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  #71  
Old 12-12-2019, 01:13 PM
AMFADVENTURES AMFADVENTURES is offline
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Join Date: Sep 2009
Location: Colorado
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Hey Suebee, Medicare pays for my Rituxan through my HMO. It is on the Medicare approved drug list for MS. I might also say that although the Rituxan hasn't entirely stopped my MS progression, it has significantly slowed it down. Hopefully you will at least get that much relief from the Ocrevus.

Larry
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  #72  
Old 02-04-2020, 03:25 PM
Suebee Suebee is offline
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Join Date: Mar 2015
Location: Houston, TX
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Red face Infusion update

Hi all, I wanted to give infusion update. I had ocrevous first dose, split in half and given 2 wks apart.
In general: I feel pretty good, in fact after 1st infusion I felt fantastic. I had more noticable energy and physical wellbeing. I rested 1st day per nurse instructions and then was quite active for me in subsequent days. After second infusion, I had something I needed to attend 1st day so didnt rest. I had a similar sense of wellbeing but felt fatigue requiring me to rest day 2 and 3.

The procedure: at hosp is infusion with steroids, followed by benadryl, then the ocrevous. It takes several hours. They start off slow and increase rate of infusion every 1/2 hour. The benadryl makes you sleep. I brought my own lunch, device to listen to with earbuds, and my hubby. I choose a positive meditative audio to listen to during infusion. I'm sensitive to the noise of clinic and earbuds took care of it. Nurses keep an eye on you for reactions. I had none.

Post infusion: The night of first infusion my throat felt a bit scratchy so I took oral benadryl per nurse instructions. The second infusion my eyes felt a bit scratchy/ achy so I took allergy eye drops. Both symptoms were mild and effectively managed. I've had some head aches but not sure cause.

Infection prevention: my family understands the importance of me not getting sick so if they feel under the weather they dont get in my face . I got a few superficial skin cuts that I normally would have ignored but I promptly cleaned and treated. I changed my toothbrush, use paper towels instead of family hand towel, went back to using strong mouthwash everyday, and put small handsa iter bottles in car and purse. When I had to take my child to urgent care and had to sit in a flu infested waiting room, I donned a face mask. I know basic surgical masks aren't too effective to keep out virus, but I felt better wear it anyway. My sick, normally embarrassed my mom teenager, r didnt mind. She is a Sweet kid. I recently found MS blogger Tripping on Air and planned on ordering a "cambridge mask" that she suggested for these type situations and kicked myself for not getting one sooner. and when I tried to order one on my phone from the urgent care lobby, I discovered they are sold out because of coronavirus fears. I will get one for this type situation when restocked. FYI - a dr on radio said that the pneumonia vaccine will be effective to prevent pneumonia if one gets the coronavirus because pneumonia is a secondary infection from virus. I hope so. As a reminder, consult with your doctor and update your vaccines before going on orcevous.
I hope that gives helpful info to anyone considering it. Suebee
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  #73  
Old 02-05-2020, 08:47 PM
MSLazarus MSLazarus is offline
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Join Date: Jan 2011
Location: western MA
Posts: 76
Default Thanks for the update

Wishing you all the best and really appreciate the details you provided. I have been ill for a few months and it could be rituxan side effects. Or not. Ruling things out one by one. So I might switch to Ocrevus.

I have been coughing since November, shortness of breath, back pain and others. Life has been disrupted although I still have a lot of energy. Chest X-ray clear, cat scan clear etc....heart tests coming. Using an inhaler now and it helps stop the cough. Surprised me!
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  #74  
Old 02-06-2020, 11:03 AM
Suebee Suebee is offline
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Thanks MSLazeros. I'm glad all tests showed clear. Both rixtaub and ocrevous can cause respiratory infections. You might want to try tumeric either a capsule or tea. I drink tumeric tea sometimes. I dont like taste, and it can upset my stomach, but do I do it for health. Science backed data shows it has an antihistamine effect on mast cells responsible for inflammation in lungs. It actually is shown to help with all types of infections. Here is article about study on lungs treated with a capsule tumeric amt. Might be worth a try.
Also, remember to brush and change toothbrush often. It is easy to forget about it but oral health is very key to staying well. I sometimes feel so fatigued at nt that I dont want to do bedtime routine but I make special effort now to brush floss and mouthwash. Simple but hopefully effective. I hope you feel better soon. Suebee
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  #75  
Old 02-06-2020, 11:06 AM
Suebee Suebee is offline
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Default Link to tumeric article

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4190737/
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  #76  
Old 02-06-2020, 06:22 PM
AMFADVENTURES AMFADVENTURES is offline
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Join Date: Sep 2009
Location: Colorado
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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.

Larry
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  #77  
Old 02-06-2020, 08:22 PM
MSLazarus MSLazarus is offline
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Join Date: Jan 2011
Location: western MA
Posts: 76
Default 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 at 08:25 PM.
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  #78  
Old 02-12-2020, 10:04 PM
Suebee Suebee is offline
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Join Date: Mar 2015
Location: Houston, TX
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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.
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  #79  
Old 02-12-2020, 10:10 PM
Suebee Suebee is offline
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Join Date: Mar 2015
Location: Houston, TX
Posts: 471
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Animal live vaccine and possible risk to immune compromised human

Https://academic.oup.com/cid/article...437242#6522761
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  #80  
Old 02-14-2020, 05:49 PM
Lmh Lmh is offline
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Join Date: May 2015
Posts: 56
Default Gardenlady

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?
Thanks!
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