New Member-Long-term sufferer
AnonymousFebruary 8, 2007 at 6:47 pm
I have just found this website but have had this disease (we think) for over four years. Because I have been through quite a bit of diagnosis and treatment, my experience could be helpful to some of you.
My symptoms began in 2003 (at the age of 45) with weakness in one foot and many other rheumatological symptoms such as swollen wrists (first diagnosed as carpal tunnel) numbness in hands and feet, Raynaud’s in hands and feet, and some general fatigue. I didn’t seek medical attention until summer of 2004 when walking became difficult. My first neurologist did all the standard tests, EMG, nerve conduction, spinal tap, diagnosed lower motor neuron disease (basically early stage of ALS) but thought I did not fit the classic presentation of ALS. So he referred me to the the Mayo Clinic in Rochester (I live in San Diego).
Before going to Mayo, I saw an excellent rheumatologist/immunologist who found I had profoundly elevated ANA levels. He was certain the autoimmune disease and the neurological condition were related, while my neurologist considered them to be “co-morbidities.” He got me started on immune suppression with oral prednisone and cellcept. I had some stabilization with these drugs.
The neurologists at Mayo also concluded that I had lower motor neuron disease, but felt it very likely could be immune mediated, so they sent me home and ordered aggressive steriod treatment through weekly IV infusions once a week for 12 weeks. It didn’t help, and when I returned to Mayo they said there was nothing more they could do, and to prepare myself for ALS.
Returning home I decided to register with the ALS clinic at UCSD. At my first visit, the wonderful doctors there spent nearly three hours with me and felt quite strongly that I did not have ALS. This was a year ago, and by then I was limited to about 30 yards walking at a time. I was given the diagnosis of CIDP (although my symptoms do not quite match exactly) and started me on IVIG, which I have been getting now for 11 months. I have had some response, but I continue to decline. I am now confined to a wheelchair, but I do not consider myself disabled and I continue to work.
During the IVIG, I also tried plasmapharesis, which actually set me back. Last fall we tried high-dose tacrolimus, which did not work and actually caused severe tremors and some weakness in my hands.
So, after a bit of a battle with my insurance company, I got my first dose of rituxan (1000 mg) last week and will get another next week. I am told this is the protocol for its use in autoimmune diseases. We will then wait a few months to see if there is any effect. I continue to get IVIG, and take cellcept and prednisone. My doctors consider cytoxan to be an absolute last resort because of its toxicity.
I hope this information is helpful and I will post the results of the rituxan because it is of critical importance to everyoe with this condition.
AnonymousFebruary 9, 2007 at 3:12 pm
Welcome to the site and to our family. You have been through so very much. We have 2 people on the forum, at least, who also went through all the normal treatments with little luck (IVIG, PP, Steroids etc) and later moved on to the ones you mentioned Rituxan and others. I hope that they see this and respond, I think it would be great for you to be able to talk with them and hear their struggles and eventual success. Don’t give up hope and come back often, we are here to help however we can.
AnonymousFebruary 9, 2007 at 4:14 pm
Welcome to our forum. It was very interesting to read your story. Please keep us updated on how you treatment and general situation are developing during the comming months.
I brought up the [B]”CIDP – Rituxan treatment”[/B] thread for you – hope you will find it relevant and interesting.
In the meantime I will just wish you good luck on your way towards the light at the end of the tunnel! For me this light gets brighter almost on a daily basis, but of course with an occational “rainy day” now and then.:)
AnonymousFebruary 10, 2007 at 12:52 am
I just want to welcome you to the forum & we hope to hear a lot from you. I am glad to hear that you are getting rituxan, as it has helped some of our members here with CIDP. But I was surprised by your doctor’s comment on cytoxan, as it saved my life. As to the toxicity, it is the same chemotherapy drug used to treat breast cancer. When I asked my neurologist why more people with CIDP don’t use it for treatment, he said they are scared by the word chemotherapy itself.
Anyways, as you probably read my post on the rituxan thread, it was a lifesaver for me, as I had been a patient at the Mayo in MN for 3 months almost totally paralyzed & they told me I was terminal, that there was nothing they could do to stop the progression. That was in the summer of 2002. I wish they could see me now, so they could eat their words, as cytoxan gave me back a fairly normal life. Feel free to email me if you have any questions…
AnonymousFebruary 26, 2007 at 3:29 pm
Sorry to hear about another CIDP sufferer, but glad to here you’re “next door”.
And your doctor is the same as mine when it came to my final dx back in January06, of CIDP, though had gone through hell for three years back until they came up with that final dx.
I moved to Oceanside just two years ago, come in from the Poinsettia area of Carlsbad. We had a house overlooking the ocean, but I couldn’t take all the light there as it came in all sides of the house with many windows, (I have photophobia associated with the CIDP/Horner’s Syndrome), so we moved to a darker house, and my bedroom now looks onto a covered patio with very little light, much to my liking, though those views of the ocean were very nice. ah well…
My current doctor is Dr. Sahagian, who is the chief neurologist at Tri-City Hospital. With my insurance, I can use either Scripps Encinitas or Tri-City, and have been in both, and find both comparable in services and staff–very good.
Prior to moving to Poinsettia, I had lived in La Jolla, and was with the “Scripps Group”, which had me using Scripps Green Hospital, of which to me was a hell-pit–they did so many mistakes, that I kept a diary of them. And one time when I was a patient at Scripps Encinitas, they sent me down by ambulance to UCSD-Hillcrest, which was a very scary place, very old and they had a fire on different floors while I was there, due to renovations, though the staff was very good.
When my neuro couldn’t come up with my final diagnosis, he sent me to his teacher in med school, which happened to be your doctor, Dr. Sheean, who apparently only deals with rare neuro diseases, and it was with him I got my final dx: CIDP with Lewis-Summer variant, (asymetrical).
I went through the normal protocols for CIDP, (high-dose steroid, then IVIG), without any benefit. I have now been on a monthly weeklong plasmaphereses and with cellcept for about one year now. It has helped my motor nerves, and I can walk short distances, using the wheelchair for long distances. But the CIDP progressed into my autonomic system, (small fiber atrophy), and is ravaging my guts.
My doctor told me before, that he was keeping back some last-resort meds to use, that have very bad side-effects. I just wonder when he plans on using them??? My primary care doctor and my pulmonologist both told me this past summer, after a very bad flair this past summer that hospitalized me, that I probably have only two years left since the diaphragm is affected, and a lung infection will do me in after becoming too weak to fight it off.
Last week, my neuro told me he wants me to see Dr. Sheean again to see if he has any ideas to stop the ravage through my guts (autonomic system).
I am betting Dr Sheean will put me on the rituxan, that I have been reading many posts about, and see that you have been on it.
WHAT SIDE-EFFECTS HAVE YOU EXPERIENCED?
Last week I received two units of blood, as anemia comes on alot. I also have great fatigue from both the CIDP and the anemia. I am also have difficulty now with the digestive system, and swallowing process, so I have a myriad of pills for these problems. All in all, I take about 18 pills three times daily, due to the CIDP keeping on hitting different organs in my guts. They even have me only Marijuana pills to help control nausea and stimulate eating.
I see we are near in age, (I just turned 51 last week), and I was a hippy back in my teenagehood, so I am laughing my head off that now I am taking the MJ legally…LOL! But, I actually don’t like to take it that much, as I don’t want to be a zombie every day, and like a clear mind whenever possible…ah well…
So, Grant, give me a shout, and tell me how you are/have been doing…
All the best,
KEn DAvid SOden
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