I have two big decisions to make, a lot of research to do, and many facts to consider, all in the name of good health and a better quality of life. I hope.
My body is a battleground and right now MS is winning. My legs are numb and my arms and hands are weak and heavy, sometimes shaky.
My thoughts are cloudy and my eyesight is sometimes blurry. I feel dizzy and generally off-balance. And then there’s relentless fatigue.
My ongoing stomach troubles coupled with ongoing stress fuels the disease.
So there you have it. I’ve let you in on my story. It's MS Awareness Month and I’m openly sharing my world to give you an idea of one person’s MS story.
I also wanted you to know why I haven’t been around much lately. Most days I’m confined to my home, barely taking part in the world, doing my best to nurture relationships by phone or computer.
My husband drives me to appointments and events that aren’t around the corner. Our social life is pretty much at a standstill. I pray for the day when things can return to (near) normal.
Now I have two big decisions to make.
My first decision is whether to agree with my neurologist’s recommendation of a five-day course of intravenous steroids. An hour a day for five days I’d be pumped with corticosteroids that are used for the management of MS acute exacerbations (flare-ups.) Steroids have the capacity to reduce inflammation of the nervous system.
In other words, they will (hopefully) speed up healing of my MS symptoms. It’s not a sure thing and they’ve helped in the past, but I was fifteen years younger and my MS was less invasive.
What I fear are the horrible side effects I experienced when I was last on steroids. Heart palpitations, weight gain, insomnia, and feeling generally off balance and on speed.
My second decision to make in the coming weeks concerns the general management of my MS.
When I was diagnosed with the MonSter there were no approved medications on the market. When the first MS medication was finally FDA approved I got on it right away. I quickly learned how to self-inject.
The side effects from that first injectable and the second approved one forced me to stop using them. The third injectable, Copaxone, was the charm.
I’ve been injecting myself since I was in my thirties and now, at fifty-nine, I’m tired of it. The flushing and heart palpitations are for the birds. My body is covered with large indentations and hard lumps at the eight injections sites.
I’ve had enough.
My neurologist suggests I take a look at three medications that she feels best suits my needs, Ocrevus (an infusion), Gilenya (oral) and Aubagio (oral). As with other MS medications these seek to reduce the number of relapses, delay progression of the disease and limit new disease activity.
Brochures from my neurologist about Ocrevus, Gilenya, and Aubagio
I have to read up on them, consider their side effects, and make a decision. If you have experience or thoughts about any of these please share them in the comments.
Despite all of this I will be damned if MS will take away what I CAN control and that is a positive attitude and the knowledge that I’m blessed with a devoted and loving husband and son, people who care about me and my welfare, and the incredible MS community who always rally around one another.
Hi Cathy, I am on Betaseron now and injecting myself. I too am tired of the side effects and lumps on the injection sights. Anyway, at my next appt. with my neurologists I am going to ask him about Ocrevus and whether it will be a "fit" for me. Best of luck with your decisions.
Hi Cathy. So sorry to hear that things are particularly tough for you right now. I don't think I, or most people really, can understand everything it takes just to get up every morning and keep going. I admire you deeply for all that you do and how you manage to stay hopeful through it all. You are a warrior! And for what it is worth, whatever decision you make will be the right one--one day at a time. ~Kathy
Hi Cathy
I was diagnosed 25 years ago. On copaxone most of that time. Mostly exacerbation free. Until two years ago, which according to docs the copaxone stopped being effective and I had a flair which needed three days of I’v steroids. I chose Tecfidera as my new drug. A little rough on the stomach. Probably would go with the infusion drug Ocrevus if I was you. Tough decision. I know it was for me. Biogen is paying for the Tecfidera, after making me jump through hoops., price was an issue, as you know these drugs are crazy expensive
Good luck with your decision.
Hi Cathy,
I am sorry to hear that you are struggling.
I am just a few years younger than you and was diagnosed with MS in 1987.
I too, burned through the ABC drugs. Miserable, never-ending "flu-like" symptoms with the interferons and then relapses with copaxone (and ugly lumps at injection sites). I have now been on aubagio for nearly five years. I love that it is oral. I did have the expected hair loss at the beginning, and then interestingly again another time. But not enough to be noticeable to others and it did stop.Otherwise, it has been a breeze.
