my rituxin experience
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May 31, 2012 at 10:32 pm
today was my first rituxin infusion. Will try to post info for others considering it. premedicated with 25mg benedryl, tylenol, and some iv antihistimine. I received 1000mg of rituxin at a very slow infusion rate until I reached 240 then stayed there until done. it was much like my ivig infusions. I felt fine throughout the entire process, no headache, chills or anything. My BP which normally runs low stayed fine.
I was both nervous and excited about the whole thing and hardly slept last night. Now that it’s done and went so smoothly Im really glad to be trying it. According to the nurses, my Dr and google–if you are going to have some sort of reaction to it , it will most likely be during the first infusion. I will go again in two weeks and receive another 1000 mg. then repeat this process every six months for two more sessions—so 6 times total in 18 months.
I am told i should know whether or not it is working after my first round—so hopefully in a month I will have some positive results to post. When doing my research on rituxin i googled “rituxin for autoimmune diseases” and found a lot of valuable information. Lori -
May 31, 2012 at 11:30 pm
Lori222 really glad it went so smoothly for you and that it works for you! Love Dixie
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June 1, 2012 at 2:14 am
Thanks for updating us!! Glad to hear it has gone smoothly so far!!! What are the side effects that it can have?? Is it a chemo agent? Sorry I’m not very familar with it.. If it works how often will you have to go? ok, think I attacked you with too many questions for now! 🙂 Hope you continue to feel well! I just got new IVIG today (from carimmune to gammunex today- hoping for less side effects)!
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June 1, 2012 at 11:46 pm
thank 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. Lori -
June 8, 2012 at 3:04 am
Lori – I am so glad to read that it went so well for you. Fingers and toes crossed (because I can, not because they do it by themselves) that this is totally successful for you. So glad you are posting your journey – as you say, it helps everyone as we learn from each other. Can’t wait to hear if you are feeling positive results!!!
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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 12, 2012 at 4:16 am
Great to hear you haven’t had any adverse effects!!! Maybe the fasics are your nerves trying to heal!!???!!! Good luck on thursday- will be keeping ya in my mind that all goes well! thanks for the update!
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June 13, 2012 at 11:37 am
Good luck with your infusions- hoping it helps and thanks for sharing your experience!
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June 14, 2012 at 3:11 am
da.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.
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June 14, 2012 at 9:16 pm
OO I hope thats some nerve regeneration going on!!! Keeping my fingers crossed for you! thanks for keeping us updated! 🙂
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June 14, 2012 at 10:36 pm
second 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 17, 2012 at 1:39 pm
2 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.
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June 18, 2012 at 1:03 pm
Lori – Can’t explain your feelings, but hope (like bny806) that it is nerve regeneration. It seems this is helping you and I am so, so, so glad! I hope this continues to work!
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June 19, 2012 at 1:42 am
back 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.
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June 19, 2012 at 2:54 am
Lori – I will be following your posts to see how you are doing. I’m glad you are back at work – that should help to make the time pass quickly. But if you need something else for a diversion, we could always play words with friends … LoL!!!
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June 19, 2012 at 9:37 am
I hope your energy continues to pick up and you’ll get a positive response out of it! 🙂
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June 23, 2012 at 1:08 am
I am following your journey Lori. I will pray that you do well.
Laurel -
June 25, 2012 at 3:38 am
10 days post second infusion. I normally would have been due for my every 6 week loading dose of ivig in 4 days and feeling very tired. I have not done ivig since starting the rituxin, and hopefully wont need to. Energywise i feel good.
My massage therapist commented that she thought my calves had a little more there to work with than my previous visit two weeks earlier??? I hope so–my calves have atrophied, if i ever regain the size and muscle in them i will never complain about them being “too muscular and big ” again like i used to…..Amen–lol.
Its still too early to really know anything yet, I figure the rituxin needs time to kill the b cells, this should then stop the immune response, the nerves then need time to heal/regenerate after the attack has stopped, It then needs to reinervate the muscle, then the muscle needs to be strengthened once it can finally get the message to do so. I keep this process in my head so to remind myself not to rush it and give the rituxin time to work if it is going to.
but overall i have definitely not gotten any worse, maybe a tiny bit better, and less fatigue. -
June 25, 2012 at 11:24 am
Fingers and toes crossed for continued improvement!
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July 3, 2012 at 2:29 am
a little over two weeks since my second rituxin infusion. I am over my usual 6 week ivig schedule (i would have been due last thurs if stilll on it) I am definitelty no worse than i was 6 weeks ago. Have not got the usual fatigue feeling i used to get when getting close for ivig. Energy still good. have not had any noticeable strength increases. Have had pain where i usually have numbness. Not extreme pain where i need to take anything, but it’s definitely noticeable.
Still early, from what i have read on b cell depletion, rituxin for auto-immune and others who have done it, i need to give it a good 3 months….P-A-T-I-E-N-C-E !!!! that is the hardest part. -
July 3, 2012 at 3:33 am
Wow Lori, initial reporting sounds promising!! Keep us posted!
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July 4, 2012 at 2:49 am
well now the fun begins….a month after my first infusion and over two week since my second, my insurance co. (anthem blue cross) sent a letter saying they were denying rituxin—-a little late i would say!! I am starting by having my Dr call them with more info. they did state in their letter that they cover rituxin when there is an abnormal antibody affecting the immune system and I DO have this. so hopefully that is all it will take. If not then here I go again–through the Anthem appeal process—uggg!!! on the good note, if the rituxin works ,I am not due again untll Nov 30th (6months) so i guess i will have time to get it figured out by then.
