Your Replies

  • September 13, 2011 at 12:57 pm

    Was not familiar with the ABN, but will now check it out. When I asked my doctor about medicare coverage, he said have to “make a case” for the PE treatments, but did not mention the ABN, nor that medicare would tell the provider if a procedure would be covered.
    Will also check out the link provided. Thanks for the feed back.

    September 12, 2011 at 7:26 pm

    Thanks for the response. Medicare supplemental pays the deductible and co-payments for medicare approved services, which is where the problem is. Medicare will not tell you up front if a procedure is covered, thus you do not know about either coverage until after the services are used.
    This is why I am hopeful someone has been down this road and knows first hand about PE coverage.
    Unfortunately, IVIG hasn’t worked for me in the past on a consistent basis. I did get some short term relief using the Gamunex brand (other brands had no effect) for about a year, but heart problems forced me to discontinue it.
    You would think medicare would have a pre-cert division like private insurance, but I guess that would be too efficient for the government.

    March 15, 2011 at 7:56 pm

    Hi Mongo,

    I’m a long term user of prednisone and know the symptoms well. Pulse doses have greatly reduced the side effects for me. No weight gain, very seldom get the shakes, etc., but do have sleep difficulties which have been solved for me with a little blue pill, Halcion .025 mg. Old school drug which few doctors prescribe, but it is cheap and effective for me. Prednison and PE have been my life line since ’96, so I can’t be critical of the drug. Before the pulse doses, I was on 60 mg a day for about a year and a half and the side effects were pretty bad.
    For 2 years, every three weeks, I got a 3 liter PE followed by 500 mg solumedrol, then 100 grams of gamunex the day after PE which stablized things. Since December, I only get 500 mg solumedrol three days in a row every three weeks and my symptoms remain stablized.
    But, as you have read in the forum posts, we all respond differently to the various treatments. Keep after it.

    March 15, 2011 at 7:34 pm

    I have had success with Prednisone. Have been on and off of it for about 15 years. First, remember that all CIDP patients do not respond the same to the various treatments.

    Usually see positive a reaction from the high dose (500mg) iv prednisone within 24-48 hours. Get a real energy surge that lasts up to several weeks. The oral I took, 60mg/day, took several weeks to give me any relief, but the side effects were not so hot(gained over 40 pounds and puffed up like a toad). Side effects are also a concern with daily steroid use over long term. Liver and kidney.

    After about a year and a half I went off oral prednison and began PE with IV solumedrol infusion which worked for me many years. Frequency varied from 5 days in a row, to 3 times a week, then weekly, monthly and at one point was able to go 4-6 months between treatments. When PE alone failed to stop the progression, doctor switched me to Gamunex, PE and IV solumedrol. After nearly two years of Gamunex, PE amd IV prednisone every three weeks, my condition stablized and my neuro decided to try maintain with just IV prednisone. Since December, I take 500mg IV solumedrol three days in a row, every three weeks. So far, so good. Am still
    able to function as well as I did with the combination of treatments, at a fraction of the cost. Again, this is how I react to steroids and I hope they do the same for you.

    While IVIG works for many, my experience was not very successful. That said, I did get some help from Gamunex as stated above. We tried this brand because it is amino acid processing vs other brands which use glucose base.

    The post about the quick changes of treatments seems spot on. Usually PE is done 3-5 days in a row, then, depending on the response, weekly, bi-weekly or other time frames. My response to PE a couple of weeks. IVIG also takes some time to see results and usually has a high dose load at the beginning of the therapy.

    Pulse steroids do not pose the same risks a daily oral use, but side effects still have to be monitored. Ask your doctor about high pulse doses of Prednisone IV as an option to oral. Your response should be much quicker and you will know fairly quickly if steroids are going to help you. Hope this helps.

    February 16, 2011 at 6:12 pm

    Hi Jason and Barbara,
    Is your current Hershey doctor at Hershey Medical Center Neurology department? My brother lives in Hershey and is a Penn med school grad and is friends with many of the doctors at HMC. If Dr. Lowden is not at HMC let me know an I will see who he might suggest.

    A second consideration could be a treatment consult with Dr. Carol Koski at the University of Maryland Medical center in Baltimore. She is on the GBS/CIDP board and is a top doc for these diseases. I traveled from Georgia to see her to confirm my diagnosis and proposed treatment options. The 90 minute drive from Hershey to Baltimore might be a good investment if you can get in to see her.
    There have been a number of posts about cytoxin and its success for some who were having problems walking. I have been up and down over the years and tried cytoxin when I could barely walk and had success for about a year, then body no longer reacted, so we moved on to other options.

