Following my MS diagnosis 8 years ago (based on MRIs and many exams including Cerebrospinal Fluid ) and having a Copaxon 20 mg injection per day, I have never experienced any relapse up to now.My MS symptoms included fatigue, left foot drop and numbness on my left hand and leg.
Based on my clinical condition it seems that I have a benign PPMS type of MS.
Two months ago I had an urinary tract infection that left me on bed for three and half weeks. Then my physical condition got worse and I felt terrible pain on my back and left leg. The MRI showed stenosis in lumbar area of spinal cord that existed long ago, but lying down on bed for a long time gave this bad result. I am not able to walk as good as before now and I use a walking stick when outside.
I recently visited a new neurologist who told me that since my MS type is PPMS and not RRMS, Copaxon injection will not provide any help to me and I should change medication to OCREVUS.
Since Ocrevus is not DMT but immunosuppressant medication I hesitate to change medication with a new drug that has a short life in use, up to now (~six years only).
On the other hand it has possibly significant side effects compared to Copaxon I get now.
My pulmonologist asked me to check possible infection from tuberculosis since it seems that on top of MS I have
lower respiratory infection.
I would appreciate your experience from people that are under Ocrevus treatment and any proposal for alternative MS medication for PPMS.
Thanks in advance of for your valuable advice.
Manos
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Manos
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Ocrevus is a DMT approved for treating MS, and I believe hepatitis status is required to start. The only other treatment for PPMS that I am aware of is HSCT.
As for the TB, I would want it checked by a blood test before starting. There are people with latent TB on this class of medication, but I don't know what extra monitoring they have, etc. I do know on my current med, if TB becomes active, then they are treated for it. GL!
Many thanks for your reply. I have heard about the haematopoietic stem cell transplantation solution for MS, but it is not so trivial treatment for everyone.
I have already started testing for hepatitis and TB.
You're welcome! I wish there were more treatment options. If you do move forward with the infusions, there are many older posts and replies here on what to expect during that first visit.
Although I am rrms, I was put on ocrevus after a failed few years on copaxone, and a try on tysabri which came back, from the beginning, that I was JCV positive 😳 so, back on copaxone I went, where I had generalised seizures develop because of the MS, and I had to be hospitalised because on the 16th April 2021, I had 2 seizures that night, and I was completely out of it until they put me on some more AEDs and steroid infusions for a 27 day stay. I absolutely love ocrevus! I'm now able to walk, without my stick in my house, and I can easily get my wheelchair in and out of the house because of it! I really deteriorated on copaxone: I developed 3 lesions in my spine, my walking ability slowly decreased and I developed drop foot on my right foot, and the MRI I had done during my stay in hospital scared me! The results suggested that I may have tumefactive MS, but my neurologist confirmed I am still rrms 🤔 even if my mri looks like a Jackson Pollock painting 😂
I had my TB jab in 2014 when I started a BSc in Adult Nursing. I had a relapse late 2015 which got me my clinically definite diagnosis of RRMS, as I got a CIS diagnosis in September 2014 - a couple of weeks before I started university all because I was having simple partial seizures at night, during my sleep, a year before 😂 I don't have trouble when I get infections, and I remember last year only having antibiotics because I got a chest infection! I'm going through a cold/flu, and I'm doing much better than my soon-to-be husband, as he was down for a day because his chest hurt from coughing so much! I keep telling myself I'm beating the infection a lot better because my immune system is so good that it goes after my own body when not fighting infections 🤣 like, he got covid in Dec 2021, a few weeks after I had my 3rd dose of ocrevus! He was completely surprised I didn't test positive on any tests and I could carry on as normal whilst he was "recovering" in bed 😅
Thank you so much! 🫂 and I am doing well, considering what my immune system is doing to my brain 🤣 but, I'm a fighter, and I will be until the day I can no longer be 😁
Your story sounds similar to mine. Copaxone does work for Ppms, but only in males according to my neurologist. I'd stick with copaxone. Especially if you tolerate it well.
