My MSAA Community
3,761 members โ€ข 7,145 posts

I called it ๐Ÿ˜ญ๐Ÿ˜ญ๐Ÿ˜ญ

Didn't I predict a new cord lesion a few weeks ago? Yes, yes I did. And the 5 minutes I'm not near my phone is when my MD is calling me to tell me about it and what's next, dangit!

How in the world do you pick a drug?!

71 Replies
oldest โ€ข newest

So sorry Dali. Where is the lesion and what symptoms are you showing? Hug to V. Blessings Jimeka ๐Ÿฆ‹ ๐Ÿซ

7 likes
Reply

Thank you ๐Ÿ˜˜ C4-5 3mm and reactive to contrast. I don't know if it's an old spot that has gotten larger because my old reports have no measurements, but this would be #6 in my collection ๐Ÿ˜ต

It started 4 weeks ago with feeling shocks down my legs when sitting, and has progressed into achy legs, slower walking, and difficulty climbing stairs. I also have "cold constricting socks" sensation but my feet are warm.

8 likes
Reply

With it been your C4-5, do you not have any sensations down your arms?

7 likes
Reply

Nope. I have 4 other lesions above and below that one, and only had arm tingles one night 3 years ago ๐Ÿคทโ€โ™€๏ธ I've mostly had posterior lower body symptoms, and feet/ankles.

2 likes
Reply

Thank you. Hope they can help somehow. ๐Ÿฆ‹ ๐Ÿซ

2 likes
Reply

Well, now my hands are numb. The stairs are getting easier though. ๐Ÿคทโ€โ™€๏ธ

1 like
Reply

Oh kdali, I am so sorry. How are you coping with Victoria? I hope that you return to your normal soon. Hugs Jimeka ๐Ÿค—

1 like
Reply

Ty, me too! It's coming and going though so I'm hopeful that it doesn't stick. By singing! I have to go slow to be safe with her, and she is moving at turbo speed these days. She loves singing so I make up songs about everything and it's just enough to get us both through stairs or diaper/clothing changes without her flying out of my arms. Plus, it's more giggles for us both ๐Ÿ˜

Now if the cat would just stay out from under my feet!

Ty' ๐Ÿ˜˜

1 like
Reply

It sounds so much fun, just make the most of it and enjoy ๐Ÿ˜‰ x

1 like
Reply

I pick a medication based on side effects and how effective it has been in studys and of course the input of my doctor. I just started Ocrevus and I feel really good! It is the 5th medication I have been on in 3 1/2 years. I wish you luck in choosing!

9 likes
Reply

Thank you! I'm glad to hear you are doing well on it! I'm leaning towards that one but also considering Tysabri. We want another baby and my MD is supportive. Did they counsel you on if you fell pregnant while on Ocrevus?

8 likes
Reply

No, I'm 48 so I'm past the time of having babies. I don't know how those two drugs compare if you want to become pregnant. I liked being on Tysabri for the most part but my JC virus titer was high so I needed to change DMD's.

8 likes
Reply

It seems every drug I pick has a PML risk! Ty for the info! Do you like Ocrevus as much as you did Tysabri?

7 likes
Reply

I like Ocrevus better than Tysabri. With Tysabri, I was always concerned about PML. I also just didn't feel as good as I do on Ocrevus. Maybe that's just me though.

9 likes
Reply

Thank you so much! I'm glad you feel better on it, it seems like you found your jam ๐Ÿ˜

9 likes
Reply

Hi kdali! Sorry you have a new lesion. Its a challenge to pick a DMT because of all that you have to weigh. And certainly you have some additional considerations with wanting another pregnancy. Hopefully your doctor can help you wade through it.

