Overwhelmed

[Becs81]

I was diagnosed in October 2016 and put on Betaseron. I had a confirmed relapse in February that lasted about 3 weeks. I did not do the steroids because I had just had them in October (I was diagnosed in the middle of a bad relapse) and I hate the way the steroids make me feel. I am now in the midst of another relapse that started just a couple of days ago.

I have an appointment for an MRI next week (6 months from my original MRI) and an appointment to see my MS specialist right after the MRI. He is just doing an MRI of my spine. I do not have lesions on my brain, just on my spine. Should I ask for him to do my brain as well with these recent relapses?

Is it normal to have this many relapses while on a dmd? Have I not been on it long enough? I am sure my MRI will give more info as to whether or not Beta has been effective. I know it sure doesn't feel that way!

I have been reading about the other dmd's out there in case my Dr wants to change, but they all seem so scary!

Sorry for all the questions! I am just trying to figure things out.

[walkerhe09]

My Experience in a similar situation

I had a bad reaction to steroids during one of my relapses and refuse to take steroids again. It is a personal choice but I would just rather let my body recover at its pace then go through the steroid withdrawal again. I was on Copaxone for 6 years when it stopped working. I had a couple episodes while I was deciding whether or not to switch medicine. I eventually switched to Tysabri - I put it off as long as I could and was very anxious about switching but I did and so far it has not been any issue 5 infusions into it. It turns out I was more anxious than I needed to be but hindsight is 20/20 right.

Each person is different - above is just my experience. Also, I have no brain lesions just spine so they rarely do a MRI of my brain - again just my experience with the course of care I receive.

[Carolinemf]

Hi Bec,
I have had MS for over 30 yrs and was on Betaseron for about 4 years in my 30's. I eventually quit it because it was making me feel worse than my ms. Others seem to tolerate it ok but that was my experience.
I still had some relapses on it but then no dmd can stop them, just slow them down.
Like many others that have been travelling the ms road for an long time ,i know that there are times when i had attach after attach , but there were other times that i went for long periods where i plateaued and had few symptoms.
Stress can bring on or exacerbate attaches and if you have only recently been diagnosed and started a DMD etc etc this could be making things worse stress and attach wise.

I only had steroids twice and 'never again' too ill!!
If the recent relapses are similar to the earlier ones it should mean that the lesions are in a similar spot. So this is what i would use to gauge whether or not to ask for a brain Mri as well.

Please don't be too scared if the possibility of changing dmd's comes up . With something like Tysabri - yes it can have serious side effects but it has been around for quite a while now and measures have been established to make it as safe as possible. Most of the worst effects occurred when it was new out. I have now been on it for almost 5 years and tolerate it better than Betaseron- but again we are all different.

Hope this helps,
All the best,
Caroline.

[ru4cats]

There are so many DMD's that are at least twice as effective as Betaseron. I refused it when I was diagnosed in 2010 for that very reason. I posted a webcast in the Ocrevus forum by Dr. Vollmer. It is excellent and not even two weeks old. He goes through ALL the current therapies, and it would be well worth a listen. I highly recommend it.

[pennstater]

Becs81

I can understand your anxiousness. If you have had relapses that close together, I would definitely have a conversation about DMT efficacy for slowing disability. Betaseron is one of the early meds, and it's efficacy, while similar to other early meds, is lower than the newer meds.

The risks are a trade-off and each of us have our own risk tolerance, which may change over time as we travel thru various points in life and our disease course. You may make the decision to stay on Betaseron, but just make sure it is an informed choice.

I was on Avonex, then Rebif, and finally Tysabri due to continued relapse and progression. It's not uncommon for change, especially now with so many options. A lot of neuros will push for more aggressive treatment trying to prevent relapses, which hopefully leads to minimal progression.

I have always had both the brain and c-spine MRIs. Does your neuro think not needed due to the symptoms of your relapse? I would want to understand and push for the brain MRI as well.

It's a lot to deal with when not feeling well, but also when your diagnosis is still pretty new. Being overwhelmed is normal. You can ask all the questions here. Do you have anyone you can go thru pros/cons with you and maybe come to your doctor's appt as a second set of ears? I did that in the beginning, ad I always felt overwhelmed by info there. So my sister or a friend came and just took notes for me.

I hope you feel better soon. Let us know how you are doing.

