So I am always thinking about the medication I am currently on. My doctor told me, my first time seeing him when he diagnoses me, that I will be on these medications for life. I don't think that's fair to say at all. (Also, variation is key for fighting any infection-side note).
I was diagnosed in 2015 and I am now 22 years old, I am on Rebif, gabapentin, and Ritxuan (a chemotherapy). I am also JCV+. My options for medications are slim sadly. And to be honest, the Rituxan has that small chance of having someone develop PML. I hate that i am on that chemotherapy, but I also hate Rebif. I hate shots, as I have discussed in many of my other posts, Rebif just hasn't been a walk in the park for me, long story short.
What are my other options of medications that do NOT have the risk of PML? I hate shots and I think my only options are Rebif and Copaxone. Has anyone heard of anything else? (another side note-I have also switched to a gluten free diet, which has helped to dim some of my symtpoms I deal with daily from MS).
I really want to change up my treatment plan, so should I see a new doctor? I live in Connecticut, go to graduate school in Maine, and would be willing to travel to Boston to find a better doctor. It's not that my doctor isn't great or smart, it's just that I feel like he doesn't listen to what I want, I also can only reach him by email, what an annoyance that has been. He is really pushing me to continue to take Rebif and Rituxan. I've been doing this routine for almost 2 years now.
I have also heard that Rituxan doesn't work/isn't effective after 2 years of being on it and I am coming up to the 2 year mark this summer...so should I kick the chemo aside? Any thoughts?
I just don't know what to do. I always think about this. I am also a physical therapy major and really want to be on a treatment that won't let my disease progress anymore or I fear that I wont be able to go into the profession that I love.
Anyone with any advice?
Hi Jen, WHAT DO YOU WANT TO DO? Cant decide, flip a coin, if you dont like the outcome, change your mind. In 1992, not so long ago, there were no treatments for ms, you just wingged it.
Want to try something different? go ahead. Want a new md, why? Have you researched the alternatives? Which way do you want to go, and why? Do you stop meds cold turkey or wean? Will you still love you tomorrow?
Work on one question at a time, not all of them together, and if you find no solution, perhaps the solution has not presented itself yet.
A good rule of thumb, my thumb of course, distraction, forgetaboutit, go to the beautyparlor, take a friend out to eat, sit in a park and watch the kids, yell at the wall, just distract yourself from being all consumed by ms, by something new. Like, walk away from the situation so your subconscious can solve the problem. Tell me, to mind my own business.
Thank you :)
I just recently moved 8 hours away from home to live with my kids in Dallas, TX. When I sought out a new doctor here, I just prayed and things have been falling into place. But to help answer your question, the time to seek a new doctor is when your doctor won't listen to you or you see no new relief from your symptoms or you just don't feel comfortable talking to your doctor. What I did when I moved, was start with a good internist who had excellent reviews. He, in turn, sent me to a neurologist, gynecologist, chiroprator, and physical therapy clinic. This is working our so well for me so far.
Let me say, I wish you all the best. MS is a hard disease. I have been fighting this battle for 30 years now. If you ever just need to talk, please reach out to me. We are all here for you in the MS community. We cannot go throught this alone.
Thank you for the reply! Keep fighting :)
I strongly suggest that you do the manual injections. I get the manual ones that you can either do by hand or put in the Rebijet II, I think it is called. I use the auto injector only on the buttocks. The rest I do by hand because I can control the rate at which it goes in, and this also gives me access to a few more sites where I have ample fat that are not highlighted by the MS Lifelines people. I try to think outside the box. I do not do my arms because they are very thin. Manual injections are definitely the way to go. You can pinch up your skin and just push it in. Then let your skin go flat before you push the medicine in.
The next time I am due for more injection, I will ask my doctor to prescribe the manuel ones! Thank you for the advice, it's worth a shot, right? ;)
I can definitely understand your frustration. It's very important to feel like you can trust your neurologist. One option you may want to consider is just seeking out a second opinion from a different neurologist, not necessarily committing to switching right away. A second opinion may help you to make your decision. If you decide you want to meet with another neurologist, you can call us at 800-344-4867; we can help you look into neurologists with experience in MS in those areas.
In the meantime, this link may be helpful to learn about the different disease modifying medications: Medications
I hope this helps!
Since you can get to Boston, consider Brigham & Women's:
All neurolgic research and clinical facilities are in one sparkling new building. There is no place more cutting - edge than the Brigham. I really liked the personality and skills of the first neuro I saw, but I'm only about 30 minutes from Boston so, when I read Ann Romney's book and researched the Brigham I left my local/general neuro to be part of the bigger clinic full of specialists.
I'm the kind of person who has to find the best resources for whatever, then just commit to it and let go. I don't even think about my MS. I take Copaxone and will be having my first annual MRIs this month, with an appt in April to find out how things are going.
Thanks for the input! Also, fun fact- I was on the Rachael Ray show with Anne Romney to talk about MS in 2015! I enjoyed reading her book as well. I would love to go there one day if I ever move closer to Boston, but I may consider it anyways, since im only 2 hours away in CT.
My original neurologist was not really a MS expert. He was more of a generalist. So I researched doctors in my area and found one who participates in MS clinical trials. It made sense to me that he might have a more informed opinion on what would be best for me because he's seen the studies in his own office. He wasn't in my health insurance network, but its amazing what persistance and an unlimited phone plan can get you!
I am on Gilenya and I love it. No PML risk (that I'm aware of) and its just a daily pill. A lot of people have rough side effects, but if you are lucky like me, they are managable. I have not had a relapse since I started it a little under a year ago.
A second opinion never hurts, especially if you don't feel listened to by your Dr. I wish you all the best! We can all get through the tough curveballs this disease throws us.
Thanks for the feedback! I think I see a new neurologist in my future! All the pills do have the risk for PML at the moment, sadly :(. This is from the FDA, "the U.S. Food and Drug Administration is warning that a case of definite progressive multifocal leukoencephalopathy (PML) and a case of probable PML have been reported in patients taking Gilenya (fingolimod) for multiple sclerosis (MS)."
I hope research gets us closer to a more managable "cure"/ Tx options that are safe.