Diagnosed three and a half years ago. May have progressive MS. Currently taking no DMT. What are others in my situation doing.
Intro RobertCalifornia: Diagnosed three... - My MSAA Community
Intro RobertCalifornia
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RobertCalifornia
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johnMSAAPartner
Welcome to our My MSAA Community, RobertCalifornia !
Even though you were diagnosed more than 3 years ago, I'm sure you feel you're still starting out on your MS journey. There are many members here that come from all stages and aspects of the MS world, so I hope you find some feedback on your specific situation.
John, MSAA
Robert,
I work with a fair number of folks with PPMS or SPMS. The docs in our area are prescribing Rituxan a lot. It is nearly identical with ocrelizumab which is expected to be approved later this year for progressive forms of MS and the docs will transition folks from Rituxan to Ocrelizumab once it is approved. Both drugs are given IV on days 1 and 15 then 6 months later on days 1 and 15 of a cycle so 4 infusions a year. I am on Medicare and it is 100% covered. I would also be 100% covered by Blue Cross which I had until recently whereas my copays for Rebif are over $2000/month till I hit the donut hole when they are $800/ month and after, in Catastrophic coverage through December 31 cost $536/month. I would bite the bullet and stay on Rebif except it is no longer keeping progression at bay and I had another relapse 4 months ago on both Rituxan and Rebif.
We each need to be completely honest with our neurologists about how this disease affects us...what is doable and what we need to address. We NEED to be well informed and vocal when it comes to what we feel we should be trying. My doc said to me last week, "In MS, where there is not cure yet, we are very primed to doing what the patient asks for if they are knowledgeable and understand the risks.
That said, I would ask you to search Rituximab and Ocrelizumab online and read the efficacy to date with each in patients with progressive forms of MS.
I recently returned from a four day seminar with Can Do Ms. It was outstanding. There were two neurologists at the meeting and they both suggested that I get a second opinion and find some DMT. I will talk to my neurologist about Rituxan as well as high dose Bioton (Vitamin B7). Thanks for the help. If anybody wants more info on Can Do Ms program let me know.
I'd like more info on the Can Do Ms program. Sounds awesome!
Can Do Ms is located in Avon, Colorado real close to Vail. Their web site is mscando.org. They specialize in empowerment programs for people living with MS. They have webinars on various subjects every second Tuesday of the month. They also have Can Do programs of 1, 2 or 4 days. The four day one is only once per year in Denver. All you have to do is get lucky and be selected in the lottery. There are 24 couples that attend, participants and care givers. All of their programs have provided me with a great deal of information and support. My wife and I highly recommend any of the live events as well as the webinar series. They do have several years of webinars archived and you can watch at your leisure. They are about one hour on length.
Thank you so much!
Hello, CherieMSCN. I also am on Medicare and have RRMS. I had a great HIPAA conversion health plan which I had planned to use as my Medigap plan but under Obamacare I lost it and had to take a worse and more expensive plan from the Exchange, which didn't cover either my DMT or my relapse meds, so I was able to get on the drug manufacturers' assistance plans and got the meds for free. When I qualified for Medicare 2 yrs after being on SSD, I had to take a Part D plan, which didn't have any of my meds on its formulary. However, at my last relapse, my Part D plan granted a non-formulary exception, but because the anti-kickback provision of the Social Security Act prohibits patients with government-assisted plans from receiving financial assistance from the drug manufacturers, I was left with a $6k co-insurance. The manufacturer tried to find me a charity to pick up at least some of the co-insurance, but there was only one that would cover that particular drug and it would not help me because my husband (who is also on SSD because he had a stroke 5 yrs before my MS diagnosis) and my combined income on disability was too high! Therefore, I was forced to pay the $6k. We had to break an IRA to do it. I am wondering how your infusion drugs are 100% covered by Medicare---are you on an advantage plan or something? I have started a petition on change.org to get Congress to correct this problem, because I know too many patients with rare diseases, not just MS, who cannot afford to pay for their meds so they are going without them! That is just a disgrace that any American should have to go without lifesaving medication.
