Lori222
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June 19, 2012 at 1:47 am
congratulations Pat on your acceptance to Northwestern. What perfect timing that you and Linda will be there at the same time!!!
June 19, 2012 at 1:42 amback to work today, luckily the tiredness after the infusion only lasted a few days. Having some achy pain in ankle/foot area which is usually numb. Energy is fine. Waiting is the hardest part—-i hope 6 to 8 weeks passes quickly to know if this is going to work.
June 19, 2012 at 1:37 amvery excited for the new site 🙂 will the private messaging and search features be on the new site? I really miss these two features and hope they will be on it.
June 17, 2012 at 1:39 pm2 days post 2nd infusion. Feeling a little tired and sluggish this weekend, few body aches–nothing major. These are all listed as common rituxin side effects so not too concerned. I have been having strange sensations down my left calve and foot, these are areas that are affected by my cidp and are usually numb feeling. Its not really the electric shock feeling, or pain, it is just this weird sensation like something motorized is on inside my leg. Sorry for the bad explanation, its hard to describe. Maybe one of you has felt it and knows what im trying to describe.
June 17, 2012 at 1:31 pmthank you JoMama for all of your great info. i will let you know how it works for me. I am glad you were able to get back on the rituxin. You mentioned above that you had to stop the rituxin to have dental work—are we not able to have dental work while on it, my dr never mentioned that to me? Someone else on the board in an older post mentioned that her childs dr mentioned something about not playing in the dirt while on rituxin, i have been gardening while on it and you mentioned you had been too? Do you take anything else with the rituxin, i noticed some still do ivig while doing rituxin? I am taking only the rituxin. Do you mind sharing who your dr is? I think i am only the 3rd person my dr has on this for the cidp. Maybe i could give her your drs name if he/she has a lot more experience with it. My dr is Srinivassan at the lahey in burlington MA.
once again thanks for the great info—i hope you continue to improve to 100% 🙂 LoriJune 16, 2012 at 12:54 amauto-immune diseases cause chronic inflammation, longterm–not good for us inflammation. Then there is the good inflammation response, when the inflammation is part of the healing process. most likely those of us with auto immune disorders are dealing with the chronic inflammation. Have you tried anti-inflammatories. I have found when my knee or back is bothering, taking just the average advil dose (2 tabs) throughout the day, even if the pain isnt there, take it reguraly for a day or 2 to keep the inflammation away helps the healing process.
I dont really know if we ever find out exactly what causes the inflammation, it’s the immune systems response to i guess whatever it encounters??? good question, I will have to check back here and see if someone who has more knowledge on it posts.June 15, 2012 at 2:03 pmI dont get actual sciatica pain but have noticed that on days when I overdo it on my feet i will feel the pain elsewhere, knees, lower back etc. I belieive it is due to the weakness in the lower legs, all these other body parts absorb the work and impact that the weaker parts aren’t performing. The cidp is an inflammatory disease as is the sciatica–maybe you have an increase in inflammation. Didnt you recently stop ivig for your cidp? If so maybe that caused an increase in inflammation.
I know people without cidp who suffer from sciatica and they say it is extremely painful. Most of them are on powerful prescription anti-inflammatory pills.June 15, 2012 at 1:45 pmthank you JoMama for the info. Your story is similar to mine. I have done the ivig and plasma x/c both worked but minimaly, didnt hold me for long. I am able to walk unaided ,but slower, and very bad balance. My hands and arms are fine, not affected by the cidp at this point. I still work full time as well–which is good since thats how i maintain my insurance. I was diagnosed and started on ivig in june of 2009 (3 years ago)
I have had two 1000mg infusions of the rituxin in the past two weeks—-i hope it works as well as yours did. If it does work for me I will mention to my Dr of how your dr goes by the cidp symptoms and not the 6 month regimen. I didnt question that when we originally talked because i just thought maybe there was some manufacturers reason why rituxin could only be done every 6 months. From what i have read it seems to be because it is believed the b cells take 6 months to replenish.
Do you just have regular cidp ? Most of the people here on the board who have used rituxin have a different type—anti-mag.
