Lori222

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  • Lori222
    October 7, 2012 at 11:07 pm

    Raymond—when i had my infusions i thought i was covered, it wasn’t until a month or so later Anthem BCBS decided they weren’t going to cover.

    They  sent a letter saying they would cover only if i had an abnormal antibody  (which I did) they then sent a second letter saying they would only cover if i failed ivig, i showed them that i had failed all three, ivig, prednisone and plasma x/c.  After I showed that i met their listed criteria they sent a third letter saying they wouldnt cover rituxin for cidp, this time they left out the criteria I had met.   Mine is in the first level appeal process right now, I plan on taking it to the Maine state insurance bureau if they deny the first level appeal.

    I think it really depends on where you live, i guess if i had lived in MA it would have been covered just on the fact that it’s the immunosuppressant my dr felt would work best for me…..but the healthcare system in MA is waaay better and ahead of the system in Maine.  In Maine the people who receive the free government insurance–mainecare, get a lot better coverage than us who work and have to pay for our insurance—our’s is a very messed up system right now 🙁   hopefully if you live in a state where insurance is better and your dr feels you need rituxin you might not have a problem getting it.

    have you already failed ivig and prednisone?  they are suppose to be safer than the rituxin.  Although so far, i have  not had any negative side effects from it.  I have been without ivig since May— 5 months with no worsening of symptoms.   I have not had significant strength  increase, my dr said it may take a while to see that??     good luck with it—-dealing with insurance companies can be very stressful!!!

    Lori222
    September 12, 2012 at 9:15 pm

    that’s a very sad post 🙁    I am sorry for your loss.

    what it made me realize is that it is okay to be pushy with the Dr’s—. sometimes i dont call when I have concerns because i dont want to bother the staff/Dr.    After reading your post I feel  differently, I have children i want to see graduate and it’s okay to be pushy when we need to.

    I

    Lori222
    August 28, 2012 at 2:11 am

    thank you Linda 🙂  I’m still in the wait and see mode on the rituxin. My Dr said to give it 3 months. On the good note I have not got worse and it’s been 3 1/2 months since ivig.

    I just fiished reading your post on your pre-sct condition—you have really come a long way, im so happy for you.   Lori

    Lori222
    August 22, 2012 at 3:08 am

    congratulations MarkEns,  It must feel so good  to be treatment free. That was  long time to have to deal with a catheter, I was more than ready to have mine out after only 10 days of haviing it.

    Best wishes on your remission–Lori

    Lori222
    August 18, 2012 at 1:33 pm

    Bny i get that feeling in my ankle and lower calve area. Mine even looks very red at times, usually when Im hot, then the redness fades as I rest or cool down.      Lori

    Lori222
    August 17, 2012 at 11:17 pm

    glad for you both 🙂  it’s so nice to hear of the cidp success stories. If I remember correctly Alice, you had axonal damage. So there is hope that, that can heal.   I liked your posts explaining your healing process, it was very informative.

    Lori222
    August 17, 2012 at 10:56 pm

    hi everyone–glad to see the forum back up 🙂   It has been over 3 months since my last ivig infusion and i have not gotten any worse. I have had more energy, feels like my calves muscles are larger than they were.

    I had my rituxin on june 14,  Dr said I should know by my late Sept. appt with her if its working.  I hope so, have felt much better, have many sensory things that werent there before, itching, pain, fascillations ,tapping sensations, stinging sensations–these are in place of where there is usually numbness.

    A few times when I was getting impatient and discouraged with the waiting I read back through some old posts here on healing, and found a good one Alice posted on how painstakingly slow it can be, and sometimes you wonder if it’s even working. (she was discussing SCT-but i think it would also cover healing in general)  That post was most helpful right when I needed it 🙂

    hope everyone is doing well and enjoying summer—to my western friends, I would love to send you some of this  New England rain!!  Lori

    Lori222
    July 26, 2012 at 2:11 am

    yes , it seems more people hare are having pretty good success getting in for the sct. I plan on applying if the rituxin doesnt work. only the nerves below my knees are affected by the cidp, i am able to walk,just not as easily or as fast pre-cidp. From my research, the rituxin did not seem quite as extreme as the sct, and i did have the identified anti-body, so figured this was worth a shot.
    Funny you said that about your dr, i trust and like mine too. but today, she called me to see how i was doing with the rituxin. She commented on how maybe we could wait 9 months instead of 6 for the next one if its working??? there are people here who do it way more often. She is very conservative, I would prefer aggressive and have this cidp thing behind me.