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July 4, 2012 at 1:41 pm
I am so sorry you have to deal with this extra stress- sometimes I think when it comes to the insurance companies the left hand does not know what the right hand is doing – good luck and I am hoping the Rituxin does the trick for your CIDP!
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July 10, 2012 at 10:22 pm
Hi Lori:
Glad to hear your are doing well and that you are tolerating the rituxin. Today I just had my third bi-monthly rituxin infusion. Everything for me went well. I started my infusions in Dec 2011. I am still pretty active but my function with my hands has not improved and my energy level is still low. I asked the nurse today how much rituxin was going into me and she said 855 Mg. On an earlier post I commented on the amount of your treatment. I guess I must have been thinking grams and not miligrams. Best of Luck, Dave -
July 11, 2012 at 3:35 am
thanks everyone again for the well wishes 🙂 a little over 3 weeks since my second 1000mg rituxin infusion (june 14th) feeling pretty good. energy definitely better. I do have periods where i think the numbness is worse, then after a few days of that i feel better???
trying not to base too much on the sensory changes and really focus on strength. The good thing is i am definitely not worse and have been almost two months with no ivig.
as for my insurance dilemma– I asked my Dr to call the insurance co and give her reason for choosing rituxin (hopefully the fact that i have a confirmed abnormal antibody will help)
It is still a little early to tell how the rituxin is going to work—every site i have read on it says 3 months to get full benefit. of coarse they are referring to other auto-immune diseases since there is not a lot of info out there on rituxin specifically for cidp . but it is a good baseline to get an idea of how long it might take. -
July 13, 2012 at 2:25 pm
had a massage yesterday and my massage therapist commented on how she feels there is a lot more to work with on my legs. Muscle tone on the outer calves that wasnt there a while ago and definitely on the quadriceps which i was just beginning to question whether or not they were becoming affected a few months prior to starting rituxin.
now that i think about it, I am able to lift myself up from squatting position from floor whereas a few weeks ago I sort of used my hand for a little boost when doing that. For me the progression was very gradual that sometimes i questioned it—so im guessing the healing will be the same.
I no longer have the tingling and buzzing feelings i had before starting rituxin. I was never sure if those were good or bad at the time, but looking back, the past 3 years i had them i was continuing to decline and now that they have stopped i feel better, have more energy and am feeling stronger. I do have different sensory things since the rituxin, a dull pain at times in the areas that are affected by the cidp, itching, and fascillations.
I am still a little concerned that my rituxin schedule is the 1000mg 2x every 6 months for 18 months and nobody else on here has that schedule for cidp? i have seen it mostly for RA. I dont want to start healing only to be set back again. I guess i will have to deal with that when and if it happens—possibly the 1000mg x 2 WILL hold me for 6 months.
Will continue to post and hope that this helps others on the board. Looking back at my 3 year journey with the ivig, I sometimes think i wanted it to work so badly that i may have thought it was working for me better than it actually was. I guess my message to others is not to wait too long before asking for something else. I was a little hesitant to try anything else, knowing the ivig was the safest, and everything else came with possible side effects.
I can definitely say, even this soon after my infusions that i definitely feel better than i have in a long time. That lethargic fatigue feeling that i think is occuring when the immune system is in constant attack mode is gone. I still have a long way to go to get the feeling and strength back in my lower legs, but just the fact that im feeling better and am up and doing more should help that along.
Thank you to other rituxin users who have posted in the past–without those posts i wouldnt have gotten to this point. -
July 13, 2012 at 4:10 pm
Awesome news! Keep us posted!
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July 15, 2012 at 12:06 am
Great to hear it’s helping! if I could get to the point where I could actually get up off the floor only using my legs, that would be pretty amazing.
Don’t worry too much about the treatment schedule. You can always increase the frequency if needed. Better that then get overloaded by the side effects.
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July 16, 2012 at 5:39 pm
Lori,
That is such good news – I am so happy to hear you are getting positive results. Seems like you found what works for you!!!! Woo Hoo!!!!!
Hugs
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July 17, 2012 at 2:26 am
thanks everyone 🙂 I hope so linda, but it’s still early. Even though i feel less fatigued and better internally- I still havent had significant strength increase. If it doesnt work I am applying for the sct—–and will take you up on your offer to come hang out with me there!!!
I am really hoping this does it though. I should really know for sure around mid september. -
July 18, 2012 at 2:48 am
Well my fingers and toes are crossed this works for you! And it is because I CAN cross my fingers and toes without it being a result of cramping!!! LoL!
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July 24, 2012 at 3:07 am
it’s been over 2 months since my last ivig–have not got any worse without it. Still a little soon to get full effects of rituxin from what i have read and been told. energy is good, a lot less fatigue since my 2 infusions. feelings of slight pain where i usually had numbness in my ankle areas. Feet are strange, they feel more numb some days but no weaker?? I wonder if there are varying stages of numbness even during healing? But even though they are numb, they are very sensitive if i step on things, and i still feel little jolts of occasional pain in them.
I read back through soapys rituxin journal and he also referred to the foot numbness quite often. I do know my veins have enjoyed the break from the way less infusions with rituxin. -
July 25, 2012 at 2:44 am
feet are very itchy today??? have had to take off my shoes several times to scratch them. how can feet be numb but itchy at the same time?
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August 17, 2012 at 10:56 pm
hi everyone–glad to see the forum back up 🙂 It has been over 3 months since my last ivig infusion and i have not gotten any worse. I have had more energy, feels like my calves muscles are larger than they were.
I had my rituxin on june 14, Dr said I should know by my late Sept. appt with her if its working. I hope so, have felt much better, have many sensory things that werent there before, itching, pain, fascillations ,tapping sensations, stinging sensations–these are in place of where there is usually numbness.
