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  • #76
    Thanks for the update Suebee, sounds like it was pretty easy for you. They don't give me bennedryl any more because it puts me to sleep and apparently I am a horrible snorer in an upright possition. They do give me a different antihistamine that does not put me to sleep and it really is noticeably easier on me in terms of the scratchy throat thing.

    Linda, hope you get on top of those problems. So many different things could cause that. Somehow I doubt moving to ocrevous is a bad thing though.

    I mentioned in an earlier post that my HMO is changing my drug from Rituxan to Tuxima. Turns out the copay on the new drug is about 50% more. I'll have to look into that. I am perfectly happy with the Rituxan.



    • #77
      Hereís wishing us all well

      This is the first time in 30 years that we are stumped and I am having trouble thinking, reading, moving and maintaining the farm.

      And no one knows what is wrong....causing the heart palpitations, swings in blood pressure, shortness of breath and general body weakness. It is irritating to have no idea which way to turn. Several new doctors but tests are stretching into April....I do now have an inhaler it is does help.

      Well, I need to map out a plan to handle each day and maintain hopeful thoughts and humor. Just wish it was not so hard to crank up this old body!

      P.s. I grow my own turmeric! It is easy and makes a nice looking houseplant too��
      I have been a vegetarian for 52 years and find the benefits of certain spices amazing.
      Last edited by MSLazarus; 02-06-2020, 08:25 PM.


      • #78
        MSLazeros, I've been thinking about your situation since your last post. Sometimes I've noticed that simple solutions can get overlooked by medical specialists. UTI Culture can find uti s missed by traditional urine sample. Similarly with blood culture. Low potassium can occur if one takes a statin. Vit d, b12, and iron can be depleted and not tested. Also livestock and pets get some live vaccines that can be a danger to immune compromised humans in close proximity. I thought I'd throw it out there. Hope you are feeling better soon.


        • #79
          Animal live vaccine and possible risk to immune compromised human



          • #80

            So, I just have a question as Iím contemplating a medication switch. Inactive SPMS, but slowly progressing... my neurologist is offering up Tecfedera. No Orecrevus or Rituximab .
            Says my MS doesnít warrant these medications, and that itís possible for MS to burnout with age. This seems inaccurate based on the literature that Iíve been reading, even though there is some research exploring stopping DMTís in older PwMS.
            What are your thoughts? Suebee do you still have active MRIís?


            • #81
              That is a big question.....

              Many years ago I was about to switch meds and wanted a second opinion. I don’t know why. My neurologist was the best you could imagine and he had always sent me for second opinions when it seemed Important.

              Anyway, I did not listen to him this time and made my own appointment with the head of the neurology dept. at Hartford CT. Hospital. Sure enough he advised against using any med because I was in my 50’s and the MS would just fade away! I wa shocked. Fortunately my insurance company never got this guy’s report.

              So, I went to see my neurologist again and told him about my visit in Hartford. He looked at me and quietly said “ I told you not to go”. I am laughing now just remembering ...

              So now I am 72. I am a very active farmer and my doctors know that as my MS slowly progresses my goal is to be able to keep farming. The thing that makes the decision for me is the low profile of side effects with rituxan/Ocrevus. I am not sure what I would do if the rituxan stops working. I am in a tough situation because previous cancer makes some meds more dangerous for me.

              Let me know what you do! Best wishes....


              • #82
                LMH, just a couple of thoughts.

                My impression of the MS burnout with age theory is that it is based primarily on anecdotal evidence and secondarily on a lack of active lesion activity on MRI's generally in people dx'ed SPMS. Anecdotal evidence of course is not the same as scientific evidence. And most neurologists agree that the lesion activity seen on MRI'S is only the tip of the iceberg when it comes to the damage done by MS.

                A better metric, particularly for people diagnosed as secondary progressive, might be brain volume or more specifically, the reduction of brain volume over time. You might consider asking your neurologist or radiologist to look over your last few MRI'S specifically for brain volume. Any indication of an alarming rate of brain volume loss might be a good reason to switch to a more aggressive disease modifying therapy.

                I probably would not have gone on Rituxan had it not been for an extended period of rapid MS progression which BTW, did not show up as an active lesion on the MRI but may have been evident as an enhanced lesion!

                Good luck,


                • #83
                  Ditto....much more coherent explanation than mine

                  I too have no indication of active lesions......not in years. ( Although I have read about newer MRI machinery that can expose more MS activity).

                  My neurologist understood years ago that it was not a surprise to find MRI reports with no significant change from the previous one and yet my MS was progressing.

                  I have asked about brain volume in the past and he always said he had no information and would look or maybe he just let the question drop in our meetings. I do realize that I never followed up to get an answer.

