Just approved for Ocrevus

[EdmontonAlberta]

I am in my early 60's; was diagnosed with PPMS just over 2 years ago. Due to a side health challenge just under 3 years ago, they fused two bones in my neck just below my skull together (spine surgery). When that recuperation was not going well, I was sent for an MRI & Spinal Tap. Voila PPMS...

So after two years of nothing from the medical field, my Neurologist stated the MRI last week showed me as the perfect candidate for Ocrevus since I had never had any DMT's. On April 22 I see some woman to get educated followed shortly afterward by Ocrevus injections.

This should be interesting...

[NHE]

Welcome to ThisIsMS. You may wish to read some of the posts in the Ocrevus forum.
viewforum.php?f=58

By the way, do your doctors see a link between your surgery and your subsequent PPMS diagnosis? It would be good to know of the status of your cerebral venous drainage and if any of the hardware they put in your neck is pressing on and thereby restricting blood flow in any veins such as the internal jugulars. This can be tested via Doppler ultrasound.

[EdmontonAlberta]

do your doctors see a link between your surgery and your subsequent PPMS diagnosis? It would be good to know of the status of your cerebral venous drainage and if any of the hardware they put in your neck is pressing on and thereby restricting blood flow in any veins such as the internal jugulars. This can be tested via Doppler ultrasound.

Long story short; the Surgeon fused my bones then went home to bed. My wife was sitting beside me as I slept under the drugs. My body started thrashing & she started screaming - the nurses came running in & ended up phoning the Surgeon. Meanwhile I was a temporary quadriplegic - so the Surgeon came back & performed a "replacement" surgery. His diagnosis was that it was my fault since I was a smoker...

Nobody considered a link between the surgery & MS. Which is ironic since I come from a large family; eleven uncles & aunts - more than 50 siblings & first cousins. Not one of them has an autoimmune disease; or MS.

Ironically, my first wife died from an autoimmune disease which was diagnosed a year after we married. My 2nd wife was diagnosed with an autoimmune disease after marriage. Both lived a very healthy lifestyle; meanwhile I have 47 years of alcohol & "a pack a day" on my resume... LOL

[EdmontonAlberta]

Had my first intravenous drip on September 16; my 2nd is booked for October 2nd.

The Nurse started the 1st drip at 10:00 a.m. - things were going okay until noon when suddenly my back got extremely itchy; then my chest. The Nurse took a look - diagnosed hives so stopped the drip then hooked me up to another drip (sorry; she told me the drug yet I don't remember the name). Around 1:30 my body calmed down so she continued the drip until it was finished.

She gave me Benadryl to bring home in case I needed some; I never took them - they are still on my counter. I was exhausted so slept on the couch; went back to my normal schedule the next day...

Nobody has ever told me what the benefits are supposed to be - yet my walking has improved. For the past two years, I walked like a drunk with my feet stepping wide (almost stumbling); now my feet go one in front of the other. This seemed to naturally occur without me even thinking about it.

Another week until my next drip - will update then...

[NHE]

It's good to hear that your ocrevus treatment went well. Thanks for sharing your experience. You've probably heard this already from your doctors, but you should really quit smoking if you haven't already. Smoking accelerates MS progression.

Here's a link to some search results on smoking and MS...

https://www.ms-uk.org/search/node/smoking

[ElliotB]

I just had my 2nd 1/2 infusion yesterday.

Both infusions went smoothly, no issues, thankfully.

To early to tell for sure but I seem to be experiencing some improvement related to walking. Time will tell...

Good luck!

[EdmontonAlberta]

TY for the responses. And yes I know smoking is bad; the problem is that my first wife hardly ever drank; never smoked; never did drugs - she died from Scleroderma at age 32. I completely abused my body for the past 45 years - still wandering Planet Earth. Firm believer in genetics; my Dad is still alive at 87 - his physical condition ensures I do not want to live to 87...

Second Ocrevus drip on Wednesday; will update everyone...

[Music]

Yes, I think alot of us are wondering why did "I" get MS when everyone you are related to drank lots, smoked and did drugs...and still do these things while you didn't and voila! They are still up and running and you aren't. Oh and you aren't related to anyone with MS or whatever. Lots of questions. Maybe we are just born with these things??? We are very complex beings most times.....

[EdmontonAlberta]

Had my 2nd Ocrevus drip today; slept through 90% of it including the one hour wait period afterward... Came home, walked to the corner, picked up Chinese food for dinner. Watching the NHL Toronto / Ottawa game - next the Oilers play the Canucks.

No side effects; hopefully will be a relaxing evening laying on the couch...