Cytoxan, PE, and prednasone

    • Anonymous
      September 23, 2010 at 10:34 am

      I had my pasma exchange Monday morning. Always wipes me out, but I get an energy boost day 2 and although a lot of symptoms do not disappear I do see hope. On weds I did my first round of chemotherapy. 2000 mg per treatment. First 4 treatments spread out at two week intervals. Infusion took 4 hours.
      Infelt okay during procedure and made it with no nausea until about 6 hrs after treatment. Eat soft foods or meal replacements if you aree expierancing vomiting. This morning I feel like I have the flu but am getting ready to go to work.
      I hope and pray that we just slow this disease down. Small improvements so I can continue to work.

      I will do updates between treatments

      So I have done ivig tried prednasone, plasma exchane on it’s own and now the cocktail

      All of the above.

      Take care and bless you all. Keep up the great fight. Gods Speed

    • Anonymous
      September 27, 2010 at 7:03 pm

      Day 5 after first round. Stomac has settled down. Did follow up blood works and went to the gym for a workout. Body feels beat up and except for the sick feeling the last 5 days there is no change in how I feel or pain levels. I guess I want instant. Thursday is prednasone and plasma exchange. Day 11 is supposed to be when white blood cell count bottoms out. The truth is that since I first started losing use of my legs and hands I am scared of the outcome. This is the push to stop this thing from spreading. I will update this weekend

    • Anonymous
      September 27, 2010 at 9:38 pm

      Thanks for updating us Dieno. I have a couple of questions if you don’t mind. Do you have a hematologist or rheumatologist involved with you to monitor the cytoxan? I ask this because my husband has CIDP-MADSAM and when he was put on Immuran he got sepsis, and we didn’t have anyone monitoring other than the neurologist who was totally unavailable for any real monitoring (ie. when he got so ill and was hospitalized, she just referred him back to his family doctor. And the family doctor had no experience with immunosuppressants. So he felt like he was thrown to the wolves concerning the Immuran.) I just wonder if you have a protocol with the Cytoxan if you have problems or symptoms that are worrisome. Can you access a doctor quickly if need be? Did you get instructions what to watch for? Those kind of things are of interest to us. Hubby’s doctor is once again pushing for Cellcept, and we are reluctant due to past bad experience. With hubby the push for Cellcept comes down to the cost factor of the IVIG that he takes every 3 weeks. The government monitors closely IVIG costs and really pushes neurologists to get patients off it asap –even when it is working well. Any info. that you can share would be appreciated.

    • Anonymous
      September 27, 2010 at 10:20 pm

      My husband was diagnosed with GBS in July and he underwent 5 IVIG’s but never got any better. Three weeks ago he went through another 5 IVIG’s and still nothing so far. The doctor mentioned chemo to us the other day but we’re so unsure. Did you do any of the IVIG’s and did it make a difference if you did? I just wish we could see some kind of improvement at all…So frustrating !!!!!:confused:

    • Anonymous
      September 28, 2010 at 12:32 am

      Hi to both. I started with prednasone for a year with no improvement at all and we then went on a two year ivig program. It never made me feel better but it slowed down the progress of the disease. My last round of ivig was December 2009 and it did nothing. My neurologist tried to get me rituxaman but we could not get approval and four months ago the disease had returned full force causing me loss of use in both legs and into my hands
      We booked plasma exchanges at the start of august as we battled to try and get rituxaman. Again with no success. Two weeks ago I had no choice but to try cytoxan. I do have both a hematologist, a neurologist and a family doctor who I have known for over 20 years.
      My results are monitored by all three physicans.
      I was warned of all the possible side effects I have read a ton and am aware that the cure might end up as bad as the disease. Our hope right now is that we can slow this down until we get approval for rituxaman. As well my neurologist is looking into stem cell treatment, but I believe that is a pipe dream at this point
      We are combining prednasone by iv weekly, weekly plasma exchane and cytoxan bi monthly. I have now requested we throw in ivig as my immune system should be wiped clean withing two more treatments and we can try and kick start it with clean juice.
      I know this sounds stereo typical but we are unique as this disease and I believe the treatment for this disease is as unique as the person as it has effected

      I did not think the chemotherapy would be as rough as itnis, I dropped 7 pounds last week but have kept my first meal down tonite
      I pushed for a ton of medicines for nausea control and mouth rinse for the sores that can occur from the cytoxan
      Weight wise I am okay, I have a few extra pounds I can stand to lose and believe if I take in whole foods and good protien should be able to protect as much muscle mass as possible

      I have set some goals during treatment and am blessed that my work has just put me on temporary disability as my treatments take three days ofneach week. My focus is going to be health, my health, my well being

      My wife is incredible and to be truthful I started cytoxan because of my love for her. I will go through any thing to spend an extra day with her

      I will answer any thing else I missed, please send me a note

      Cheers. Ric

    • Anonymous
      September 28, 2010 at 12:40 pm

      Ric thanks for answering my questions. How old were you when diagnosed? Did you have any underlying conditions such as irritable bowel?

