New Treatment

    • Anonymous
      January 20, 2009 at 11:21 am

      Well, after 2 years, ready to try something new. My neurologist has already tried ivIG, plasma pheresis and cotdisone with no improvement. Have gone to now walking with a walker. Neurologist wants to try cyclophosphamide. Has anyone had experience with this drug?



    • Anonymous
      January 20, 2009 at 5:58 pm

      I have never had this treatment but am sure someone will come along that has at least heard of it. Don’t give up, there is something out there that will help. good luck and God bless.

    • Anonymous
      January 20, 2009 at 7:44 pm

      Hi Neighbor Ken,

      I don’t know much about the new treatment other than it on the list of things to try. Are you still going out to Hershey Medical??

      Once a couple of failed treatment options occur, sometimes I heard of the doctors going to PET scan or Bone scan to make sure nothing is going on
      in the bone. Have there been any discussions there?

      Best of Luck Ken.–tim–

    • Anonymous
      January 20, 2009 at 8:33 pm

      Ken, I have heard a lot about cyclophosfamide or cyclophosphamide or (occassionally cyclofosfamide)–better known as cytoxan! It is an older immunosuppressant that has been used for many, many years with autoimmune diseases like lupus, severe rheumatologic diseases and inflammation of kidneys with threatened kidney failure, MS, and myasthenia gravis. It is also a chemotherapy drug and is used in a lot of different kinds of cancers. I know it from working with children with cancer and autoimmune problems. I have never had it myself. Cytoxan reduces the cells that produce antibody. Side effects are nausea/vomiting, temporary loss of hair, irritation of the bladder (need to get lots of fluid when taking this), decrease blood counts with decrease in ability to fight infections, and if one gets a lot of it (high doses as used in cancer not the lower doses for autoimmune diseases) it can affect the ability to have children in the future (sterility). One good thing about it is that it is strong and works pretty fast to suppress the immune system. It is not a bad drug, but it is chemotherapy so is pretty drastic. At the symposium, there was discussion that imuran is used more frequently in CIDP (although it is slower to work that cytoxan). There also was discussion that Rituxan (rituximab) may work in as many as 50% of cases with CIDP and it is not so hard on the body. Rituxan is very expensive and not officially “approved” for CIDP and so many insurance companies may argue or deny it. One of the things to think about with cytoxan is that it may work to suppress the disease activity, but since you cannot keep taking cytoxan for long periods of time–it is too hard, it has to stop the disease process enough so that the immune system is reset. It is hard to get this right in a disease process as variable as CIDP. Personally, I might encourage you to ask about rituximab–it seems to have a somewhat better record in CIDP (although not used as much) and it is gentler.

      It is worth saying that immunoglobulin, steroids, and plasmapheresis as believed mainly to act to hold the disease under control while the body heals itself. Cytoxan or rituximab are attempts to “cure” the disease by making the immune system reset. There are positive things about being proactive not passive.
      WithHope for a cure of these diseases

    • Anonymous
      January 20, 2009 at 9:48 pm

      Hi Tim,

      Yes, still going to Hershey. They already did bone survey, nerve and muscle biopsy, abdominal fat pad biopsy, colonoscopy with stain for amaloids, spinal tap, cat scans, etc. He was thinking amyloidosis since I also have severe weight loss, chronic diarrhea, purple lesions on arms and hands and of course the severe neuropathy. All tests were negative, so he now wants to try a stronger chemo. Hopefully it will work as I had a strangulated hernia in November and after the surgery I couldn’t walk at all. Spent 2 weeks in hospital, 3 weeks at the Good Shepherd rehab center and the last 3 weeks here at Blaire house rehab. Almost have my strength back enough to walk again with a walker. Hopefully home soon.

      Good luck with your ivIG treatment – hopefully it will work for you.

      Take care

      [QUOTE=TJRPT6]Hi Neighbor Ken,

      I don’t know much about the new treatment other than it on the list of things to try. Are you still going out to Hershey Medical??

      Once a couple of failed treatment options occur, sometimes I heard of the doctors going to PET scan or Bone scan to make sure nothing is going on
      in the bone. Have there been any discussions there?

      Best of Luck Ken.–tim–[/QUOTE]

