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Thread: Random Update...MTX, SSI, etc....blah

  1. #1
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    Question Random Update...MTX, SSI, etc....blah

    Hello all. I've not posted anything new on here in a bit since I had the increase in Methotrexate. It's only my 2nd week on the increased dose(7.5mg-15mg)and while it helped last week for a day or two to make me feel better the side effects drag me down. It's day 3(took it on Tuesday night)and I just feel drained still, headache off and on, not a big appetite, foggy, nausea off and on, I seem to get a mouth ulcer or two that makes my throat sore on the 2nd day as well from it each time I take it and Lupus symptoms including aching, burning/tingling, chills, rashes on and off(malar/butterfly),fatigue, etc. I'm just wondering how long it should take for this to work and how will I know if it is beneficial enough to stay on it? I have been on it for 4/5 weeks now...I think...may be going on 6....lol...fog ahhh! lol....I know they go up to 25mg with MTX for Lupus...what happens if it doesn't work even on that dose?...

    Anyway, moving on...I get help from the state as a single mother and they made me apply for SSI because I was being medically exempt to receive TCA and it was going to be a year or so receiving this. I tried applying for a Govt job but they denied me simply due to SLE and taking immunosuppressives. I'm trying to do things to improve myself financially and do better for my children but it is not working out. My case worker is having me appeal my case. I also noticed on my denial letter that the main specialist I see for my Lupus did not submit a report to aide in the case. I'm not sure why this is but I will be sure to email her about submitting one for the appeal. They based the denial on SLE, Epilepsy and Anxiety and said I was still able to work despite my disease. I think it's funny because it says "For payment as disabled adult: If you are age 18 or older your health problem must: -keep you from doing any kind of substantial work and last or be expected to last for at least 12 months in a row or result in death."....Well every time I go outside I get a rash and end up sick and it takes 10 minutes!!! I can't take my kids out to play anymore and I'm allergic to sunscreen..it actually makes me burn which makes my rashes worse. Not to mention heat as well. I can't recall if I was on MTX when I applied for this so I need to check my info. It's so frustrating. I don't know how they expect us to do things or support our families like this. BLAH.

    Beyond all that I have my pharmacy and drs offices not filling meds right so I've been without my Bentyl for IBS for a week or so. It's ridiculous. Anyway I hope all of you are feeling okay today. Take care and God Bless.

    -LadyBug
    *LadyBug*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:
    Plaquenil-200mg 2x/day
    Prednisone-7.5mg 1x/day
    Methotrexate- 2.5mg 4 pills 1x/week
    Keppra-750mg 2x/day
    Daily Vitamin-1x/day
    Folic Acid- 1mg 1x/day
    Protonix 40mg 1x/day
    Bentyl- 10mg 4x/day, Miralax- 17g 1x/day
    Vit. D 800IU's 1x/day
    Lyrica- 75mg 1x/day
    Flonase 50mcg 2 sprays each 1x/day

    Wanna know my story, just ask!

    *Lord_Walters_Lady* <3

  2. #2
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    Britt,
    MANY HUGS. It is such a shame that those of us who are very sick must go through so much just to prove how sick we are. Our healthcare system does not make sense!
    I can't help you much about the MTX. My great rheumy in Texas started me on it at the lowest level, saying that we would increase the dose later. Then I moved, and my current rheumy won't even talk to me about dosage - she just left it the same. She also only orders blood work once a year (it's supposed to be done at least every three months with MTX). I've just quit taking it until I go back to Texas.
    I've had the same thing happen with the Plaquenil. The good rheumy started me on 100 mg, then upped it to 200 mg (one pill) per day, saying that we would gradually increase to two per day. The new one left me on one pill per day. I think that I'm on the bare minimum to get by until I move back - sigh!
    I hope that it all kicks in and helps you soon.
    Hugs,
    Marla

  3. #3
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    Hey Marla,

    I guess I should be thankful I at least have a rheumy who isn't just blowing me off as far as meds and everything goes. Sounds like yours is just doing enough for her to be able to say she's "treating" you. I can't believe she only does labs with the MTX once a year! Mine makes me go every month to get them done! Granted she only does a cbc and cmp but still it evaluates enough to make sure the MTX isn't messing with my blood counts and organs. I'm sure the regimen of blood work will increase once I see this Endocrinologist though. I personally feel my cortisol needs to be checked often since it's been low twice before. I hope that if go and at least have Addison's then they can get me on the hydrocortisone and possibly put an end to this madness. As for my MTX dosage, my rheumy says we can go up to 25mg but thinks 15mg is good probably due to my weight since i'm only 96lbs! I think that is due to the adrenal issue as well. Anyway, I'm rambling...I need to put another post up about the Endo appt and potential Addison's. Perhaps some on here will know more about it. I hope you have a great weekend and feel okay! *hugs* Take care and God Bless.
    -LadyBug
    *LadyBug*- Epilepsy Dx: 2003 & UCTD w/SLE features Dx: 2009 SLE/Lupus Dx: May 12th 2011--Current Meds:
    Plaquenil-200mg 2x/day
    Prednisone-7.5mg 1x/day
    Methotrexate- 2.5mg 4 pills 1x/week
    Keppra-750mg 2x/day
    Daily Vitamin-1x/day
    Folic Acid- 1mg 1x/day
    Protonix 40mg 1x/day
    Bentyl- 10mg 4x/day, Miralax- 17g 1x/day
    Vit. D 800IU's 1x/day
    Lyrica- 75mg 1x/day
    Flonase 50mcg 2 sprays each 1x/day

    Wanna know my story, just ask!

    *Lord_Walters_Lady* <3

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