A few times when I was getting impatient and discouraged with the waiting I read back through some old posts here on healing, and found a good one Alice posted on how painstakingly slow it can be, and sometimes you wonder if it’s even working. (she was discussing SCT-but i think it would also cover healing in general) That post was most helpful right when I needed it 🙂
hope everyone is doing well and enjoying summer—to my western friends, I would love to send you some of this New England rain!! Lori
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August 28, 2012 at 12:37 am
Lori,
Just a quick note to let you know I’m thinking about you and praying the Rituxin works for you! I hope all those odd sensations you are expierencing are, well, feelings …
Smiles!
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August 28, 2012 at 2:11 am
thank you Linda 🙂 I’m still in the wait and see mode on the rituxin. My Dr said to give it 3 months. On the good note I have not got worse and it’s been 3 1/2 months since ivig.
I just fiished reading your post on your pre-sct condition—you have really come a long way, im so happy for you. Lori
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October 6, 2012 at 10:37 am
Can someone help me is rituxan approved by BC/BS for CIDP
tHANK YOU
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October 7, 2012 at 11:07 pm
Raymond—when i had my infusions i thought i was covered, it wasn’t until a month or so later Anthem BCBS decided they weren’t going to cover.
They sent a letter saying they would cover only if i had an abnormal antibody (which I did) they then sent a second letter saying they would only cover if i failed ivig, i showed them that i had failed all three, ivig, prednisone and plasma x/c. After I showed that i met their listed criteria they sent a third letter saying they wouldnt cover rituxin for cidp, this time they left out the criteria I had met. Mine is in the first level appeal process right now, I plan on taking it to the Maine state insurance bureau if they deny the first level appeal.
I think it really depends on where you live, i guess if i had lived in MA it would have been covered just on the fact that it’s the immunosuppressant my dr felt would work best for me…..but the healthcare system in MA is waaay better and ahead of the system in Maine. In Maine the people who receive the free government insurance–mainecare, get a lot better coverage than us who work and have to pay for our insurance—our’s is a very messed up system right now 🙁 hopefully if you live in a state where insurance is better and your dr feels you need rituxin you might not have a problem getting it.
have you already failed ivig and prednisone? they are suppose to be safer than the rituxin. Although so far, i have not had any negative side effects from it. I have been without ivig since May— 5 months with no worsening of symptoms. I have not had significant strength increase, my dr said it may take a while to see that?? good luck with it—-dealing with insurance companies can be very stressful!!!
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October 8, 2012 at 12:16 am
I have failed IVIg terrible reaction made my symptoms worse which I was on for at least 4 months ohhh I think of that terrible time, plasma exchange same thing rev’d my immune sytem up, imuran same, MTX & prednisone did nothing so let me get this straight you live in Maine…ok I live in Rhode Island my immunologist and hematologist are in MA ….What type docs are you running with? I believe they will try their best to get me this med I am in fairly tough shape my RA factor has been slightly elevated at times also but I may have more than one thing going on as things have been positive then negative I have even had a positive p-anca which may qualify but that has since gone neg I have co occuring hematological disorders just like that piece about CIDP about the people in Italy have you read that?
I have BC/BS a PPO in RI I also have had very high elevated auto antibodies along with very high immune complexes, ACE levels…..my disease stems from an immune medicated systemic disease which means autoimmune subclasses that are not all identified …I cannot even work my wife has the coverage …What part of BCBS benied you was it Wellmart of BC/BS?????
are you getting it covered now? They just do not understand…it is like Shakespeare said “when this body did contain a spirit a kingdom for it was to small to abound” Best…..keep me informed as I will you Thank you Lori
oh lol because I do not have a confirmed diagnosis to account for the diseases cause unknown MetLife has not paid me disability payments CIDP is an immune mediated inflammatory disease – immune system that is why I asked if you have an immunologist it is usally idopathic this also mentions some other treatments
http://en.wikipedia.org/wiki/Chronic_inflammatory_demyelinating_polyneuropathy
The lawyer I have hired to represent me to collect my MetLife disability payments is clueless and they think I am “undiagnosed” because unknown etiolgoy so I must have a teleconference with the judge, Met’s lawyer and my lawyer this week coming up…..I am so dam prepared I even spoke to my immunologist who is a new doc and he said he will back me if needed …I have not had sucess with docs but may have found two gems we will see…. if anything will help…….my contract for disability says I am to see a doc with relevant training and experience to treat me needless to say an immunologist, there is also a Supreme Court case that basically says the same thing in order for an insurance company to deny me benefits they must consult with a doctor or should I say specialist with the same background…Met Life consulted with a pulmonologist a lung doctor and he is the reason I have been denied they should have consulted with an immunologist I am not sure what the outcome will be but with the Supreme Court and my disability contract backing me maybe a good shot nothing is a sure thing but we will see……I had to fire my first lawyer his law firm been doing this for years and they misinterpreted the contract if I win I will deal with them later and if I win I will deal with my current lawyer about his fees later as he is suppose to be the expert he left out such an instrumental piece of my brief I had to tell him ….I used to be a VP at a big bank dealt with tax regs, contracts all this stuff I think they thought I was some smuck off the street and I have not and will not budge I am on SSDI but I have a young family and SSDI is nothing compared to what I made as a VP all this just pisses me off and I know I am not they only one and wish I could be a voice for many if I do get well just that glimmer of hope I always planned going to law school hopefully I am so hoping by the summer oh well …I will speak to my immunologist about this rituxan for CIDP, I know the hematologist says RA would be covered then I asked what about CIDP, he was not sure he deals with cancer etc…. I hate being sick and some times want to give up the battle oh God do I but when I can I can muster up some energy the disease I have is on the spectrum of SLE …I have a great piece on diseases of autoimmunity it you care to read it it mentions disease that are organ specific that is why they are or may be more identifiable where non organ specific diseases are systemic and not so identifiable and keep creating more auto anti bodies …I need this stuff for my MetLife thing …I would give it all away if I could take my children up by the Saco River in Maine again….lol sorry for the length but sometimes even the smallest words are encouraging……knowing that their is life out there…..and hoping once again to experience it and not have to fight for it
Thank you again
Raymond
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October 9, 2012 at 2:48 am
hi Raymond—yes, getting something like this after being used to being active, athletic and healthy is difficult, but try not to get too discouraged, the stress only aggrevates the symptoms more. -trying to get an accurate diagnosis can be very frustrating. What are your symptoms—are they typical cidp ones?
