New medication

[Tulip77]

Aubagio is killing my joints and vision. I’m going to request the wash out stuff tomorrow. I can’t take ocrevas due to cancer risk. I’m thinking of asking about kisempta. Thoughts?

[starlight5]

Sorry you are having such a bad response to aubagio. Hope you feel better quickly with the washout.

[Violonchelo in reply to starlight5]

Is better kisempta? I have Rebif

[Amore55 in reply to Violonchelo]

Hello! It is best to talk to your doctor about what is best for you! Only you two can decide. Stay well.

[Violonchelo in reply to Amore55]

Thanks . The best for you also !!!

[Sandydemop]

Does aubagio really cause joint and vision issues

[Tulip77 in reply to Sandydemop]

Joint pain is on the list. In the Aubagio Facebook group that I am in, there is a lot mentioned about the joint pain and some of the vision. I’m not 100% that it is causing the vision, but eye dr did a thorough check and there is no inflammation of my optic nerves. 🤷🏻‍♀️

[Sandydemop in reply to Tulip77]

good to know. I have an appt. Weds with my neuro. I assumed it was a lesion/inflammation because she scheduled me for a new MRI. FYI i asked about switching to a stronger drug and she said covid is not the time to lower my immune system with those chemo-type drugs.

[Sandydemop in reply to Tulip77]

Does anybody in that group have double vision (like me?) I never considered it could be caused by aubagio

[cindyrn68 in reply to Sandydemop]

Every single day since my last relapse. Some days worse than others - especially if I get hot. I'm on Tecfidera x 3 years.

[Sandydemop in reply to cindyrn68]

Tecfidera with double vision?

[cindyrn68 in reply to Sandydemop]

I had the double vision before starting Tecfidera.

[Amore55 in reply to Sandydemop]

I get double vision if my eyes are too tired or if I become over heated.

[Sandydemop in reply to Amore55]

Same

[bxrmom in reply to Amore55]

Same here. If I'm overtired, my vision starts to get blurry.

[Tulip77 in reply to Sandydemop]

I have seen it mentioned

[Sandydemop in reply to Tulip77]

Did you see a neuro Opthamologist?

[Tulip77 in reply to Sandydemop]

I did see an ophthalmologist last week when my vision suddenly went blurry and cloudy. I am fortunate that he is downstairs in the building that I work in. All was fine, it it’s still pretty cloudy.

[Sandydemop in reply to Tulip77]

I would recommend a neuro-ophthalmologist. Double board certified in neurology and ophthalmology.

[Sandydemop in reply to Tulip77]

what are you doing for the blurry/cloudy vision?

[Tulip77 in reply to Sandydemop]

I’m not “doing” anything about it since I don’t truly know the cause. I just had all new scans in March and they were ok, so I don’t know. I am hoping that once I complete the wash out my vision might get better. If not then I’ll have to go see about new glasses. I just got new glasses/lenses a little over a year ago.

[Sandydemop in reply to Tulip77]

ugh. I know how much glasses cost! can you see a neuro-opthalmologist?

[Tulip77 in reply to Sandydemop]

No. A regular ophthalmologist but he has many MS patients, I was there for several hours doing all kinds of tests and then he spent awhile blinding me with the light and mirror 😳

[Sandydemop in reply to Tulip77]

ugh. my eyes are also very sensitive to light. I read that is common with MS. I am worse at the eye dr. than most people are at the dentist. Anyway maybe there is a neuro-ophthalmologist you can see. I had several covered under my plan and I really felt good about seeing him.

[CV97]

I just switched from Aubagio to Kesimpta. This weekend was my 3rd loading dose. Looking forward to monthly shots!

[Sandydemop in reply to CV97]

Please share with us how it goes. CV97 what made you switch?

[CV97 in reply to Sandydemop]

General dissatisfaction with Aubagio. I felt like I couldn't say if it was helping much. Neuro said MRIs still looked fine, besides 1 small new lesion. I have noticed a marked increase in balance issues, walking problems. These are relatively small changes, but very noticeable to me since I live with them every day. So, I decided to switch. He had previously suggested Ocrevus, but I refused due to the infusions. Kesimpta opens the door to a similar medication without the infusions.

