I will call myself “Anna” to protect my income, dependent upon my image and name, not that I am famous. My AS went undiagnosed for 20 years (I am in my 40s) and allowed cancer to form in my body from an alleged autoimmune malfunction, according to my oncologist who is one of the best, worldwide.
While I am relieved to have a name for this — learned just months ago — to go with the agony that was thought to be lupus for a long while, the AS is worse than cancer, radiation & chemo combined. I am currently being tested for caudia equine (horsetail spine). My worst problem is spinal pain, stiffness and spinal migraines as well as joint & muscle pain with immobility. I also have been diagnosed with fibromyalgia that my current Rheumatologist thinks was the mistake leading to my not being diagnosed for so long. I question if I have fibromyaglia in addition to all this as others have mentioned on Faces of AS. I take Cymbalta, Celebrex, Sulfsaszine, steriod shots, & Provogil, and they all have helped a varying amount of 30-60% for the last nine months. I would like to leave the house for more than one hour a week and not have to recover for days. I just missed a friend’s funeral from this. Any pointers? I cannot take drugs that lower immunity while on chemotherapy and probably not thereafter. I’ve asked for physical therapy with no comment yet from my rheumie.

And just as many of you have shared, I have been discriminated against at three ” jobs” for going to doc appointments, being out sick and for applying for short term insurance disability.   At any rate, chemotherapy does make AS significantly worse, so get checked and definitely biopsied if you show signs of cancer. Never have the frame of mind that just because you have one disease that the odds are than you will escape another.

Lastly, but most significantly — I do need support– just as we all do. My mother has literally, publicly disowned me for my poor health over most of my life. Friends can be fickle now, too.

I’ve never talked to our Lord so much. He is my constant. May He give us double for our trouble.

Godspeed to all.

Simply Me

5 Responses to “Anna”

  1. No one is going to disown you here Anna. To the contrary-we welcome you. Your new freinds on FACE’s won’t be fickle-to the contrary, we understand when you don’t feel like “going out.” WE understand if you get a little crabby once in awhile cause you don’t feel good(thats me!). We understand when you don’t want to go binge drinking cause you’re on Methotrexate (oops-that’s me again-just kidding!!). Please-let us be your support. You’ve now got a support staff of 4?? FACE’s.(hey, how come you don’t have a face #-you’re the face of all of us).

    Cancer with AS? Sticky problem. Are you sure you can’t take any “biologicals (Enbrel ect. ) with chemotherapy? I remember reading that “methotrexate” was a chemotherapy drug, but the AS dose was like a 1/1000’s of the chemo dose? How bout prednisone? For me, physical therapy wasn’t that great. The “mobilization and stretching” I love, the “strengthening” just aggravated the inflammation of my condition. I just went through another round of PT on my neck and shoulders-and three months of “strengthening” didn’t do anything-only when I stopped did I feel better.And now I’m back to where I was. But I love the “mobilizing”.

    I’m glad you talk to God. After all, God is working through a special lady to bring us all together. Coincidence? I think not. Sometimes I think we are going through this to prepare us-for what I leave up to hope.
    I’m such a windbag.

    • Thanks Derek. Not on the drug you mention as chemo. My chemo is Tremador for brain cancer allegedly triggered, per my MD Anderson oncologist, by autoimmune malfunction. I’d never choose to take an immunity lowering drug, whether Enbrel -type or “chemo for AS” (chemo lowers immunity) even without cancer before significant research — because the lowered immunity with HLA ,allowed cancer –in my body — in my brain. There is also a tie to cancer and TNF, which is a protein that is screwed up in diseases lke AS. Be careful out there. That is why most rheumies deal with patients who also have colon cancer.

      I’ve not tried predisone, but was on a different steriod to prepare for brain surgery. That steriod along with brain surgery made my AS worse, then radiation and brain chemo made for ultimate hell on earth, where AS is concerned. My rheumie said my bad reaction to a steriod “proves I don’t have an autoimmune but a systemic disease, which AS is.” Hmm. What do you get told? I hear AS from other sources that AS is an autoimmune disease as well as a systemic ( all system) disease.

      Celebrex and Cymbalta have helped the AS as much as possible without trying a designer drug like Enbrel. Sorry the PT didn’t help you. Do you have any other HLA immunity disease? I”m being tested for other HLA related diseases such as Narcolepsy which causes some of the neurological symptoms I though was part of my AS ,such as weak neck and weak pelvic girdle, knees buckling & constant need for sleep & etc. Different HLA (not just b27) must run on both sides of my family from doctors’ comments.

      Hope this makes others pro-active. By the way, Celebrex is allegedly “good” for this TNF protein I mention. It is also being used in combo with chemo to treat brain cancers and lung cancers, per my MD Anderson oncologist.

      Take care Derek and all. Laugh a few times a day!

    • I’m not a real doctor Anna, I only play one on TV. But after going through cancer, I can certainly understand your reluctance to take anything that has been linked to cancer, or anything that might lower your immunity. If I remember from a script I once read when I was doing an off broadway play of Dr. Welby MD(that just dated me), AS “is” an autoimmune disease. It mistakes healty cells as “invaders” (viruses ect.) and attacks itself. An “overactive” immune system attacks itself. I think all the drugs try to prevent the body from “cranking out” to much inflammation. If “systemic means “attacks more than joints” then yes-As is systemic. It can attack eyes, lungs, heart. (my dad had a heart valve replaced, and his doc noted AS in the CT scan).

      I would still ask my “oncologist” if a biological like Enbrel is bad for cancer. Then I’d ask another, and another. Remember, you always have it as a “fall back”, which is kind of a nice thought-in a way.(it’s when we run out of options that it gets….). I guess it’s about weighing relief VS. risk.

      Whats the line in the Bible about “…my grace is sufficient for thee. For I am stronger in weakness…” I interpret that to mean we are much more apt to turn to God when we are ill. In short-AS brings us closer with God. And for that-I think all the healthy are missing out BIG TIME. And all we gots to do is open our minds, open our heart, and ASK. God might not cure me, but together, me and him, maybe we can heal me.

  2. Dear Anna,
    Thank you so much for sharing your story with us. Please know from this day forward you are never alone. Stand strong and remember one day at a time. Wishing you the best.
    Sincerely Cookie

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