nerve healing process
November 22, 2012 at 2:36 pm
anyone who has received successful treatment for their cidp care to chime in and share, how can you really tell if you are healing? some days I feel like I am getting better, and maybe this rituxin is working. Then i will have a few days where I feel weaker and more fatigue and question it.
My Dr continually says to “be patient” as she did with the ivig, plasma x/c and prednisone. It is very hard to be patient when your entire life and everything you enjoy doing is on hold while waiting for something to work.
I wasted almost 3 years on treatments that didnt work and don’t want to fall into that same pattern with the rituxin—how soon is too soon to move onto the next treatment plan??
Really starting to look into the sct more seriously even though my dr is against it–i think at least once you have done that you KNOW you have done everything—and if that is not going to fix my immune system then nothing will.
November 22, 2012 at 5:25 pm
I have definitely received successful treatment, but what is best for one person is not the best for all. There is a great deal of variation in CIDP and my case is atypical.
Why does your doctor oppose the stem cell treatment if you are not getting good results from all the standard treatments? Have you sought a second opinion on that option from another neurologist?
AnonymousNovember 23, 2012 at 12:41 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
November 23, 2012 at 3:01 am
thank you Ann for sharing your rituxin experience. I have never had physical therapy, I do find standing in one spot very hard and my balance is bad.
I agree –it is very hard to judge ones own progress, especially due to good days–bad days–stress just from having this disease, etc all make it difficult. I haven’t had an emg/ncv since my rituxin infusions (June). I’m confused because I keep having strange sensations where I normally had numbness–but I’m not really gaining strength. I do feel I need another emg/ncv just to rest my mind on what is going on. If I’m continuing to get slowly worse as I was with the other treatments then I definitely want to apply for sct.
GH–thank you for responding. My Dr feels since the sct is still in the clinical trial phase, that it is dangerous and may lead to cancer down the road?? Dr Dyck from Mayo is where i got my second cidp confirmation, when i asked him, his response was something about “taking a nuclear bomb to an anthill” in other words, he felt it too drastic. I really don’t care if I get cancer “down the road” if it means having a few more good years with full use of my legs.
It is easy for them to sit back and try all these “less invasive” approaches because it is not their life that is going by wasting time in infusion rooms, not being able to do the things they enjoy. Plus not ever really being treatment free. I wish i had applied for the sct instead of trying rituxin and been done by now. Now that Ive done the rituxin, I feel I should at least see if it’s going to work, but it’s been 5 months—seems like there should be some significant changes by now if there was going to be.
November 23, 2012 at 3:10 am
Ann that is interesting info on the emg test—-so if the screen is jumping and making all those static noises when we are not flexing the muscle, is that a sign that the cidp is still active? I never really knew what caused all that noise and static.
As for age, im not sure what the age requirements are for sct. I am 48 and have no health issues other than the cidp, so I think thats fine for the requirements. My only concern is that my cidp is considered atypical.
AnonymousNovember 23, 2012 at 4:07 am
Lori: My neurologist explained that he uses the inserted needle electrodes only in the motor nerves because the sensory nerves are too small. The needle electrode was inserted up in the calf, with patch electrodes applied to the foot. Then, if I tensed that muscle, there were jagged lines moving all over the screen and a lot of crackle. When I was told to relax the muscle, the crackling and jazzy lines diminished quickly – but he was disappointed to see the residual activity level. He then told me that this test showed there was still active “irritation, inflammation, of that nerve” and therefore the auto-immune damage was still occurring.
Remember that, so far as I know, I have anti-MAG and not CIDP – so I am just assuming that the message from the inserted needle test applies to either condition. Ann
November 23, 2012 at 9:11 pm
Thank you for that Ann—-I have asked that question so many times “how can we tell if it’s still active or not” now I will pay attention to the screen static and crackles during my next emg and specifically ask if that is active cidp showing on the screen. I would think, yes that the signs of nerve damage would be relatively the same as you mentioned above, even though the causes may be different.
My emg test is usually very loud on the screen and very painful when the needle is inserted into my thigh muscle. sometimes the charley horse pain created from the needle can tighten and be painful for weeks. As much as i hate the emg test, I do really want to know whats going on since i started this rituxin. Im having a hard time determining what is going on, mostly in the past week. If Im feeling normal side effects from rituxin, mere fatigue that may pass over time or is rituxin worn off or not working and cidp active??? Lori
AnonymousNovember 30, 2012 at 2:07 am
My brother was diagnosed lin March 2012 and has had many ups and downs. He went from not being able to stand in 1 spot for 5 seconds to most recently 2 minutes. This has been a gradual progression and he has still a ways to go. His grip strength is still weak, but the dr explains that this will take time. 18-24 months. His treatment has been 36 plasma exchanges wit prednisone 50mg tapered down to 20 this week. He has also been in imuran for 4 months (200mg) and most recently gets Solumedrol drip after his plasma. Plasma was originally 4 times a month, then 2x then 1x. He did notice some weakness starting to set in and the dr immediately put him back on 4x a month and he has noticed some change in energy.
As an outsider i can’t begin to imagine the frustration you are going thru, but i can say that patience is necessary. Ultimately you know your body better than anybody else. If you feel a progressive weakness you need to advise the dr to revamp the treatment plan. There will be good days and bad, but keep an eye on the amount of bad.
I have read many articles on nerve regeneration and the consensus is time. (24 months). Some people say that axons will regenerate slowly even after 4 years they notice things getting better.
what condition are you in now? are you able to function alone?
December 3, 2012 at 2:15 am
Larry–thanks for sharing your brothers experience. Yes I am able to function alone. The cidp has affected the nerves in my calves and feet, causing walking and balance difficulty. I dont use anything to walk—but do not walk very fast anymore.
