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Are aquaporin 4 antibodies appear in any other context than Devic's syndrom?

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    Hi again Sasha84,

    Yes, Rituxan is anti CD20 but reinfusion is dictated by the status of the CD19. Desired levels are 0% and 0 absolute count with reinfusion being indicated once the CD19 rises to a level of 0.1% The test used to track CD19 is the Lymphocyte Subset Panel 1.



      Originally posted by Sasha84
      So, I was searching for a doctor in Poland who deals with NMO and rituxan and I found a doctor who might deal with it and then I even found some research on rituxan with NMO with the name of this doctor (I am assuming its the same doc but cant be sure)
      However, in the paper I am linking bellow, he spoke about "CD20" (you say its CD19) and the dosage is different.
      Any reason for differences you might think off?
      Hi Sasha:

      In the paper you linked to, the Rituxan dosage is different than the protocol Grace talked about because this was a research project that tested a particular drug regimen. This project tested two medications, rituximab and mycophenolate mofetil (which is CellCept), each at half the dose that is used when the drug is used alone. In this case, Rituxan was used at half the usual dose and mycophenolate mofetil was used daily at half its usual dose.

      Three subjects is nowhere near enough for a statistically valid sample, but three subjects might have been the best the researchers could assemble and test in the medical environment in Poland. The results still provide information to the medical community, and the results were deemed important enough to present as a poster at ECTRIMS.

      Research is obviously how treatment protocols are developed. When I was on Rituxan years ago, the dosing was done by body volume. I was weighed and measured before every dose was calculated. Apparently research since then has led to a different protocol. And, from what you've described, the Polish medical system is requiring repetition of research to develop a national treatment protocol.

      The authors of that paper are three sources you can contact who might be able to guide you to better NMO care for your mom, or who might be able to tell you if your mom can get into a research project/clinical trial. Because that research project is evidence that Rituxan can be used in medical research in Poland, at least under certain circumstances.

      And it sounds like your mom is going to need a doctor who has experience with Rituxan and is actually allowed to prescribe it, even if it's only in the controlled setting of research. It doesn't matter what the Guthy-Jackson NMOSD Clinical Consortium tells your mom's doctor about the "official" protocol for NMO treatment or whether the manufacturer will provide it free of charge if the medical system in Poland won't allow it to be used. Those research doctors could be a way for your mom to access Rituxan, or maybe easier for her to access CellCept.

      Your mom's current neurologist could possibly start his own research project and enroll your mom, but it might be easier to get her into a project with doctors who already have experience with Rituxan research, even if its only one project.

      Or, if you can manage it, you could take your mom out of Poland and have her treated internationally. Maybe the Guthy-Jackson Charitable Foundation or their Clinical Consortium could offer some advice about that.

      How is your mom doing?


        Originally posted by Sasha84
        Does NMO affect persons character, like person gets harder to deal with, more easily frustrated, etc?
        What you're describing is very common in anyone who has been through a traumatic event of any kind. Personality changes can be a result many things including a serious medical diagnosis like NMO, a stroke, a heart attack or cancer, a car accident, an assault, loss of a job, or the death of a loved one. Psychological trauma often accompanies physical trauma or illness.

        Your mother has been through a traumatic physical ordeal, so it's almost expected that she will also be psychologically traumatized, as evidenced by her being depressed, frustrated and harder to deal with. You and your sister may be showing the same stressful effects to some degree, too.

        No matter what else may be going on, it's important to not underestimate the psychological effects of the traumatic event your mom has been through.

        While NMOSD primarily affects the spinal cord and optic nerves, it also causes brain lesions in some people. If those lesions are in the right places, they can cause personality changes. If your mom had a brain MRI, the radiology report and her neurologist will know if she has brain lesions in the right locations to cause personality changes. If she doesn't have brain lesions, then the disease itself would not be the cause of her personality changes.