Ocrevus is currently the only approved DMT for PPMS. I have been on it since 2016. Diagnosed initially with RRMS in 2014 (I think they always diagnose people with RRMS to start and then see what the trajectory of MS is before deciding if it is RRMS or needs to be changed to PPMS), took Gilenya for 6 months before new lesions occurred. Changed to Rebif then but slowly got worse over the next year so went on clinical trial for Ocrevus. Ocrevus definitely slowed it down more than Rebif, no new lesions. I had a lot of lesions in the brain and spinal cord at time of diagnosis that over time are scarring further and recently causing more difficulty walking due to foot drop and hip flexor weakness. Right hand and arm a bit weaker too. I am glad I switched to Ocrevus as I think I would be worse without it.I am actually looking into clinical trials again though. If you go to clinicaltrials.gov (it shows trials available all around the world) you can search PPMS. There is one comparing Ocrevus to a BTKI (oral medication). There are at least 2 trials with BTKIs. Earlier trials with these drugs look promising.
I haven't had really any side effects from Ocrevus. I had a mild rash on my face during first infusion that went away when they slowed the infusion. Also after the first 2 or 3 full dose infusions the lymph nodes in my neck were a little tender. No issue with frequent infections. I did get Covid from my husband twice and was sicker than him but did not need to go to the hospital. Some people have had hair thinning on Ocrevus that resolved over time, I did not have this. If you do go on Ocrevus be sure to sign up for their copay assistance program, it covers my deductible for the year.
Dear Ahrogers many thanks for your analytical information on Ocrevus including also the clinicaltrials.gov web site.
I am happy you did not experience any important side effect with this Ocrevus. Thank you also for the information about BTK Inhibitors. It is promissing but we should expect FDA approval before trying that. I am still gathering information about Ocrevus before deciding to shitch medication. In my country (Greece) MS medication is fortunately completely free of charge for patients, up to now.
I’ve been on O since Jan 2019. No activity on any MRIs since then.
Since 1999, I’ve been on Copaxone twice, Rebif twice, Aubagio, Tecfidera and Gilenya(only 6months). Had relapses while on C, R, and A. My neurologist hasn’t said anything about going off O. I’m in my fifth year on it. I’ve been relapsing remitting, but not sure if im moving on to progressive? Any way, I recommend O. More benefits than drawbacks in my opinion. I haven’t had side effects except for a few infusion reactions with my first few infusions. Plus, who knows what new, better med might be available six years from now (if you would need to stop O after 6 years). Best, Elizabeth
It seems you tried many MS medications, so your opinion on Ocrevus (no significant side effects) is important for me. I hope your condition will be stable if not better in the future, since getting better with MS is not so easy.
Despite the myth that some dinosaur neuros like to try and perpetuate, there really isn't such a thing as "benign MS" - it's probably better described as a slower than average MS!
Copaxone is one of the oldest and least effective MS meds, although some people have done fairly well on it for years, there are others where it has been a dismal failure for them. If you do have PPMS then Copaxone is very unlikely to do anything positive for you at all and in any case, there aren't any drugs other than Ocrevus approved for use with PPMS (unless it's rituximab used off-label, and that is said to have more side effects because it is a chimeric monoclonal antibody rather than a fully humanised one - rituximab was a sort of "precursor" to ocrelizumab).
If your MS isn't actually PPMS but has just been a quietly slumbering away RRMS for a long time but has now decided to have a bit of a fire-up you don't want to risk having a whopper of a relapse and winding up with a lot more disability so if you have a neuro who's offering meds it's probably sensible to accept them.
Even in just six years the number of patient years for Ocrevus would be quite significant because it has had a large uptake, so there is a lot of data out there about it.
If you had three weeks in bed with that UTI you would be significantly de-conditioned so if you can get some regular physio and exercise therapy your mobility will probably improve quite a bit. The canal stenosis/ spinal issues would also not be helping, but gentle exercise may well help support your spine in the affected area.
Thank you for your response the info provided. It is true that Rituximab is not approved as a treatment for MS, but the medication is commonly used off-label to reduce relapse risk and delay disability progression in MS patients. For PPMS Ocrevus is the only approved med up to now, eventhough new medications are tested (e.g. BTK that is in test status II).
Your opinion on Ocrevus is in line with my neuro decision, so that I may avoid any potential disability in the future. And Ocrevus is used by more than 100.000 people all over the world up to now (in 6 years time) as he told me.
I have already started physiotherapy and exercise for improving my mobility and slowely I am getting better. I am living close to the beach and I am waiting to start swiming when the weather is beeter (in June).
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Primary Progressive MS
Ocrevus not for me
who is willing to care
Mid 60's and my MS is still active. So much for the theory that as you age your MS becomes inactive...
