PE or chemo

    • Anonymous
      August 9, 2010 at 4:03 pm

      My neuro has stated PE is the next step, I have had failed IVIG. I have read so many of your posts on how effective chemo has been. Please let me know your experiences, and do I tell my Dr. I would rather have chemo? Thanks so much for your input.

    • Anonymous
      August 9, 2010 at 8:57 pm

      Over the last 23 mos., I’ve had IVIG, steroids (3 different ones), Plasma Pheresis, & 4 mos. in a rehab hospital. I can’t say any of this significantly helped with the disease. Some of the treatment may have slowed it some, but who’s to say?
      About half way through I lost faith in my Doc. I went for two other opinions from out of state specialists. They said my Doc was treating me wrong. I switched Doctors. My current Doc continued with the correct conventional treatments, but as I said, no great improvements.
      Now, to answer your question. You should certainly ask your Doc about Chemo. IMO. He may not know the latest or he has a good reason to hold back. Chemo (cytoxan) was MY miricle drug. My very first treatment gave me wonderful results. My numbness was up into my chest. Now it’s gone, except my calves are about 50% and my feet are still totally numb. My strength has vastly improved also. I just had my 4th treatment a wk. ago. The Doctor is mulling over weather or not I’ll have the remaining two they origninally said I would have. They don’t want to weaken my bones any more than is necessary.
      Hope this helps. Burt

      PS I’m a 64 year old male. DXed 9/08

    • Anonymous
      August 9, 2010 at 10:04 pm

      I have also tried everything, Ivig, steroids and PE, i then asked my neuro about chemo (Cytoxin), he said usually you have to fail at at least 3 other therapy’s. I was one of the worst patients with cidp that my cidp specialist has seen. About 8 months ago i was in a chair and could barely move, when i started chemo within the first treatment i could get up on my hands and knees on my bed..this was a big milestone for me since i was diagnosed almost 2 years ago. i went through 6 months of chemo every 3 weeks and physical therapy. I am now walking with only 1 afo on my right leg and just finished pt and am now going back to school on campus next week.
      So yes chemo was also my miracle drug. I wouldn’t look back at all.
      I hope this helps you out a lot, and good luck with what ever you do.

    • Anonymous
      August 10, 2010 at 1:16 am

      Part of the goal in any treatment is to do no harm. That is why IVIg and corticosteroids (for a short duration) are typically used first — they generally cause the least amount of harm. If those fail, then plasmapheresis is the next thing to try, because, while more invasive, it is unlikely to cause long-term damage. If it fails, then immunosuppressants are the next choice, usually in combination with one of the other therapies. These include a range of drugs, azathioprine being an example, that have varying toxicity. Beyond these are the chemotherapy agents, where the goal is to try to change the immune system on a permanent basis. While that goal is the ideal, the drugs that can effect such a change, like cytoxan, are quite toxic in other ways.

      As Burt and Ryan said, they tried everything before moving on to cytoxan. In their cases, it has worked wonderfully. Still, I think it would be a good idea to follow the procession from least to most harm.

      Godspeed in finding a suitable treatment,

    • August 10, 2010 at 3:21 am

      Hi Carol,
      I’m sure glad you posted. I rarely get a PM and I just happened to notice you sent me one two weeks age. I apologize for the delay and I dont know if you received my answer. I’m a bit technologically challenged.
      Here’s my info: I live in Nevada and my nerve and muscle biopsy was done here. My Neuro sent it to Salt Lake for a second opinion.
      Dr. Kevin M. Flanigan, M.D. did a diagnostic evaluation of the specimen at the Department of Pathology in the University of Utah Health Science Center,
      Perhaps a second opinion would be in order for you. Also contact
      [email][/email] for a neuro in your area.
      We are all different in our sypmtoms and in our response to various treatments.
      I will send prayers and positive energy your way and I hope you get better and stronger and reinvigorated with the challenges of this complicated disease.

    • Anonymous
      August 24, 2010 at 12:32 pm

      New to posting.
      I was diagnosed two years after the first sign that something was not right appeared. My family doctor has been brilliant, helping me push for answers. My Neurologist that I now(went through 4) have is brilliant, and has done everything possible to help with treatments and the short and long range effects of this disease.
      At this point I have gone through prednisone treatments and two years of IVIG, and last week started Plasma Exchange. We are waiting for approval of Rituxan, and are hoping to start my first round by mid September.
      Well P.E. is not reversing the disease I do believe it has slowed down its aggressiveness.
      My diagnosis is not great: I currently am still working, but have lost complete use of my left foot, calf, and hamstrings. The disease has also gone into my right leg with severe drop foot, and in my left arm and right side of my face. I have a slight drop in my face, with “tremors” on a regular basis. Weakness in my left hand and arm is becoming evident, and muscle atrophy in my lower legs, and now arm are very distinguishable.
      The good news is that although the disease is spreading rapidly I had a lot of muscle throughout my body, and my legs were very heavily muscled. This has allowed me to continue to walk with assistance only from canes, and occasionally from my wife. Going down stairs is my greatest fear, as falling down is far more terrifying than falling up!
      Plasma Exchange to date has been the most effective route in making me “feel better”. I do not believe it is reversing the condtions created by the disease, and the slow down might be strictly in my head as I am desperate for any signs of improvement.
      Do yourself a favor and keep accurate records of any improvements. Set some goals for yourself, a workout in the gym, a short walk with a loved one, preparing a meal without falling asleep right after finishing.
      More than all of that take charge of your body! No matter how drained I am I make time for the gym, some days great, some not. I have found ways to balance my body against benches during workouts, and I am trying my best to keep as much muscle as possible over the next 12-18 months.
      As my days shorten, as tremors start throughout my chest, and other areas of my body I keep my intake of pain medication to a limit. My employer has been great as far as my work schedule, and I know at some point will be off on long term disability.
      Be honest with yourself, your loved ones, and doctors! Do not say your improving if your not, however if you show any sign of improvement shout it from the roof top, claim your victory against this horrific infliction!

      All of that to say this: don’t give up. Whether it is P.E., Chemo, or Stem Cell-fight, don’t let this thing win, and if you feel like it is take a deep breath, call someone, hug someone, or just go stand on a lawn with no shoes on and remember how incredible it feels.

      Take care and keep on the good fighting

    • August 24, 2010 at 9:37 pm

      Dieno—Great advice—loved the post:) 🙂 Lori