    • Anonymous
      September 28, 2010 at 3:07 pm

      Hi laurel. I was 40 when symptoms appeared. I was diagnosed almost 3 years later. Went through 3 neurologists until 1 clued in
      I have no other under lying issues

    • Anonymous
      September 30, 2010 at 7:25 pm

      Day 8 second dose of steroids and plasma exchange. No real change. Pain is less. Thanks to the steroids I think but it was for a few days last week then came back strong at day 6. Blood tests done white count down a little should bottom on day 11. The new thing is we are going to do another infusion of cytoxan on day 15. With my rapid deterioration we want to fully wipe out my system asap.
      Last day of work tomorrow then on short term disability. That is a kick. Got new canes ordered one classic black and one with flames lol. The little things

    • Anonymous
      October 3, 2010 at 6:40 pm

      Well here I am at day 11. I have little energy. Am good for two hours then need to rest. Not been at the gym for 4 days but am going tomorrow format least an hour. Legs weak disease seems to be progressing still. Treatment again on Thursday.

    • Anonymous
      October 3, 2010 at 7:22 pm

      Maybe the leg weakness is the Cytoxan side effect and not the CIDP? Get lots of rest and don’t overdo things–as you mentioned day 11 would be when the WBC’s would bottom out.

    • Anonymous
      October 3, 2010 at 11:24 pm

      I am confused…are you doing the stem cell transplant with high dose cytoxan, or merely cytoxan infusions? If it is the latter, you will need time for it to work. Back in 2003 when I very experimentally did this treatment, I began cytoxan infusions (a 5 day loading dose in 10 days) then monthly infusions for 8 more months. Treatment was halted when my WBC count got to near zero. I could tell that my CIDP was arrested aafter about 4-5 months. Then I allowed 2 years of healing to get to where I eventually stopped getting better. This is not a quick treatment like IVIG is for some people, rather a long process.

    • Anonymous
      October 4, 2010 at 12:02 am

      Thanks Pam. I appreciate the info. Have you regained use of any of the damaged areas? Has the cidp reversed or is it stopped completely?

    • Anonymous
      October 4, 2010 at 8:26 am

      I was a very severe case & had been that way for 9 months when I began the cyoxan infusions. Hadn’t walked at all, virtually no use of my hands, couldn’t raise my arms or legs off of the bed, etc… After the cyoxan, & some time to wait healing, I can walk now with AFOs, I got about 70% of the use of my hands back, I can drive again & I feel like I lead a pretty good life. I still have the fatigue issues, but have been stable since the summer of 2004. The biggest thing is I haven’t needed any treatments since my last cytoxan infusion in Sept. of 2003. But you need to be very patient, this is a very slow process, nerves can take up to 2 years to heal & any axonal damage will not come back. My permanent damage is mostly in my feet, although all 4 limbs are definitely weaker than they were before CIDP.

    • Anonymous
      October 4, 2010 at 10:02 am

      Pam. Thanks again. My damage is quite severe and my left side is far worse. Patience is going to be my new friend. The fatigue is the worse thing as it stops so much of our lives. It is the one symptom I wanted to know would go away

    • Anonymous
      October 4, 2010 at 10:16 am

      My husband has right sided damage–atrophied right hand, right forearm, and foot drop in the right foot. He has lots of axonal damage which is irreparable but the IVIG seems to be preventing more damage, and fatigue is one of the biggest diabling issues for him. He takes Alertec which helps considerably.

    • Anonymous
      October 6, 2010 at 10:08 am

      Well here we are at day 13. I feel a bit better fatigue wise but that could be due to going on medical leave last week and not having the stress of work.
      Going to play some poker, work out a bit and relax. Plasma exchange Friday and sumadrel today. Chemo Tuesday. 2000 mg of cytoxan. Worse side effects besides typical nausea and lower intestinal distress was some mouth sores we got under control
      Cytoxan defined is cell kill. Hmmmmm pretty appropriate

    • Anonymous
      October 7, 2010 at 12:12 am

      Before my cytoxan infusions, which were 1800 mg a month, I was first given my solumedrol infusions & then some Zofran in my IV. The only time I experienced nausea was when my solumedrol infusion wasn’t given for some reason. Have you tried getting them at the same time?

    • Anonymous
      October 7, 2010 at 10:08 am

      Pam. I do my cytoxan and solumdral on one day and my plasma exchane on the next. Thisvweek I am doing both on the same day. See if it works. It ends up bieng a full 7 hr day in the hospital plasma exchange is 4 hrs and cytoxan and steroids 3 plus

    • Anonymous
      October 9, 2010 at 1:22 pm

      Ric, just wondering how you are after the heavy duty treatment this week? Hope all is well with you.