I have already noticed some unexpected changes. Lower back pain has decreased, numbness in feet is slightly better. Those 2 I believe are due to stopping Aubagio. Bladder also improved a tiny bit during washout period, but even more the past few weeks since starting Kesimpta. Sleep has also improved, but that could be linked to less back pain/fewer night time bathroom breaks.

If Kesimpta can help prevent progression AND reduce a few symptoms, I'm all for it. It has been a relatively easy switch, other than some flu-like symptoms after taking the shot.

[Sandydemop in reply to CV97]

Because i have been having symptoms such as significantly more difficulty walking and double vision my neuro put me on IV steroids for 3 days and then a 10 day oral taper. then I had to wait until it was out of my system before i could get vaccinated. A friend also has to wait to get on kesimpta until after her second vax. What did you do about vaccination?

[CV97 in reply to Sandydemop]

I was offered first vaccine dose through work in late January and received 2nd dose in early March, while working through the pre-bloodwork. By the time bloodwork was done, dr approval, insurance approval, etc, etc., I started Kesimpta about 6 weeks after 2nd shot so there was no conflict for me.

[Sandydemop in reply to CV97]

Good to hear. Please lmk how the kesimpta goes for you.

[Violonchelo in reply to CV97]

Kesimpta Is better than Aubagio?

[Amore55 in reply to Violonchelo]

Only your doctor can help you make that decision.

[Violonchelo in reply to Amore55]

Yes, and I think that a doctor is a group of doctors. They Will think the better !!! I think. At the moment Rebif is good since 2018 till 2021. So if It is works , I live .

And if in the future Will be a tratament for all of us, It will be wonderful!

[TDonahue58 in reply to CV97]

Have you looked into Ampyra for your walking.I’m very happy with the progress I’ve made with my walking, especially in the morning.

#MSSucks

[CV97 in reply to TDonahue58]

I have not looked into any other meds for walking, etc. I did try gabapentin for the tingling in legs/feet once, but hated the way it made my head feel. I'll put Ampyra on the list to research & discuss with Dr. Thanks!

[TDonahue58 in reply to CV97]

Exercise and light weight training has improved my overall stability with MS

[sashaming1 in reply to CV97]

What is that "Walking" help med? Ampyra?

[Tulip77 in reply to CV97]

How are the shots? I was originally on Copaxone and did shots for a while. Copaxone burned like fire going in and I was afraid of the autoinject. It was almost violent to me, so I manually injected.

[Tulip77 in reply to CV97]

And... how was the wash out? I am worried about GI issues while at work with the wash out. My plan is to not start it till Friday so I can be home over the weekend to assess how it will be.

[CV97 in reply to Tulip77]

The shots are easy peasy! They last about 15 seconds & I feel a slight sting upon injection. I did learn with this last shot to keep a firm grip -- the 2nd "click" that says it's almost done nearly popped it out of my hand because I had loosened my grip once it was started!

I have not had any swelling or bruising, maybe a tiny red spot smaller than a dime. It did cause some nausea the first 24 hours or so with the first shot. Some say benadryl may help, but I did not take any. I did take it in the evening on a Friday night so I had all weekend to adjust before going to work again.

The washout.... I started in the evening on Easter. I suggest choosing gentle foods the day you start. Heavy food were not a great choice for day 1. Day 2 and beyond were fine. The washout med is a NASTY drink. I found it was best to mix it ahead of time and keep it in the fridge.

[Tulip77 in reply to CV97]

Thank you sooooo much for this information. It’s hard to find some of these experiences online.

[Neworleanslady]

I hated aubagio when i was on it for 5 months. I was offered ocrevus or kesimpta and i picked ocrevus because my dr had been encouraging that for a while. I’d heard both of those meds were very similar. I liked the clean out med because it made me feel cleaned out!

[Violonchelo in reply to Neworleanslady]

Kisempta is the better?

[CV97 in reply to Neworleanslady]

I liked the last few days of washout. I felt like I had a bit of a baseline before starting Kesimpta. That's why I feel comfortable saying the Aubagio might have been a factor in the back pain and tingling in feet, because those had a noticeable improvement by the end of washout. I really had no other issues with Aubagio, or at least none I was aware of while taking it.

"Numbness or tingling in your hands or feet that is different from your MS symptoms" is a listed side effect of Aubagio. I wish I knew how exactly they expect someone to know if it is "different from your MS symptoms" or just progression of MS symptoms.

