Flossie

Your Replies

  • June 16, 2009 at 3:34 pm

    Stacey,

    I am sending hugs and prayers to you and Connor.

    I don’t know if it is the same thing but my 26 year old son has always run hitting the ball of his foot first and then his heel. It never occured to me to mention it to his doctor. I hated standing around ball fields so for sport we had him in karate for 7 years – it allowed him to succeed at his own pace while still “belonging” to a group (and I could wait in an indoor chair).

    I am so sorry for your worries,
    Flossie

    June 4, 2009 at 8:29 am

    Linda,

    My doctor said to cut the big Lidoderm patches into quarters.

    I used them again last night on the soles of my feet and I honestly think it helped me get comfortable enough to sleep well. The discomfort is still there but greatly diminished. I am going on vacation tomorrow and taking them with me so I can over indulge in sight seeing.

    I hope they work for you.
    Flossie

    June 3, 2009 at 10:31 am

    Linda,

    Thanks for your sympathy. I was feeling unusually down even though I am actually doing very well (and taking antidepressants). My neurologist was thrilled that I was able to take a 3 miles (and 3 hours) hike in Muir Woods while we were on vacation in California last month.

    Yesterday for the first time my doctor came right out and said I will probably never get off the prednisone. I had always hoped I could slowly reduce the steroids to nothing. However this year he is not even going to attempt to get me below 13 mg every other day.

    I have excellent day time pain control with Lyrica. Last night for the first time I tried Lidoderm (lidocaine) patches on my feet for that nasty burning sensation. It might only be the placebo effect of such an expensive medication but I was mostly comfortable last night. My neurologist is wonderful about treating pain.

    It is good to know that there is finally an “on label” treatment for CIDP. Thanks to you and Fred for telling me about the gammunex study.

    Flossie

    June 3, 2009 at 1:38 am

    I had my check up today. My neurologist said there was not a new treatment for CIDP.

    Sigh. After ten years I am soooo done with this thing. I got really excited at the prospect of a new magic bullet for CIDP.

    Flossie

    May 30, 2009 at 8:27 pm

    Fred,

    Wow! What a great story. Thanks for writing.

    After 10 years of being treated solely with prednisone I was distressed to have to try IVIG (not a needle lover!). Then, the infusion was slow to help and I was discouraged.

    However, it has been almost a year and I am still capable of most daily activities that don’t require fine motor control. My doctor was brand specific on his IVIG order and the insurance company tried a little fussy paperwork to get him to change. I sure am glad my neurologist deserves the pedestal I have always put him on.

    Thanks for letting us know about your research and your good results.
    Flossie

    May 28, 2009 at 4:41 pm

    I have a routine check up on Tuesday with my neurologist here in Alabama.

    The good news is that my only IVIG was Gammunex. It did work wonderfully although slowly.

    But that means the bad news is that there is probably not a new magic bullet out there for CIDP.

    Sigh. I’ll ask anyway.
    Flossie

    October 4, 2008 at 4:45 pm

    Interesting. I would like to hear more when you have collected information.

    When I was first diagnosed with CIDP 8 years ago the forum had a lot of members who were trying various diets and supplements. I found that adding grape seed extract to my very conservative supplement program really did make a noticable difference in how I felt. I still had CIDP – but I felt much stronger and energized.

    I now take a commercial antioxidant pill that includes grape seed extract as well as grape skin, green tea, curcurim, etc along with a multivitamin and other supplements.

    Thanks for your research,
    Flossie

    March 20, 2008 at 2:21 pm

    Norb,

    Thanks for taking the time to post this information on this forum too.

    I have printed it out for a quick reference guide.

    Flossie

    January 10, 2008 at 5:58 pm

    Liz,

    I know the exact sensations you are feeling. It’s such a nasty circle of fidgeting to get comfortable – but the fidgeting kept me from getting quality sleep.

    Now I take 1 or 2 50mg capsules of Nortriptylin (Pamelor) with my evening meal so that they are awash in my bloodstream when I go to bed. This is a really inexpensive, old drug that helps with nerve pain, is a sleeping pill and an antidepressant. My Lyrica has my day time discomfort well under control – I just need help getting relaxed enough to sleep.

    It did not work immediately so give it a couple of weeks. It is not a heavy duty sleeping pill so once you are used to it there shouldn’t be any problem if you are needed in the middle of the night.

    Sweet dreams,
    Flossie

    December 3, 2007 at 8:03 pm

    grawplr,

    If you needed glasses you would wear them. If you needed insulin you would learn to take the shots. It sounds to me like you need the correct dosage of the appropriate antidepressant. Once you have become accustomed to the proper pills you should not be in any excessive mental fog. Of course this assumes you find a practitioner you trust.

    I have no medical proof but I have always thought that CIDP causes depression. Not just situational distress – but actual biochemical changes in our bodies.

    Please reconsider your distain of “happy pills”.
    —————————————————

    I have been diagnosed with CIDP for 8 years. Over time almost all my friends have scurried on with their lives and I don’t mind. To have a friend you must be a friend – and I just don’t have the energy to be involved in group activities. Lots of days just getting dressed is a major accomplishment for me.

    The folks here on the forum are probably the only people who truly understand your frustrations. Most people can’t understand an invisible illness like CIDP. If you have stressors in your life that you cannot avoid, then you need to give yourself permission to actively ask for help. If there are people who you must constantly remind of your limitations then perhaps you should consider distancing yourself from them. There’s no rule that says family can’t be jerks.