    • October 10, 2010 at 3:14 pm

      its nice to read the posts of others experiences before doing them myself–have ben following your posts. I am currently coming off the prednisone –which did nothing for me and am increasing my ivig treatments to every six weeks for 6 treatments. If this is not successful then will try pe–so I am a few steps behind you on the treatments. Wishing you success with your current one : ) Lori

    • Anonymous
      October 10, 2010 at 3:43 pm

      Lori222, I see in the new GBS/CIDP newsletter that Dr. Gareth Parry talks about giving oral methylprednisolone 500 mg. weekly and he says “have found that almost all patients improved and more than 50% are in complete remission”. I wonder if you tried that sort of regimen?

    • Anonymous
      October 13, 2010 at 12:35 pm

      Side effects of chemo kicking in a bit. Starting hair loss. I will wait as long as I can but the bald look might be my winter fashion statement
      No improvements. Really fatigued. Rest and relax I guess. Next infusion on October 20th.

    • Anonymous
      October 13, 2010 at 8:36 pm

      Geez that hair loss is a bugger! I was hoping to hear that you felt some improvement, but it probably takes more time. Keep us posted Ric as we are rooting for you.

    • October 14, 2010 at 8:00 pm

      [QUOTE=laurel]Lori222, I see in the new GBS/CIDP newsletter that Dr. Gareth Parry talks about giving oral methylprednisolone 500 mg. weekly and he says “have found that almost all patients improved and more than 50% are in complete remission”. I wonder if you tried that sort of regimen?

      Nope the only things i’ve tried are the Ivig and the 50 mg of regular pill type prednisone. The prednisone didnt help me–acyually made my feet and ankles feel weaker–i wondered about pred myopathy?? im tapering off now–down to 20. next plan is to increase ivig to every 6 weeks–was every 12. Is the methlpred good for people who were not successful with ther regular pred? Lori

    • Anonymous
      October 14, 2010 at 8:59 pm

      Lori, I think the high dose once a week oral methylprednisone is supposed to minimize all the side effects of taking daily doses of prednisone. There are still side effects but I think they hope to avoid things like moon face and some of other side effects. And I think they are feeling it just works better that way.

    • Anonymous
      October 18, 2010 at 7:02 pm

      Good news bad news scenario…
      Because the disease is still progressing quite rapidly we are increasing Plasma Exchange to twice a week, and increasing my dosage of Sumadrol. Along with that an increase in CYTOXAN to 3 gram every three weeks.
      Symptoms now include progression on my face and in my throat. Gag reflex now severely diminished.
      So this week I have PE on Tuesday and Friday, CYTOXAN and Sumadrol on Weds, Lumbar Puncture on Thursday and full Skeletal Survey.
      I have to say at this point I hate this disease!
      So, the bad news is so far we can not stop it, the good news is we are “going all in” (to steal a poker phrase) and hoping it stops.

    • Anonymous
      October 18, 2010 at 9:46 pm

      Hi Ric,
      Holy smokes what a battle you are having! It almost sounds like a GBS attack, but there are members here that have had the same with CIDP. I guess there isn’t any chance that the BC Medical Plan would deem you a perfect candidate for stem cell transplant and send you down to Chicago? In the end it would save them money since it would likely cure you. Anyway, I am very sorry that things are going so badly.

    • Anonymous
      October 18, 2010 at 9:53 pm

      Just thought of a question Ric. You are taking Solumedral, and people with Multifocal Motor Neuopathy get significantly worse with the corticosteroids. Is there any chance that you have MMN instead of CIDP? I gather that sometimes it is really difficult to definitely diagnose motor forms of CIDP versus MMN.

    • Anonymous
      October 19, 2010 at 1:01 am

      We thought about that but it is not following the right pattern as it started in my legs not hands and arms. As well I have lost sensation in feetvand now left hand and part of my face. We are doing two pe a week chemo every two weeks and weekly somudrel and hope we knock the crap out of it. WBC countbis now at 3.5. So it is dropping. Just gotta hang on

    • Anonymous
      October 20, 2010 at 9:36 am

      Increased plasma exchange from 3 pints to 5 pints. Chemo today is at 30000 mg rather than 2000 mg
      Felt less wiped out this morning after increased dosage of plasma exchange and some numbness from face gone.

    • Anonymous
      October 20, 2010 at 7:34 pm

      Ric that is some change for the better. How do you cope with driving into the city so many times a week for treatment? When my husband did two days a week once a month, he got exhausted with the drive. Now he is going into Peace Arch and life is so much easier, but unfortunately it wouldn’t work for you with the PE and chemo. being specialized. I hope things improve for you in a big way soon.

    • Anonymous
      October 20, 2010 at 8:18 pm

      Thanks laurel. Drive is okay. I get rest during treatments. Chemo was long today. Hope I get through it okay. Take care