You may get more responses from others on the board if you start a new thread with your questions, others may not be reading your post because it’s posted here under mine about rituxin.
As for the insurance I have a ppo anthem plan, pretty pricy plan-i pay for it myself as i own and operate a small business. This is one reason why it makes me so mad they are trying to not cover the rituxin–i know exactly what i pay them for myself, family and employees and it’s not cheap. I am still in the appeal process right now, so Im not sure if it will be covered or not. I just hope to get it all figured out before my next rituxin infusion comes due. Its so stupid of them to not cover, the rituxin is a fraction of the price as the loading doses of ivig i was previously getting every 6 weeks and it’s not given very often. At first my dr said again in six months, but she’s discovering that some people can go even longer, dont need another infusion until the cd19 and 20 cells of the immune system start coming back—some people it takes 9 months.
yes, i live in Maine. saco river is beautiful, did you go whitewater rafting there, or to a calmer part of the river for canoeing? I go to the Lahey clinic in burlington MA. the dr is Srinivasan, she is a neuro-muscular dr. I noticed with your drs listed above you didnt mention a neurologist, thats why i asked what your symptoms were.
i also went out to the mayo clinic in Minnesota to see Dr Dyck and had a very thorough work up there to confirm the cidp diagnosis. i even had the sural nerve biopsy, just because i wanted a definite diagnosis before putting all this toxic crap in my body to alter the immune system.
you may be able to get rituxin with a confirmed RA diagnosis, they are using it for that. I kinda wish my dr could find some lymphoma or something , so i wont have to fight my insurance company for the rituxin.
have you read up on the stem cell transplant, where you have tried and failed so many treatments. but, im sure you would definitely want a confirmed auto-immune diagnosis before doing that.
have you had an emg/ncv test? seems that test should help with your disability if it showed extensive nerve damage. good luck with your disability hearing, sounds like you are preparing well for it.
isnt it so annoying that we have to fight so hard for things like that and insurance coverage, after paying for it for our whole working life? Its really irritating to me, but if i were to be unmarried and have a child the government would be throwing all this free stuff at me–its such a messed up system. Lori
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October 9, 2012 at 11:22 am
I went to the MAYHOLE they were not helpful one bit they said we probably cannot help you and they were right I should have left after rectal they did all the testing I had back here it was negative here it was negative there not I have to downplay what they did when I speak to the judge….I went to see a Dr Younger in NYC one of the best for CIDP – EMG/NCS bang CIDP sent there by Katz a neuro in CT but these diseases are immune mediated CIDP is an immune mediated inflammatory disease something else is cooking them in my case it is thought my immune system was deficient causing autoimmunity which is a sub class of immune mediated diseases to see a neuro for the diagnosis of CIDP is fine by you need an immunologist to piece togther the immune part did they run IgG, IgA, IgM and IgE levels on you? Symptoms are no longer the issue they are pursuing and they hav done all the blood testing the need to ….I have co occuring hematological disorders…ANA as high as 1:2560 high immune comples, high ACE levels I am in a hyper autoimmune.immune state that is why I am reactive to some of these meds they rev me up worse very much so my body constantly makes auto antibodies a neuro is of little use for me he did his thing and that is it and I had a terrible reaction to IVIG and P/E like I said …the rituxan is not for the CIDP it is to stop the immune sytem form attacking your nerves I am sure you are aware of that that is why it is not approved because CIDP is generally a disese with an unknown origin, can be basically any autoimmune illness,virus, bacteria
this is a good article
A retrospective, observational and multicentre study on the use of rituximab in CIDP. 13 Italian CIDP patients were treated with rituximab after the partial or complete lack of efficacy of conventional therapies. Eight patients had co-occurring haematological diseases. Patients who improved by at least two points in standard clinical scales, or who reduced or discontinued the pre-rituximab therapies, were considered as responders.
