health · healthcare · hope · medical · medications · multiple sclerosis · primary progressive MS · Research · Wheelchair

DMD – Disease Modifying Drugs

When I was first diagnosed in August 1997, there were only three DMDs available; the ABC drugs – Avonex, Betaseron, Copaxone. Being primary progressive none of the medications were actually for me, but we tried Avonex hoping to slow the progression. Alas, it did not work. Then when Rebif came out, we tried that. Nope, nada, nil. Finally when Tysabri came out I got on that immediately and it seemed to be working. Unfortunately it was not nice to my liver and I had to stop taking it. 😪

What I want people to understand is that these medications are there to hopefully slow and/or stop the progression. They will not repair your myelin, they will not make you walk again. People do notice a placebo effect and think that because they’re on the medication that’s why they are walking again etc.. While that is awesome, it’s also not the case.  What these medications do is, hopefully, suppress our over active immune systems and halt the progression. So any improvement, is all YOU and your awesome strength fighting the MonSter that is MS! 💪🏻

msdamage

As you can see from the picture above our immune system eats away at the Myelin thinking that it’s bad and in its own way protecting us.  If all goes well with the DMD will stop that from happening. At this time there is no other way except for these medications too slow and/or stop the progression of the disease.

HSCT – Hematopoietic Stem Cell Transplantation, is looking very promising. I’m hoping at some point it will be available for all of the types of MS. To follow the Journey of another amazing MS Warrior, check out this blog, Making Sense Of M.S.

I am now in the process of discussing two medications with my neurologist, Ocrevus and Lemtrada. I have to be very careful because of the fact they suppress the immune system. Because of my urostomy, as I’ve mentioned before, I have constant bladder infections. So when these medications suppress my immune system it puts me at a very high risk of sepsis. So, I’m not taking any of this lightly, but I really want my progression to slow and if possible stop. If I find something bad is starting to happen then I will stop the medication, but I’m very hopeful that one of these will work. For me the benefits outweigh the risks.

I see all the time how people are going ‘med free’ and that scares me. I fully believe in a good healthy lifestyle [diet] exercise and all the that goes with that, but that will not change the progression of your disease. I hear people say that they’re out of their wheelchair[s] now etc. following this diet or that diet. And that’s awesome, but what’s happening is they’re [most likely] in remission, but the disease is still in the background doing its thing.  If you’re choosing this route, just please be careful. Make sure you get your MRIs when needed and keep your doctor in the loop. Better to be safe than sorry.

I cannot wait for the day when I read, we have found a cure for MS! I just pray it happens in my lifetime!

Until then, this is what I think of MS;

pissonms

Have Courage and be kind! ♥️

7 thoughts on “DMD – Disease Modifying Drugs

  1. Ahh, the drugs…there are days I wish I could crawl under a rock from my pain too…positivity and spirituality has helped me through..not saying it is easy, never easy, but your inner drive makes you amazing, Tracy, that never goes unnoticed. 💐♥️

    Liked by 1 person

  2. My goodness Tracy this was an amazing and very informative post! It is crazy how many medications there are now. I am with you, when I was first diagnosed there were only 3 and they were injection types, which I was not good at doing! After trying numerous different medications, I think I finally found one that is working, Gilenya. Unfortunately the thing is with MS, life can change in a moment without notice. I need to have another MRI soon and it might show the lesions I had in October are healing or there might be more and then the doctor will say I need to think about another course of action. I am not ready for that conversation though! Thank you so much for sharing such a fabulous post! You are pretty encouraging my dear!!

    Liked by 1 person

    1. I hope everything is stable for you so you don’t have to try a different med. Positive juju on the way. 😉 i’m just crossing my fingers that they will let me go on one of them. For me it is so worth the risk. Hope you’ve had a wonderful weekend!

      Liked by 1 person

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