Infusion drugs are the ONLY drugs covered bu Medicare because they are given in a medical facility and covered under part B NOT Part D. I went on Medicare October 1, 2014 (even though I was eligible in 2004) when my Blue Cross Policy went up to $2500/month in premiums for David and me together. With Medicate B,C, D premiums I went to $486/month and we got David a policy for $1100/month. I was told by the drug company before going on Medicare that , yes, no problem, my injectable would be covered. It was not. October and November I paid $2200 copay each month and December I was in the donut hole at $824 for the month. Then the Medicare year changed January 1 and I had to start all over so I paid $2200 in January and another $2200 in February. All of this came out of our home equity line of credit so we had to pay interest on the loan. My doc then put me on Rituxan to give some financial relief while protecting me from Relapse.
Medicare and Medicaid...any government sponsored health insurance program prohibits you from participating in the copay relief program from ANY of the drug companies. Commercial insurance holders can participate. We are working to change that legislation but have a Republican Congress who refuses to cooperate. Obamacare is NOT Obamacare. It is so watered down by Congress that it does not even resemble what it looked like when proposed 8 years ago.
I have RRMS and I am going to stop my medication tonite.I have suffered with the side effects for a month now and they are worse than my MonSter symptoms. So as an experiment I am stopping my medication. Not sure how long before it is out of my system. Every med I have tried has given me terrible side effects.
Don't stop, whitchurch54. There are at least 12 FDA-approved DMTs out there and one of them is bound to help. I, too, have RRMS and am very sensitive to medication. I also have other health conditions which present contraindications for some of these DMTs. I went through at least 2 different DMTs before I found one that I could tolerate. Get with your health care team immediately and try something else. You don't want to let the MonSter (great term!) defeat you! Fight on!
The side affects can be worse than
Symptoms when you
Have RRMS . I have a mild form & post traumatic
Stress.
I think you have to
Listen to your body.
Some over medication
Happens I told
My neurologist that
The med is too strong.
Sometimes ... Talk with
Nutritionists if you
Can . Read a lot about MS.
I know every one is different.
I do not think it wise to stop med because of side effects without first letting your neurologist know what you are going through. I've been at this (living with MS for over 40 years and being an MS Certified Nurse for the past 13 years) a long time and there are ways to minimize side effects. You do not say what medication you are on. If it is an oral, perhaps taking it with food will help. If injectable, keep really well hydrated. All of the side effects can be worse if you are even mildly dehydrated. Remember caffeine and alcohol are dehydrating beverages. Smoking also adds to worse side effects and faster progression.
As far as diet is concerned, there is no diet that has been found to work well in everyone to minimize the effects of MS. Well balanced is the key. Yes, listen to your body and move. Exercise in some form daily is a must to keep progression at bay.
Neurologist told me to stop Aubagio to get ot out of my system. She is anticipating putting me on Ocrelizumab
Hello, Robert! I'm a Caligal myself, currently I'm in VA though. I've had MS for almost 15 yrs...most of which I refused to comply with MDs suggestion that I should administer meds even if I wasn't showing any signs. You see, as an RN, I've always felt that diet and exercise could/would cure most everything. Heck...worked year, after year, after year...
So, fast forward... I finally bit the bullet and had to commit to hard core treatment, Rituximab. Dude, that's simply low grade chemo...fun!
I'be been told that my diet has served me well as I am still on my feet with a wicked limp... Fatigue has, as of a few years ago, changed my entire life! It sucks. I've not worked in over a year. MD's have no idea about anything for sure. They just don't!! Robert, because of this, I'm sorry to say,but we each have to find our own way by doing only what we can live with.
I know I'll remit...just have no idea how long I'll have to deal with this all so heavy feeling.
So, the morale? Be active and research all therapies available...trust me, there aren't too many. Then speak to your neuro. Diet and exercise are key and will keep you on your feet.
Also, please, never claim that you have PPMS, that's terrible... I suppose it all is. No guessing, ok?? May God be with you. Blessings
