More on Ocrevus
Looks like by 3/28 FDA will decide
I'm a little concerned about the tumor rate but I haven't read the full studies. The $$$ may be another obstacle although there will likely be patient assistance, esp. For PPMS
It looks like the trials have only been done by comparing the efficacy rate of Ocrevus to Rebif, which is known to be less effective than some of the other existing meds like Gilenya. I'll be watching to see how it compares against existing treatments for RRMS. The tumors also scare me.
Iona60 I've read comps to placebo and to Rituxan
That's certainly food for thought erash, thank you 😊
I've been waiting for this approval so that I can switch off of Tsabri. The only other option has been Gilenya but I can't take it because of heart rate issues. I've been on Tysabri for 5 years despite being JCV positive. I've been waiting for something with as powerful of an effect but without the PML risk.
Everything I read up until now, made it seem that Ocrevus has a better safety profile but after reading the linked article I'm not so sure. It's feeling like a choice between PML risks and tumor risks. After almost 18 years with this beast, I'm tired of feeling like a science experiment!
Raingrrl all meds have side effects, to include Tylenol. We just need to be wise consumers. Need to look at relative risks of tumors etc. and make educated decisions with hopefully knowledgeable guidance from our neuros.
I think biggest side effect thus far is infusion site and that's supposed to be minimal.
Erash thanks for the link. My neuro and I have already discussed Ocrevus and have decided that I am not a good candidate for it. I am extremely worried about the tumor risk. Especially since other reports say the Breast cancer is a the most common tumor reported in the trials. We have a lot of cancer in my family. It is the most common cause of death for the last 4 generations. Many of those have been breast cancer. So there is no way I am willing to take this drug. Once my neuro realized that the cancer issue was so bad in the family she agreed. Also, my body has a history of doing the unusual. If it is an unlikely side affect then I usually have it (about 90% of the time). Another issue I have is I tend not to trust big pharma. There is too much money at stake for them, in my opinion, to be 100% honest and forthcoming. In my experience they try to put a positive spin on things and make them seem less dangerous than they really are (my mom nearly died several times taking "new" ms drugs). Not everyone will agree with me and that is ok. Everyone must do their own due diligence and weigh the risks and benefits to determine if it is a viable treatment option for them.
It's not just your opinion, books have been written and I taught an Advanced Pharmacology class with 3 lectures devoted to the many biases in Pharma!
Big push these days for individualized medicine --that certainly means taking into consideration family history and personal preferences. Sounds like you and your neuro are making an informed decision.
I agree with you completely!! I have no wish to return to any DMT due to my experiencing all of the least likely side effects, too. Just going to continue with muscle relaxers and trying to stay as mobile as I can be. MRI due in April so will see if I have any new or active lesions. Thank you for your honesty.
Hi Jackie, thank you for your honesty about the possible tumours and breast cancer. I guess the new drug will be a no go for me as breast cancer runs in my family too. I hope it will be successful to most people, as we with PPMS need a break through, blessings Jimeka
jimeka just because it's Jackie's and her Neurologists decision, DOESN'T mean that it should be your and your Neurologists decision. Everyone and Everyone's situation is different.
*As with ALL DMT decisions, yes the final decision is yours to make, With the Consult Of Your Neurologist*
We only have 3 people in this generation that have had Breast Cancer but I don't want to be number 4. My father thinks I should take the chance. He figures he has managed to survive 4 different types of cancer so I should be able to handle it if I were to get cancer and he feels it would be better than the MS. Needless to say I totally disagree. We have agreed to disagree. I will continue to wait for a safer drug and continue to battle this monster the best way I can.
It's one of those tough decisions Bygonelines lm so sorry. I'm glad you and your dad can at least agree to disagree. Not many people can do that.☺
How have you been feeling lately anyway? We haven't heard much from you😞 You know about the Ask The Dr Anything this month right?😁
i am doing ok. Things are super stressful at work and I am fighting to be able to keep my job. I really need to keep it till at least the beginning of next year. Not sure it will happen but I am giving it the old college try.
I am also having issues with my Lipodermatesclerosis on my legs. I have a fairly large weeping wound on my left leg and am trying to get it to heal, luckily it is not deep. We are having trouble getting it to heal. I just started using Medihoney on it last night. Hopefully it will start to heal now. The other meds (prescription and OTC) didn't work. I am just thankful it hasn't gotten infected.
Thanks for asking how I am doing.
Life carries on. I will try to be on more but I have also been suffering from debilitating fatigue. What can I say... When it rains it pours.
When is the Ask the Doctor thing? I vaguely remember seeing something about this.
Hope you feel better soon Bygonelines and the wound heals rapidly with the medihoney.
I kept trying to hang in there at work beyond what I should have. It was rough emotionally at first to stop working but losing that stress made a big difference for me.
Tough decision. Fortunately finances were ok enough for us.
It's the finances that will be the problem for me. We have so much medical debt I really need to be working and bringing money in. Unfortunately long term disability does pay enough to cover all the bills. My husband also has several medical problems. I would hate to see how bad off we would be if we didn't have good insurance.
Agree Bygonelines LTD doesn't pay that well. 🙁
I hope that it works for you! Bygonelines ! The fitigue is the worst. I can't stand it!
The date of the MSAA Community Ask Me Anything is on March 29th. We out yet have a time. ☺ Fancy1959 and EmilyM375 have a post where you can also list a question.☺
I am with you on this one Jackie. It's bad enough having ms and having it at the back of your mind that you may be next with the breast cancer, without having to take medication that may set it off. I need more evidence, not enough information on side effects, I am so sensitive to drugs I need concrete facts. Blessings Jimeka
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