RESULTS:
Nine patients (seven with haematological diseases) responded to rituximab: six of them, who were non-responders to conventional therapies, improved clinically, and the other three maintained the improvement that they usually achieved with intravenous immunoglobulin or plasma exchange. Significantly associated with shorter disease duration, rituximab responses started after a median period of 2.0 months (range, 1-6) and lasted for a median period of 1 year (range, 1-5).so I wonder what may be driving your CIDP as a co occuing hematological disorder as mine since the docs I have are fighters for there patients there is talk I may get this I am not 100 % sure as of yet I have to wait my thought is whatever disease is occurring in your body if rituxan works on that disease it will help you CIDP is just a consequence of that disease
here is where I am
CIDP
epislceritis/
hashimoto
Encephalitis/vasculitis
decreased cortical perfusion
Low Levels of IgG subclasses
here is a section in here that mentions autoimmunity – the are relating this to my multi systemic autoimmune disease
Immunoglobulin G (IgG) subclass deficiency
X-linked agammaglobulinemia
Immunoglobulin A (IgA) deficiency
Immunoglobulin M (IgM) deficiency
Immunoglobulin E (IgE) deficiency
did I send you this
Immune-mediated diseases are conditions which result from abnormal activity of the body’s immune system. The immune system may overreact (or start attacking the body Autoimmune diseases are a subset of immune-mediated diseases.
which is also this
An immune-mediated inflammatory disease (IMID) is any of a group of conditions or diseases that lack a definitive etiology, but which are characterized by common inflammatory pathways leading to inflammation, and which may result from, or be triggered by, a dysregulation of the normal immune response. All IMIDs can cause end organ damage, and are associated with increased morbidity and/or mortality.
Inflammation is an important and growing area of biomedical research and health care because inflammation mediates and is the primary driver of many medical disorders and autoimmune diseases, including ankylosing spondylitis, psoriasis, psoriatic arthritis, Behcet’s disease, arthritis, inflammatory bowel disease (IBD), autistic enterocolitis, and allergy, as well as many cardiovascular, neuromuscular, and infectious diseases
in which CIDP is classified…I know enough about this crap Ijust do not know what will work……I know some have had good repose with cellcelpt so maybe a lupus for of CIDP also good reports with Immunosuppressive drugs are often of the cytotoxic (chemotherapy) class, including rituximab (Rituxan) which targets B Cells, and cyclophosphamide, a drug which reduces the function of the immune system. Ciclosporin has also been used in CIDP but with less frequency as it is a newer approach.[7] Ciclosporin is thought to bind to immunocompetent lymphocytes, especially T-lymphocytes depends what you read but cellcept can put one into remission as cyclophosphamide but what is you need a TNFa blocker that is a different class of drugs I just want something that helps there is a crap load of the……I know someone with RA a confirmed diagnosis she was on 4 different meds before they got the right one but if I win my court case and nothing works I am about ready to say game set match……as far as the Saco River we mainly went to NH and with younger children at the time we only floated I live by the ocean that is where I used to play on weekends surfing girl watching..lol more of the latter
high Levels of immune complexes
High levels of ANA
Bronchiectais
Hypogammaglobulinemia
Immunodeficiency states
Immunodeficiency states may be congenital or acquired. The most common congenital conditions (albeit rare) involve B-lymphocyte functions. Hypogammaglobulinemia in these cases may take one of the following forms[32, 33, 34, 35] :
I think you said you have co occurring hematological disorders right? Have they been defined? A lupus, etc….sjogrens all can play a part I am in an autoimmune state but it can take years for the disease to declare itself years I saw a doc at Baystate an immunologist that said I have an immune mediated multi systemic illness CIDP is just a part of it stem cell for any autoimmune is trail and there is a doc in Chicago but you have to have a defined illness and be accepted into the program…I do not care what they put in me as long as I can get relief I have an immunologist and a hematolgost in MA they say that fight fortheir patients …I have had a slightly elevated RF and ANCA so there may be talk of that approach I may have an autoimmune overlap syndrome
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October 9, 2012 at 11:24 am
oh my docs are also thinking getting me into a clinical trial where do you get rutuxan at what office? didn’t you say you were approved then shot down? if youwre at a hospital and it was approved through them they would have to eat it
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October 10, 2012 at 2:40 am
Raymond,lot’s of good info there on the immune system—-guess i will have to do some googling—which i have done tons of since getting this crap. yes, i had read the itialian artical on rituxin.
my igg and igm are high, not extremely, but above the normal limits. The rest are all normal. i dont have any other diagnosis except the cidp. my symptoms are numbness and weakness in the calves and feet. The antibody i have is VGKC, which may or may not be a prelude for cancer. i have had a thorough work-up and no cancer detected. I have never seen an immunologist, only neuro-muscular.
I think the Drs and hospital who administered my rituxin just assumed insurance would cover–as i did–because i had failed the other treatments , it is a lot less expensive than the ivig, and immunosuppressants were the next step. i guess the mistake was–none of us realized the insurance company wanted to select which immuno. for me to use–and i took the drs choice instead.
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October 30, 2012 at 3:16 am
4 1/2 months post rituxin. walking has felt a little easier, not significant– but better. still not able to walk on heels or toes.
definitely have not got any worse and have been 5 months without ivig. less fatigue, now have pain in nerves that were usually numb, not bad pain, no need for any pain relievers, sort of pains letting me know those nerves are still there. I prefer the pain over the numbness.
last lab tests showed b cell depletion, cd 19 and 20 depleted—-which i am told is good. My nerve damage is more axonal than dyminilating. axons heal at an extremely slow rate. Hoping this rituxin is going to halt the attack on my nerves, but right now I am still in the “wait and see” phase which we cidpers are all too familiar with.
still in appeal process with my insurance company, hoping it will be cleared up before next doseage is due.
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November 12, 2012 at 9:07 pm
Lorri: After a lot of thought I decided to go ahead with Rituxan. The problem is that after five years of a loading dose of IVIg every fourth week the IVIg appears to be losing any ability to improve my condition; in fact, at best I am maintaining. Five separate EMG/NCVs show no demyelination; a nerve and muscle biopsy showed no inflammation. The doctors here on Long Island as well as at Mt. Sinai in NYC are a bit puzzled, although I have all the clinical markers for a diagnosis of CIDP. Dr. Latov, at Cornell Weill in NYC examined me and told me that there was no doubt it was CIDP: that half of his patients show no demyelination or inflammation in the testing process, but there is no doubt in his mind that CIDP is the only diagnosis. He said that atypical CIDP is the norm, not the exception.