I have never taken steriods - I never felt my relapses were bad enough for that - so can't help you there.
Best wishes with your decision! I'm happy to chat privately if you want to more details on the aubagio!
~Susan
Cathy, I am so sorry to hear this. I don't have any advice but want you to know I am sending extra special hugs from Switzerland. Keep fighting!
Sending my love
Hi. I don't have much to offer about your medication decision because I know you have most likely researched them thoroughly. Best to hear the experiences from those who have taken them. Just wanted you to know I hear you and am wishing you the very best and sending major positive thoughts your way. You are a trooper and an awesome support for others. Glad you are taking care of yourself in the best way possible. If you ever decide on a second opinion at Duke or another NC hospital, you have a place to stay!! Sending a gentle hug of support.
I have made the decision of never taking any medications......and I think I am the better for it......my progression has been slow for PPMS....diagnosed in 2006 but I know I had it a lot longer....my lesions were present in a 2000 MRI....thought I have Fibro before than.....you are in inspiration.....I noticed recently that writing in script is becoming a challenge and I stopped running in 2006 and now don't walk around the block....I accept that....I will say some extra prayers for you...
So sorry your struggles are so overwhelming right now...Worked my way through the ABC drugs. I have also received the solu-medrol infusions with great success. Doesn't completely fix the set back but at least seems to shorten the duration. I am not familiar with the other 2 medications but I have been looking at Ocrevus so I am interested to see what you decide...big hugs!!
Good luck, Cathy. I know MS is different for everyone, but Gilenya was a lifesaver for me after 8 years on Copaxone. My worst side effect is headaches now and then. Far better than the explosive diarrhea associated with others, if you ask me.
Same goes for steroids. My last BAD exacerbation in 2014 (the one that led to getting off Copaxone and on Gilenya) was halted with steroids. Sure, the effects stink, but they thankfully are less detrimental than the MS exacerbation effects.
Just sharing what worked for me and the relapsing-remitting form I've dealt with since 1992. You are in my thoughts and prayers, wishing you peace in the decision-making process and rapid recovery with whatever your choices end up being. Hugs to you. xoxo
Dear Cathy,
My heart aches with you. I can't take away your MS but I can continue to pray that you will get some relief. You are an encouragement to all of us, keep fighting! Be strong my friend and always keep hope ahead of you. Gain strength from knowing that you are lighting the path for those who follow in your footsteps. Sending much love and hugs. Love you! -Bo
P.S. I make house calls if you ever want some comic relief!!!
Dear Cathy,
I am so sorry to hear that things are so difficult for you. I want you to know that I think of you often, and am cheered at what an incredible advocate you've become for others inflicted with MS. You are an inspiration to so many people, even those of us who luckily aren't MS sufferers. Sending you lots of hugs and all my love, Wendy
Sorry to hear your symptoms are increased. I remain stable; at 68, I will remain MS-pharma free ... I continue to eat vegetarian ... I continue to teach quilting (lost my academic teaching career to MS depression/anxiety/cog fog) and lost the love of my life after 50 years of friendship/marriage/companionship/trust/caring for others and each other... I tried to join him this past winter, a year after losing him, but failed. I can not begin to explain the depth of my loss ... I don't want to worsen in symptoms as I don't want to burden anyone with my care. I am so glad that your husband remains in your life. Treasure him.
Oh, my friend, my heart aches for you. You have gone through so much for so long. I pray whatever decision you make brings relief and better health. I can't wait for the day when you turn the corner and feel more like your old self. Sending tons of love and warm hugs. xo
I'm so sad to read this, Cathy, and wish you strength and healing. Hoping you'll reach the "right" decision and regain your strength and fight.
Bless you. I have a friend who does monthly infusions with platinum in it. It works for her, but she knows there are possibilities of side effects. I am so sorry you have to deal with this.
Cathy, It sounds like you have some good options and I'll be rooting for you as you make these decisions. It's frustrating when there is not one right answer, but with your perseverance, I know you will continue to make positive improvements!! Xoxo
I am so sorry you are going through this. I know how difficult this can be. It is amazing that you are still writing. You are so strong, if anyone can beat this it will be you!