        Originally posted by Sasha84
        She have some urinary tract infection and I am worried how will it go, antibiotics with her imuran and steriods.
        Your mom really doesn't have a choice here. She has to be on antibiotics because the Imuran and steroids are suppressing her body's ability to fight off the bacteria. Unfortunately, infections are common when the immune system is suppressed, so there may be more infections of various kinds and more antibiotics in the future.

        Originally posted by Sasha84
        Her MRI showed inflammation decreased, she had inflammation from 1 to 11 vertebrae in thoracic region, now its length decreased from 3rd to 9th vertebrae and gotten 50% narrower.
        That's very good news. Imuran is a good medication, and it sounds like she's getting benefit from it.

        I'm sorry I don't know the answers to your questions about the information on the Guthy-Jackson website. You may have to ask them and hope they answer.

        I hope your mom continues to recover and that you find a doctor who has the kind of experience with NMOSD she needs.


          Hi Sasha:

          Every medication used for treating neurological conditions and their effects have potentially bad side effects. Every one of them. Everything is a trade-off between the effects of the disease and the effects of the medications used to treat the effects of the disease.

          Baclofen and gabapentin are the two most commonly used medications for cramps and spasticity. I take baclofen every night, but only 10 mg. If I'm going through a crampy phase, I take another med during the day that doesn't control the spasms as well but doesn't make me sleepy. (That's one of those trade-offs I was referring to earlier.)

          Carbamazepine is prescribed in the US for cramps an spasticity in NMO and MS and brain and spinal cord injuries. But gabapentin is more common. If gabapentin doesn't do the job for your mom, maybe the neurologist would be willing to try cabamazepine.

          Gabapentin and the drugs like it are used to treat nerve pain. But since they calm down the excitability of malfunctioning nerves, they are sometimes also useful for cramps and spasticity by calming down the misfiring of the nerves that triggers the spasms. My neurologist offered gabapentin to me at my last appointment for my leg spasms, but I declined because my spasms aren't bad enough to justify taking on the side effects of the drug. (There's that trade-off again.) So for now I'm taking only baclofen.

          One of the reasons gabapentin is so widely used is because it seems to have the best balance between effectiveness and side effects. For your mom, there probably isn't anything safer that's going to work. In the US, there are several other drugs that are used when gabapentin isn't effective, but it doesn't sound like they'll be easy for your mom to get in Poland.

          Have you tried yet to contact any of the doctors who were the authors of the paper you posted about earlier or the neurologists listed on the Guthy-Jackson Foundation's Connect-the Docs site? Maybe one of them will have more professional freedom and/or more willingness to try different treatment options.


            Hi Sasha:

            Yes, it sounds like your mom has actually had pretty good care. She was admitted to a good hospital and appropriately treated with high-dose steroids reasonably quickly. She was tested for NMOSD at the time, which sometimes doesn't even happen in the US. She was quickly admitted to the hospital a second time and had spinal MRIs again. And she's on appropriate medications: azathioprine, prednisone, baclofen, and gabapentin or carbamazepine, whichever she chooses to use. That's all very good.

            The hard part now for your mom is learning how to adjust to the "new normal" of her life. Talking about it only gets a person so far. She's going to have to go through all of the experiences herself until she finds her emotional equilibrium and learns to adapt.

            At some point she'll come to understand that a cramp doesn't automatically indicate a relapse and it will pass. No matter how painful it is or how long it lasts, it will pass. And if she does have a relapse, she knows that she'll be admitted to the hospital and treated. She's not being left on her own. And there's the possibility of hooking up with a neurologist with access to Rituxan. Those are things to look forward to.

            She'll have to go through all the stages of grief that anyone who has had a devastating change in their life goes through. After all the stages, she can get to the point of acceptance of what is. None of you are going to wrestle her NMO to the ground and kill it. Acceptance doesn't mean giving up. It means looking at the rest of the bigness of life and moving forward. So if she doesn't decide to stay stuck in a perpetual state of resistance, she'll get to a point of acceptance and be able to find her enjoyment of life again. It will take awhile, but she can get there.

