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Yeah, it's me - how 'bout that?

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 3 months ago #25778 by Sandi
Yeah, it's me - how 'bout that? was created by Sandi
I am at my wits end with my medications. This is not for ITP. For those of you who don't know my story, I have Lupus and possibly RA.

I take: Plaquenil, aspirin, 15+ mg's Prednisone, Flexeril, Toprol, 1,000 mg's Naproxen, Vicodin, Xanax and Methotrexate injections. I am at a point where the meds are not working and the side effects, especially Methotrexate, are taking a huge toll on my ability to function.

I have been researching alternatives. I do believe in some of the 'natural' supplements. I bought:

Ultra Omega Krill Oil
Ultimate Flora (50 billion)
Zyflamend

Has anyone tried any of those? I got them at GNC.
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13 years 3 months ago #25781 by milly
Replied by milly on topic Re: Yeah, it's me - how 'bout that?
Hey Sandi, can really understand about the methotrexate, I can now see how miserable that stuff was making me, at the moment I am just sticking with prednisone when the pain is bad (not too often though).
I have heard great things about the krill oil, I will be interested to know how this goes, good luck!
There is no practice run in life.
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13 years 3 months ago #25823 by hcpratt33
Replied by hcpratt33 on topic Re: Yeah, it's me - how 'bout that?
I am shouting from the rooftop to anyone who will listen about the naturopathic doctor I've found! I'm all for alternative medicine (though I've never had to use it until this diagnosis) because I can't stand the side effects from toxic prescription drugs. I was a bit skeptical about my treatment plan I received, but 4 months later- with my count going from >30 to 223, She has made a believer out of me. You can read my fairly-to-the-point story under "Natural treatments: Naturopath success & imbalance".
I hope you find something natural that helps you. I've not tried any of those supplements.
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13 years 2 months ago #26479 by firkins
Replied by firkins on topic Re: Yeah, it's me - how 'bout that?
Sandi -- nothing helpful to add, unfortunately, but I jsut want to say I'm thinking of you, have loads of empathy, and am sending prayers. I am not the one with ITP, my 13 yr old, is -- but I take too many meds for my own taste (I do have hashimotos, which, of all the autoimmune diseases, strikes me as maybe the best one to have...), and I trail you. I hate them all and they do lose their efficacy and I HATE the side effects!!! Long ago, a doctor put me on a benzo (klonopin) without telling me they were addictive. Given my family history, I never should have taken. He left me on them for years without ever even checing in. Ultimately, I'm a smart girl and should have done my homework, but I rue that day and that damn drug. It's a curse and rots your brain. I'm slowly weaning but it's hard. So I am just sending out prayers across the airwaves that you find some good altneratives.
Firkins (mom of Zoe (15) and Mia (13). Mia has ITP. Diagnosed 3/2012.
13 years 2 months ago #26498 by
Replied by on topic Re: Yeah, it's me - how 'bout that?
Sandi I am really sorry. Is it possible that some of the meds you are taking are fighting each other?

I'll be curious how Zyflamend treats you.
  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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13 years 2 months ago #26508 by Sandi
Replied by Sandi on topic Re: Yeah, it's me - how 'bout that?
I don't know if they are fighting each other, but they are fighting me. I did not do my injections for two weeks because I was going on vacation - long car ride - and I didn't want to risk getting Big D. When it hits, I have to get to a bathroom NOW. Anyway, the past few days I can barely walk. My feet and hands are killing me. Definitely difficult to work like this! I also have what looks like petechiae on my feet and legs. Hoping it's that and not vasculitis. If it doesn't go away in a week or so, I'll call the doctor. I'm going to inject tonight.

Zyflamend does not seem to do anything. Maybe I haven't taken it long enough.
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