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  • AMFADVENTURES
    replied
    Glad to hear your infusion was uneventful Suebee. I think the protocol does allow for the infusions to be given at a faster rate once the center is confident you're not exhibiting any significant adverse reaction.

    I just wanted to pop in to say that it was about a month after my last infusion before I started to feel better MS wise. This might have been due to the fact that I waited 11 months between infusions due to all of the Covid pandemonium. At any rate, all is well now.

    Larry

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  • Suebee
    replied
    I had my 6 mo infusion at hosp and all went well. It was at major hosp in houston. Our cases are high here.. My commiitmdnt to staying on dmd was greater than my fear of getting covid. But close. I wore n95 mask and brought my phone and earbuds, and a packed lunch. I removed my mask to eat. I was really careful to hold sandwich in sandwich bag as I ate it. The hosp put more safety protocols in place since my prior visit a month ago: 3 people max in elevator, signs on seats preventing close seating, and 1 way hallways/ exits/ entrance. Everyone in infusion room wore masks and a staff person was dedicated to cleaning services after a patient. I had benadryl and steriods in IV before ocrevous. No negative side effects. Because it was full dose, it was administered at faster speed than last time, but I don't think its speed was related to limiting my time in clinic.( I've read that some hospitals have tried increasing speed of infusion due to covid) benadryl makes me sleep, so I slept most of time. I had my hubby drop me off and pick me up outside hospital because guests weren't allowed. But I felt safe and glad to be at full dose. I hope to see positive differences soon.
    hope you are all doing well. Suebee

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  • Suebee
    replied
    MSLaz, So great to hear your infusion went well and you are feeling stronger!!! Yay! Thatís great news and we all can certainly use some right now. I had my full dental cleaning exam yesterday as part of my overall plan to keep body healthy before infusion next month. It was anxiety provoking because my area has had dramatic increase in covid but my dentist office took a lot of precautions, including using tools with disposable coverings. I wore wrap around safety goggles from home too. Stay safe, all my best Suebee.

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  • MSLazarus
    replied
    I had the first of 2 infusions last week and will have the second next week.

    I am so much stronger that really it is like day and night. I was a lot MSy and really concerned I had run out of luck. But I have been farming strongly and am full of energy.

    Have to run now but I am glad we are doing so well.

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  • Suebee
    replied
    Larry, glad to hear you got your infusion and it was relatively uneventful. Nice to hear about your post infusion bike ride too. Iíve been feeling MSy too and worried about my transition from copaxone to orcevous as I approach the 6 month mark. I understand my 6 month infusion will get me to therapeutic dose. Iím anxious to be there. But My neuro wanted an mri before hand, and I was very anxious about going to hospital for mri. I wore a mask and had to ride elevator with several people, all with masks, and Iím guessing we all were holding our breath. I too tried to circumvent the screening because it caused a chaotic line up in lobby of hospital. I was screened and made my way to mri. There I again stood in a staggered line to check in, and moved my seat when a woman sitting near me kept stifling a cough. Once I was waiting in MRI nurseís station I had my choice of seats, and looked for one not near an overhead vent. In the mri room I was asked if I was ďcomfortableĒ removing my mask for mri or if I wanted a mask without metal nose piece. I opted for mask without metal nose piece. I did not anticipate that a mask would increase the claustrophobic effect of the mri tube and I had to focus on meditation techniques to not freak out. I got through it. When I got home, I took a shower and changed clothes. Iím scheduled for infusion next month. I hope it goes smoothly like yours. Good health to all of you. Suebee

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  • AMFADVENTURES
    replied
    Latest Infusion

    I alerted my Neuro that I was starting to feel a little MSey about the middle of last month. It had been 10 months since my last infusion and the blood test he did at the 6 month mark didn't show any renewed B-cell activity. He set up another blood test which interestingly, did not show any significant difference from the last one 4 months earlier. ?????? I'll have to ask about that on my next appointment, but, based on my complaint, he approved my next infusion anyway.

