One Patient's Positive Perspectives

Finally, Benlysta infusion #9

Last week, it was a relief to finally receive a twice postponed Benlysta infusion for my lupus.  Also, today marks one week into the  April Health Writer’s 30 day challenge, and over 7 months (32 weeks) into my Benlysta treatments.  Happy day #225 with Benlysta.  Today is an important milestone, simply because I am declaring it one for both reasons!

Asthma relief inhaler Xopenex

After spending most of March fighting a nasty long case of bronchitis, I am just now finishing the last doses of my fourth antibiotic prescription.   Cipro, Zithromax, Cipro a second time (because it kills mycoplasma my doctor found after Rx #2,) and finally Bactrim.  Along the way from sick to well, there were three courses of steroids, four doctor appointments and one telephone consult.  The recurring fevers are gone, my lungs are mostly clear, the coughing and choking have stopped, I can talk and sing again, and oh, yes, I can even breathe most of the time.  Except for the moments when my slightly flared asthma kicks up, my respiratory system is back in working order and I am back to work full-time.  What a relief!

My husband has explained lately how much his joints have hurt after working long hours and accomplishing some major projects at work.  As we talk, I have realized that my joints have been hardly hurting at all.  Usually, because of my lupus, I am the one who wakes up with joint arthritis pain, and he is the comforter.  Lately, our roles are decidedly reversed.  Each time I quietly realize that I don’t hurt, I have a wonderful opportunity to be thankful for the improvement.

Declaring victory!

What lies ahead with my lupus and Benlysta?  I’m not really sure, but I know my rheumatologist is not going to be pleased hearing about my 4th infection in the last 4 months of infusions.  He commented with concern about it the last time I saw him, when I had only had 3 and he is sure to be concerned.  I am feeling pretty good now, and doing little complaining.  My energy levels are up, my lupus peripheral neuropathy symptoms are nearly dormant, my joint pain is down, and my CNS lupus symptoms seem to be in check.  I am waking up in the morning, sometimes before the crack of dawn, and feeling pretty decent.  I will take decent and declare it to be a minor victory.  Decent is acceptable to me any day!

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Comments on: "Lupus and Benlysta after 7 months – Infusion #9" (5)

  1. sandra said:

    Olá, sou portadora de lupus à 19 anos e não aguento mais tomar corticóides e sempre estar em crises, como faço pra me tratar com benlysta.
    Atenciosamente
    Sandra

    [Translation to English: Hello, I am suffering from lupus for 19 years and can not stand taking steroids and always be in crisis, as I do to treat me with Benlysta. Sincerely, Sandra] LA

    • Sandra:

      Siento mucho escuchar que usted está teniendo problemas con el lupus. Mi español no es muy bueno, así que no entiendo por completo si usted ya está tomando Benlysta o si usted está preguntando si sería de ayuda.

      Si Benlysta es un medicamento que su seguro paga, te puede ayudar. Benlysta cuesta anualmente hasta un salario como de mucha gente todo lo que no es asequible sin un buen seguro.

      Existen también otras drogas fuertes que se usan para tratar el lupus cuando los esteroides por sí solos no son suficientes. Es posible que desee preguntarle a su médico acerca de metotrexato o azathiaprine, ya que estos medicamentos no son caros.

      Mis mejores deseos para usted como usted busca para el tratamiento del lupus mejor. Tengo algunos enlaces con información lupus españoles en mi “blogs Gran Lupus” en la parte superior de la página del blog. Les animo a ir a esas páginas para obtener más información. ”

      Atentamente,

      Lupus Aventurero

      [Sandra:

      I am so sorry to hear that you are having difficulty with your lupus. My spanish is not very good, so I don’t understand completely whether you are already taking Benlysta or if you are asking if it would help.

      If Benlysta is a drug your insurance will pay for, it might help you. Benlysta costs annually as much as as many people’s entire salary, so it is not affordable without good insurance.

      There are also other strong drugs that are used to treat lupus when steroids alone are not enough. You may wish to ask your doctor about methotrexate or azathiaprine, since these drugs are not expensive.

      Best wishes to you as you look for better lupus treatment. I have some links to spanish lupus information on my “Great Lupus Blogs” tab at the top of the blog page. I would encourage you to go to those pages for more information.”

      Sincerely,

      Lupus Adventurer]

  2. Hey, glad to her your CNS symptoms are starting to settle. Hopefully the infections are a blip and aren’t linked to the Benlysta.

  3. amyirenewhite said:

    I am on my fifth Benlysta treatment in a couple weeks. I’ve noticed really great days and really bad days… A much larger difference than the nasty methotrexate which make you feel ba all the time. I’ve had a few days where I actually was hungry and am hoping I may have gained a pound or two this time. I also have ridden my harley a couple times.. Which is a whole nother type of therapy that i hope the benlysta continues to improve upon. I am hopin that the more I take, the more good days there will be. I know I went in with Somewhere Over The Rainbow dreams for it, had to get denied three times because my disease sre so advanced they doubted it would help me any… But it was the last alternative I had… so any positive is awesome to me. Happy Easter, butterfly sister.

  4. Decent is awesome! I’m glad you’re doing better 🙂

    Asthma was a pain in the butt before my Lupus dx, now because of the Pred, I don’t have as many attacks, so as much as I hate the Pred, it is nice to be (mostly) allergy and asthma free.

    Take care!

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