I had brought up the sensory issue with my feet to neuro, but it was considered just another MS symptom. My feet are still numb/tingling, but slightly less so. How do I know? I notice a lot more of the dog biscuit crumbs that the dog has left on the floor when I step on them! 😂😂

[Violonchelo]

Kesimpta Is better than Aubagio?

[CV97 in reply to Violonchelo]

Kesimpta was trialed against Aubagio. mymsaa.org/news/fda-approve...

Is it better? The trials say yes, but it also works differently than Aubagio inside the body. Aubagio doesn't have a PML risk, but Kesimpta does.

It was worth talking with my neuro to see if it was a good fit for me. It did take about 4 months from first conversation to actually starting Kesimpta. Since it was a new med, the neuro was very thorough in making sure it was safe for me to take since I am JCV+. I do have to keep the possibility of PML in the back of my mind, but only time will tell if that becomes an issue.

**I was on Aubagio about 2.5 years and may not have switched if Kesimpta hadn't been released. I did like the convenience of a once-a-day pill and the neurologist said that Aubagio was preventing progression based on MRIs.

[Violonchelo in reply to CV97]

Thanks , and the best for you also !!!

[Violonchelo in reply to CV97]

Thanks 🙏

[goatgal in reply to Violonchelo]

Others aren't ignoring you but no one will tell you which treatment is better. You need to look at all the choices. Evaluate the risk for you, and choose what you think is better.

[CV97 in reply to goatgal]

Violonchelo I would add to research the different meds and go to your Dr with a list of questions to ask so you can find the right fit for you.

The "best" medication might not be the best choice, because every situation is different!

[Violonchelo in reply to CV97]

Thanks, you are right!!!

[Violonchelo in reply to goatgal]

I do a normal live . I walk , sport , read , writte, help others , bicicleta, swing ,.. And the MR is ok, as in 2018, without new lesions. At the moment . But I would as the others to have a pill at day or at week or month only . I am pacient because I like writting , and the word And other word that I writte , are as the time , the seonds, the hours . I do with my time all what I can , as anybody. I am pacient with my tratament . I hope but I live , and It is more important .

[Violonchelo in reply to goatgal]

Thanks . You are really polite !!!!🙏

[TDonahue58]

It’s good that you’re staying on top of your meds.I’m noticing some redness on a couple of digits on my left hand. It appears to not getting any worse tho. You’re staying well hydrated? I drink quite a bit with my Aubagio.

[Tulip77 in reply to TDonahue58]

I do stay pretty well hydrated most of the time. I predominantly drink water all day. I am frustrated about my hands and toes. I am a paralegal and type all day so it’s not something that I live with. The vision thing came on rather suddenly last week.

[Sandydemop in reply to Tulip77]

I hope you get well soon

[Sandydemop in reply to Tulip77]

Glad you are still working. Are you able to work from home?

[Tulip77 in reply to Sandydemop]

I can work from home in an emergency but not full time. I feel like there is no choice as to whether or not I work. I am a single income family. I don’t think I would qualify for SSDI yet. In terms of mobility, I am good. I feel unsteady if I move to fast and I drop a lot of things, but really I am ok there. My main problems are cognitive and the fatigue.

[Sandydemop in reply to Tulip77]

Hi Tulip77 I understand. I don't qualify for SSD either and i really enjoy working. Don't know what i would do with my time if i didn't have work. I hope you are staying well and safe. what have you done to address the fatigue?

[TDonahue58]

To re enforce Neuro Plasticity, I use both a Kenko Pad (kind of like stepping on plastic golf spikes) for both my feet and back. I also have a Needle Ball that I use on my hands to work on both waking up my nerves and improving my dexterity. Your Brain can be rewired around the paths that are damaged by MS. Stay STRONG!

[Tulip77 in reply to TDonahue58]

I will check this out! Thank you 😊

[Tulip77 in reply to TDonahue58]

Is this what you are talking about?

.

[TDonahue58 in reply to Tulip77]

Yes

[Goldilockssearching]

Tulip77 I have one of these sets also. Helps loosen muscles/spacicity I should use it more than I do. 17 yr old will borrow it after his workouts. He finds it helps too!

[Tulip77 in reply to Goldilockssearching]

I will get one!

[Violonchelo]

Interesting ! Thanks