    As you will find on this site, everyone responds differently to the various treatments, so you have to have a doctor who understands the disease and is willing to try the various treatments or combination of treatments. To me, risk was not a factor. Having had GBS in ’85 and knowing total paralysis, took the risk factor out of the equation. This is a personal decision that only you can make.

    Sometimes one is medication not enough. Every three weeks for the past two years I have been on 100 grams of Gamunex (glycine based ivig), followed the next day with plasmaphersis, 3 liter albumin exchange, and a 500mg iv solumedrol infusion. In addition, I have been on cellcept since ’96. It took this combination to stop my latest flare, but again, this is how my body responded.

    Good luck with your doctor search, and let me know if I can try to get you a neuro name at HMC.

    February 16, 2011 at 5:13 pm

    I have been taking plasma exchanges off and since 1996. Have had over 400 exchanges without problems. The procedure takes approximately 90-120 minutes depending on how many liters of albumin the exchange involves. Most doctors suggest a central line be used, however I was unable to have any long term success with them as all five of mine became infected despite the steril maintanance steps, heprin flushes, etc. The past two years plus, I have have my exchanges using vein punctures with 18 guage needles. Had them every three weeks, and veins are still in great shape. The Red Cross did all of my pp’s in a hospital out patient setting. As a side note, while the access line has to be in the annicubical (sp?), the return line can be a 22 gauge angio cath which can be put pretty much in any other vein which allows the access line to alternate arms. Nurses don’t like to do it, but it works fine.

    Not everyone is as fortunate as I have been with their veins and have no choice but to go to to a central line. The Red Cross nurses have been telling me about a newer port the is placed under the skin and is accessed with a special needle. Being under the skin, the risk of infection is virtually eliminated. I do try to care for my veins to minimize scar tissue by putting ice packs on the puncture sites for 20-30 minutes at least 3-4 times before bed the day of the procedure. After that, I rub the puncture sites with either vitamin E cream or coco butter every day. My doctor is amazed that they can still use my veins and at the small amount of scar tissue. The Red Cross nurses are also surprised at the lack of scar tissue.

    As far as the procedure itself, there is no pain (other than the needle sticks-I hate needles), but this can be eliminated by spraying the puncture site with Lidocaine spray just before the stick, or putting Lidocain cream on the puncture site about an hour prior to the procedure. The only side effect I had was during my very first exchange. My B/P dropped and I fainted. Since then no problems. I also take bata blockers to slow heart rate for cardio problems (seven stints) but the PP has no effects on heart or B/P, only the first time.

    I have been on over a dozen treatment protocals over the years, and found plasma exchange to always be the most effective in stopping the progression. Frequency of the exchanges was based on the severity of the flare and ranged from daily to weekly, monthly, etc. The past two years I had been taking 100 grams of Gamunex (a glycine based ivig vs others which are glucose based) followed the next day by a 3 liter plasma exchange, then an iv infusion of 500 mg solumedrol. This combination worked very well for me. In December, my doctor and I decided to stop the plasma exchanges and Gamunex for a while to give my veins a rest, and switch to steriods. Currently getting 500 mg solumedrol iv 3 days in a row monthly. Mid month I take 4 days oral prednisone, 20 mg,and seem to be holding my own past three months.

    Everyone responds differently to the various medications and treatment protocols, so you have to be your own patient advocate and work with your doctor to find the treatment that works best for you. Many of the treatments members posting have had success with, have not worked for me, so be persistent until you find what works for you. Keep up your spirits and stay after it.

    January 16, 2011 at 11:18 am

    Thanks Laurel. I didn’t think about pm and will try that.

    January 15, 2011 at 2:47 pm

    Don’t forget, Gamunex brand of IVIG is FDA approved to treat CIDP. Should be very hard for your insurance company to decline this since it is a “label use”, not an “off label” use as is with other brands. I had the same initial response, but when we used the FDA approved for CIDP response, got immediate approval.
    Good luck to you.

    December 10, 2010 at 8:30 pm

    Just a thought, but Gamunex was FDA approved in September 2008 for the treatment of CIDP, so it is a label use drug. I have never taken other brands of IVIG so I don’t know if they have FDA usage approval for CIDP. Would this make a difference with BCBS?