    Lori222
    July 25, 2012 at 2:44 am

    feet are very itchy today??? have had to take off my shoes several times to scratch them. how can feet be numb but itchy at the same time?

    Lori222
    July 25, 2012 at 2:41 am

    jgl No, i do not have the anti-mag type cidp. My symptoms are very slowly progressive, no pain, distal, no autonomic nerves affected, sensory and motor involvement, predominantly axonal. I do have an identifed anti-body–possibly paraneoplastic, but so far after extensive testing there has been no cancer. The abnormal anti-body is the reason my dr chose to use rituxin as immunosuppressant of choice after unsuccessful trials of prednisone,PE and ivig.
    The anti-mag is detected from a blood test, i asked my dr if i had the anti mag type and she said no. I read through all of my blood tests (between hers and my labs from mayo i have had an extensive amount of labwork) i didnt see anything that specifically said “anti-mag” but she is extremly thorough, so since she said no, one of the tests i have had must have shown her that.
    I dont know if the anti-mag responds to sct or not.,
    there are some types of cidp that get worse with steroids.
    ——i find the problem with the symptoms being so slowly progressive that it is often difficult to tell sometimes if things are better or worse. Like you, i thought i was improvimg on the ivig at one time, only to find out the emg/ncv showed progression.
    how long have you been diagnosed with cidp? i was dxed in june of 2009–a litttle over 3 years ago.

    Lori222
    July 24, 2012 at 3:36 am

    jgl i too just recently started immunosuppressants (rituxin) had no immediate side effects. It is too soon to tell if i will have any long term. I have tried prednisone, it did not work for me. I thought ivig was working because i felt better, but i continued to get weaker and all of my ncv/emg showed the disease slowly progressing.
    I have mainly axonal, some dyminlation type of cidp and have had a sural nerve biopsy to confirm the diagnosis. The nerve biopsy was done under local anethesia, i was able to walk on it immediately after. There was pain in that area for a few weeks when i flexed my foot, not unbearable, completely gone after a week or so. There is more numbness in that area of my foot in a small area beside my outer ankle bone.
    A second opinion is always a good idea, especially if you do not have a definite diagnosis. my own Dr recommended it for me and set me up with Dr Dyck at the Mayo. Hopefully the prednisone will work for you but if it doesnt just know there are other treatments available. It’s just a matter of finding what works for you.

    Lori222
    July 24, 2012 at 3:07 am

    it’s been over 2 months since my last ivig–have not got any worse without it. Still a little soon to get full effects of rituxin from what i have read and been told. energy is good, a lot less fatigue since my 2 infusions. feelings of slight pain where i usually had numbness in my ankle areas. Feet are strange, they feel more numb some days but no weaker?? I wonder if there are varying stages of numbness even during healing? But even though they are numb, they are very sensitive if i step on things, and i still feel little jolts of occasional pain in them.
    I read back through soapys rituxin journal and he also referred to the foot numbness quite often. I do know my veins have enjoyed the break from the way less infusions with rituxin.

    Lori222
    July 18, 2012 at 12:57 am

    glad you are doing well wendy, must be nice to have the sct behind you and now just wait for the healing 🙂 Yes I finished my 1st series of rituxin june 14th……just a wait and see time right now. If it works i will have 2 more infusions in 6 months,then 2 more in 6 months again, then i will be done. there was really no side effects for me from it (so far) so if it works, great!!! if not I am applying for sct. My next dr appt is in september so i will decide then.
    But —back to you…i followed your blog. glad you are feeling better. what did you mean by your bloodwork coming back normal—that your counts were back up from the chemo? or did you have an abnormal anti-body like i do, that may be causing the cidp?

    Lori222
    July 17, 2012 at 2:32 am

    possibly her age??? you mentioned 80’s. A lot of these treatments are harsh, maybe too much for someone her age. You didnt mention her current health other than the cidp, that may be a reason too.
    She could always ask her Dr why he is choosing not to treat her cidp and if she doesnt agree, find another Dr.

    Lori222
    July 17, 2012 at 2:26 am

    thanks everyone 🙂 I hope so linda, but it’s still early. Even though i feel less fatigued and better internally- I still havent had significant strength increase. If it doesnt work I am applying for the sct—–and will take you up on your offer to come hang out with me there!!!
    I am really hoping this does it though. I should really know for sure around mid september.

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