2nd half-dose Ocrevus Infusion Completed

[dianekjs]

As many of you following Ocrevus news and experiences are aware, the first 600 mg. dose of Ocrevus (ocrelizumab) is divided into two half-doses spaced two weeks apart. I posted earlier about my first infusion ("Ocrevus - Tomorrow's the Day"), and yesterday I completed the second infusion installment. Now I'm done for six months. Note that the Ocrevus folks define six months as 24 weeks from the very first infusion date, not the second. This actually comes out closer to a five month interval. As I understand it, that calculation stems from how it was handled in trials when they found that many participants encountered worsening of symptoms at around the five month mark as the B cells started to repopulate.

Neither of my two infusions went real smoothly, I had infusion reactions both times and ended up having to be more medicated than I wanted to be. However, I don't want my experiences to deter anyone from considering this treatment, as most people seem to be to be handling the procedure without incident. I have a tendency to be hyper-sensitive, and I simply stayed true to form. I ended up being at the infusion center for over nine hours yesterday, a little longer than the eight hours it took me to complete the first infusion. Whenever anyone has any kind of reaction, they stop the drug for anywhere from 30-60 minutes, add more Benadryl and sometimes more steroid to the IV, and then start back up at a much slower rate. It takes a lot longer to get the drug all in this way. However, both times once they started back up and slowed things down I was ok (albeit quite doped up) for the duration. Everyone is different, but for me the reactions consisted of my throat swelling and closing up with scratchiness, and this second time, with flushing and getting very hot, and a lot of concurrent coughing. Everything was under control within 30 minutes, and even more quickly than that the first time. The infusion center nurses said that most people are there for 4-5 hours total (this includes pre-meds) and reactions are generally few or very mild.

For anyone interested, the pre-meds I received this time were 650 mg. Tylenol, 50 mg. Benadryl, and 250 mg. Solu-Medrol (steroid). When I started to have a reaction a little over half-way through, they added 50 additional Benadryl (!) which sent me into orbit before knocking me out, and 125 mg. additional Solu-Medrol. Again, everyone's different, and different doctors will have different dosages to treat various situations. I'm sure they were a little more proactive with me because of my history.

Today I am just feeling quite wiped out, but not too bad. Recovery from the first half-dose was difficult for me, and I was just starting to feel good a few days before going in for Part Two. My neurologist, who is the director of the MS clinic at a major medical center, told me that it will be some time before we can really start to gauge effect, and some people may get a little worse initially before they start to see improvement. We just knocked out a significant component of the immune system and it will take time to adjust and reset. So, I am focused on being patient and as positive as possible. I'm not expecting any miraculous turnaround overnight, but am hopeful that I will gradually see benefit. I've mentioned elsewhere that I also have a connective tissue disease which B-cell depletion therapy is also being used to treat with some success. It is our hope that Ocrevus will address both of my conditions simultaneously, as most drugs used for one of the conditions seem to be contraindicated in the other. It may also be helpful to know that my MS is officially diagnosed as PPMS, but that it is not entirely clear due to the complexity of my case. Despite hitting a few bumps in the infusion process, I would make the same decision again and think it is a very promising drug to try. The fact that it is a close cousin to well-established Rituxan (rituximab) makes me quite comfortable with its newness to the market, and multi-year trials had very impressive outcomes overall with good safety profiles.

[jimeka]

dianekjs thank you for all the info. It's not readily available in the uk. I cannot have benedryl as it severely affects the RLS, so I am concerned as to what else they could use. I am pleased that you coped ok and hope and pray that eventually you will see the benefits, blessings Jimeka 🦋 🌈

[dianekjs in reply to jimeka]

jimeka , thank you, I hope it will prove to be the right decision for me. They can easily substitute another antihistamine that you are able to tolerate. They are used to people having various allergies to the different meds. Is Ocrevus something you might be considering?

[jimeka in reply to dianekjs]

dianekjs not just yet. I need a little more evidence. Like you I am very sensitive to drugs and I have not been able to find an antihistamine that doesn't set the Rls off , I can only just manage 25 m of lyrica as more sets it off and lyrical is one of the recognised drugs for it. Unfortunately my sensitivity to drugs causes me to have double vision, severe itching, and severe fatigued. Certain drugs make the ms go berserk. 🦋 🌈

[dianekjs in reply to jimeka]

jimeka , I often react to drugs also, although it sounds as if you may be even more sensitive. I think some people skip the antihistamine, but you would need to inquire about what they can do to control an infusion reaction if it were to happen. They may just increase the steroids as needed. As for evidence, keep in mind that Ocrevus is extremely similar to Rituxan, which has been around for a long time and has had good results with MS. That said, there's certainly nothing wrong with watching and waiting to see how you feel after its been in use a little longer. I talked with several people who had been on Ocrevus in the trials for several years and that helped me to make my decision.

[jimeka in reply to dianekjs]

dianekjs rest up and let the drug work it's best for you. Keep us posted. 🦋 🌈 🤗

[Morllyn]

I will be hoping that it will help you dianekjs .

[dianekjs in reply to Morllyn]

Thank you, Morllyn.

[BillD999]

dianekjs Thanks for the update on your treatment and for describing it so well. I think we all have an interest in this and are hoping that this helps you. I am supposed to be a candidate for this drug but I have no idea when that will be. I will be trying to learn as much as I can in preparation.

Thanks & good luck!

[Miriade]

Hi Dianekjs, after reading your notes, I am really not going to try Ocrelizumab. I am very much hypersensitive and high reaction to many allergens, and I turned to be much more hyper reactive during pregnancy when I had severe asthma all the time and after pregnancy continue being atopic person. I really would like to use medication who cross brain-barrier to be really effective in our neurologic auto-immune disease. Maybe until the next dose I do not know when, it will be approved Ofatumumab, you could switch to the next generation, 3th generation, and it is sub-cutaneous injection, more target to specific activated B cells and less reactions. I see by your photo you are not over 55 years old,hahaha. Then you are allowed to be enroll at the Ofatumumab trial in many doctors office already running. Probably with your doctor also, since you said that he is in a big Medical Group. In here in Florida, both of my Neurologists are already doing the Trial since last years. But I could not be enrolled because I am 56 years old. Ofatumumab is very low dose and it is not IV, it is SC, subcutaneous and more effective, same B cells, more specific attachment to the target. Ofatumumab is the lastest from Ocrelizumab and Rituximab.

Both of my Neurologists decided that for me because of my immune system, I re-started DMT with Aubagio this week.