Well; today was the day..... the DMT talk with my Neurologist. He’s a bit concerned to report that I have TEN spinal cord lesions. He said “1 is a lot in MS”. 5 on brain. For those that haven’t read my first post; I was diagnosed a month ago and did a round of IV and oral steroids until today.
Because I had MRI’s from several different places he used this time to collect and analyze everything.
So..... the decision has been made to begin Tysabri. I’m terrified of the brain infection it can cause. He said insurance may not cover it at first request bc it’s not a “first line” treatment; I have an amazing Doctor though; and he said he will appeal and fight it because if the number of lesions in my spinal cord. He says “we don’t need to be treating MS using only 1st like drugs if we know we need something different {stronger}”.
So..... that’s where I am now.
I also received 5 more days of oral steroids; Baclofen as needed, and Ampyra that he called “the waking medicine”.
Anyone had any experiences with these? Preferably good ones?! 😉 All I can do is pray!
*Addition; I learned I could click on the “tags” of those medications and see lots of posts; so please don’t feel like you have to respond* 😉
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4krobh
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Not respond, not likely, not in this forum. Sorry to hear about your dx and lesions. Being new to your dx of MS can be very terrifying to say the least. Tysabri is a good med to start especially if you doctor suggests it. Sounds like he maybe experienced with it. The main thing to know is there is a test [JCV] that will tell whether you are susceptible to PML [the brain virus]. I would trust your doctor, I don't believe he would lead you wrong unless he does not do the JCV test on you. Even if you are JCV positive and your number is low, it would be the best place to start. Look into Ocrevus and or Rituxan [off label use for MS] as alternatives. I would wait tell you have more information about what your insurance and your doctor will do next. This is a good place to come and let off steam or ask for any other advice. But please understand we are not medical professionals here and you should rely on your Neurologist for direction. You will get more responses. Patience is a very good virtue to have when you have MS. I feel for you so please keep us updated here. FYI, I have the more progressive PPMS or SPMS and on Rituxan for a few years, I take Baclofen, Gabapentin, and Cymbalta for nerve pain. Most important is, Be good to yourself. We are here for you and welcome to a wonderful group of MSers. Your new MS friend ~terry
I'm glad you got to meet with your doctor today and get a treatment plan. I was on Tysabri at one point. One thing I I liked about it was how closely monitored I was while taking it. I had this while I was going to an MS Center and it was nice having somebody experienced doing the infusions rather than having to give myself shots, too! I'm a big baby with shots. I never had any bad side effects or anything from Tysabri. In fact, I was pretty stable while on that medication. I hope it works perfectly for you. When I was on it, I had to travel a few hours to the Center so I made it like a special event. We would always eat out the night before. It's actually a good memory. I know, I'm weird. I don't think I've ever taken Baclofen but I was on Ampyra as well. I think I expected it to be a miracle walking medicine and, for me, it wasn't. However, I didn't give it much of a chance and I've heard of many people who found it to be just what they needed for the extra umph in their step. I didn't have any problems with it. I just didn't feel any benefit. Anyway, I'm not sure that really answered any questions you had. I'm glad you have a doctor who will fight for you. You definitely want that. Good luck adjusting to this new routine. Prayers are powerful!
I stopped taking it because I got more lesions. I started shortly after they put it back on the market and it scared me. Heck, everything scared me. I was in a denial stage where I really didn't think anything was wrong with me or, at least, that I wouldn't get worse. So, although, it may have slowed the progression down more than what I was previously on, I was happy to have an excuse to stop. In hind site, I probably should have given it longer, because nothing prior seemed to work at all. I was not JC positive.
And, you are always welcome. Wishing you a day full of many blessings!
I was on Tysabri for seven years and the only side effect was fatigue for a day and half. I did them on Friday afternoon and by Monday morning I was back at work. No relapses and MRI’s were stable and no new lesions 👍. I would probably still be on it, but I got cancer and had to change because of white t-cell problems 😡. Hope it works out great for you 🙏😉🐾 Ken
I am SO sorry to hear!! Do Dr’s link your cancer to MS drugs; or don’t know? Glad it worked and to hear a positive about it. Prayers for you; are you still battling cancer?