Cathy, I'm so sorry that you are still struggling. It is so frustrating, isn't it, when there are so many things you want to do, so many things that would make you feel like 'yourself' again. I have nothing to offer on the medication, as I haven't taken anything in a while (I hear you about the injections though). I wish you luck with your decision. Please keep us all updated on your progress.
Dear Cathy, I have no words of wisdom, please know that I think of you often. I will look forward to reading of your next step. Medical decisions are staggering with the amount of information to process. May peace and clarity be yours as you navigate these waters. Much love to you, Terri
Cathy, I can't even begin to fully comprehend all that you have coped with so courageously in the face of this disease. But I can say this ...
Your messages of friendship & encouragement and your dogged determination that your spirit will not be broken by the MonSter are beyond inspirational. We are all blessed to know you. (And, might I add, your classic comedy clip shares always seem to appear just when they're needed! lol)
I'm so sorry things have not been going well and thank you for your honesty. You are in my thoughts and prayers.
I wish for you a clear path to your decision
Cathy, I am so sorry. I will hold you in my thoughts and prayers and see you in a healed state. I know you will make the choice that is right for you.
Oh Cathy, my heart goes out to you. I wish I lived closer so I could do restorative yoga with you. I’m praying you will find the right medication to heal your body. Sending love ❤️ 🙏❤️
Hi Cathy,
I'm just thinking about you.
Joan
Sending you well wishes and good thoughts that you will make the best decision for you. It's a tough disease but you are a fighter. We are all pulling for you to get relief and healing soon.
Meryl Streep look out. Boy does she have competition. I would never guess that you were having any problems. You always so upbeet and cheery. You are such a beacon in the MS community. Heck in the Life community. I wish I could help you with your decision. None of them sound wonderful. I guess I shouldn't be bitching and moaning about my various broken parts. Is there a place where MS sufferers can all get together and discuss their therapies and what does and doesn't work? I'm sure there is and if there isn't I'm sure you'd start it. Your spirit inspires us all. Of course what you really want is to not inspire but just get on with your life! You've got the grit lady!
Hi Cathy. I like to say that MS means made strong. Some days MS means made stupid. Sometimes it means missing society. Or multiplied sensitivities. Or many side effects. Or many spasms. Or I need more strength. I have finished my first 2 half doses of Ocrevus and one full dose. I seem to have tolerated it well. Although the last two weeks I feel like I have absolutely no energy and can’t pick up my feet or use my hand for anything. I just thought of another one. Mascara smudges. Blessings and prayers to you!
Cat, I have you in my heart and prayers daily. We not only share the MonSter, but the tummy issues as well. I know the steroids are doable and can offer almost immediate relief post side effects. Please know this Hoosier is pulling for my Yankee. Much love your way my friend!
Tres
Hi Cathy,
I was diagnosed RRMS in 2002, was on Betaseron for 10 years, then Tysabri for nearly 5 and off meds for a year to "reset." Unfortunately, I had highly active disease the first 10 years, Betaseron was not effective and by the time I got on Tysabri, a lot of damage had already been done. My diagnosis changed to SPMS as I haven't had a relapse since 2012, yet things continue to worsen. I have been on Gilenya (fingolimod) since October and although not approved for SPMS, the research shows that it has positive results for this phase of the disease. Later this year, Siponimod, which is similar but more selective will be released for SPMS and I will likely switch to that. Wishing you the BEST.
Hi Cathy. Thanks for sharing. I'll keep you in my prayers.
Cathy,
This must be hard. Terribly hard.
And yet, you're writing this! Hats off to you!
I'm sharing your post with my two young-ish adult daughters.
Will keep you in our thoughts and prayers.
Hi Cathy.
One of your fellow bloggers is a good friend of mine. She knows I’m an MS research nerd and referred me to your post.
I am 58 w/ PPMS diagnosed in 2003. I did Copaxone for eight years, then Gilenya, Tysabri, and Tecfidera and I continued to progress. My neurologist (like yours) recommended Ocrevus, but I (like you) was unhappy about the “imbalance in malignancies” (cancer risk), as they delicately call it. Instead, I am on an earlier version of Ocrevus that uses the same B-cell depletion strategy and is made by the same manufacturer called Rituxan. Rituxan has been around 20+ years and is well tolerated without cancer risk. Cynics say Ocrevus was only developed because Rituxan is going off patent.
