To be honest I am unsure what to say. I was diagnosed with polycythemia Vera in 2020 which is a rare blood cancer. Not common in young people and not common in women, yeah me! No cure only manageable. After getting my Covid booster in November 21 my blood counts never stabilized. So, I was faced with starting a medication which I wanted and insurance denied. I was devastated as I want it because it can stop progression of my disease. Well, shortly after that incredible stress I got double vision. I of course I thought I had a stroke as PV causes clots. Long story short brain was full of lesions and that is how I found out I have MS. I will not bore you with all the details of that hospital stay and the doctors that were confused like me. Anyways, I have it. Never have had any movement issues, no other signs of it. Vision issues went away in 2-3 weeks. I wasn’t put on anything at the time. Think neurologist was confused too. Next MRI showed a new lesion. Now the medication I wanted for my PV is alpha interferon, you will never find another autoimmune disease and cancer combo that is treated with interferon, weird! So, I convinced neurologist and oncologist to let me try it. My blood counts have now normalized after almost a year. I work out 5 days a week, I have a 5 year old, I work full time, I feel great. I put off my repeat MRI, one is because I had to reschedule for weather issues but it will be in April. I of course am terrified because I don’t know what is going on up there. I don’t know if adding a dangerous medication to what I am doing would be smart or dumb not to do it. I know that I will not know til I put my big girl pants on and just do it! Knowing I will be ok no matter what. I guess I am just scared. I want this other medicine to work for both. It was studied in the 90’s and it did. I am about to be 42 and all of this crazy stuff happened to me after having my daughter. Likely did something to me. Just was hoping for some reassurance. Thanks!
New to MS group : To be honest I am unsure... - My MSAA Community
New to MS group
If you are on interferon alpha for your PV it won't be doing anything for your MS as the interferon used in MS is interferon Beta - which is not the same thing. So, I think you are getting things mixed up when you say that this "other medicine" was studied in the 90s and worked - the Beta interferons were studied as an MS treatment in the 90s and approved for use in MS but they are not the same drug as interferon alpha.
I'm not sure quite what you mean by "I don’t know if adding a dangerous medication to what I am doing would be smart or dumb not to do it." - what is the "dangerous medication" you are referring to? Can you clarify what you are asking.
You can find them on pubmed. They are studies from the 90’s. I am aware that beta is used for MS, but alpha is very close, kind of like cousins. I am a physician assistant and have been practicing medicine for over 15 years. And it took several months researching before I started alpha interferon and presented the studies to both physicians and both agreed beta and alpha are close enough in action that it may work for both. But the studies do exist. Alpha interferon has more potential side effects than beta, has the same mechanism of action. I am just leery of adding anything to this if by chance my MRI shows something new. As I am doing so well. Just kind of wanted to see what others are doing out there.
I'm so sorry to hear you are going through this. Sending you hugs!
It sounds like you have been handed an insanely unfair amount of bad luck. I'm so sorry for what you're going through.
Just to clarify, are you using an interferon now? And you're worried that if your scans are worse you might need a stronger drug?
I'm glad that you're feeling so well. A lot of people with MS are exhausted all the time and have to carefully conserve their energy to avoid having a relapse. And it's so good that your blood levels are where they should be with the blood cancer.
I would definitely want the form of interferon to be approved for treating MS. There are newer, more effective drugs that I personally would prefer to be on (and am on) for MS, like Ocrevus or Kesimpta. But your doctors would have to make sure whatever you're using can be mixed with the meds for your PV, which is something else. The combination seems rare to me. I wonder if you should be going to a big university hospital with an immunologist on your care team, or at least have your doctors consult with one to make sure they aren't suppressing your immune system too much.
As a lifelong procrastinator, it pains me to say this. But maybe it would be better to get your scans out of the way instead of stressing yourself out. They may not be bad, and if they are, getting on the right treatment is probably the best thing you can do for your physical and mental health.
I know this is terribly scary. I wish you the very best of luck with all of this. Let us know how you're doing and we can support you along the way!
I am on interferon, just alpha. I am concerned about adding something. Like I said previously I have found evidence based articles in the past that alpha interferon worked for MS. And I guess I am scared that if they find something of what they would add would suppress my immune system too much where it would create new issues I don’t have. I have zero MS symptoms currently.
