We have a plan of attack.....

Discussion in 'The Watercooler' started by timer lady, May 9, 2008.

  1. timer lady

    timer lady Queen of Hearts

    on the attack on my body.

    No diagnosis as of yet as the almost 10 months of prednisone is masking so much. And that same prednisone is killing me - literally. That is what Mayo doctor had to say on Tuesday. husband & I were dumbstruck at his brutality AND it got our attention. It also got the attention of my neuro doctor & GP here in the TC.

    The initial diagnosis no longer matters....... it's the Cushing's Disease that matters now.

    Prednisone is being titrated down by 5 mg. a week. At the same time, methotextrate (a chemotherapy drug) is being prescribed to treat the auto immune symptoms. This medication is used by rheumatologists to treat vasculitis, polymyosistis, dermamyosistis, & Susac syndrome (but at a lower dose than if I were being treated for cancer). All diagnosis's that have been made, dropped, made again, dropped again & are all off the board until further notice.

    Neuro doctor is handling the post herpetic, post meningitis, post CNS infection symptoms with strong pain medications & is increasing my neurontin & keppra.

    Just for shi$s & giggles, GP is treating the blood pressure & rapid pulse issues brought on the prednisone; she's also in charge of all the blood work & ordering further tests that need to be done while on the methotextrate.

    husband is to set up & monitor my medications as I keep screwing that up & there will be many changes done quickly.

    My new exercise routine. Walk about the living & dining room for one minute three times a day. If you hadn't guessed it, I'm extremely weak. I've been told it will get worse before it gets better.

    So Sunday, I'll be down to 45 mg/daily of prednisone. It will take approximately 2 1/2 months to d/c this stuff if my body doesn't go into adrenal crisis. At around 10 mgs of prednisone we will know if my body will start kicking in & doing this on it's own.

    Last July 2nd this all started ~ my sed rate was over 120, my head felt as though it was going to explode, I was partially paralyzed & came home with a cane & a walker. I missed the tweedles 13th birthday because I was in the hospital.

    Finally a team of doctors that have taken charge & are no longer messing around. They are making no guarantees as to the level of recovery I will make & are encouraging me to apply for disability.

    I'd appreciate any positive thoughts, prayers & encouragement. I'm pretty down tonight.

    Thanks for listening - just needed to "talk".
  2. Wiped Out

    Wiped Out Well-Known Member Staff Member

    You have been through so much in the past year. I'm glad the mayo doctors have a plan and that husband is monitoring things. Take everything one day at a time-babysteps is still progress. As always you are in my daily prayers. Sending gentle hugs your way.
  3. SRL

    SRL Active Member

    Prayers and hugs, Linda. Think of us cheering you on around that living room walk.

  4. busywend

    busywend Well-Known Member Staff Member

    Linda, I am sorry you are down after this appointment.

    I feel encouraged for some reason. I guess that is because it seem as though there is a very well thought out plan.
    You said it yourself.
    AND I agree with them - apply for disability. Hey, there are no guarantees about anything in life - ever. Cover your bases, dear.
    :pouting: I am sorry it has come to this, but you have to do the right things for yourself - even if you do not want to.

    HUGE, HUGE HUGS! I wish I could bring you up and make you smile. I will leave that for Star - she is good at it!
  5. WhymeMom?

    WhymeMom? No real answers to life..

    Hoping you gain some strength and relief from pain......you are living one of my worst nightmares---when the body cannot keep up with the mind.......my thoughts are with you as you take this course of action.....wishing you great results!
  6. nvts

    nvts Active Member

    Linda! You're going to think I'm, well, NVTS! But in reality, this is good news. As you said "finally" someone is taking the bull by the horns!

    Since I started on this board, all you wanted were a plan of attack and some idea as to what you needed to do.

    Although they've said that it's going to get worse before it gets better, they DID use the word better. Honestly, who knows how things will ever "wind up" in the end? You need to look at this as your prognosis is progress.

    Why don't you sit at the computer, let us know that you're going for your "spin" around the room, and finish back at the computer and let us know how you did? We'll walk with you!

    Keep your chin up (I'm keeping both of mine up! lol!). We're here for you and it is always "darkest before the dawn" and the sun's coming up for you!