I was on Tysabri for 5 years while JCV+ and my index kept rising. Once my neuro switched me from the 4 week cadence to an 8 week cadence, the index started dropping. Unfortunately, my neuro wasn't impressed and pushed me to switch to Ocrevus. I felt good on Tysabri and it kept me stable. I would still be on it if it weren't for that pesky PML risk. My experience with Ocrevus is that I'm fine so far but then its only been since Dec. My personal opinion is that Ocrevus has not been out in the wild long enough for the rate of side effects to be fully known. I'm part of a Facebook Ocrevus group and there are lots of people that have had some trouble with some side effects. This is not what the media have led us to believe. And there have been cases of PML on Rituxan, the predecessor drug to Ocrevus. They aren't as numerous as on Tysabri but it also isn't zero cases.

8 likes
Reply

I've been on Rituxan now for several years. It is an off label use for MS. All cases of PML were for on label uses of Rituxan. There has never been any reported cases of MS patients developing PML while on Rituxan and it has been out for 20+ years. Many doctors move their patients to Rituxan from Tysabri when the PML risks run too high. There were several cases where someone moved from Tysabri to Rituxan and developed PML but the dx was that it was while they were on Tysabri. Ocrevus is the best choice in my opinion if you are worried the risk of PML. Now that doesn't mean there aren't other risks.

9 likes
Reply

I know Rituxan has been prescribed off label for MS but the population that has been taking it for this use is significantly less than the MS population overall. When Ocrevus has been out in the wild for a couple of years in a larger population without native cases of PML, then I'll believe that there is little to no risk. In the meantime, I'm going to stay vigilant but that is a personal choice.

9 likes
Reply

I understand. Many doctors are also of the same opinion, as am I. I only differ when there is an inference to Rituxan having reported cases of PML in MS patients. I've researched this fully since I am on Rituxan. Of all reported cases of patients developing PML while on Rituxan, none were dx with MS. Rituxan is considered low risk not no risk of PML for MS patients, even though there have never been any MS patients ever reported having developed PML while on Rituxan. Those stats in my opinion are significant, and in my opinion, makes Ocrevus the safest choice of any on-label DMD for risk of PML. I really don't think we differ. I am only comparing all DMDs of that are administered intravenously.

8 likes
Reply

Thank you so much!! This helps me a lot ๐Ÿ˜˜

8 likes
Reply

For the future baby issue, both drugs seem to be ok if stopped 3 months before conception. I have emailed our fertility specialist for his opinion on the drugs also. *sigh*

I hate this โ˜น๏ธ

10 likes
Reply

this is really a tough question. My thoughts, for my own comfort, would to be off any DMD for 6 months. It depends when you want to get pregnant. I know that any results for Rituxan would take place after a minimum of 1 year of being on it. I would wait till your second child is born to begin any other or new DMD. You just have to make you choice based upon what you feel is right for you. I only expression my opinion for me, but then I would be the first man in history to become pregnant. LOL, it is a difficult decision to make, only you can make it. You have my support for any choice you make.

9 likes
Reply

I don't have the luxury of waiting to start a new drug. I was on a Copaxone before, during and after pregnancy...then we added minocycline. I thought I was good to go! My unmedicated relapse rate is every 8 months, and this started when V turned 8 months old. The want for another child doesn't outweigh the responsibility of being the healthiest for the one we already have...so this stress may be for nothing โ˜น๏ธ

Ya know, the world is very interesting these days, with 32 genders and people choosing their races. I'd not blink if you announced your pregnancy ๐Ÿคฐ ๐Ÿ˜‚

Thank you!!

9 likes
Reply

ROTFLMAO ! I would

8 likes
Reply

Me to.๐Ÿ˜…๐Ÿ˜…๐Ÿ˜…๐Ÿ˜‚

Donnie

3 likes
Reply

32 genders?

7 likes
Reply

Right? Or is it 53 now? I can't keep up with "the kids" and I avoid the news. Hubs and I joke that when V is in her 20's, she's going to identify as a horse.

7 likes
Reply

I'm on Rituxan and no PML here yet that I know of. ๐Ÿ˜Š

9 likes
Reply

Thank you!