[Becs81]

Thank you all so much for your information and encouragement!!

ru4cats I will definitely watch that video! Thank you for suggesting that. I have been reading about the all the dmd's on the National MS website... but of course I see all the scary side effects as well!


pennstater I think my doctor isn't doing the brain MRI because my relapse is affecting me the same as my last two. Also my last MRI which was of my brain and spine was just 6 months ago and at that time I had zero brain lesions. If I continue to relapse frequently (lets pray not) then next time I will definitely discuss with him my concern about doing both my brain and my spine.

My husband always goes with me to my appointments. So he helps with all the information, and I try to write down the important stuff. I don't have problems remembering, but I want to be sure I have it all to read back over later.

I know stress can bring on a relapse, but can physical exhaustion? I had an extremely crazy several days. I was super busy and got very little sleep. I pushed myself really past the point of exhaustion, then bam... relapse. I don't think it is a coincidence but I was curious if anyone else has had the same thing happen.

[ru4cats]

Here's the link to the Vollmer video in case you can't find it. I was one my iPad when I typed my response, and only know enough about the iPad to browse the Internet.

https://www.youtube.com/watch?v=J4prsO-FDzs

I learned early on that physical exhaustion really allowed my MS symptoms to overwhelm my ability to do anything else. I wasn't haven't a relapse, but I certainly wasn't functioning. I now make sure I get a good night's sleep (8-9 hours) just to make it through the next day. We even had to quarantine one of our cats to the downstair's bedroom, just so he wouldn't disturb my sleep.

FYI, all the lesions causing me problems are on my spine. My brain lesions have remained stable with no new ones, but I continue to progress (in a negative way) because of my spine lesions.

[Becs81]

Update

I had my MRI and my visit with the neuro yesterday and just thought I would give an update.

My neuro said my MRI was better than last time but there was still a lot of activity? I am still in the middle of the flare with significant weakness on the right side but I still do not want to do the steroids. We are going to switch my meds from betaseron to Gilenya. I go the end of the month for my first dose. Fingers crossed!

[pennstater]

I do hope you feel better soon. By activity, did he mean you still had lesions that lit up with the contrast dye? Or was he just noting number of lesions?

I hope the switch to Gilenya works well for you. Lots of luck to you.

[Becs81]

My number of lesions I think was unchanged his words were "there are lots of spinal lesions but I don't see any new lesions. The MRI looks better than last time but there is still a lot of inflammation". Last time he told me I lit up like a Christmas tree but he didn't say whether the relapse was evident this time or not on the MRI.

Thank you, I am nervous about starting a new therapy and am praying for the best!

[Thinkimjob]

My number of lesions I think was unchanged his words were "there are lots of spinal lesions but I don't see any new lesions. The MRI looks better than last time but there is still a lot of inflammation". Last time he told me I lit up like a Christmas tree but he didn't say whether the relapse was evident this time or not on the MRI.

Thank you, I am nervous about starting a new therapy and am praying for the best!

Becs81, as an old-timer (20 years of this), I suggest go in and go hard.
The whole MS thing is a nightmare. You want it to be okay; odds are it won't be.

Think of it like cancer. Get the strongest, best drugs you can, as soon as you can.

And yes it is awful - Tysabri PML, Gilenya no pregnancy etc. The alternative is 15 good-ish years, and then maybe no more walking, no more working,

[pennstater]

Also in camp of hit it as hard as you can. That being said, we all have our own risk tolerances, that can change as we age. The tough part is that the research all shows the earlier treated, the better. So in making decisions, we have to try to put ourselves in the future and think about what we would regret more in our decision making.

In my 12th year following diagnosis, with additional 13 years of MS suspected. Since long time between initial and second relapse, favorable prognosis, so on Avonex to start. When started to progress, Rebif. I wish I would have had the courage to try Tysabri then, but waited years to switch. I wonder now if I had, would I still be working? It did stop relapses, but the damage remains.

I do wish you the best of luck on your new meds.

[palmtree]

I'm with the camp 'hit it as hard as you can'!!! The ABC drugs don't work for a lot of us and it's not worth letting the damage happen. Once it's done it's PERMANENT. Lighting up like a Christmas tree may seem treatable with steroids. But steroids only shorten the relapse time. As you must know the outcome is the same. Your call.

I went for Tysabri when I found out Avonex wasn't doing it's job. Now with the option of Ocrevus, you have an even more effective drug without the risk of PML or the side effects of the other one. If you don't like Gilenya i would go straight for the Ocrevus. Once you watch the video I think you will be excited.

Best of luck!

[Becs81]

Thank you all so much for your support and information!! It really helps hearing from you all who have been on this journey much longer and have the wisdom that comes from experience!!!