    October 28, 2010 at 4:35 pm

    Dick says it all. I had GBS in 85, with total paralysis, so I’ve been through all of the emotions you have vented, as have most on this site. Unlike most others, I got round 2 with the CIDP dx in 96, so I pretty much knew what to expect, but it was no easier the second time around. I pushed and pushed, until one day I chose to make some life changes. Took medical disability and within weeks the reduction of stress improved my quality of life tremendously. Found I had the energy to do things with my family. Because of the GBS, my family knew the similarities of CIDP and are very supportive, and understand there are days when I simply can’t do things with them. I get frustrated some days, but no anger as it only eats away at you. But when I can, I take full advantage of the good days which makes the bad days easier to handle. I have been blessed with a wife of 47 years who has stood by me not once, but twice. She has had more than her share of “the worse” part of our vows, and I thank her every day for her physical and moral support. Hope your family will understand the disease and be supportive. Best of luck, and always be thankful the things you can do, and don’t dwell on those that you can’t.

    October 28, 2010 at 4:11 pm

    The rate of infusion can have a lot to do with the side effect. Initially they ran my Gamunex at a 300 rate, but side effects were bad so we slowed to 200 and no further problems. For pre-meds I get two tylenol, two benadryl and 125 mg IV solumedrol, 30 minutes prior. Good luck with future infusions.

    October 18, 2010 at 11:28 am

    Hi Lori,

    I’ve been on both over the years, approaching 500 plasma exchanges now, and nearly two years into the latest efforts with IVIG.
    As I am sure you have read on this site, everyone tends to respond differently to each of the various treatments, so you have to find the one that work best for you.
    When diagnosed in ’96, I was immediately put on IVIG with no success. Then shifted to PE and I responded right away, so for me, there was a big difference. Over the years I have been on everything talked about on the site, plus three of the MS drugs. My treatment always seems to come back to PE and Prednisone, which, over the years has been my silver ‘bullet”. When things get really bad, I get 500 mg solumedrol IV 3 days in a row and that stops any progression. Currently I get get PE every three weeks, followed by 500 mg IV solumedrol, then the following day I take 100 grams of Gamunex (brand specific). Doing this for the past 20 months and things have been pretty good. I am fortunate to have good veins, so I don’t have a cath. Takes about 3 hours for the PE.
    Again, everyone responds differently to these treatments, but for me, PE has definitely produced better results than IVIG. From a cost standpoint, PE runs about $1,800 and the Gamunex is about $18,000 each time. Good luck to you and I hope you can find what works best for you.

    October 5, 2010 at 11:41 am

    Gamunex is processed with amino acid, no sugar products. My doctor required brand specific because of this and insurance approved it. The hospital orders it in for me every three weeks. I’ve been on it nearly two years with good results and virtually no side effects. I get 100 grams every three weeks infused at a rate of 250. Gamunex was FDA approved for CIDP in September of 2008. You may want to research this as with going from a brand name drug to the same drug in generic form many times causes reactions and does not give the same result. The different compounds used to make a drug sometimes does not allow the body to absorb it the same way. Keep after them.

    October 5, 2010 at 11:27 am

    I have been fighting CIDP since 1996 and have had many ups and downs as we all do. Have tried pretty much every treatment you read about on this site as well as many of the MS drugs.
    We all respond differently to each treatment , so it is important to work with your doctor to consider different treatments and/or combinations of treatments untitl you find the one that works for you.
    Currently my routine is PE every three weeks followed with a 500 mg dosage of solumedrol then the next day I get 100 grams of Gamunex. Has held me pretty steady for almost two years now, but I did have a major setback three weeks ago. My doctor immediately put me on a very high dose of oral prednisone for one week and what a difference. I went from dragging my left foot and barely able to walk on my own, to being able to drive a 1300 mile vacation trip last week. For me it have been “a silver bullet” every time I get into trouble. As I said, not everyone reacts to these drugs the same.
    I did have cateracts(?) but surgery fixed them.
    Generally, if I do not respond to the week of oral prednisone, then I get three days of 500mg methoprednisone IV. I am 67, so I can relate to the age thing.
    Hope this information is of some help to you. Keep plugging away and stay positive.

    August 2, 2010 at 3:12 pm

    I have been taking Gamunex for about 18 months now and never had saline prior to infusions. My doc and infusion nurses say plenty of fluid intake the day before the infusion helps veins “pop up” and accept med better. Take pre-meds 30 minutes prior to Gamunex: benadryl, 125mg iv solumedrol and 2 tylenol. They use a small amount of saline to flush the iv. Have had no problems. Good luck.