3 likes
Reply

kdali Saddened to hear about your larger lesion. I hate this stupid affliction!!! Ocrevus thus far, has been the only DMT I have been able to tolerate due side effects. I'm due for my next infusion June 5th. I have been on it for 12+ months. So far it has been doing it's job for me. Hope and pray you find one that works for you as well. Thoughts and prayers,

Allen

9 likes
Reply

Hey friend, I've been thinking about you! I'm so happy that it's working well for you ๐ŸŽ‰ Thank you, me too!

4 likes
Reply

Oh bless u hun that needs sorting out! We always know our bodies better than docs xxx ๐Ÿค”๐Ÿค”๐Ÿค”๐Ÿค”

9 likes
Reply

Thank you! Funny you say that because MS makes me wonder if I'm just nuts sometimes๐Ÿ˜‚๐Ÿ˜œ...but this pain is exactly where I had Lhermittes 3 years ago. Very odd.

5 likes
Reply

I have lesions on my spine aswell as brain.. ... whoop! ๐Ÿ™„๐Ÿ™„๐Ÿ™„ I'm on Tysabri too have my 5th dose next Friday hope ur ok hun xxxx Im also JCV positive but very low at present. PML is at the back of my mind all the time but I'm watched like a hawk at the centre I go to. They've mentioned Glineyla if I have to change. Ocrevus is not available as far as I know in the UK at present xxx

3 likes
Reply

My brain is spotty also, but that scares me less than the spinal cord ones. I think I read somewhere that the higher number of cord lesions = more disability. I researched my little heart out and decided on Tysabri. Ty for sharing your experience with it! PML is a terrible way to leave this world and I'm sure I'll be wondering about that too. I hope Ocrevus is available by the time you need to change. Or stem cells. Or nano therapy!

3 likes
Reply

Let's hope for a curehun that would be awesome xxx โค

3 likes
Reply

I'm convinced nano can be a cure! Clinical trials start in Italy 2020.

3 likes
Reply

I have a few lesins on my spinal cord. I am on Tysabri, holding my own, but, I want a cure.

Lisa

10 likes
Reply

Thanks Lisa! I'm leaning towards Tysabri. I would like to put my order in for a cure too ๐ŸŽ‰ I hope in 10 years nano therapy will fix us, just have to make it through.

6 likes
Reply

kdali I am so sad to hear about your new lesion. I think we are all with you in the โ€œI hate thisโ€ thought. You need to listen to the info out there and follow your heart. You are a smart woman and will make the best decision. Love to V. She is a doll. Love, Kelly

7 likes
Reply

Thank you Kelly! ๐Ÿ˜˜ I'm so thankful y'all get it and I can come here and be understood. Ty! She keeps me smiling๐Ÿ˜

7 likes
Reply

So sorry to hear this kdali

Are u still thinking about another pregnancy? Maybe that is a factor in de idling on a new med?

5 likes
Reply

Ok read ur responses and see the Ans. To my ? Yes, priority ur health and V

6 likes
Reply

We are not ready yet...but my eggs are getting dusty so we can't wait too long. I did read that Tysabri is given to preggers with aggressive disease and there's no issues with the baby until the last trimester. I'm thinking it's a good match because if we fail IUI one cycle, then we could still have the Tysabri infusion that month.

6 likes
Reply

Sorry to hear this, hope everything works out the best for you! What have you taken so far? I was on copaxone, then recently was switched to Tecfidera due to new lesions. Hoping the side effects settle soon, or I will be looking for something new.

I've heard people do well on tybisari, but the pesky pml risk is higher. I don't know a lot about ocrevous, but I've also heard people doing well on that too. It's so hard to choose and find the one that works best for you.

5 likes
Reply

Thank you! I was on Copaxone until I had a baby 8 months ago, then we added minocycline. Tecfidera is one I'm considering! What side effects are you dealing with?

I have not had the tests yet to see where I stand with the JC virus. It is hard, but I'm so thankful to have options even if it's driving me crazy right now!

