This is what my neurologist wrote when I asked him about HSCT and Ocrevus. He kind of very nicely said no way though he did invite me to come for a further discussion. What do you guys think about what he said?
"I share your concern that we don't have any medications to help people with secondary progressive multiple sclerosis. There is no evidence to support the use of Ocrevus or HSCT in secondary progressive multiple sclerosis. The use of these treatments is not without adverse effects and there is a high risk of infections with Ocrevus use. I would not recommend a treatment without any potential benefit and which carries a risk of complications."
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Ikeeptrying
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It seems like a really good reply to me. He's trying to spare you the nuisance and risk of a treatment that hasn't shown to be effective for your type of MS. SPMS is quite a different beast from RRMS because inflammation and relapses are no longer happening. They haven't yet figured out if they can do much for SPMS. Unfortunately.
Is SPMS different from PPMS? I think SPMS is like an orphan disease. We're going to talk to him today but I'm not going to ask to get on Ocrevus or HSCT. But I'd like to understand this disease. I think he'll be able to help with that.
Yes, it is different though both are types of MS, or at least so far as anyone knows yet. When they talk about "progressive MS," they mean both types as well as a type known as progressive relapsing MS, which is rare.
Many case of MS begin as relapsing-remitting MS (RRMS), and later the person stops having relapses though progression continues, and then is said to have SPMS. It came on secondary to the RRMS.
Primary progressive MS has no relapsing-remitting form at the outset. It just progresses, without relapses or remissions.
It's hard to know which type of MS a person has sometimes. Ocrevus is the first disease-modifying drug targeting PPMS but it's not being given to those with SPMS.
And just to add, remission does not mean that the symptoms go away. I found that to be one of the most confusing factors in the diagnosis of the type of MS I have. Remission simply means that the symptoms that you are having stay fairly stable. I kept thinking that remission in Ms was like that in cancer, where all of the disease just stops. Not so.
Saw my neurologist this afternoon. Apparently there is NOTHING he can give me for SPMS. Talked about Ocrevus, HSCT and stem cell infusion. Not approved by FDA and risks not worth side effects. Infections and higher risks of cancer and other horrible stuff. He was very nice and gave us all the time we needed but in the end kind of a fruitless session. I'm very sad., but glad I'm still doing well.
Human Stem Cell Transplant. They give you chemotherapy to dampen your immune system and then infuse you with stem cells. If anyone can give a better definition please help. I'd google it.
From a non-medical perspective, it's a procedure where the doctors essentially replace your damaged blood cells with pluripotent stem cells from Human sources. Pluripotency means that the cells have the ability to grow into any type of cell that the body may need, whether it's organs or whatever. I looked into it once and discovered that it is basically the last hope for an MS patient and is not to be taken lightly. I understand that there is a year period of quarantine required has your immune system is shot for a long while after the transplant. It is not a fun procedure and it carries many risks. However, as a last-ditch resort, it may in fact be the answer. You will see advertised by quacks and even some spas and salons that they provide stem cell therapy, but this is little more than taking your own cells out of fatty places in the body and injecting the material back in. This is an absolutely bogus procedure and has nothing to do with real human stem cell therapy. If you are looking into this, do yourself a favor and do a lot of research before you take that leap. I am sure that there are some centers of excellence for stem cell therapy in the US, and I do know that there is an MS Center near Tel Aviv, Israel that has had some success with hsct. I personally would never consider it unless as a last resort. Good luck, and I hope that you continue to be okay and never need to even consider this therapy.
Thanks Sukie. What a lot of good information. No, it would have to be a last resort for me too. I was just playing around with the thought of doing it.
Unfortunately, there is no medical tool out there to manage spms. At first, my neuro thought that I had that type, but he would not put it in the medical records because then the insurance companies won't cover anything because there is nothing proven to even manage this type of the disease. Later, he actually did diagnose me with remitting relapsing and since I got it so late in life, at age 57, I am hoping that I will succumb to old age before I go into the secondary Progressive phase. Good luck and continue to feel well.
I think you are lucky to have found an awesome neurologist who listens to you, takes your questions seriously and gives you the time you need to discuss it.
Re "The use of these treatments is not without adverse effects and there is a high risk of infections with Ocrevus use." While I am well aware of legitimate concerns over drug side effects, your neuro sounds a bit like one of those dinosaurs who will sit there and watch a patient decline functionally rather than seriously consider possible options - although the approved options for SPMS are basically non-existent. Make no mistake - ALL MS drugs have side effects, and most of the newer oral agents (e.g. Tecfidera and Aubagio) come with significant infection risks because of their mode of action - hence the need for ongoing blood tests.
Tysabri (natalizumab) has higher risks of PML if you are JCV+. Lemtrada (alemtuzumab) has risks of secondary auto-immunity. Older drugs were not exempt from risks - hence liver function monitoring requirements with interferons. Sometimes I wonder if some neuros won't prescribe because they are so risk-averse in today's litigious society - they are not necessarily averse to risks for their patients but more averse to being sued by patients.
Ocrevus (ocrelizumab) is meant to be less side-effect prone than Rituxan (rituximab) as Oc is a humanised mono-clonal antibody, whereas Ritux is a chimeric mono-clonal antibody.
Yes - HSCT still has a death rate of around 0.5%, and has so far been shown to be most effective early in disease course - it is still mostly available as an extremely expensive "health tourism" effort in countries like Russia and Mexico. It is not a treatment to be undertaken lightly, and some people are getting good results - but these are not guaranteed for everyone, any more than good results are guaranteed for any other MS treatment.
If all this sounds confusing, then yes it is confusing but your neuro is not the only source of information and knowledge. I was once an ignorant patient who took my Dr at his word, but becoming informed was one of the best things I've done for myself. At least I can hold an intelligent and informed discussion with my treating neuros now, and they actually respect me for it. They also respect and understand my current position of choosing to not be on any MS drug at the moment. There is plenty of info out there on reputable web sites so do some homework and become an informed patient. Barts Blog is a good start - go to multiple-sclerosis-research... . Happy learning
New research is also pointing in the direction of all MS being one disease, and all MS still having inflammatory processes even if there are no clinically identifiable relapses, but most clinical trials have used/ are using endpoints and outcomes which may not be appropriate - the trials and their designs are still bogged down in old MS dogma.
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