At any rate, after a full round of testing I began Rituxan a month ago: 1000 mg a week for four weeks. I have the last of the four treatments this week. I had a bit of a reaction to the first treatment –rigors and a massive headache; after that just the usual monster headaches. Also — I itch all over all the time. I so seem to have more energy already; this is the first time I have not received IVIg in five years. In the past if I went even a couple of days past the 28 day interval the numbness would start to come right back, followed by all the other symptoms. We shall see if this works.
I hope that your are improving.
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November 14, 2012 at 3:43 am
hi fred–good to hear from you. So you had 1000mg, 4 weeks in a row? mine was 1000mg 2x, 2 wks apart. then if i can get this insurance thing figured out i will have it again in january. did you have any problem getting insurance coverage?
I have been 6 months without ivig–and have not gotten worse. As far as improvement, I do have more energy, but unless Im just expecting too much too soon—I dont have any significant strength increase in my calves and feet yet. My Dr has said the rituxin takes a while, and I know nerves heal very slowly so im trying to be patient. Then, i guess even though they may possibly be healing, I may not notice it until it innervates the affected muscle.
My cidp is considered atypical too—-glad to know i am in the norm as far as cidp goes–lol
How long has it been since you have had ivig? I hope it works for you. It can take a while to start working so be patient. There was a few times in the beginning that i felt it wasnt working and that i needed ivig, but i think it was more fatigue and not actual weakness, i waited it out and have not had any ivig since the rituxin.
I still have some days where i feel i have more numbness. Im doing more because i feel better, then when i overdo it, i get the fatigue and more numbness.
i have feelings of pain in my ankles and feet where there was only numbness, i am hopeful that these feelings are the nerves reawakening. best of luck with it—-keep me posted, im interested in how it works for you.
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November 23, 2012 at 12:42 am
Hello Lori: I have waited to contribute my own Rituxan experience until I had something clear to say; now may be the time, albeit with mixed news. I had some neuropathy (lack of sensation, no real pain) in one foot back in 2011. A few weeks after hip replacement in March 2012, the loss of sensation spread to both feet, than upward to the calves, also finger-tips. I first assumed this was due to inactivity after surgery but in mid-June I went to a neurologist who did three types of tests to quantify the nerve damage: clinical, by “sharp”, “cool” and “vibration” skin application; external electrodes to measure strength/clarity/speed of a transmitted pulse; and internal needle electrodes to observe active inflammatory irritation. He had me in hospital 2 days later for four days of gamma globulin IVIG for “an auto-immune disease, to be identified by blood and spinal fluid tests”. Those tests strongly indicated anti-MAG (titre 40,000); not CIDP, as total protein was not elevated. So IVIG, while it may have helped delay the deterioration, was judged not the best treatment.
3 options suggested to treat anti-MAG were apheresis, steroids or Rituxan. Stem cell not mentioned, maybe because I am elderly. I chose Rituxan as being the only option that might stop the disease in one treatment, and we could fund it from our nest-egg (Medicare would fund for RA but not for anti-MAG). In July/August I had 4 weekly infusions of 700ml each and then we waited. In September, I had the clinical exam repeated, not the electrical tests, and appeared roughly stable compared with June.
This week, I had repeats of all the tests done in June. Clinical tests showed the sensory nerves “about the same” but both types of electrical tests on the motor nerves were disappointing. External probes showed some slowing and loss of signal compared to June; that alone would not be so bad, as I had not started Rituxan in June. But the needle probes clearly showed ongoing inflammation attack on the motor nerves, so the Rituxan has not banished the disease. Based on this experience, I think the needle-electrode test offers the best answer to your question “Am I getting better or not?”. If there are screen “blips” when the muscle is relaxed, then the nerves are still under attack. It is so hard to judge ones own progress – good days, bad days…
My other, and maybe best, advice is that I have found physical therapy of great help in handling the disease effects. My therapist proposed (with support from the neurologist) a course of gait and balance training to improve “proprioception” and after three months my walking and standing ability is much improved. The idea is that the brain can learn to use signals from other nerves in ankle/knee joints that are not so affected by neuropathy and which the brain previously ignored. I wish I could drive again, but I can not feel the pedal pressures. Will consider hand-controls if I do not improve.
My neurologist is arranging a “second opinion” from a local specialist, though he still thinks the diagnosis and treatment plan were correct. I’ll post the outcome of that later. Best wishes – Ann
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December 27, 2012 at 8:11 pm
wrapping up this post on the rituxin…. i had some hope in the beginning that it was working. I had periods in the first few months where i was experiencing many sensory changes and hoped they were nerves reawakening. it is so difficult to tell with this disease, with the good days, bad days, fatigue from overdoing it when you do have good days etc…etc… I’m sure you all know what im talking about.
anyway, it has been 6 months since my rituxin infusions, i do not have any significant increase in strength. I am coming to the conclusion that rituxin did not work for me. It’s confusing, because i do have a confirmed case of cidp. so far any attempt to alter my immune system has resulted in less fatigue, feeling better in the very beginning, some sensory return—-yet all of these feelings have been very short lived and i seem to go right back to square one shortly after each treatment. It has been this way with ivig, PE and now rituxin.
Possibly i just have a very resistant immune system????? IDK……..any ideas?
I have sent off all of my paperwork for the sct and am waiting to see if i am going to be accepted, then will start the loooong process of insurance appeals.