    Although I was nervous about going to Covid central for another immunosuppressive treatment, things didn't turn out as bad as I had feared. I went in early, got through a temperature check at the front door, tried to circumvent the check in procedure but couldn't do it and because I got there early, didn't find it too bad anyway. I was the only person on the elevator to the infusion center on the top floor of the building and only one of three people in the relatively small waiting room. So far so good.

    I could have done better with my choice of chairs in the infusion center. Instead of picking the one furthest from anyone else currently receiving an infusion, I should have picked a chair furthest from any other chair in the room since most of the chairs filled up over the next hour. There wasn't a huge risk of exposure though because the usual distancing and face mask procedures were in place. My exit was as uneventful as everything else.

    My infusion was with 500 mg of Truxima, the new Rituxan biosimilar, it took the standard 3 hours and included a steroid, an antihistamine and Tylenol, the normal protocall. As usual, I felt like crap that evening and didn't sleep well. I felt better the next day and went for an easy 20 mile bike ride with no problem.

    After one more day, I felt good enough to ride the small hills around the reservoir near my house and turned in my best time of the year so far. Everything worked well on that ride, my heart rate responded, legs worked when I asked them to and my breathing was particularly steady and controlled. Got some great HIT's in. Except at the very beginning of the year, that was as good as I've felt this year.

    It it had been 11 months since my last infusion and I do regret having waited so long but in light of the poor information and general chaos at the time, I believe I made the right choice. At any rate it appears that 8 to 9 months is the right frequency for me and the infusion centers have managed to get a good handle on providing least possible exposure to Covid-19 by now.

    Best of luck all,

    Larry

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  • MSSpouse
    replied
    Infusion scheduled

    We were notified yesterday that Ocrevus infusions from our provider are coming off 'hold' and are being scheduled. We're set for next week. The facility is freestanding and only handles infusions, will not be running at full capacity, and partners/guests aren't being accommodated at this time. As a result we're not too worried about risk of exposure there, but will of course exercise a lot of caution. We had the first set of two 'half' infusions about seven months ago, so this will be the second full dose. Wondering if folks elsewhere in the country are hearing about infusions being resumed (we're in the north central/midwest). Our doc is pretty conservative; he was very quick to put these on hold as the crisis emerged, and what we've been seeing suggests that there hasn't been increased risk to those on this DMT. Hoping for the best!

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  • Suebee
    replied
    On scheduling calendar but..

    I'm on scheduling calendar at hospital for an MRI and infusion in July. I plan to discuss with my neuro the options when its gets closer. I'm in Houston area, we haven't hit peak yet. Im skittish to go near hospital let alone be in MRI and MRI room when virus can hang in air for hours. I'm hoping the hospital has moved the infusion suite to a covid free building. I didn't know an infusion at home might be an option. That would be fantastic! Since I just had 1st dose in jan, I'm anxious to get full effect of dosing. My hubby's continued emoyment is tied to price of oil. And so I worry about postponing treatment in case we lose insurance. These decisions are never easy anyway. It has been great motivation for me to stay healthy, eat well, and self care.(but I admit had my share of chips and drink several weeks into sheltering) My dog certainly likes the increase in walks around the block!
    Stay well friends. This will eventually pass.

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  • MSLazarus
    replied
    Just what I was thinking....although

    ...I was thinking of cancelling mine for the first and third week of June. My legs are weak in a new way but everything else is stable so I thought of pushing it to August. Maybe a home infusion?

    None of my farmersí markets are opening on time if at all. The younger and/or farms with crews of workers are setting up virtual markets. Kind of neat but not what we can manage. (We planted spring crops anyway....🥴

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  • AMFADVENTURES
    replied
    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.

    Larry

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  • MSLazarus
    replied
    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.

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  • Lmh
    replied
    Lmh

    Thanks Suebee! More great info

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  • Suebee
    replied
    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.

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  • Lmh
    replied
    Lmh

    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:-(

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  • Suebee
    replied
    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.

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