  7. Penta

    Penta New Member

    Just sending the best thoughts I can for your plan and recovery.
  8. dreamer

    dreamer New Member

    I agree, it is good news, and good to "have a plan"
    As I posted in healthy living, - the prednisone has done similar to me....I have been on the methotrexate for approx 5 years, will you be taking it orally or by injection? It can take a little time to show you it is working. My prednisone was added on 2 years ago (or is it 3 years, now? I think 2, but could be wrong) and also went on Humira injections at that time, as well. I also had to apply for disability - got that even before I had a rock solid diagnosis. Back in 2000. (could not use hands or feet, arms or legs and the illness also attacked my ability to swallow at that time) It has been a hard and rocky road, but.....prior to the prednisone, I was a quadriplegic. In so much intense pain, and pain medications did not even touch the pain, did not take the edge off. Even tho the pred has now caused my liver to have serious problems and has given me diabetes and high blood pressure etc....had they not given me the pred, I doubt I would have lived thru this. I guess for me, prednisone is the drug I hate to love for giving me back a life, and I love to hate it for the new health issues it has caused.
    I have been now walking walker free, scooter free, splint and brace free for 2 years. I did not believe it when my new doctor told me it would happen. But it did happpen. Even tho I have added the diabetes, liver problemss, skin problems, blood pressure problems, and sjogrens.....I guess those are my payback for being able to walk, feed myself, dress myself, brush my own teeth, comb my own hair etc? There CAN be light at the end of the tunnel- things CAN get better.....Not a single day goes by that I do not marvel at my renewed ability to take even one step- chop vegs for dinner...fold our laundry. There are still some days when I squeeze toothpaste onto my toothbrush, I am hit with giggles and my kids come running to see why I am giggling and there I am so happy to do such a simple basic task.
    I forget things more often now- I know I do- my kids know I do. We have turned that into a silly game, too. I was in H E double hockey sticks for a long lomng time....it has ALL changed how I thiknk, how I view things, how I live my life. It has changed how I look at my ill husband, how I look at my difficult child......No matter what, the prednisone gave me things back that I thought were lost forever.
    I am hoping for you that the mtx (methotrexate) begins to work, helps things out...and I am holding good thoughts for you for your successful reduction of pred. Hang in there, good things can and do happen! Good luck!
  9. TerryJ2

    TerryJ2 Well-Known Member

    Oh, Linda, I am so sorry you're down, and so low on energy. But I am hoping that the Mayo doctor's diagnosis and take-charge attitude balances that out. You have been waiting way too long for good, solid information.
    Wish I were there to hug you.
  10. KTMom91

    KTMom91 Well-Known Member

    So glad there's a plan in place! Praying that you'll feel better and get your energy back!
  11. Shari

    Shari IsItFridayYet?

    Well, at least they're cutting to the chase with it. 'Bout time for that, anyway.

    Head up, my friend. You've got their attention and it sounds like there's no more piddling around with this.
  12. timer lady

    timer lady Queen of Hearts

    Thank you all. I've done my 3 laps about the living/dining room. I'm about ready to crash & burn for the night.:crazy1:

    I have my moments of self pity & then I move on.

    dreamer, I appreciate all the info & you sharing your journey. Gives me something to look forward to....

    Again I appreciate all the good thoughts.
  13. Lothlorien

    Lothlorien Active Member Staff Member

    Always thinking of you and sending good thoughts.
  14. Steely

    Steely Active Member

    Sweetie..........You have every possible positive vibe I can muster being sent your way right now.
    Many hugs.
    Post as much as you want during this time of d/cing the steriods - it may be tough, but we are here.
  15. flutterbee

    flutterbee Guest

    I'm glad they have a plan. Mtx (methotrexate) is used for a multitude of autoimmune/rheumatic disorders. You do need to be monitored closely. I hope it works for you.

    Many hugs and as always you are in my thoughts.
  16. Tiapet

    Tiapet Old Hand

    Here's to hoping your plan of attack is the final attack that conquers the battles you need to succeed for your level of comfort you want to have in your life! :)
  17. susiestar

    susiestar Roll With It


    I am so glad you have docs that are taking the bull by the horns!! It is about time they wised up!!

    I hope the methotrexate works for you.

    I would encourage you or your husband to research Lyrica. It is supposed to be the "next generation" of neurontin, according to my rheumy (whom I love, and who does a LOT of research for each of his patients). It is supposed to have fewer side effects. BUT it might not work as well with the other medications, I dont' know.

    I just wanted to suggest it.

    I am sending every positive vibe I have to you, praying, and fighting off the cats as I attach the chicken livers!