I have also made an appointment with a Dr at St Elizabeths—one of the centers of excellency, with Dr Gorson. i requested a consult and hope he will take over my treatment for cidp in the event i dont get accepted for the sct, plus i will need someone from now until then. I am currently having no treatment–other than the rituxin already done in june 2011. hmmm… im currently doctorless and treatmentless–lol—not a good way to be starting out 2013.
hope everyone had a nice holiday—would be nice to see the forum active again for 2013–it’s such a great source of information and especially helpful for those newly diagnosed.
if anyone has any helpful advice to add for st elizabeths or dr gorson feel free to post!!
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January 22, 2013 at 11:38 pm
Although Lori “wrapped up” this post in late Dec (and I have followed her posts elsewhere since then) this seems the right place to update my own Rituxan experience. My neurologist is very open-minded, and he arranged for a “second opinion” consult with a specialist at University Hospital in Denver ( 5 months after my series of four Rituxan infusions ended). Here’s my summary of the result:
Not the best of news, but could be worse; it made sense to us:
Diagnosis, status: “Anti-MAG” diagnosis looks correct; nerve deterioration slowed following the infusions last summer; some active motor nerve inflammation was present in September, per EMG test – but clinical exam (“sharp”, “cool”, “vibration” tests) shows sensory nerves condition better than in June and still about stable.
Prognosis, further treatment: aggressive treatment might be appropriate for a younger patient; but side-effects of available therapies often mean a net negative for the elderly; therefore recommended waiting till Spring, then rerun tests; recovery is not guaranteed and would be very slow….may have to live with present condition indefinitely.
Lifestyle, precautions: keep up physical therapy, re-start water aerobics; use walker, rather than cane, when unaccompanied to guard against falls; moderate alcohol is OK – he suspects that nerve damage in drinkers may result more from poor nutrition than from alcohol itself.
So we are “staying the course”, putting up grab-bars around the house and an extra rail down the stairs. Hoping for a slow improvement, but no signs of that yet. Remember, this is a fairly clear anti-MAG diagnosis, rather than “CIDP”.
I have posted previously as “Ann80” but someone else’s name got substituted so I’m back to “Ann79” – lying about my age!
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January 23, 2013 at 3:36 am
hi ann—sorry you didnt have better results with the rituxin.
I am hoping to be posting another treatment again soon—if Dr Gorson has a treatment plan, or if i get accepted for the stem cell tranplant. Either way, i havent given up on beating this crappy disease yet!! keep us posted on how you are doing.
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April 12, 2013 at 12:38 am
We went for the recommended rerun of tests in Spring. Some tests were a little worse than November, some quite a bit better. The main change was in the EMG test (>with needle electrodes) which – this time – I took lying down instead of sitting on the edge of the bed. HUGE change…. November test of the “relaxed muscle” showed huge graphics activity and crackle on the speaker. April 2013 tests, lying down, showed an almost smooth horizontal line and no noise. Conclusion – little ongoing inflammatory attack. Neurologist looked startled. I did not have the nerve (no pun intended) to ask for a repeat test sitting up. So I do not know if the November test was valid. Anyway we are plugging along with grab bars around the house and an extra handrail on the stairs. So maybe the Rituximab halted the progress of anti-MAG…we shall see.
Ann
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April 12, 2013 at 10:00 pm
that’s good news Ann. I have never had an emg/ncv sitting up, they have always had me lie down. I hate that test—-it’s torture. I will have one when I go to Northwestern in May–and I’m already dreading it!! Will you have any more rituxin, or are you done with it?
Lori
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April 13, 2013 at 2:00 pm
Hi, Lori….I have not found the EMG test too painful or stressful, so maybe that’s how I got the “quiet” response on the recent test when lying down. The two “noisy” tests in 2012 were done with me sitting on the edge of the bed; maybe some time I’ll get to do the comparison on the same day!
As for Rituximab, both neurologists (the consultant I saw in January, and my primary neurologist whom I saw again this month) agreed as follows: “More aggressive treatment is not justified for a patient of my age unless significant worsening develops” – so no more infusions, for now. Given the major immuno-suppression effects of Rituximab, we felt that was wise advice. I have decided not to take palliative drugs for the side-symptoms (tingling, fuzzy feeling, etc) unless they get worse.
Medicare would not pay for Rituximab for anti-MAG treatment. We were fortunate to have savings to cover the almost $20,00 for my four weekly infusions last July. We’ll get a fraction back from the IRS by itemizing medical expenses for the first time this year.
As I’ve posted before, we have made safety improvements around the house to prevent falls. I use a cane around the house during the day, plus the grab bars. I use a four-wheel walker when out in crowds because people don’t always see the cane and make allowances. I also use the walker to get to the bathroom in the middle of the night. My balance continues to improve slowly, which I attribute mainly to my weekly physical therapy sessions – as the recent tests showed little if any sign of nerve regeneration yet.
I walk about a mile a day, holding a hand and using my cane. I use an exercise bike for maybe 20 minutes a day, plus occasional water-aerobics which is great but quite a drive away. My husband has to drive me, since I can’t feel the pedal pressure or really know which pedal I’m on! I am dubious about learning on a hand-control car although we have looked into that seriously.
I’ve mixed up some of my earlier information here with some new comments, hoping this may be useful to new readers of the Forum.
Ann
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April 14, 2013 at 10:45 pm
i wish the emg/ncv was less torturous for me. When they have me flex my feet or do anything to engage the thigh muscles while the needle is in that muscle, it literally cramps my entire thigh muscle into the worst charlie horse cramp, which pulses, tightens on it’s own, the muscle stays hard and shakes for up to a week after the test. Im already dreading having the test in chicago next month—i can’t even describe the pain, its not nerve pain, but more in the muscle, i guess??