    You need to conserve your “good” times for your child.
    ————————————————–

    Before I hop down from my soap box, I would like to encourage you to consider nutritional supplements to be certain that you are giving your body adequate resources for fighting the CIDP. This is a really steressful time of year even for healthy people.
    [url]http://www.gbs-cidp.org/forums/showthread.php?t=126&highlight=supplements[/url]

    Warm hugs,
    Flossie

    August 20, 2007 at 6:54 pm

    Hi Monica,

    Methyl B 12 sublingual lozenges have helped some folks with their CIDP symptoms even if they don’t have a diagnosis of a B12 deficiency. Plus they taste really good.

    However, you need to base your supplement program on a good quality multivitamin. Taking large amounts of any one supplement is not as good as a well-balanced multiple pill approach based on your own particular symptoms and CIDP progression.

    There is no magic pill that will cure CIDP. But you might find significant relief from some symptoms if you add appropriate supplements to a healthy diet.

    Good luck,
    Flossie

    August 18, 2007 at 9:45 pm

    Hi Alex,

    My CIDP has been treated with only prednisone for 7 years. My only side effect is a permanent 20 lb weight gain. (I also take Lyrica for pain.)

    Within weeks of starting the prednisone my foot drop was corrected, my coordination and stength increased and my pain diminished. My neurologist has me taking as low a dose as possible; unfortunately every time I catch a cold I have to return to a high dose and start the decreasing dosage schedule all over again.

    You do need to be aware of the possible side effects, while realizing that not everyone gets all or even any of them. You will need regular checkups of your eyes and bones. Plus you will need to carefully watch your diet (avoiding the “whites” as much as possible – salt, sugar, fat, bread).

    I am very lucky that prednisone has helped so long. And it is good to know that I can try other treatments when the steroids no longer work.

    Good luck,
    Flossie

    June 30, 2007 at 5:02 pm

    Miami Girl,

    You really NEED to get professional advise about your prednisone taper – especially since it makes you so sick. Your new doctor sounds worse than a jerk. However someone at the clinic should be able to give you a safe taper schedule over the phone. Or perhaps your pharmacist can call for you.

    Here is the standard taper taught to WUSTL medical students.

    [url]http://www.neuro.wustl.edu/neuromuscular/antibody/pnimdem.html#cidprx[/url]

    o Prednisone: 60 to 100 mg/day p.o., then taper
    + Start taper after: 3 to 6 months; or clinical improvement begins
    + Taper slowly
    1. Initially by 5 mg on alternate days q2 to 4 weeks until 80 mg and 10 mg
    2. Then by 2.5 mg on alternate days q2 weeks to 80 mg and 0 mg
    3. Then taper high day dose by 5 mg q 4 weeks until 40 mg and 0 mg
    4. Then by 2.5 mg q4 weeks
    ……………………………….

    Because I have been on steroids so long I am a fanatic about sticking to my neurologist’s instructions. I hope someone else with prednisone experience similar to yours can give you better guidance about stopping. Maybe you should start a thread of your own in order to get their attention.

    I am packing for a 2 week vacation so I may not be back on line again for a while. Please, please, be very careful about reducing the prednisone.

    Flossie

    June 30, 2007 at 2:38 am

    Ack!! I understand you want to get off steroids. They certainly were not your friend.

    However, you must wean from prednisone – not go off it cold turkey. Insist your doctor give you a safe taper schedule to follow.

    —————————————————
    [url]http://www.classkids.org/library/pred.htm[/url]
    Q: Why must prednisone be weaned slowly instead of just stopping abruptly?

    A: The adrenal gland, which makes natural steroid hormones for the body, is suppressed by long term prednisone administration. Due to inactivity, it may atrophy (shrink). Since some steroid hormones are necessary for life, abruptly stopping prednisone may leave one without any steroids at all, a life-threatening condition known as “Addisonian crisis.” The symptoms of this are low blood pressure, nausea and vomiting, and severe weakness.

    Given time, if the adrenal is stimulated to produce steroids by gradually reducing the dosage of prednisone, it will usually begin to wake up and produce natural steroids in most cases.
    ————————————-

    I applaud your determination to eat healthy foods and to do research into supplements. You may be interested in my post from May 20, 2006:
    [url]http://www.gbs-cidp.org/forums/showthread.php?t=126&highlight=supplements[/url]

    There are a lot of other posts from folks who have also tried non traditional methods to help with their CIDP symptoms. There is a search button at the top of the thread.

    Good luck on your SLOW escape from prednisone,
    Flossie

    June 29, 2007 at 8:04 pm

    When I was first diagnosed I always took 2 copies of my list of questions. I gave one copy to the nurse who updated my chart so that my doctor would see them before he entered the room. I kept the other copy right in my hand because I am the type of person who forgets important questions until after the doctor leaves the room. (I also have my husband come with me into the exam room so he can hear the answers too. CIDP has turned my brain to mush.)

    I don’t honestly think my doctor deliberated about my questions before he entered my room. But I felt better seeing them attached to the chart. He knew I expected quality answers to specific, well thought out questions.

    If the neurologist is the one who wants changes then it is your right to insist on explanations. There are some people who do not want to be involved in their medical decisions. Perhaps your doctor does not realize that you have educated yourself about CIDP in order to be actively involved.

    I think Kelly’s idea of standing in front of the doorway is an excellent suggestion.

    Good luck,
    Flossie