    • Anonymous
      January 21, 2009 at 12:47 am

      Have you been tested for either celiac disease or vitamin E deficiency? Celiac disease is associated with neuropathy and diarrhea or intestinal problems and there can be a lot of weight loss. People with chronic diarrhea may not absorb vitamins–especially the fat soluable ones like vitamin E, D, K, and A– well due to malabsorption. Being low on vitamin E or vitamin K can cause purple spots on the skin from bleeding into the skin/fragility. Being low on vitamin E or D can cause neuropathy (as will vitamin B12 deficiency that also can occur with malabsorption). The good thing about vitamin deficiencies is that one can correct these and get BETTER especially if they can figure out what is causing you to be low to stop the loss, but with replacement anyway. Vitamin E is being given to protect from neuropathy caused by some kinds of chemotherapy. Simple blood tests can look at the levels of vitamin E, D, K, or to test for celiac disease. Celiac disease is not that rare and stopping eating wheat and some other grains (gluten) can help the intestinal part of it. Other forms of inflammatory bowel disease can cause diarrhea, weight loss, and malabsorption, but it would be expected that the colonoscopy would have seen them–but celiac disease can be hard to detect other than the anti-gliaden antibodies or small bowel biopsy (which is done going down from the mouth through the stomach not from below). Since you have impressive intestinal concerns and neuropathy, ask your doctor about celiac disease and about malabsorption caused vitamin deficiencies. Again, if it were any of these, the problem can be TREATED and there may be reversal of some of the problems in the gut and nerves.
      WithHope for a cure of these diseases

    • Anonymous
      January 21, 2009 at 6:39 am

      Hi Ken,

      It looks like they are way on top of it and I am sure they will get you some answers. Hershey is really good. I have heard of many doctors going there for their own problems. You are in Great Hands out there.

      If there is no smoking gun to be found, perhaps the new drug will take care of
      things. Hang in there Ken.–tim–

    • Anonymous
      January 21, 2009 at 9:05 am

      Ken I received cytoxan Sept 07-Dec. 07. I have CIDP and then was diagnosed with breast cancer. I attribute the cytoxan to my recovery from CIDP. I went from wheelchair to walking unassisted in about 4 months. I had 6 treatments of cytoxan along with other chemo drugs. I did lose my hair but it has since grown back. I never had any nausea to speak of. (Drugs can do wonders these days!) If you have any specific questions please feel free to ask. Good luck to you if this is the path chosen.

    • Anonymous
      January 22, 2009 at 11:52 am

      you might look into this:

      i am going there on february 11th for an evaluation and tests– hoping to qualify.

      in this trial, they use this drug prior to stem cell transplantation…


    • Anonymous
      January 22, 2009 at 11:53 am

      Hi Ken,
      My name is also Ken.
      I have had CIDP for a few years now, on a steady decline. I also went through the normal protocol of treatments for CIDP, (high steroid doses, IVIG, Plasmapheresis), to no avail.
      My CIDP hit my autonomic system, which it sounds duplicate to the same problems you are running in to. This can be confirmed by a skin biopsy, of which if the result shows small nerve atrophy, it means it can hit your autonomic system. As the years have gone by, the CIDP has hit the nerves controlling the various organs. And as it hits each organ, the list of my medications I must take gets longer and longer.
      It hit the nerves controlling the heart, and ended up with tachycardia–I take a pill daily to keep my heart rate down. It hit the phrenic nerve which controls the diaphragm, thus ended up with shallow breathing. It hit my nerves controlling the stomach, thus when food would come into the stomach, it would just sit there as the nerves controlling the stomach were deadened and the stomach could not act–this is called gastroparesis, (they did all the tests to confirm)–I take three kinds of pills now to get my stomach to work. It also hit the nerves controlling my swallowing process, (they did the Swallow Tests at the hospital to confirm this).
      This is called dysphagia and esophageal dysmotility. When that was confirmed, I was also losing a lot of weight due to the stomach and swallowing problems with great loss of appetite and nausea, to the point where the doctors said if I went below 165 pounds, they were going to put a feeding tube in. This is where they put me on Megase which stimulates the appetite, and Marinol, (is THC a derivative of Marijuana), which also stimulates the appetite and decreases nausea. They also gave me Tigan to also help the nausea. With the use of those three meds, as well as the stomach meds, I started gaining weight again. I also have hypothyroidism, of which also decreases appetite, but am on a pill for that, too.
      It also hit the nerves controlling my bladder, ending up with a neurogenic bladder, and have a catheter now. It hit the nerves controlling my bowels, but it went the opposite way that you have–I only “go” about every 7-10 days, sometimes with the help of a laxative or enema.
      In the summer of 2005, of the team of 5 doctors, 2 of them told me I had about two years left to live. Because it hit my phrenic nerve, they told me what will probably happen is that I will get a bad flu or pneumonia, and with the shallow breathing and weakened state, be unable to fight it off.
      So, now I am on borrowed time.

