I'm miserable and have been in an active phase for a month. I was diagnosed 2 weeks ago and have tried 5 days of IV 1000mg Solu-medrol and am currently on Gabapentin (3 pills a day) with no relief. My questions are how long do active phases usually last ? What treatments have worked for you to get out of it?
Friday they are talking about administering Tysebri but doesn't that keep it from relapsing? Will it help with the current symptoms too?
I am having zapping pain on my tongue, in my mouth, fingers, arm. Numbness on entire left side from head to toe, walk like I'm drunk, loss of hearing in left ear, & extreme vertigo that keeps me in bed for days. The eye pain and headache has subsided.
Any feedback or suggestions are welcome.
Thank you!
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Frazzled03
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I can't give you good answers to anything. Exacerbations last as long as they last, although the Solu-Medrol should help reduce the long-term damage and shorten the length of time you're dealing with everything. The Gabapentin is to help with some of what you're feeling right now. The Tysaberi is a Disease Modifying Treatment (DMT) to help prevent future attacks.
The last time I had a bad spell, even with the IV steroids, it lasted about 3 months. All I can suggest is to treat your symptoms as best you can until they go away. Get plenty of rest and don't push yourself.
Hi Frazzled03 🙂 & welcome to this forum ❤️. I don’t have an answer to how long exacerbations last? But you are on the only medication used for exasperations, i know of. As for tysabri, I would highly recommend it, having been prescribed that for 7yrs.I’d still be taking it, if I hadn’t come up positive for the virus ☹️.
I agree with with Noras Mon about exacerbations. I was on tysabri for 6yrs I loved it until I tested pos for the jcv virus.I hope it works for you like it did for me.
Hi Frazzled03, and welcome to the group. Unfortunately, an M.S. flare up can be a stubborn thing. It can disappear in a few days or take months. There is no way to predict it. You are taking the "typical" go-to treatment for an exacerbation, the 5 days of Solu-Medrol. I can tell you from experience that sometimes it works wonders very quickly, and sometimes, while you may see symptoms get less severe, they may linger for a while. Over the years, I have done the 5 day Solu-Medrol treatment four or five times for flare-ups. I know it is terribly frustrating, especially if you are newly diagnosed, to have no concrete answers.
Please reach out and let us know how you are doing and feel free to ask any questions you may have. I hope you start to see some relief soon. 😊
Hi Frazzled03, hope you are seeing some improvements. I don't have experience with Acthar, an alternative treatment for acute exacerbations, but I have heard good things about it. I have been on Kesimpta, but due to side effects, I stopped after six months. Many on Kesimpta tolerate it very well and it is a good choice.
I can tell you that whichever DMT you try, it will be a bit of trial and error. Each of us reacts very differently to these drugs. Some will work great for some people, while others on the same drug may have intolerable side effects. You may need to try a few before finding the one that fits you best. Or you may get lucky and do very well on the first therapy you try.
Please keep in mind that none of the DMTs are effective for symptoms of flare ups. They are designed to slow progression of disease activity and reduce the number of exacerbations you have. If you haven't checked it out, the MSAA website has a great section on the different DMTs with lots of information about how they work. Here's the link:
Welcome, Frazzled03! Everyone is different, but I missed about 8 weeks of work, then slooowly started feeling better. There was a lot of 'ugly crying' at first. That grieving process was nightmare-ish. I am sending a link for the newly diagnosed. Dr. Boster taught me so much in the early months. I hope you feel better soon. 🙏youtu.be/ERrccVrtFGk?si=tA4...
Welcome to the group! I’m so sorry you’re going through this. My symptoms took a few months to resolve completely, even after IV steroids and starting a DMT (MS treatment). I slowly got better. Unfortunately, everyone is different with MS, so it’s hard to say how long this will last for you. Hoping and praying you’re better soon!
I’ve been taking Rituximab for the last few years. Prior to that I was on ofatumamab (same as kesimpta, but IV form). I had to switch back to Rituximab because they stopped making IV ofatumumab . Both medications are similar. I have reactions to the infusions so my dr said it’s too unsafe to self inject with kesimpta. I get an infusion once a year and it has been working very well for me.