Mine is considered “atypical” cidp but not anti-mag. Normally I don’t have pain, but have noticed some different sensations since the rituxin infusions. Did you get an increase in pain or sensations with the rituxin? LoriJune 14, 2012 at 10:51 pmJoMama—glad you finally got approval for the rituxin. That’a a lot different schedule of ivig then my dr has planned. I think i will share your schedule with her, just to see what she says. mine is 1000mg 2 times 2 weeks apart, then repeat in 6 MONTHS, then again in another 6 months. Does your dr think that you will be on it forever or just for a certain period of time? So how long after you started back on your infusions to get back 50% ? If you dont mind my asking—what was your physical condition before the rituxin as to after? sorry for so many questions, there’s just not a real lot out there about what to expect and how soon for rituxin.
i got my second infusion today, then according to my drs current plan I wont go again for 6 months. Can’t wait to see if i gain strength in my feet/ legs—-my dog’s getting FAT!!!! LOL LoriJune 14, 2012 at 10:36 pmsecond rituxin infusion today. All went well, no side effects, really doesnt seem any different then getting the ivig. entire process took 4 1/2 hours. now it’s just wait and see how it’s going to work.
Normally i would have been 4 weeks into my every 6 week ivig infusion and would be feeling quite fatigued by now. I have noticed more energy–less fatigue since my first rituxin infusion. I hope thats a sign that my immune system is calming from the rituxin. I hope it works–my veins could really use the 6 month break from needles!!
Thank you all again for the prayers and well wishes, it means a lot 🙂June 14, 2012 at 10:23 pmno it’s not easy. i was having a hard time with “treatable” and really want “cureable” something where i won’t have to plan on it being lifelong. That was one of the things i took into consideration when i made the decision to try rituxin. It’s 6 infusions in 18 months if it works like my Dr hopes. I agree….i can’t help but always think how wonderful my life would be if i could just get rid of this and get more strength back in my legs. At this point I wont even care if Im unable to run or ski again—I would just like walking to be easy again, have a normal gait, and be able to stand in one spot without wobbling.
Did something go wrong at your infusion, or were you just having “a moment” I try to stay strong most of the time—but sometimes those ” why me –crying moments” take over.June 14, 2012 at 3:11 amda.y 13—fascilations have stopped today. My feet which are usually numb are now feeling a vague feeling of pain in the toes and along the top. It is different than nerve pain, not shooting or stabbing just a steady feeling there. I don’t feel this is a bad thing, since im feeling more energetic and no loss of strength. it actually feels good just to feel anything after the numbness. No strength increase, walking still slow and difficult.
June 14, 2012 at 3:03 amI went to Mayo and found it to be a worthwhile trip. I was going for a second opinion—i would not hesitate at all to go there for a diagnosis. I saw Dr Dyck (James) there’s 2, father and son.
Bny—-YeSSSS on the whole stress comment!! I have been told how stress is so bad for our immune systems, etc…..but the biggest stressor in my life is this cidp. If i wasn’t dealing with this, i really can’t think of anything else i would be stressed about.
mothering, work , exercise are all things i enjoy, don’t know why dr’s would think these things are stressful……obviously because they are not living life with cidp. LoriJune 14, 2012 at 2:53 amJomama did you get your rituxin approval? I think using the fact that it worked for you in the past, it is less expensive than ivig, and less infusions than ivig should all be very good points to file an appeal if necessary. Plus you could throw in the fact that you are able to work full time with rituxin use and fear disability if denied.
When on rituxin were you on the 1000mg 2x every 6 months? i recently started it two weeks ago—can’t wait to see if it’s going to work. I saw your comment about it taking 6 weeks for you. How significant was your improvement in those 6 weeks? LoriJune 13, 2012 at 9:43 amI went though extensive cancer testing as a cause for my cidp. It was due to having an antibody show up in my bloodwork that may or may not be an indicator of cancer. Cidp/nerve damage can precede the actual cancer by as much as 3 years. In my case they have been unable to find any cancer yet.