      My Neuro decided to use the last treatment possible–high doses of Cyclophosphamide. So, in August of 2006, he started me on it.
      Since it is chemotherapy, I have to go to my local hospital in the morning, and be admitted to the Ocology Floor for the day. By the way, I am a bad “stick”, and my doctor had a port put in in my chest, so the nurses can use for the chemo IV. Everything be administered is by IV. They first start you off with one bag of fluids via IV. Then they administer Mesna, (the Cyclophosphamide is very harsh on the kidneys and bladder, so they have to administer Mesna which helps the bladder and kidneys). Then they administer Dexatrol, a steroid that helps the chemo work. Then comes a high dose of Zofran, (32mg, which fights nausea). Then comes the chemo. Then more Mesna. Then comes another bag of fluids. They start all this around 930am, and end up finishing around 630pm. It is important that for the next two days that you drink large amounts of fluids because as mentioned, it is so harsh on the kidneys and bladder.
      Exactly fourteen days after the chemo, you must get blood tests, (CBC and blood chemistry), as well as a Urinalysis.
      They especially have to watch your white blood count, as they try to get it as low as possible without going into the danger zone of being too low.
      They had first started me off with 1500mg of Cyclophosphamide, and after two months, increased it to the top dose of 2000mg.
      One time, about 7 months into it, my white blood count went too low, (I think it was about 1.4), and because I had the chickenpox when I was a kid, it came out as shingles. They had to lower my dose of Cyclophosphamide to 1800mg until my white blood count came up a little higher to about 2. They also watch your neutrophils.

      Okay–so I took it for fourteen months. I did not get any better, but did not get any worse, though my arms weakened quite a bit. (I can walk short distances, and use an electric wheelchair for long distances.) It was what my neuro was hoping for, in that I was sort of plateauing. He has told me that because I have a severe case of CIDP, and it hit the autonomic system, that he is doubtful I will get much better, and his hopes is to slow down the worsening of my body’s deterioration.
      When it got to October of 2008, they said they had to stop it for the winter, to give my bone marrow a break. That was three months ago since I had my last dose. They plan to start it up again in April. In November, I started having great fatigue and weakness. My neuro is going to have me try “speed” during the day, to try to keep me awake.

      So, Ken, I hope this answers alot of your questions. From what you have mentioned here, it also sounds like your CIDP is hitting your autonomic system. Way back when I was first diagnosed, of which they did all the neuro nerve tests, multiple spinal taps, multiple MRI’s and CAT scans, (including the new nerve MRI), a nerve biopsy as well as the skin biopsy, the definite diagnosis was CIDP with Lewis-Sumner variant, with small fiber atrophy/Dysautonomia.
      By the way, I also have Horner’s Syndrome from the CIDP, and must see a Neuro-Ophthalmologist every six months, since it affected my eyes, and can get worse as time goes on.

      If you ever want to contact me with any questions or feelings about the situation, feel free to email me or call me. I am in Oceanside, CA, (San Diego County), and can be reached at 760-631-1948,
      or emailed at: [email][/email]
      If you email me, put a priority tag on it, so I will notice it, since I get many emails each day.
      I wish you the best, and hope this helps.

    • Anonymous
      January 22, 2009 at 12:28 pm

      Hi Ken,
      I forgot to mention some things:
      -For pain/neuro pain, I am on Gabapentin and Vicodin, as well as using the Marinol.
      -For bad muscle spasms, I am on Flexeril and Valium, since it was tried with just one or the other, and ended up I had to take both to make the spasms stop, though every now and then, one “sneaks” through.
      -I also had ended up with photophobia, (bad reactions to my eyes from sunlight or strong light), thus getting very bad migraines. I take a new protocol for that, which I have been on now for over a year, of Indocin three times daily.
      Side effects to the Cyclophosphamide:
      -Nausea: The nausea comes and goes. I have Tigan or Zofran to use, (I try Tigan first, as that usually does the trick). For worse case of nausea, where I cannot swallow anything, I have Tigan suppositories.
      -I did loose a good deal of my hair, (I wear a cowboy hat when I go out in public), as well as my hair in my goatee thinned out quite a bit. I was hoping it would mean I wouldn’t have to shave anymore, but unfortunately that didn’t happen, though it did seem to come in slower and found I didn’t have to shave daily–I could go every two to three days without shaving (lol).
      -And keep in mind you have to drink LOTS of fluids at least for 72 hours after being administered the chemo because of the harshness on the bladder and kidneys. The nurses also told me that the urine coming out for at least the 48 hours after being administered the chemo, that your urine is toxic as it contains the chemo drug. So, they said you have to flush the toilet twice after urinating, (with me, it is emptying my catheter bag), and to be sure to use toilet paper to wipe the side of the toilet bowl, so that you make sure no one in your family comes in contact with the urine, in case it had splattered, as it is toxic to anyone.
      -As mentioned in my previous post, when nausea sets in, the appetite greatly decreases, and there are days when I don’t eat anything at all. But, also as previously mentioned, I have the meds to use to try to keep an appetite–the anti-nausea meds, the Megase, and the Marinol.
      If your state allows the use of Marinol, it DEFINITELY is a “feel good” med. Since it is THC, the derivative of Marijuana, I am prescribed one to three pills every four to six hours as needed. I don’t use it that much, since you definitely can get stoned from it. I tried the different doses–1 pill usually is best–it makes me feel better with a slight buzz. Two pills got me stoned. Three pills–well wow it got me stoned for hours and not being able to do much of anything at all. I also notice if I take the Marinol, you “forget” if you are having pain.
      Hope this helps on what to expect…