he's like "ask your questions but quickly I have another patient waiting" 😳😳. Really?? So of course I get flustered but I ask my questions and his answers did nothing for me. Couldn't take labs cos he was short staffed but gave me a script and handed me printouts on the meds. I think the meds will kill me! I am not feeling at all well this am. I feel so dehydrated but have already had 4 glasses of water and it's only 7:30 am!! I haven't even had a bone marrow biopsy!! I need my doctors to talk to each other!!! I literally feel like I'm dying....and I'm afraid.

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@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....

REPLY
3 replies
windyshores | @windyshores | Sep 23, 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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I had to stop hydroxychloroquine after several years due to the effect on my eyes.

Hope you have another good day!

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1 reply
jerrysgirl3 | @jerrysgirl3 | Sep 24, 2023
In reply to @windyshores "I had to stop hydroxychloroquine after several years due to the effect on my eyes. Hope..." + (show)
@windyshores

I had to stop hydroxychloroquine after several years due to the effect on my eyes.

Hope you have another good day!

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@windyshores Yes I've heard about that eye issue. Even though I've been off it for two months and on it maybe 6 weeks prior to that, I'm keeping my eye doc appt in two weeks just to check them out. It's not a good medicine. I heard so many bad things about it and was so hesitant to start it when I didn't feel I needed it. Doctors rely too much on meds. My husband and I were just commenting that all the commercials on TV are medicine related. No more food or product related ads!! And the side effects, which they ramble off at the end, are worse then the original disease 😳

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1 reply
windyshores | @windyshores | Sep 24, 2023
In reply to @jerrysgirl3 "@windyshores Yes I've heard about that eye issue. Even though I've been off it for two..." + (show)
@jerrysgirl3

@windyshores Yes I've heard about that eye issue. Even though I've been off it for two months and on it maybe 6 weeks prior to that, I'm keeping my eye doc appt in two weeks just to check them out. It's not a good medicine. I heard so many bad things about it and was so hesitant to start it when I didn't feel I needed it. Doctors rely too much on meds. My husband and I were just commenting that all the commercials on TV are medicine related. No more food or product related ads!! And the side effects, which they ramble off at the end, are worse then the original disease 😳

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I thought hydroxychloroquine was a relatively benign drug actually. I didn't have side effects except for, eventually, flashing lights in my peripheral vision. Not the vision field issue usually seen. The flashing lights stopped when I went off. But for several years, no side effects. (My cardiac QT interval is now longish so I would probably avoid hydroxychloroquine for that reason now.)

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reets70 | @reets70 | Sep 25, 2023

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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1 reply
nhouston | @nhouston | Sep 25, 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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Would you mind to give brand name of vitamins? I am not aware of liquid vitamins.

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1 reply
jerrysgirl3 | @jerrysgirl3 | Sep 25, 2023
In reply to @nhouston "Would you mind to give brand name of vitamins? I am not aware of liquid vitamins." + (show)
@nhouston

Would you mind to give brand name of vitamins? I am not aware of liquid vitamins.

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@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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