My multiple sclerosis decision
After much thought, research and prayer, this year I made the decision to no longer use any MS therapy drugs to treat my MS. I have PPMS which in itself is difficult to manage, but from the beginning nothing has worked for me to help slow the progression. I remember using Rebif after diagnosis, then Tysabri, Rituximab (trial use), Aubagio, and my last was Ocrevus. All with intermittent use of Solumedrol when things got really bad because that was the only drug that would actually treat the inflammation that was occuring when MS is active.
Over all the hours sitting in the infusion center nothing has worked. I’m thankful that different meds work for Relapsing Remitting MS. Many people have been given a shot at holding off worsening progression. But the large costs involved with the different meds has gotten ridiculous. Thousands of dollars for one dose?!!
I talked with my neurologist at the beginning of the year of no longer using Ocrevus and she approved my choice. I will see her once a year to give updates but unless something really bad happens I won’t have to visit. I know a lot of people think that it’s a bad idea to do such a thing, but it’s my life and it’s how I want to live it.
My decision for stopping Ocrevus was because of how Ocrevus was fast tracked through trials to get FDA approval. The fast track part just didn’t sit well with me. We still don’t know the long term stats and even if they will be accurately recorded. I was uncomfortable with the cancer rate for people using it vs. the placebo… but there’s still no accurate data.
After Covid there were so many issues people were having with big Pharma and finding out all the get rich schemes that were going on around the world. I didn’t like it one bit. I never got the “clot” shot and am so glad of that. I did get a bad case of covid but just nursed myself back to health without doctor intervention. I’m told that makes me more immune than the vaccine anyway. People weren’t helped by it and secrets are still being uncovered about what happened over the last few years. It’s sad really. So much deception. So many secrets.
I know this will be a message that can get me banned online but I actually don’t care. Ban me if you must, but I will never stop talking about my life and what is happening. I know that there is more to life than meds, doctor appointments, MRI’s and the like. I want to live my life now… not later when things may get better. My now is important because that’s where hope lives.
And the next person that wants me to get stem cell treatment, cover the cost and maybe I will. But I’m told because of my progression I’m not a good candidate for that either. I’m not looking for the next miracle cure for me, I’m just looking to enjoy my life. If that’s not okay with you… oh well. I will keep smiling, laughing, sharing and hoping. That’s just a part of who I am.
1. Simplify your life.
Penelope – a brave decision! You join those like me who have never been eligible for either DMTs or stem cells. We struggle on as best we can.
Best wishes
Judy
Thanks… good company. 🙂
I too, am no longer taking any DMTs. Having reached the magic age of 55 this past January, the age that was recommended to discontinue Tecfidera due to potentially increasing risk of PML, which was always a risk from the beginning. But I pulled up my big girl pants and took the chance.
My RRMS is now SPMS. My current neurologist an MS specialist at the closest hospital MS Clinic is treating my actual symptoms (as they arise or come & go, examples muscle spasms, bladder or bowel issues, etc.) MS is a progressive disease and I progressively punch back any way I can!
Good for you. Your punches are making a difference. hugs
Penelope,
I applaud you for making your own decisions. You’ve researched the meds, lived with the high costs, and decided what is best for you.
I have been shocked by the things that have been uncovered in recent years, too. I spend the bulk of my trip to spend with kids and grandkids on the phone with specialty pharmacies, insurance companies, and my doctor’s office, but I still had more phone calls after I got home. After that experience (and having no where left to inject), I stopped DMTs last year and haven’t regretted it. My neurologist did decide not to see me anymore since I’m not on a DMT. I’m 63-1/2 and know I’m progressing slowly, but I love not being tied to a needle, nor worrying about side effects. I do take supplements my PCP researched and recommends, but I don’t follow any specific, restricting diet.
Enjoy your life. You’re in my prayers for strength, comfort, and God’s provision.
Glad to know other like you are out there. I take supplements as well by not on any diet plan. just try to eat healthy. Glad you are enjoying your life regardless of MS. xoxo
Erin, it’s interesting that your neurologist decided not to see you since you were no longer on a DMT. Mine too. My neuro was Dr David Brandes (now retired) the guy who invented the Lumbar Puncture and man, did we ever have a blow out on getting the LP…I won, no go. Also, if you look them up, you will find they get upwards of a million dollars/yr kickback from big Pharma for getting patients on DMT’s.
He wanted to put me on Mayzent…and during research I found you can actually die if you discontinue taking it. um…wow! efaidnbmnnnibpcajpcglclefindmkaj/https://www.novartis.com/us-en/sites/novartis_us/files/mayzent.pdf (6.1)
Really important to research on your own, rather than depending on the neuro’s word! Take responsibility for your own health!
Too much money crosses hands all for the ill.
Karen,
I was shocked when she said she no longer needed to see me! We still have MS! I am so blessed to have a marvelous NP who researches like crazy to find the best supplements and meds for me. I am so glad to be done with DMTs. I know I’m progressing, but it’s slow, and my quality of life has actually improved.
We have to be our own advocates more than ever.
I am shocked but proud that you have made this decision. I am on Ocrevus along with the standard ms daily pills. I am also 53. In a have been wondering if there is a time is in which they will say no more.