3 likes
Reply

I am getting ready to start Tysabri; I understand the risk of PML; but between discussion with my doctor, my family, and God; I feel the benefits outweigh the risks for me. I have 10 spinal cord lesions and can not afford more. Iโ€™ve not been on any other DMT; as Iโ€™ve just recently been diagnosed. The PML risk does frighten me; but I know the Lord knows the number of my days, so Iโ€™m just trying to make each one count.

Prayers for you as you make this decision!!

6 likes
Reply

10, wow ๐Ÿ˜ต I either have 5 or 6 and I'm not excited about that either. I feel like if you choose Tysabri, you can always switch to Ocrevus if you need to? GL to you and thank you!!

5 likes
Reply

Most definitely! We are blessed to have so many options now!!

5 likes
Reply

I knew I didn't want to read this post kdali ๐Ÿ˜ž I so sorry that copaxone isn' working for you anymore. ๐Ÿ˜ญ It makes me nervous about how long it will work for me.

You! Take. Care of You! And your family!

๐Ÿค—๐Ÿ’•๐Ÿ

J๐ŸŒ 

When should we expect a new lol bundle? ๐Ÿ˜€๐Ÿ˜Š and I will call him/her bob ๐Ÿ’•

4 likes
Reply

Girl! I did not want to write it and I was thinking about you! Please don't worry yourself until it's necessary ๐Ÿ˜˜ I hope you are injecting yourself right up until the cure comes.

I just talked to Teva to report my lesion and they said it would not be unusual to go back on Copaxone during the next pregnancy. That makes me feel much better! I planned on getting our baseline labs done at the fertility clinic after our Vegas vacation. I can't believe that time is here already ๐Ÿ˜ต We intended to try after her birthday ๐Ÿ˜๐Ÿ‘ถ๐Ÿ‘ถ Why Bob?! ๐Ÿ˜‚

4 likes
Reply

Always taking the shots.๐Ÿ˜ž No one else in this house will take them for me.๐Ÿ˜ž

I hope everything works out for you! And that you can get back on the copaxone! ๐Ÿ˜‰

On the Wings of Angels *

J๐ŸŒ 

2 likes
Reply

Thank you!

1 like
Reply

Itโ€™s sad to hear if your new lesion. I admire your determination and courage in facing your decisions.

My daughter is in a somewhat similar situation. She is, as yet, undiagnosed with some sort of neurological problem, but itโ€™s earky in the testing phase. She and her hubby want another child, so now sheโ€™s putting that in hold until she knows if there is even a slight chance of a hereditary issue.

My prayers are with you for clarity in choosing your new DMT and about another baby. Hug sweet V for me.

4 likes
Reply

Thank you so much! Aww, I'm sorry to hear that about your daughter. It's rough on the whole family. Has she been to a genetic counselor? Hard to make a decision when you don't know what's wrong with you. I feel for her ๐Ÿ’”

Will do! If I can catch her ๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚ She's quite the explorer these days.

3 likes
Reply

Her neurologist feels he can rule out MS, but has referred her to neuromuscular specialist. Theyโ€™re thinking Charcot Marie Tooth, but itโ€™s early. The genetic tests would cost $12000, not covered by insurance. Theyโ€™re waiting on baby until they have answers. I know sheโ€™s worried about being selfish having a baby if there is chance of passing this on. We never get guarantees, but itโ€™s harder to make the decision if there is a good chance of passing on something.,

3 likes
Reply

Wow, that's crazy! How's does anyone get diagnosed with that kind of price tag ๐Ÿ˜ต

2 likes
Reply

That is crazy. Sheโ€™ll probably have to have a nerve biopsy. ๐Ÿ˜ข

2 likes
Reply

I am so sorry to hear about the new lesion! When I finally got a good neurologist, I was switch to tysabri because most of my lesions are in my spine and she said that was the only one drug that really works for spinal lesions. Iโ€™m fortunate enough to be JCV negative. I am not sure how Ocrevus would work, but thatโ€™s where I would head next if the tysabri quits or I become positive. Best of luck to you! Iโ€™m praying for you ๐Ÿ™

