Lori222

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  • November 23, 2012 at 3:10 am

    Ann   that is interesting info on the emg test—-so if the screen is jumping and making all those static noises when we are not flexing the muscle, is that a sign that the cidp is still active?  I never really knew what caused all that noise and static.

    As for age, im not sure what the age requirements are for sct.  I am 48  and have no health issues other than the cidp, so I think thats fine for the requirements. My only concern is that my cidp is considered atypical.

    November 23, 2012 at 3:01 am

    thank you Ann for sharing your rituxin experience.  I have never had physical therapy, I do find standing in one spot very hard and my balance is bad.

    I agree –it is very hard to judge ones own progress, especially due to good days–bad days–stress just from having this disease, etc all make it difficult.  I haven’t had an emg/ncv since my rituxin infusions (June).   I’m confused because I keep having strange sensations where I normally had numbness–but I’m not really gaining strength.  I do feel I need another emg/ncv just to rest my mind on what is going on.  If I’m continuing to get slowly worse  as I was with the other treatments then I definitely want to apply for sct.

    GH–thank you for responding.  My Dr feels since the sct is still in the clinical trial phase, that it is dangerous and may lead to cancer down the road?? Dr Dyck from Mayo is where i got my second cidp confirmation, when i asked him, his response was something about “taking a nuclear bomb to an anthill” in other words, he felt it too drastic.  I really don’t care if I get cancer “down the road” if it means having a few more good years with full use of my legs.

    It is easy for them to sit back and try all these “less invasive” approaches because it is not their life that is going by wasting time in infusion rooms, not being able to do the things they enjoy. Plus not ever really being treatment free.  I wish i had applied for the sct instead of  trying rituxin and been done by now. Now that Ive done the rituxin, I feel I should at least see if it’s going to work, but it’s been 5 months—seems like there should be some significant changes by now if there was going to be.

    November 21, 2012 at 9:28 pm

    sorry to hear of  the accident Gary—I wish you and your wife a speedy recovery.  Despite all you are going through

    I hope you have a nice Thanksgiving with your family.

    November 14, 2012 at 3:43 am

    hi fred–good to hear from you.   So you had 1000mg, 4 weeks in a row?   mine was 1000mg 2x, 2 wks apart. then if i can get this insurance thing figured out i will have it again in january. did you have any problem getting insurance coverage?

    I have been 6 months without ivig–and have not gotten worse.  As far as improvement, I do have more energy, but unless Im just expecting too much too soon—I dont have any significant strength increase in my calves and feet yet.   My Dr has said the rituxin takes a while, and I know nerves heal very slowly so im trying to be patient.  Then, i guess even though they may possibly be healing, I may not notice  it until it innervates the affected muscle.

    My cidp is considered atypical too—-glad to know i am in the norm as far as cidp  goes–lol

    How long has it been since you have had ivig?  I hope it works for you. It can take a while to start working so be patient.  There was a few times in the beginning that i felt it wasnt working and that i needed ivig, but i think it was more fatigue and not actual weakness, i waited it out and have not had any ivig since the rituxin.

    I still have some days where i feel i have more numbness. Im doing more because i feel better, then when i overdo it, i get the fatigue and more numbness.

    i have feelings of pain in my ankles and feet where there was only numbness, i am hopeful that these feelings are the nerves reawakening.   best of luck with it—-keep me posted,  im interested in how it works for you.

    November 14, 2012 at 3:15 am

    bny  I find regular massages, and chiropractic adjustments both very helpful.  I think we get pain in parts of our bodies that may be overworked trying to compensate for the areas weakened from the cidp.

    November 11, 2012 at 12:33 am

    very interesting Kelly.   i wonder if research in this area will lead to more b cell depletion therapy like rituxin for auto-immune diseases.

    November 10, 2012 at 12:22 am

    When I had IVIG  it was always in a hospital infusion room.    Is the reason for doing it at ones home for convenience or price?  I was never given the option, so the topic never came up.

    November 9, 2012 at 12:14 am

    cathebt ,      yes i tried  the ivig weekly as you asked above.  my ivig regiman was:  loading dose (2gm per kg) every 12 weeks for about a year and a half.  no improvement. loading dose again every 6 weeks , still no improvement..

    I went to Mayo in Mn to see Dr Dyck. he set my ivig up similar to what you mention above. I went 2 days per week for 4 weeks then 1 day per week for 12 weeks.  Still no improvement.    hopefully you will have better luck with it—it has worked for a lot of people.

    Dr Dyck felt the weekly schedule of less ivig kept it at a more stabile level in the body than the less frequent infusions of more ivig.

    October 31, 2012 at 8:48 pm

    the ivig, plasma x/c, or  prednisone did not work for me.  I’m currently trying rituxin (an immunosuppressant).  In my case, I feel like my brain and feet are connecting fine, but my feet are just too weak to keep up with  the rest of me. I have internal energy and lots of things i want to do—but i feel like my weak feet and calves are just not doing their part.

    I have another friend, not on the board yet that im aware of.  She mentioned the same thing you said about feeling like her brain and feet are not connecting. She’s not yet diagnosed but did mention something about ganglion root???  I don’t have any info on it for you–sorry, but thought of that when you mentioned the brain/feet comment.       Regarding your comment above—you are sick, don’t feel useless.