I am awaiting a date for an emg/ncv to be done sometime this month. If the emg shows any improvement then I will stay with the rituxin and try another treatment. If not, I will apply for a sct. I have already spoke with Paula at northwestern, she has e-mailed me the paperwork
looks like your brother has been through a lot of treatment for his cidp–especially since only being diagnosed 6 months ago. I dont think my dr has been as aggressive as some. If i dont get into northwestern I plan to look for a dr who will treat more aggressively. My dr is so concerned over what might happen in 10-15 years on every treatment—she seems to forget that i am worried about right now, i dont care if i get cancer in 10 years from immunosuppressants if it gives me 10 more years of walking.
Patience is definitely needed with this disease—and I will be the first to admit, I dont have it. My feet just wont do all the things my head and heart want them to and are not keeping up no matter how hard i push them 🙁
I do have axonal damage which, you’re right, takes longer to heal. Lori
AnonymousDecember 11, 2012 at 1:41 am
Lori – don’t wait if you are even considering SCT. I sent my application in on June 6 & first evaluation appointment was mid-September. My diagnosis was confirmed 7 we applied for insurance coverage and got the 1st formal denial in early November. At that time the self pay option opened up and I opted to go that route while we continue to appeal the insurance decision. AFTER I paid then the pre-testing started – last week Dec 3-7. As the results of those tests appear to be ok I am now scheduled to be SCT #38 starting in Mid-January. My point is starting the application process is not a point of no return it is just the inquiry to see if you even get invited to Chicago for the confirmation evaluation. Lots of time to change your mind. I moved fairly quick with the decision. 1st symtoms August 2011, major loss of strength & mobility by Dec. 2011, went thru steroids with little improvement then to IVIG with limited & cyclical improvement even with weekly infusions. The CIDP specialist neurologist at NW (Dr. Allen) advised there were some other treatment courses i could try but they to were designed to fifght the symtoms not fix the route cause. I had full blown diagnostics done at Mayo in Jacksonville FL as I had used them for the past 15 years of so for executive physicals & they had great records of my unremarkable overall health over that time. I did consult again with my Mayo neurologist & he was supportive of the SCT investigation if I was unresponsive or had limited response to the current treatments. My local neurologist is not in favor of the process as he feels it is too risky but respects my decision.
In a nut shell, if your are seriously considering SCT apply now. the timing will allow you to see if your new treatment is working if you have the opportunity & are accepted for Dr. Burts program. Any readers try this link if you desire more info http://www.stemcell-immunotherapy.com/
December 14, 2012 at 3:23 am
Pat–I have spoken with Paula at Northwestern and she e-mailed me all of the paperwork for the sct. I have some tests scheduled on the 19th–next week. If they show cidp to be active still, then i will apply for sct. I had rituxin 6 months ago.
So yes, have started sct process–am not wasting any more of my life with this disease. I have said all along that I do not want to be having “treatments” the rest of my life and will do whatever it takes to be free of them and cidp.
The timing is a little better for me now than in the past for the sct, my youngest son has his license now, so that makes things a little easier, as he is involved in many sports, activities etc, doesnt need me to drive him everyplace now.
Was diagnosed in june of 2009, its been a loooong three and a half years, im ready to be done with this.
May I ask who you have for insurance? i have anthem and am expecting to have to go through the appeal process with them if i get accepted into the program—ugg!! im still in the appeal process for the rituxin.
I also went to Mayo–but the rochester MN to see Dr Dyck. He also felt i have cidp–but “atypical” unsure if that will affect sct or not. He said it is definitely inflammatory, but i dont have predominate demylination which is why its classified atypical. I have had the sural nerve biopsy and lumbar puncture which both showed signs of cidp. I guess the only way to tell will be to try. Im sure Dr Burt is not going to want to do a sct on people who he doesnt think it will work for–especially since it is still in the clinical trial phase.
good luck with your process—I hope you get the insurance approval. Lori
January 12, 2013 at 7:15 pm
Just as a comment, I used PE as part of a combination therapy for a bit over five years. I lost count of the number of treatments, but it was on the order of 250.
AnonymousJanuary 14, 2013 at 6:08 pm
My brother has improved somewhat in his walking and stability. He is able to stand for 5 minutes without needing to hold anything. (the feelings in his toes are starting to come back slowly which is helping). As for his hands his grip strength has gone up from 5 to 17, still a ways off from the normal of 90-110. This is slower, but we hope that it will strat to improve. He is approaching the 12 month recovery mark in March.
Mark, how did you find the PE? Are you significantly better than you were 5 years ago? I’m interested to understand the satges of recocvery. Anything will help.
February 2, 2013 at 12:51 am
Unlike your brother, my disease course was a moderately quick decline to a point, and then a very rapid decline after that. Treatment, though, would arrest the rapid decline and promptly return me to nearly full function in a week or so. I am considerably better than I was five years ago. That I am significantly better now, though, does not mean that my treatments necessarily caused a reversal of the disease, just that they kept the effects from being more severe and long lasting. My neurologist and I believe that I suffered very little damage to the axons and nerve bodies and that my myelin, while not perfect, is in decent condition. Based on your descriptions, I think your brother may have also suffered from axonal damage. His recover will necessarily be slower, just because axons regenerate more slowly than myelin. I am afraid, therefore, that my experience and your brother’s are so different that what worked for me may not work for him. Still, nothing ventured, nothing gained.
I found PE to be very helpful, even essential, in maintaining function and almost benign in administration. I had a central venous access catheter, so the process of the PE itself was painless. It was time consuming when I was getting it several times a week, but because I had such good response, it was well worth it. Maintaining the catheter was essential, and I did so with vigilance.
Godspeed in finding an effective treatment
You must be logged in to reply to this topic.