I have many friends on Rituxan and they love it. Lesser infusions then Tysabri. If I progress I will happily go on Rituxan. Yes it a chemo drug but not like the chemo drugs I am on for cancer. It is one of the oldest drugs for MS .It is all a benefit/risk formula.
Could you please divide up your text next time. People with MS often have trouble with large blocks of type.
You can have progression with or with out symptoms. Neurologists go by the MRI. Your walking also has a lot to do with it.
I could not read your thread because I like many MSers can't read big blocks of print.
Rituxan is a great drug. I have at least a dozen friends who are on or have been on it. They liked that they did not have to come in every month for infusions like Tysabri. It has done well with their MS.
Most of them tolerated it well. It is chemo but it is not like the chemos I am on for ovarian cancer You do not lose your hair and Rituxan usually has few side effects. Rituxan has been in use a long time. They do not know the long term effects of many of the new drugs.
You might be afraid of IVs which is actually plastic. They use a needle to thread it. They are not so bad when you get used to them.
Of all the DMDs Tecfidera, Gilenya, Aubagio, etc it is Rituxan that I would do.
HI and welcome to our little MS community,
I would highly recommend you contact your neuro within the next few days, either by email or phone, as it is very important for your mental health to have clarification on if you have actually been officially diagnosed with MS or not!
I actually found it difficult to follow your post, in all these years i've never heard of this type of situation happening before, to me it' would be highly unusual for neurologists to ask MS patients if they "want to start Chemo" when MS treatments are typically referred to as disease modifying drugs (DMD's) or disease modifying therapies/treatments (DMT's) (see below list of MS DMD's)
There are 4 chemo related treatments prescribed for MS Alemtuzumab (Lemtrada), Azathioprine (Imuran), Cyclophosphamide (Endoxana), Methotrexate (Maxtrex) and Mitoxantrone (Novantrone). As far as i'm aware only Alemtuzumab (Lemtrada) is a 'first line treatment' for MS, the other 3 are generally prescribed after being on other DMD's that have failed, with Avonex® (interferon beta-1a), Betaseron® (interferon beta-1b) and Copaxone® (glatiramer acetate) still being the more common named DMD's mentioned by neuro's to start off with......
Visual issues are very common in MS but macular degeneration is not actually caused by neurological conditions like MS, the common visual condition associated with MS are Optic Neuritis, Diplopia, Nystagmus so it might be worth double checking what visual issue you have if MS is probable, just in case your MD diagnosis is inaccurate.
I genuinely think there might be some confusion as to what your neuro was telling you.....generally IF someone is diagnosed with MS, their neuro will advice the newly diagnosed MSer of which DMD he/she recommends but the patient gets some choice in which first line DMD they start off on, and to give the patient time to decide, the follow up appointment is usually weeks to a few months.
Generally IF someone is initially suspected of having MS, neuro's will schedule appointments in 6 months to a year, with the advice to contact if anything changes or happens in the mean time, it's the 'wait and see' approach when there isn't enough diagnostic evidence to diagnose.
Hope that helps........JJ
I should probably point out that I obviously cant count :D that should of read
"There are '5' chemo related treatments prescribed for MS"
(1) Alemtuzumab (Lemtrada),
(2) Azathioprine (Imuran),
(3) Cyclophosphamide (Endoxana),
(4) Methotrexate (Maxtrex)
(5) Mitoxantrone (Novantrone)
......"the other '4' are generally prescribed after being on other DMD's that have failed"
My regular neuro and the one in Boston both referred to mitoxantrone as chemo.
You present a great deal of information. To me much of does not go together. Forinstance spinal taps do not show lesions. Also MS lesions do not exist outside of the central nervous system, like by your ears. As others have urged, you need to have a very plain speakig conversation with your neurologist. If he or she is mentioning spinal tap lesions and MS lesions near your ear I would urge you to find a new neurologist, quickly.
As to chemo, as others have also mentioned, there are MS drugs that can be considered chemo. Most of them have ben approved for the treatment of MS. One in particular has not, Rituxan or rituximab. It is approved as chemotherapy for non-Hodgkins Lymphoma, a kind of cancer. It has been used for the treatment of MS for years with success, but it is considered an "off label" use of the drug.
I have been getting Rituxan for 2 years with no ill effects and my MS has not significantly advanced.
Please have a slow, understandable conversation with your neurologist.
Hi. I think the problem is that you're misunderstanding the terminology used in MS. For instance, at one point you say 'spinal tap' when I'm pretty sure you mean spinal cord. And by lesions 'near your ear' you may mean in your brain but close to where your ear mechanism starts in the brain. And so on.
It would be helpful if you quoted here the exact words written under Impressions in the all the radiology reports that accompany your MRI images. If you don't have these you can easily request them at the MRI center.
Meanwhile, please do get in to see your neurologist. Take a written list of questions but make it brief.. Ask what parts of the blood tests, physical exam and MRI led him to conclude you have MS. Ask him to show you the lesions on the MRI images. Finally, ask him why he used the word 'chemo' at this point, when it's your understanding that there are many MS treatment choices that cannot be considered chemo. He may have a good reason for this choice, but if so, he hasn't explained it to you.
Many neuros hurry their patients along, but that doesn't mean you're not entitled to answers, and a written list will allow this to happen fairly quickly. If possible, take someone else to your appointment to be another set of ears for you as you learn more about this situation. Don't make any commitments to treatment at this point, as it's still a learning session.
After this, think over what you've learned, and feel free to ask here again. You may or may not have confidence in this particular doctor, and you may well want a second opinion, especially from a neuro who truly specializes in MS. There are a lot of neurological diseases out there, and every neuro cannot be up to date on all of them.
If you are satisfied you have MS, I urge you to read up on it. Go to good web sites such as that of the National MS Society. Also well-regarded research organizations, universities, hospitals, etc. Avoid general chat sites since they can't be relied on for accurate info, and avoid anyplace with something to sell. Usually these are .com sites.
Finally, assuming you do have MS and are fully briefed about treatment options, choose your doctor and winnow down the list of medications to a few possibilities to be discussed with the doctor. Also, the National MS Society often presents programs for the newly diagnosed. Get in touch with your local chapter for information on this and other support.
Hope this has helped.