As for steroids - yeah, the heart racing and palpitations suck, but if you’re in a bad flare, they can really put you back on the rails fast. The side effects, if they happen, last a few days. If you do Ocrevus, Rituxan, or Lemtrada, they’ll give you an IV steroid first anyway to prevent infusion reactions. I used medical marijuana to help me sleep for a few days.
A fantastic blog on all things MS and especially (but not only) easily digestible discussions on drugs like Ocrevus and Rituxan, plus other treatments is Marc Stecker’s wheelchair-kamikaze.com. Marc is brilliant and a great writer - I highly recommend it.
As you well know, living with MS is about trade-offs and workarounds. We can’t stop it but we sure as hell can drag our feet. I wish you well.
Cathy, wow. With your life-experience and the help of your doctors and family I KNOW you will make the right decision. Could you try one of the oral medications before the 5 day of infusions? But because this is a bad flare up, maybe you need to do that to calm things down before you start one of the orals. You have a lot of good advice here. It helps to ask. You deserve the best, Beth
What about trying Protandim? it could manage both problems.
Gosh Cathy, I didn't realize all that you have gone through. I will be praying that you can discern the right decision, and that you will start feeling "near normal" again. Thanks for sharing this so others can learn. Tweeting this in case someone else I know is needing your inspiration and information. Hugs xo
Oh Cathy I’m so sorry to hear that things have been so tough. I love your honesty and willingness to share your story. No advice...just know I’m thinking of you and am in your corner.
Cathy, hello from one who shares in the dilemmas of MS. You truly are blessed with so many that rally around you! There is nothing else that I would choose to say that has not all ready been said. I too, can share with you all that I have tried. Due to the uniqueness of our special disease, everything works differently on most. I know that is not very helpful, however, ultimately you are the one that has to make your decision on what you are going to do.It is important for you to hear the advice of professionals. My brother once said to me, " just remember they are not G-ds. Just practioners of medicine. I know, easier said than done, try to be strong. I wish you all the best. Baby steps! It sounds like you have two incredible people in your corner!
Oh, Cathy, I'm so sorry that you're struggling and hope you kick this disease's ass. You know I'm rooting for you - always - and am sending you virtual hugs until I can give you a gigantic one in person. Love you, my friend.
Cathy, I sincerely admire your courage to share and research a better way to deal with this horrific disease. I am encouraged by the results some have shared, and hope that there is a glimpse of hope for you in one of their treatment options.
I know life has not been easy for you, but your spirit as others have mentioned, it quite amazing and uplifting for the rest of us. Of course, having Gary to prepare healthy meals for you and ensuring that you get to your appointments, and always making sure you eat your vegetables must help, too!
Please know that we love you, and are here to support you in any way we can. Love, Jo
It's a tough decision and I can't mae a recommendation, but I can share my experience with Gilenya. I have been taking it for over a year now and am fortunate enough to have been approved for their financial assistance so that whatever is left after my insurance coverage is paid for. I haven't had any new lesions form since starting it (woohoo!). I will say that I had a bout of shingles around 6 months ago which was no fun at all & my neurologist said that's common with Gilenya. If I have shingles once more within the span of a year, she's changing my medication. That's the only issue I've had so far - no side effects to deal with, no true relapses, no problems. I hope that whichever treatment method you choose works great for you! Sending hugs!!!
Hi Cathy,
Like you, I was on Copaxone injections. I’m on Ocrevus infusions now. Overall, I’m pleased with the results. First 2 infusions are half doses 2 weeks apart. Then once every 6 months. I started in June of 2017. Of course, we’re all different but the benefits I’ve seen so far are less fatigue & less vertigo. Hoping & praying a cure will be found!
Best wishes,
Suzanne Sparks
Being in such a quandary, especially when it comes to your health, is never easy. At 59, you should actually be readying for retirement, away from the big decisions. I hope you finally find the relief you need. MS could really take its toll and put you in a situation where you need to pick the lesser evil. That third option recommended by your neurologist sounds good, though.