            Sending good thoughts and wishes to your mom, your sister, and you.


              Hi Sasha,

              Your description of your Mother's spasms sounds very much like tonic spasms. They are excruciating. If this is what she has been experiencing, my sympathies are with her as I have suffered with them for 12 years now. In the majority of cases they resolve with the passage of time but not for everyone. They don't respond to the usual medications such as gabapentin or baclofen, but do respond well to anti seizure medications. I initially used Tegretol (carbamazepine---1800 mgs per day) but eventually began to have breakthrough episodes. I then switched to Trileptal (oxcarbazepine) but unfortunately it caused hyponatremia and I ended up hospitalized. I then used Keppra (levitiracetam---5000 mgs per day), but eventually had breakthrough episodes on it as well. Currently I use a medication called Cytotec (misoprostol). It's an abortifacient but did well in a small trial for trigeminal neuralgia (both TN and tonic spasms are ephaptic events). I've done very well on it and rarely have any breakthrough episodes. I do keep a prescription for Tegretol on hand, and in the event that a breakthrough episode occurs I add one or two 200 mg tablets. While using Tegretol, I regularly had a CBC and also tests to monitor liver function. In the US, Tegretol is the drug of choice for tonic spasms and is used by many, many, NMOSD patients.



                Hi Sasha:

                Sorry to hear about your mom. How is she doing?

                There are a couple of important distinctions to make about symptoms and relapses. Relapses require the onset of inflammation, but once nerves are damaged, symptoms can continue even when there is no inflammation present.

                It sounds like the damage to nerves in your mom's spinal cord resulted in an abnormal burning sensation. The damage from an attack an be permanent, which means that the burning sensation can be permanent -- a result of the damage, not because there's any new inflammation. The burning sensation can vary somewhat over time depending on other body factors. Malfunctioning nerves can continue to malfunction and cause abnormal sensations and it doesn't necessarily mean that there's an inflammatory relapse occurring. Telling the difference between an periodic increase in symptoms and an increase in symptoms caused by an inflammatory relapse based only on the burning sensation is something your mom is going to have to figure out through experience.

                A relapse can cause any kind of neurological symptom or symptoms, depending on what nerve tracts are affected by the inflammation and how big the inflammatory lesion is, which determines how many nerves are affected an how many problems are caused.

                It's possible for a true inflammatory relapse to cause only a burning sensation. But lesions in NMO tend to be very large, which means they cover many nerve tracts of different functions, so it isn't uncommon for them to cause more than one kind of symptom at the same time. That's the tendency about NMO that makes the occurrence of only one symptom -- the burning sensation -- to be more suggestive of an non-inflammatory increase in the sensation rather than a relapse. But both scenarios are possible, and your mom may have to go to the hospital every time she has a big increase in the burning sensation to be able to tell the difference.

                I think you're right about the MRI. A burning sensation isn't a threat to physical functions, so it isn't an emergency or even a priority for an MRI.

                Why the burning sensation? There's no meaningful medical explanation for it. It's just the way your mom's damaged nerves are demonstrating their malfunction. Some people's nerve damage makes them go completely numb in affected places, with no sensation at all, some people have tingling, some have itching, some have burning, some have electric-shock sensations, some have aching pain, some have stinging pain, some have a wet or cold sensation, some have "creepy-crawly" skin sensations. There's no real explanation for why someone develops one type of abnormal sensation and not another. And the type of symptom a person develops has no significance of its own. The significance lies in how bad the symptom is and how disruptive it is to the person's life.

                There's no anatomical reason to suggest that a burning sensation of that magnitude and severity is a sign of healing. Anatomically, it's more a sign of ongoing damage and malfunction, which can vary in intensity, and possibly a sign of new damage from a true relapse. Nerves that are healing or have healed normally have better function, not worse.

