Lori222
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June 12, 2012 at 3:00 am
11 days since first rituxin infusion. Have had more internal energy–less fatigue. Sensory has changed some in feet, hard to explain, even though they are numb still they feel different??? I guess something only those of you experiencing sensory loss will understand.
A lot more fascilations, mainly on both legs in the inner knee area, which is strange since its below my knees—calves and feet affected by the cidp. Hopefully this isn’t the cidp spreading upward. feet still very old, but calves do not seem as cold–then again weather has been a little warmer too. Other than that not much change. I didnt really expect any this soon, so no disappointment yet. I was reading a study of rituxin for cidp in a link someone here posted for me….it said of the 13 people tried on it 9 responded favorably. of the 9 the average time to see results was 2 months.
My next infusion is thursday of this week (second infusion) then i will have nothing to do for the next 6 months except wait and see if it’s going to work.
thank you everyone for your well wishes, will post again on thursday after the infusion. hoping it goes as well as the first.June 11, 2012 at 3:38 ami saw dr dyck at mayo, the place kelly mentioned. There’s father and son both there—james dyck (son) and peter dyck(his father). I saw james and liked him. Lori
June 11, 2012 at 3:34 amthe diagnostic period is the worst for these type of diseases! it’s a big guessing game, test after test, always waiting weeks to even months to get in and get results etc.
To get my second opinion, i flew out to mayo in MN and did one busy week full of test after test. If i had to do it all over and know what i do now, i would have just gone there in the first place and got everything done and had answers in a week–would have been so much easier, less work time missed, and treatment started sooner. LoriJune 11, 2012 at 3:21 ampat–i have both muscle and sensory loss and also have periods when i have a lot of fascilations. I think the important thing is how you are feeling when you have them. If you are feeling good and not getting weaker or are you feeling like you are losing strength with the increase of the fascilations? I also get them when i have overdone it with exercise.
I also felt the ivig wasnt holding me anymore and just recently switched to an immunosuppressant (rituxin) instead. LoriJune 5, 2012 at 11:30 pmbny–i had ivig loading doses for over 2 years, first every 12 weeks then every 6 weeks, went to Dr dycks recommendations of 0.4 gm per kg weekly for 16 weeks then back to loading dose( 2gm per kg) right up until last week when i started rituxin–so it’s definitely not unheard of to get multiple loading doses. Lori
June 3, 2012 at 3:38 pmbny–glad to hear from you, i was worried about you. Hopefully the ivig continues to work for you and you won’t have to try anything else, but it’s good to know you have options if it doesn’t. my ivig usually took a few days to kick in too.
You had your new brand ivig the same day i had my first rituxin—-keeping my fingers crossed maybe we both will be lucky with these new treatments 🙂 LoriJune 2, 2012 at 11:57 pmheathermansfield–I have twitching (fascilations), tingling and the electrical impulses and my diagnosis is cidp. Lori
June 2, 2012 at 7:54 pmAre you doing any better today bny? did you end up going to ER last night? Hope all is well—keep us posted. Lori
June 2, 2012 at 4:17 ambny—didn’t you get a different type of ivig yesterday? Maybe you should check with your Dr to see if that could have anything to do with these new symptoms.
ivig is the first thing you have tried, I know it has been working for you so far–but just to ease your fear remember there are other treatments you can discuss with your Dr in the event the ivig doesnt work for you anymore.
Its fine to vent here–that’s what we are here for.
I think if you are having difficulty swallowing, especially if it’s something new you should call the ER and see what they recommend you do. good luck—thinking of you, hope it gets better for you soon. LoriJune 1, 2012 at 11:46 pmthank you dixie 🙂
Bny–the questions are fine, it’s how we learn from each other. You can go into anaphalactic shock from the rituxin, it most likely happens during your first infusion. Other side effects include chills, fever, nausea, vomiting, body aches.
I will go again in 2 weeks. Then again in 6 months for 2 more infusions, then 2 more again in 6 more months—so it is 6 infusions in 18 months. B cells replenish themselves every 6 months. It is thought that by the end of 18 months you will have all new b cells that will not have the memory the old ones had and therefore will not attack our own self (autoimmune). If it works i should be done in 18 months.
There is so much information on b-cell suppression for auto-immune disorders on the internet. unfortunately most of the info is geared toward other auto-immune disorders since ours is so rare. I have been reading a lot on it, I really should remember to bookmark the sites, i just get reading and googling so much and go from one to another.
I have not given up the sct idea—that’s my next plan if this does not work. But after all my reading i am really hopeful that this will work and eventually I can be cidp AND treatment free.
Best of luck with the new brand of ivig, I hope it works well for you. I will continue to post on the rituxin, there just probably wont be much to post until my next infusion on june 14th. Today I felt fine, no side effrects at all from yesterdays rituxin. LoriMay 31, 2012 at 10:17 pmhi Fred—i completely understand where you are coming from–each of us has to weigh the pros and cons of each available treatment for ourselves. my Dr too, had a hard time agreeing to try the rituxin for me at first. I just wasnt getting significantly better on the ivig, and was ready to try something more. i will post my rituxin experience on a new thread so it doessnt get confusing for people since this one is for sct info. good luck in whichever treatment you decide. Lori
May 31, 2012 at 1:40 amexosurf—do not settle for thinking “maybe you can’t be helped at all” if properly diagnosed and your cidp is stemming from your immune system—keep trying to find what works for you. I am in that same situation right now too. I am coming close to my 3 year mark of being diagnosed and starting ivig. I have tried prednisone–didnt work, tried plasma exchange–didnt work. I feel better for a short while after receiving 130 gms of ivig (loading dose–i get 65gms per day for 2 days every 6 weeks) but it is not holding me.
tomorrow i will receive my first dose of rituxin—kind of nervous but excited at the same time. If your second opinion comes back as cidp too, then definitely keep searching until you find somethng that works. If the ivig doesnt seem to be working well ask your dr for alternatives. I wish i had asked earlier and not waited so long hoping for the ivig to work. good luck at your appointment–i hope you get some answers. LoriMay 30, 2012 at 1:43 amI traveled out to Mayo and saw dr Dyck as Kelly mentioned above. It is a great way to get diagnosed, mayo will coordinate all of your testing to be done in a week. They are used to people coming from far away especially for this reason. The staff at the hospital are very helpful if you call. There are many reasonable places to stay near the hospital. If you are seriously looking at going out there and want more info let me know if I can help.
I definitely agree you should find another Dr. who will listen to you. My cidp is the slowly progressive type—and that was scary enougn for me (also a former runner) I dont know how you and Bny handled the way it came onto you both so fast and furious?? I would probably have planked my butt in a reputable nearby ER and refused to leave until they did SOMETHING!!May 26, 2012 at 7:19 pmI have had to have several chest x-rays due to a “nodule” on my thymus gland. In the end nothing has come of them. I had 3 ct scans of the chest,a MRI and a pet scan—I finally had enough , told them they were going to end up creating cancer from all the dyes, contrasts and radiation if they continued. I dont know why you would get muscle atrophy after you start regaining use of your muscles???? I thought the muscle atrophy occured when it wasnt getting the message from the nerve to function, therefore it atrophied due to not being used and would be weak. My inner calves are atrophied and weak.
Yours is the opposite of mine, where you got hit hard and fast, mine has been slow and progressive. I dont think there is any “normal” with this disease. Seems every case is different.May 26, 2012 at 1:54 amhmmmm… i would love to wear flip flops again, but I wouldn’t even know if I lost one and walked right out of it–lol my foot reflexes don’t work well enough to hold them on. maybe after my rituxin trial?????