No they say it is not related to anything with MS👍. I have stage four throat cancer and was given 4-6months and it has been two years six months and still going 🙏 I had surgery, radiation and chemo 😣. Now they give me 50 percent chance of three years 👍🙏. I am very fortunate and great full for the added time and great doctors 🙏. Thanks for asking and concern 👍🙏😉🐾 Ken
Bless your heart; what a journey you are having to endure. Also what a testimony you have!!! Wow! You are most definitely a warrior and true inspiration!!!! Keep on, Keeping on! And we are here to cheer you on!!!!
Welcome 4k to the Precious MSers Family of warriorz!!! There's many on here who've experienced all those drugs, & yes Tysabri is very scary, especially if 1 is JCVirus+ pos. So, ask away, we'll be here for you! ❤🙏👍💜💛😄😍& yes my body &drugz dn't get along @ all... Blessings & Prayers🙏They do work!
I am sorry for your situation. I was on Tysabri for six years and loved it. I am jc positive, but never had any problem until the last month. They always said ny chance of getting pal, the brain disease was 1 in 1000. But out of the blue my numbers changed, and it became 1 in 115. They shut me down so fast, gave my husband a list of things to watch for, but I was fine. Since I went off it, I went thru secondary progressive, now diagnosed with primary progressive. Lordy, I miss my tysabri! I just hope you do as great on it as I did. I also took Ampyra for four years. I couldn’t believe how great it worked. But then as my disease progressed, it just stopped working. But it is a wonder drug in my opinion. Keep us posted. Love, Kelly
Thank you Kelly!! I am SO sorry about your JCV numbers which made you discontinue use. 😪 BUT be blessed in knowing you were able to take it as long as you did!! AND thankful for the close monitoring so they caught it before it was too late. Prayers & blessings to you Kelly!!!!
I’m so sorry about your lesions and symptoms. I, too, just finished 5 days of IV steroids and am finishing up the prednisone taper. Not my favorite... but I have regained mobility in my left leg. 😊
I started Rituxan in December. I felt awesome for 2 months and then started having crazy fatigue, increased left leg numbness, and bladder issues. I also take baclofen. I used to be on Tegretol for the spasticity and it worked so much better than baclofen, but I developed an allergic reaction and had to switch to baclofen.
I’m not familiar with Ampyra but I’m going to start learning.
I was diagnosed last October. Started with Tysabri Rejected by insurance the first go around. However it was approved with response of doctor. It takes 3 treatments to have enough medication in your system to be affective. Also on bacloven and some other drugs. It is very expensive so make sure you get approved before treatment. Good luck. And welcome to the club
Hi I'm on Tysabri I'm in the UK and I have highly active RRMS lovely to meet u xxx u will be fine 😊😊😊😊 am also JCV+ but very low and I'm watched like a hawk where I go for my treatment xxx
I was on tysabri for 5 months. I am the biggest scaredy cat on drugs. It takes me months to actually do it. So I get your fear. I d I'll not want to freak you out. So when my infusions were done for the day I felt great for next 28 days. Problem was the actual infusion. I had a reaction every other time. My advice to you is take benadryl before hand. I also took a valium but that did me no good. Sending you good thoughts. Now dr wants me to start tecfidera and my anxiety if off the charts again.
4krobh hang in there. It’s so overwhelming in the beginning! I have 5 small lesions in the brain and a bunch on my spine. I was on 2 DMTs and finally a neurologist I trusted told me that Tysabri is the only med that really works for the spinal lesions. I started the med an within 6 months I was feeling my legs again and walking MUCH better. I have dose 30 next week. Tysabri is the THING that I’m most thankful for. Good luck to you! Try taking care of you first!!!
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