But you are exactly right, I just need to have the scans and then I will know. Right now it is the unknown. I am trying to focus on the day to day right now. I just don’t know if I want to be on two immunosuppressants when I have no issues. And you are so right, I just need to get it done and then I will know. I appreciate the help and support. I am having my MRI in April, just around the corner so my anxiety sometimes gets the best of me. But I am grateful everyday I live this wonderful life I have. Thank you
Sorry, ideally I shouldn't have commented on my own preferences for medication when you didn't ask for that, and I have never been in your shoes! I hope the alpha interferon works out for you and kicks some MS butt. 👍
Don’t be sorry at all! That is what I want. I want to hear about meds others are taking and doing well, so I won’t be so scared. I know my situation is different, but that is why I posted. Than you! What you just said it what I needed! Going to kick butt and take names!!!
Awesome! 😁
Wow!! You have really been through a lot! It’s ironic because I was having symptoms way before my daughter was born and I was just turning 36 when I had her. I remember when I was pregnant by was shaving my legs before I went to a GYN appointment and I couldn’t feel, the razor scraping across my leg… I mentioned it to my OB/GYN and she just basically told me you don’t want to go there right now .. I finally got my diagnosis when everything hit the fan just after 911… Everything went numb from the braline down.. I had a two-year-old and a five year old at the time… they slapped me on Avonex soon after they found the lesions in my brain and my cervical spine… Of course, that was after three days of Solu-Medrol infusions .. this is a really good group of people in this forum, whether you need advice from people who have been there and done that or sometimes just a friendly ear to listen to you vent .welcome!
Thank you. I know this post was really premature. I just need to get the scan and everything maybe fine and I maybe stressing for nothing, but it is good to know of others out there. My family is so supportive, but luckily everyone else is super healthy. Venting and just saying things out loud sometimes is very helpful. I will post after my MRI in April.
I think I am just scared of having to face another medication. Not sure why and I know I shouldn’t be, but I can’t help it. 🙂 I am so blessed as I am asymptomatic. Just going to try and focus on that. My C spine and Tspine MRI was negative, so that was a positive. Again appreciate the feedback and support.
I totally get what you’re saying about having to face another medication! You’re in the right place to be able to vent and just say what’s on your mind without being concerned about worrying your family.. sometimes it’s just less scary to just say some thing aloud, or to type it into the forum were there are understanding people.. who may have knowledge to share. Please keep us up-to-date and I look forward to hearing from you soon.
You are so right. Venting is sometimes the only way I can work through it! Thank you
Welcome! What a mix 😵💫 I would email Gavin Giovanonni and see what his thoughts are, if you need something else to stabilize MS. I hope alpha works for both! 🙏
Welcome my Friend KLCTJC🌺 No need to be afraid here; we are caring folks and we try to navigate through this (sometimes challenging) life with compassion and support. Many here have multiple health hurdles! Notice, I said “hurdles” because at times we are able to KICK them down, Walk around, or Push them to the side! I too have multiple health issues; heart that needs monitoring and about three doctors I see every couple of months! The struggle is real at times, but little did you know- you have inspired me and probably many others! Your a mom, you still work and get your “fitness life in; you’re incredible ❤️ I ‘m dressed right now waiting for my husband so we can go to Planet Fitness!!! He and others say exercise is helpful to reboot our bodies enter fuel and other good stuff. I admire you sis, and welcome to our caring circle! NeeC
Aww….that makes me feel so good! You made my day. I am just going to keep going til I can’t! I feel so happy and blessed in this life. Like you said just trying to navigate! And I feel you less than 5 years ago I only had an OB, now I have all kinds of doctors! But thank god for doctors and medicine and for all you folks too! Having a place to vent and share helps so much!
So glad yall went to the gym! I am a Peloton junky! Usually tears streaming down my face after a ride, but love yoga too! Been doing it for over 4 years now. Thank you for your kind words of encouragement and wisdom!
🌸🌺🙏 you’re welcome!
Wow, you are dealing with so much! The only thing I want to add is to keep exercising no matter what comes your way. It helps with so many things, including MS. I wish you the best.
Good luck
Welcome to our group! We have several members in healthcare here. I work full time as a radiation oncology nurse. I was 45 when I was diagnosed and had several lesions in my spinal cord and >10 in my brain when diagnosed. It has been 10 years and I have a little trouble walking and fatigue now but still manage to work full time. I am hoping to work another 10 years.
Exercise is so important! I wish I would have pushed myself to do more, especially when certain movements became more difficult. I feel like by me giving in to the difficult movements only made them worse. I have been doing PT exercises to try to get a little back and at least maintain my walking ability.
I recommend you keep taking stairs and do exercises for hip flexor strength. Those commonly get weak and can impair walking. Also, lifting your heel up toward your butt can become difficult as well as lifting yourself up onto your toes. Maybe a prehabilitation visit with PT would be good to get exercises to prevent common weakness seen with MS.
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