Will you please let us live vicariously through you, as if we haven’t already, to see what the “no meds” is like. Cause it kinda scares me to death!
Will definitely always let you know. I’m hopeful. It’s not as scary as thought. xoxo
I get everything you said. I got cancer on two of the drug treatments. Then I won’t go back on treatments for a few years. So many ups & downs. But I to. Choose to do what works best for me. Live my life. So I have more happy times. Hugs we got this
Agreed.. We Got This. Hugs xoxo
It’s your decision lovely and once you are happy, that’s all that matters.
I’m a big fan of yours and love to follow your journey. That will not change !
Best wishes and lots of ((((hugs))))
Dee
Thank you Dee. I will always be here. xoxo
WOW
You are such a brave warrior! May the Force be with You!
I have RRMS and still fight like mad, not accepting it 2 years later.
Fight! Maybe stopping the treatment won’t make it worse at all … Regarding a cure, well some international tests might be promising …but not for now.
I don’t see any light at the end of the tunnel. But reading you was a real pleasure. I felt connected with you. You are a wonderful writer. Keep tell us how you are doing please.
It gives me faith for our fight against this monster MS.
Love, xoxo, Lisa
Keep fighting. It really matters. I have no plan on going away. I will always be here even if the world comes crashing down. Hang in there. xoxo
Inspirational! I’ve never taken DMTs – was told I was stupid by a neurologist (later apologised) – now at 58 and kids grown, I thought ‘well may as well take the drugs as organs are pretty dire’ / given a colectomy in November, so truly … life’s become grim – but you have reminded me why I didn’t want super toxic drugs in the first place! So thank you – wise words and choice.
Thank you for reading and for your wise words as well. Sending hugs you way. xoxo
Penelope,
You are doing you and that should be applauded for the reasoning behind your decisions. We need support for the medications and for better medical care. You are a brave and strong woman.
I agree. Better care all the way around. xoxo
Way to go girl! I researched the heck out of all the available drugs and didn’t find one that was acceptable! I’ve had RRMS for 4 years and SPMS for the last 3…I’m also in a wheelchair. It took me 3 years (and finally) I told God:
“Thank You for my MS. I know this is the very best path for me because You care more than anyone for me and my health. There must be something I need from it to prep me for eternity with You and I know it will be worth it in the end. Thank You for the MS, I’m turning it completely over to You as You know best. I’m no longer going to fight it, it is Yours to fight or heal! Thank You for loving me and helping me, especially on my bad days!”
I don’t believe God gives us bad things, but He is present there in them with us, and uses them for good.
Sorry to get preachy…I just wanted to share with you my discovery and how it has changed my perspective to looking forward to every day! I love your blog and following you on your incredible journey.
You sound like me. I told God use me but wasn’t expecting it would be because of MS… but He told me He would use me because of it. People will open there hearts to someone suffering as they are and I can help. So I thanked Him and continue to. Glad to be in the journey with you. xoxo
Amen
I am seriously considering dropping gilenya because it makes me feel worse not only that but I have also been diagnosed with multiple myeloma and I never had any COVID vaccines either after seeing people dropping like flies and hearing about people dying immediately after getting the jabs.
It’s such a scary world we live in with secrets everywhere that cover up what’s really happening. Go with your gut and do what you feel is right… xoxo
Diagnosed originally with RRMS in 1996 and later SPMS I have never taken any drugs for it other than elevil for nerve pain. I no longer take it. I just have learned to live with the pain. I feel the side effects of all the ms drugs offered outway the benefits. Im trying to live the best life I can with this horrible disease. Much love to all♥️
All the best. Be well and stay strong. I will keep you in my prayers are I have since I have been reading you for years. I still try to use the MS for Mighty Special. None of us asked for this , but I have always tried to put a positive spin on things. I have been living with this since 1993. My thoughts always.
Carla B
I have had MS for 10 years. I stopped taking the DMTs when my hair – the 1 thing I am vain about – not only fall out but change texture and color. It was nasty. But 8 years later here I am starting Kesimpta simply because I have been in the hospital so many times this past year. It may not last. The hoops you have to jump thru to get help paying for it is a nightmare! It’s just nuts. I would rather take my chances with healthy eating and supplements. I totally support your decision and no one is gonna ban you. Your blog keeps so many people going! We would be lost with out you!
I applaud your choice! I have been on Rebif for close to twenty years. Luckily for me I’ve experienced few relapses and been able to live a good life but it’s been nothing but a struggle to pay for the meds. I’ve toyed with quitting myself. I also completely agree with your stance on the FDA pushing through approval on these drugs and just like with the jab, nobody can say what the long-term affects are. I am more suspect of big pharma than ever before, way too much money being made!
I wish you the very best and hope you will still keep us up to date on your life with MS.
Michele
I stopped Copaxone at age 65. (19 yrs) Doctor tried to convince me to try the new drugs for years but why stir up the water if you don’t need to. Besides the costs after 65 weren’t in our budget. Still to this day said no to the “jab”, be so glad when they stop asking. Don’t regret for the freedom of no more DMTs. My MS Dr still sees me once a year.
Doesn’t change my mindset a bit been considering the same thing myself. Will still follow the posts