                The pain may get better if the nerves have more healing or it may not. Unfortunately, it isn't possible to predict what's going to happen in any individual.

                I hope your mom is able to get some better communication with her neurologist and get an in-person explanation of what's happening and what it may mean. Her neurologist knows her case and is in the best position to speak specifically to her situation.


                  Hi Sasha:

                  Thank you for the link to the article about tonic spasms associated with NMO. I read the entire article. Unfortunately, it doesn't quite say what you think it says, and it doesn't quite mean what you think it means.

                  In the article, "recovery period" refers to the time after an acute attack when the attack is finished and remyelination is occurring. The article does not make an association between "recovery period" and "remyelination," and "healing." The finding that the spasms began coincidentally in time during the "recovery period" does not in any way indicate that the spasms are a sign of "healing." There is no suggestion of cause and effect.

                  The researchers say the opposite. They weren't able to determine the mechanism for why the spasms started during this time. Also, there are a couple of other reasons that suggest that the coincidence in time is not an indication of healing: 1) the majority of the NMO patients studied passed through the recovery period without developing spasms, and 2) one of the patients had spasms for 11 years, which is also pretty much the opposite of an indication of "healing" at only a few months after the attack.

                  So no, the article doesn't suggest that the spasms are a sign of healing, as if they mean that something good is happening. That agrees with the guideline that nerves that are "healing" don't become more dysfunctional. They function more normally.

                  It also agrees with the researchers' finding that some of the patients in the study required long-term therapy for the spasms, including the woman whose spasms started again when she stopped taking her medication after 7 years and had them last for 11 years.

                  The same guideline applies to the burning sensation. It is also not a sign of healing or an indication that good things are happening. The burning sensation and spasms going away would be an indication that good things are happening. And I hope that time comes soon.

                  Originally posted by Sasha84
                  Since mom now takes baclofen and karbamazepine from neuropathic pain, is it possible its not enough?
                  To answer that you'll need to find out how much of each you mom is taking and compare that to the maximum recommended dosages for each one. If she's taking relatively small doses, then it's possible that it might not be enough. But if she's already at the maximum recommended doses, the issue wouldn't be that it's not enough -- the issue would be that the meds just aren't effective in her case and more would not be better.

                  An interesting thing about the spasms research was that a couple of the patients didn't do as well on gabapentin to treat the spasms as they did on carbamazepine or phenytoin. So this research suggests that your mom's neurologist was wrong about carbamazepine for the spasms. It apparently does work well for treating tonic spasms from NMO, possibly better than gabapentin.

                  There are several medications that can be used to treat neuropathic pain. Most, but not all, are anti-seizure medications. As far as "modern" medications, your mom was already on one of them -- pregabalin. You didn't say how it worked for the burning sensation, but apparently it aggravated the spasms. So this is another example of how modern doesn't mean better.

                  You can do an Internet search for names of medications that are used to treat neuropathic pain and abnormal sensations, and it sounds like you already know of many of them from the searches you've done. But that's just a list of possibilities. Drugs work differently in different people, so your mom may have to just keep trying as many different medications as her neurologist will prescribe until she finds one or two that work better overall to ease her symptoms than the baclofen-carbamazepine combination she's taking now.

                  Have you made any progress in finding a new neurologist to evaluate your mom? You had a least 6 names of possible doctors. What happened when you contacted them?


                    That's too bad about the allergy. I can sympathize with your mom because I've also been in the position of taking a medication that was working well but the side effects were too much to handle and I had to stop. Really, that's just life, and it's important not to overthink it or overmourn it and just move on to the next choice. It's a skill that has to be intentionally developed to learn how to not become emotionally invested in outcomes. It's an excellent skill to develop, because every moment spent in sadness and regret is a moment a person robs themselves of happiness.