                  It has been on my mind for the last year. Your answer is at the right time for me because I think change is looming over me.


                  • #84
                    Hey Linda,

                    I actually refuse to get any more MRI's unless my neurologist promises to give me his opinion of brain volume. Apparently my neuro passed this along to the radiologist because on my last MRI the radiologist included an evaluation of brain volume relative to normal. So now I'm getting two professional opinions both of which indicate that there is no significantly abnormal reduction of brain volume! I'm pretty happy with this arrangement even if, as I believe, both are somewhat optomistic.

                    The problem is that they are just opinions. I have read about software being developed specifically to evaluate brain volume and changes in brain volume from MRI data but usage is not commonplace yet.


                    • #85
                      Lmh and all, I share my personal experience to help others understand my personal decision to take orcevous. I feel as a patient that I should weigh DMD choice risk benefits based on my circumstances so long as I fully understand issues and use neuro as a guide. SPMS is usually determined in retrospect based on clinical course, but there are some basic understandings (mri new lesion load, 15-20 years after diagnosis, brain atrophy, and specific performance parameters on cognitive testing)
                      I have no active lesions But new technique identified previously not seen lesions. My current mri shows lesions but not horrible. This is contrary to My initial attack, which was aggressive and long, leaving me homebound with caregivers. That initial lesion area over past 15 yrs shows disproportionate atrophy as does certain cortical.area not equivalent to my age. My mother died young from progressive ms. I have been unemployed more than employed. Neurocognitive testing showed some deficits consistent with What is commonly seen in some MS patients. I'm a cautious and risk adverse person, but I felt now was the time to use the biggest hammer I had against MS. My children are teenagers now and are not as dependent on me.

                      I am peeved by current trend for some neuros to discuss MS" burnout " . The world ms symposium ? Stated that the med evidence supporting this theory is weak and many neuros were alarmed saying that it is not " burnout" being g observed but that DMDs have worked. And and a certain percentage of patients will have "breakthrough" flares , which will require treatment. This is not acceptable to me since SPMS will march fwd regardless of this intellectual debate, and if I have "breakthrough" flare than I am the one that will need to put the pieces of my life together again and live inside this body with more disability.

                      Also I want to say that I believe neuros want what is best for their patients but every neuro has their own level of risk adverseness, thus I think it wisest to understand the med evidence behind their recommendations for particular DMDs and make ones own determination, with dr as guide. I deliberately chose to mitigate orcevous increased risk of infections by seeing an internist every 3 months to ck in, keeping up to date on all vaccines and wellness stuff, increasing dental cleanings to every 3 mo, and being a hand cleaning freak of sorts. I also started eating more plant based meals, and cut out my wine, at least for now, on theory that I wanted my body to focus on healing itself and not metabolizing alcohol. Mediation has been helpful to keep positive mindset. I was told about 33% actually (subjectively) feel better on ocrevous so I've been doing everything possible to be in that percentage. I think everything I'm doing is making me feel better, whether this DMD will slow my progression will need to be assessed in later date. I've picked a goal - to continue to be mobile in 10 years and generally independent. MS is a progressive chronic disease and no matter how brilliant or well meaning a neuro is, if they are a spry 40 year old person for example, how on earth can that dr do a meaningful risk benefit analysis for me? That dr has no real understanding of what An MS patient is willing to risk to stay mobile and independent. Best Advocate is you.


                      • #86

                        Thank you all for your sound advice. Itís very appreciated since I donít have anyone to have a discussion in person. My issue gets complicated since Iím limited with my insurance, but Iíve already started collecting my medical records and my MRIs and will at least try to get a second opinion with an MS neurologist. I just got the latest Narcom Now magazine, and there is discussion about stopping DMTĎs in people 55 years and older with no MRI activity! I may not have any MRI activity but I am progressing:-(


                        • #87
                          Lmh , two pieces of info might be helpful: 1) ocrevous currently has a generous patient assist in US if you have insurance; 2) if you have documented neuro cognitive deficits, ocrevous is shown to reduce and possibly improve cognitive decline. You are welcome to message me privately if you other questions. Best wishes.


                          • #88

                            Thanks Suebee! More great info


                            • #89
                              Ocrevus is essentially the same as rituxan...

                              You can read lots of user responses if you read about rituxan. Both drugs made by same company.
                              Good luck.


                              • #90
                                It's been over 8 months since my last infusion but I blew off the next one, for a couple of reasons.

                                My Neuro suggested I consider not doing it right now and I agreed as I'm not feeling particularly MS'ey at the moment. Plus I'm not keen on visiting any health care provider, doctor or clinic right now as they are all on the front lines of the pandemic and I would just as soon limit my exposure. So, we'll see, maybe in another couple of months, unless of course, the MS does flair up.