Sounds like you have a pretty good exercise/pt regiman—hopefully it will bring some more nerve healing for you.
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April 26, 2013 at 1:59 am
Prompted by Bill’s “where is everybody?”, here’s a plug for physical therapy to improve balance – even when the feet and ankles are as numb as ever. My therapist has the idea that there are other nerves, less damaged by my anti-MAG neuropathy, that can send signals to the brain to substitute for the lost signals from toes and heels. Maybe, nerves within the ankles and knee joints. These nerves, though always available to the brain, were ignored because the other signals were more powerful and useful.
When those better signals are lost, repetitive “proprioperception” exercise training may slowly persuade the brain to take note of these lesser signals and balance may improve. My neurologist had no quarrel with the idea.
Well, something is working. With no nerve regeneration at all in the feet, no feeling through the skin up to mid-calf, yet I am walking better.. stepping forward, sideways, even backwards with less unsteadiness. I need a hand to hold just in case, but I’m making steps I could never had made 9 months ago. Medicare has paid for an hour of this therapy each week.
Ann
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April 26, 2013 at 2:29 pm
Thanks Ann. That is really great and some helpful information for those of us with nerves that don’t work right. I hope you continue to gain in movement and balance.
Bill
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April 29, 2013 at 12:28 am
great news Ann 🙂 what sort of exercises do you do for that? I could really use exercises that help with balance. I have never had physical therapy, I guess even though walking is difficult for me, my dr feels that as long as im still doing it that’s enough therapy??? heading to chicago next month for my next adventure with this confusing disease.
hope you continue to improve…and i hope the board picks up—with more discussion and less spam -
April 29, 2013 at 3:28 pm
Lori: I will ask my physical therapist on Thursday if there is some reference that will describe the exercise sequence more clearly than I can (below). His experience comes from treating patients with nerve damage from MS or diabetes. I wrote earlier about the theory that other, less damaged, nerves may be able to compensate for the loss of signal from the usual balance-assisting nerves – but this process of re-training the brain is repetitive and SLOW (“proprioperception”).
I started weekly PT sessions last June. Early exercises did not involve walking, rather stepping carefully up and down, and sideways up-and-down, first onto a wood step, than onto a stiff foam pad (both about 2 inches high) while holding on to a horizontal wall bar for security. (At home I use thick books for a step, and the handles of my exercise bike instead of a wall bar). At that time, when I walked holding a hand, I would frequently be grabbing on hard when I lost my balance. Learning those steps up and down slowly improved my balance, and we moved on to exercises involving various walking steps, still holding one hand for security. For a while, we tried stepping sideways in the 12″ squares formed by a rope ladder laid on the ground, but soon switched to walking exercises with emphasis on posture and NOT looking down at my feet. First series was sideways “step-close”; one foot sideways, then bring the other to it.
Then we moved on in February to more fluid walking sequences: (a) forwards, first with feet a few inches apart for stability, but later trying to place each foot in front of the other (like a model on a catwalk ! ) always looking up ahead not down. (b) “grapevine” or “fishtail” sideways motion with legs crossing over – except in my case I am limited in one crossover by an artificial hip which must not be distorted by crossing that leg too far (c) backwards – the most difficult – not with feet in a straight line, at least not yet.
All of this is done SLOWLY. It’s easier to do it fast when lurching from one leg to another. Doing the exercises slowly requires that I am balanced at all times.
The improvement in my balance has been slow but steady. I still use a held hand for security, but pull on it less often and more gently as I am able to correct my balance more on my own.
Lastly – there’s a social and mood benefit from weekly physical therapy sessions. It makes me feel positively involved in my own recovery process.
Ann
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April 29, 2013 at 5:45 pm
Lori, the Foundation published “Exercises for CIDP” in its newsletter awhile back:
http://www.gbs-cidp.org/newsletters/pdf/Newsletter_Summer_2010_Med.pdf
although these mostly pertain to strenfth rather than balance. The best exercise for recovering my balance, in my opinion, was playing catch with the therapist using a special exercise ball. It was about five or six inches in diameter, and heavy for its size — not like an inflated ball. And it was somewhat soft and flexible, so could easily be caught with one hand. Another thing that helps is a large inflated ball which is used as a seat while pulling TheraBands from the side. These both help rebuild core strength, which is important to balance. Walking as much as you are able helps also, of course.
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May 1, 2013 at 2:20 am
that was an excellent article GH, very informative, thank you
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May 4, 2013 at 5:08 pm
Lori – I asked my physical therapist what advice he would add to my own interpretation of the “Proprioperception” training exercises. He said the basic principle is to progressively, and safely, challenge your brain/nerves/muscles combination to do the best it can to maintain your balance despite the loss of some signals. The exercises to strengthen core muscles, as GH posted, will be a good part of this. I started by holding on to a handrail or some support, while stepping both straight up/down, and sideways up/down. Switching to more spongy lower and/or upper surfaces – say having a stiff foam pad as the step, or a soft yoga mat on the floor, is more challenging than using hard surfaces. Then on to the walking exercises, which can be made more challenging by laying rubber mats on the floor.
Outdoors, it is good to seek out uneven terrain to walk through, provided you can stay safe. I now find using two walking poles is more comfortable, and gives better posture, than using a cane or using either of my walking frames; it gives me some good upper-body exercise, too. One odd achievement, if you still have any snow – I was amazed that I could walk on snowshoes more safely than in boots, as the toe-grip and the protruding tail of the snow shoe made it almost impossible to fall backwards, while the poles stopped me falling forward !
Ann
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