• Any insight on your experience with Rheumatoid Arthritis?

    Asked by MelanieIIB on Wednesday, November 16, 2016

    Any insight on your experience with Rheumatoid Arthritis?

    Any words of wisdom about your experience with RA and Methotrexate and Folic Acid? If your blood was tested for the RF factor, what was your number? Mine was 445.

    2 Answers from the Community

    • Molly72's Avatar
      Molly72

      I have either RA, have had it for 2 years. It was more of a hastle than the cancers I have had!
      My hands are almost useless, they are swollen & bent & in serious & constant pain. My feet are not much better. Also get periods of extreme tiredness. My back has severe arthritis as well. I'm a mess!!!!
      Since I have had many episodes of different types of cancer, I can't use most of the new treatments for RA that are available & tout themselves by the drug companies as "miracle" curies. (They cost hundreds of dollars in co-pays per month by the way). You see them every night on TV.
      So I tried Methotrexate at first, which nearly did me in..... it gave me COPD which I still have to this day. It causes lung problems in many patients. It also was no help to my RA.
      Then I tried Retuxin, a chemo type treatment which did nothing as well except cost my insurance company thousands of dollars. Again, no relief for me.
      Now I am ready to start a new drug called Otezla, which is used for Psoratic Arthritis. My dr. thinks it might help, and it is one of the few drugs left for me to use that has no problem with cancer. It cost $1000 a month!!!! But the drug co. will pay for it if you meet certain financial guidlines, which I do. So, we shall see.
      Hope you have better luck than I have had, & let me know about your symptoms as I don't know others with this horrid disease.

      over 2 years ago
    • MelanieIIB's Avatar
      MelanieIIB

      Hi Molly72. Thank you for your response. So sorry you are having such a tough time. So glad for you that the drug co. will pay for your meds that you are going to begin taking.

      So how long from the time you were diagnosed till your hands became swollen, bent and hurt constantly? I am just learning about RA and all the ways your body can be effected.

      I was diagnosed with breast cancer 4 years ago. Since that time I've had two separate mastectomies, delayed breast reconstruction, chemo, radiation, "targeted therapy" which is a drug used to treat Her2 pos. breast cancer, Tamoxifen for 2 years, and am now on the estrogen-depleting drug Letrozole.

      It is so hard to know when you have certain symptoms whether they are from the drugs you have taken or something else. I also have lymphedema in my right arm and hand from having 18 lymph nodes removed during my first mastectomy. The lymphedema causes swelling and pain.

      My symptoms were that my hands and feet would occasionally itch and after I would rub them to get relief from the itching, they would burn, turn red, and swell. I also had pain in my wrists, and big toes, but the drug Letrozole can give you achy joints. (A bone scan did show some arthritic places on my body. I told my oncologist about it and she told me it was not a form of neuropathy from the chemo drugs and that I should see a Rheumatologist. The Rheumatologist did not think I had RA because I did not have the typical symptoms. But my blood test showed my RF factor to be 445 when normal is below 14. She also did tests to rule out lupus, multiple myoma, and, hepatitis. She said based on the RF factor and the other tests being negative, I must have RA. I asked her if the RF factor number could be a false positive. She said no, not with a number that high.

      Since the time of my blood test in March, I have gotten to where my hands are stiff and painful for a few minutes in the morning and my feet hurt sometimes (the outer bone along the edge of my feet) when I first walk on them after getting out of bed. Some of my joints hurt, but not every day and not always the same level of pain...knees, wrists, elbows. Again, some of this pain can be from Letrozole but my bone scan does show arthritic changes in these places as well as my back and other places.)

      I am supposed to begin Methotrexate and folic acid soon. Did you take folic acid when you took Methotrexate? It is supposed to help with side effects?

      Guess I better get started doing some things around the house. Keep in touch if you would like and let me know how you are doing and if the new drug helps you.

      Blessings!!

      over 2 years ago

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