                    There still are other medications your mom can try for her spasms. Any of the anti-seizure medications are possibilities. Phenytoin was used in the the spasm study we discussed recently. If her spasms get bad enough again, it might be enough to get her to overcome her fear of gabapentin. If she develops side effects from gabapentin that she decides she can't live with, she can stop taking it (she may have to taper off of it). It's really that simple. Starting a med doesn't mean she's obligated to take it for life. If she doesn't like it she can stop and try a different med. Maybe knowing that will help your mom to not get discouraged.


                      Hi Sasha:
                      Originally posted by Sasha84
                      She was released from the hospital yesterday where she got taken because of the rash from carbamazepin.
                      If your mom was in the hospital, it sounds like what she had was more serious than just a rash. People don't get put in the hospital for simple allergy rashes. And if it were just an allergy, it would have started getting better within about a week or so, not gotten so bad that she had to go in the hospital.

                      I'm wondering if she had a condition that in English-speaking countries is called Stevens-Johnson Syndrome. It can be very serious, and people do get put in the hospital for it. Stevens-Johnson often is a reaction to medications, and carbamazepine is one of the medications it can occur with.

                      Originally posted by Sasha84
                      I imagine it would be easier if there was at least a single good thing to look forward but there is nothing.
                      That's another part of the tragedies that occur with a devastating health condition. People lose their perspective and, by default, learn to look only at the bad things to the point that that's all they can see. But in any moment there are at least 1,000 good things going right, and 1,000 good things to appreciate. Good things to look forward to don't disappear just because someone has forgotten how to see them. They're still there, same as always.

                      Originally posted by Sasha84
                      If life was rough and we hoped it would get better at some point, now we cant even hope to get the old life back, much less hope for anything better.
                      Actually, hope is one of the keys to relearning how to see all the good things again. Hope only dies when you keep it in the dark and stop feeding it. You get to choose what to hope for and what to appreciate. It doesn't find you by accident. The only limit to the human mind is the belief that there are limits.

                      Setting the "old life" as the only acceptable condition is to intentionally create a world that's much too small to hold something as big and wondrous as a human being. Is it any wonder that such a tiny world feels so restricted and bad?

                      Hope will return if you're able to stop contradicting it with doubts. With time, the world will expand again if you recognize that it can.


                        Hello Sasha84,

                        Tonic spasms don't typically respond to the medications that you mentioned (pregabalin, mydocalm, tizanidine) but do tend to respond to anti-seizure medications, among them Tegretol (carbamazepine), Trileptal (oxcarbazepine), and Keppra (levitiracetam), which is why these medications are so often prescribed to treat them.

                        In regards to the quote---yes, it's true that gain of pain, muscle spasms, and headache/light sensitivity are signs of healing, but they can also remain as residual symptoms for many patients. My first attack was over 12 years ago and I developed tonic spasms shortly after. They have been present ever since that time though they are now well controlled with medication and I only experience periodic breakthrough episodes. Without medication they would no doubt be as frequent as they were in the beginning.

                        I'm not sure why your Mother will need a three to four week hospital stay for her first Rituxan infusion. Possibly they are planning to use the four week infusion protocol (375 mgs once per week for four weeks) as opposed to a one gram infusion followed two weeks later by a repeat dose of another gram.

                        Please keep us informed as to how your Mother is doing. I wish her well on her journey.



                          Well, the doctor explained to mom that Rituxan is too heavy of a drug, it can activate latent diseases and even cause death, it affects whole organism and the age of 60+ also need to be taken into consideration so, if my mom tolerates Imuran well, its better to stay on it.
                          This doc is also top shelf neurological expert here so I guess we follow the advice and drop the idea of rituxan for a while.

                          That said, recently read some horror stories on facebook page about people getting wrong treatment or living for 20 years undiagnosed with health deteriorating after every relapse.
                          The sole fact we managed to get my mom so fast, to so many specialists, who even heard about NMO is amazing in itself.
                          I guess for now we did what we could.

                          Currently looking into CBD oil, something we've seen people advise on facebook group.
                          Cost like heck but we hope it will bring some relief in pain.