    October 31, 2012 at 2:21 am

    The lumbar puncture really is not painful at all.  It does sound scary because its i the spine but it was less painful than some of my iv’s for ivig.   One thing I didnt know when I got my lumbar puncture, was that women who are  of menstruating age are prone to getting a spinal headache from the procedure.  It is a very painful headache—hard to describe.  Caffeine gave me the most pain relief from this type of headache.

    the 5 day loading dose is the most common starting dose for ivig, the amount is based on your body weight.  if you are young and in otherwise good health you can get the same amount of ivig over 2 days instead of 5. I opted for this schedule due to kids, work, etc. i had no problem with getting it in the two days.  Had many loading doses following this schedule without side effects.  good luck at your appointment.

    October 30, 2012 at 3:16 am

    4 1/2 months post rituxin.  walking has felt a little easier, not significant– but better.  still not able to walk on heels or toes.

    definitely have not got any worse and have been 5 months without ivig.  less fatigue, now have pain in nerves that were usually numb, not bad pain, no need for any pain relievers, sort of pains letting me know those nerves are still there. I prefer the pain over the numbness.

    last lab tests showed b cell depletion, cd 19 and 20  depleted—-which i am told is good.   My nerve damage is more axonal than dyminilating. axons heal at an extremely slow rate.  Hoping this rituxin is going to halt the attack on my nerves, but right now I am still in the “wait and see” phase which we cidpers are all too familiar with.

    still in appeal process with my insurance company, hoping it will be cleared up before next doseage is due.

    October 16, 2012 at 2:17 am

    Bny–I wasn’t told that a flu shot would cause any harm, i believe it was because the ivig  has flu antibodies in it.

    October 16, 2012 at 1:45 am

    I have not got flu shots since getting cidp–i never got them before either.    I didnt think you were suppose to get them while on ivig??? Check with your doctor, they probably all have their own opinion on it.   Glad to hear from you, I was wondering how you were doing 🙂

    October 10, 2012 at 2:40 am

    Raymond,lot’s of good info there on the immune system—-guess i will have to do some googling—which i have done tons of since getting this crap. yes, i had read the itialian artical on rituxin.

    my igg and igm are high, not extremely, but above the normal limits.  The rest are all normal. i dont have any other diagnosis except the cidp. my symptoms are numbness and weakness in the calves and feet.  The antibody i have is VGKC, which may or may not be a  prelude for cancer. i have had a thorough work-up and no cancer detected. I have never seen an immunologist, only neuro-muscular.

    I think the Drs and hospital who administered my rituxin just assumed insurance would cover–as i did–because i had failed the other treatments , it is a lot less expensive than the ivig, and immunosuppressants were the next step.  i  guess the mistake was–none of us realized the insurance company wanted to select which immuno. for me to use–and i took the drs choice instead.

    October 9, 2012 at 2:48 am

    hi Raymond—yes, getting something like this after being used to being active, athletic and healthy is difficult, but try not to get too discouraged, the stress only aggrevates the symptoms more. -trying to get an accurate diagnosis can be very frustrating.   What are your symptoms—are they typical cidp ones?

    You may get more responses from others on the board if you start a new thread with your questions, others may not be reading your post because it’s posted here under mine about rituxin.

    As for the insurance I have a ppo anthem plan, pretty pricy plan-i pay for it myself as i own and operate a small business. This is one reason why it makes me so mad they are trying to not cover the rituxin–i know exactly what i pay them for myself, family and employees and it’s not cheap.  I am still in the appeal process right now, so Im not sure if it will be covered or not. I just hope to get it all figured out before my next rituxin infusion comes due.    Its so stupid of them to not cover, the rituxin is a fraction of the price as the loading doses of ivig i was previously getting every 6 weeks and it’s not given very often.  At first my dr said again in six months, but she’s discovering that some people can go even longer, dont need another infusion until the cd19 and 20 cells of the immune system start coming back—some people it takes 9 months.

    yes, i live in Maine. saco river is beautiful, did you go whitewater rafting there, or to a calmer part of the river for canoeing?  I go to the Lahey clinic in burlington MA. the dr is Srinivasan, she is a neuro-muscular dr.  I noticed with your drs listed above you didnt mention a neurologist, thats why i asked what your symptoms were.

    i also went out to the mayo clinic in Minnesota to see Dr Dyck and had a very thorough work up there to confirm the cidp diagnosis. i even had the  sural nerve biopsy, just because i wanted a definite diagnosis before putting all this toxic crap in my body to alter the immune system.

    you may be able to get rituxin with a confirmed RA diagnosis, they are using it for that.  I kinda wish my dr could find some lymphoma or something , so i wont have to fight my insurance company for the rituxin.

    have you read up on the stem cell transplant, where you have tried and failed so many treatments.  but, im sure you would definitely want a confirmed auto-immune diagnosis before doing that.

    have you had an emg/ncv test? seems that test should help with your disability if it showed extensive nerve damage.  good luck with your disability hearing, sounds like you are preparing well for it.

    isnt it so annoying that we have to fight so hard for things like that and insurance coverage, after paying for it for our whole working life?    Its really irritating to me, but if i were to be unmarried and have a child the government would be throwing all this free stuff at me–its such a messed up system.                              Lori