5 likes
Reply

Thank you! REALLY?! You've just made my day ๐ŸŽ‰ ๐Ÿ˜˜

4 likes
Reply

kdali I do not envy you the decisions you need to make. I don't know much about the meds you are considering , and I have my 2 boys I love dearly. I just want you know you and V. are loved by a lot of us and we will wish you well. If you have Drs. you like and whose opinion you value, they will help guide you to the best of their ability, and as you well know this disease we share affects everyone differently, so make an educated choice and be willing to accept whatever happens.

3 likes
Reply

Thank you!! ๐Ÿ˜˜ You guys mean the world to me!

2 likes
Reply

Sorry to hear you have a new lesion. I had 6 on brain and 1 spinal in August. But since Plegridy has had time to take effect have had no more. Neurosaid it takes around 4 months for full effect. I had the full trifecta of MRIs in Jan and all clear.

Praying you find something that works that well for you. Hug that little gal for me.

Donnie

2 likes
Reply

I'm glad it's only one, but that makes 12, 6 brain and 6 spinal. Or it's the same spinal one active again, I can't tell ๐Ÿคทโ€โ™€๏ธ and I'm not sweating it. I'm a little surprised after 4 weeks and 2 rounds of steroids that it's still active ๐Ÿ˜ต

I'm glad your scans were stable! It's such a great feeling to hear that and feel confident about your treatment plan ๐Ÿ˜ Thank you! Will do, once I catch the little stinker ๐Ÿ˜‚ ๐Ÿค— ๐Ÿ‘ถ ๐Ÿค—

2 likes
Reply

Wow that is strange after all those steroids for sure. After my second round Iโ€™ve done pretty good only took 4 months but it finally came thru.

Yeah I canโ€™t keep up with where they are anymore theyโ€™re just there. Iโ€™m just surprised how symptoms can continue to get worse when theyโ€™re All supposedly inactive now. But nothing about this disease surprises me anymore.

Praying you find a treatment that works for you soon.

Donnie

2 likes
Reply

Right?! Stubborn little lesion!

Exactly! Do lesions age?! Is this just how it goes and you get a new normal every few years (or less in my case) I guess the relapse silver lining is secondary isn't getting me yet ๐ŸŽ‰ I have a fun time lapse video I've posted a few times I'll try to find for you.

๐Ÿ˜‚๐Ÿคทโ€โ™€๏ธ Anything goes with this mess!

Thank you Donnie! I'll have my blood test next week for JC virus antibodies and hopefully be on to an infusion clinic soon.

2 likes
Reply

You said it. Anything goes with this mess.๐Ÿ˜‚๐Ÿ˜‚

Seems like a new normal every month or two. Sometimes seems to change daily sometimes.๐Ÿ˜…๐Ÿ˜‚๐Ÿคฃ

Iโ€™ve learned in the last year to never look for the same thing 2 days in a row.๐Ÿ˜…๐Ÿ˜…

Donnie

2 likes
Reply

Wow. Sorry for the bad news. I was on copaxone for 10 years, then gilenya, and I chose ocrevus over tysabri, mainly because of the lower risk and the convenience of 6 months over monthly. My research showed tysabri to be slightly more effective.

3 likes
Reply

Thank you! ๐Ÿ˜˜ 10 is awesome! ๐ŸŽ‰ The 6 months thing is very appealing. Have you started yet? I can't remember, it seems like someone here is starting O every month. My main worry with it is I will be sick all the time because my husband works with sick kids ๐Ÿ˜ต๐Ÿ˜ท and we travel too much โœˆ๏ธ

2 likes
Reply

I've been in o since January, and haven't been sick at all. When I asked about infections, the Dr said that if you have a tendency to get colds etc before O, then you'll get them after.

2 likes
Reply

Awesome! Ok, good to know, I do get colds.

1 like
Reply

You may also like...