I’m so sorry you are having a difficult time. Ask your MS specialist if he or she thinks Tegretol (carbamazepine) might help the zapping pain. It can be very effective.
My heart ♥️ is with you as you experience this moment. Try to journal on symptoms and medications as they need to perhaps change. Get specialist advice and understand we need to be open and aware of of where you are today.
I meditate and let music help me to listen in pain, what new can help? Find new resources in area.
Hi! I am so sorry you are going through that. MS is a Monster that we try to hold where it is but do not have a way to defeat it. I was diagnosed in 2018. I sadly do not have answers but I can tell you some things I have figured out for myself so far. Ice packs on my back help sometimes, sometimes it's a heating pad to relax the muscles, but I have to be careful because heat can also make things worse for the day. Cryofreeze hemp roll on has been a godsend. Tens unit and messaging gun is a necessity. I def couldn't do it without help. I recently started having the face zaps, was diagnosed with trigeminal neuralgia. At first they gave me carbamazepine for that but I had bad side effects so they changed me to gabapentin, which I am now up to 3x a day. If yours is trigeminal neuralgia i would suggest stopping OJ, bananas, and as little caffeine as possible because they aggravate it. My DMT is Tysabri, have been on it for 5 years now. When I get my infusion I can feel a small difference about half way through the infusion. After all this I can tell you everyone is different, it's part of why we have trouble fighting back. You will have to learn what works for you and the only way is through trial and error. I do suggest a few things. If you smoke stop smoking. Make water your drink of choice. Get enough fiber. Less sugar in your diet the better. Knowing where your lesions are might help, it helped me but I also have researched A LOT. I hope these words help you, I am sorry I can not be of more help for you. I hope you find some relief soon.
So helpful! Thank you. I tried Gabapentin and it made me nauseous and the zaps a little fuzzer of that makes sense so I stopped it. Wasnt worth it. They are making noise about Acthar and Keysimta now. Waiting on insurance approvals. I appreciate any other feedback you have! Have a nice day.
I wish we all had a magic wand to make you better. But as everyone has said, you are receiving the best course of treatment. And I had a great experience with Tysabri for about 7 years until I became positive for the JC virus. I really believe that medicine is why I can do everything I do today that I never dreamed I would do again. Ride a bike, go hiking, etc. I still have some zaps like you described, but I can tell you that your neurologist should definitely be able to help you with that. Let us know how you are doing! ❤️🥰
That is a lot, you must be frightened. Lots of great advice here. When I was newly diagnosed and frightened I started doing progressive relaxation and even creative visualization. They relaxed my body and calmed my mind, at least for a while. It sounds like you are in good hands. I really feel for you. 🤗
Hello, Frazzled03. I'm so very sorry to hear the awful things that you're going through. It really isn't fair that an MS beginner seemingly got an advanced level relapse! ☹️ I really feel for you. Your doctor sounds like they are approaching this in an appropriately aggressive manner, which is not always the case. In MS, certain cells in your blood mistakenly attack your brain and spinal cord. Both Solu Medrol infusions and Tysabri slam the blood/brain barrier shut, so those cells can no longer attack you, which is helpful to know. Unfortunately, it takes a while - too long - to heal, as others have mentioned. I urge you to watch the Aaron Boster video that MollyAbigail posted, and check out his other videos on YouTube, if you can. I know vertigo can make it hard to look at screens. One of the most important things that Dr. Boster teaches is to advocate for yourself by letting your doctor know which symptoms are most bothersome. A big part of treating MS is managing symptoms, so that's a big part of their job. If they give you a medication and it doesn't work, let them know, because there may be something else that would.
Finding ways to pass the time and keep your mind occupied will help you. Prayer, if you're so inclined, calling a friend, or maybe listening to audio books might be helpful. This will pass, and hopefully the Tysabri will keep you from having many more in the future. I wish you the best, and I hope that you'll keep us posted on how you're doing! ❤️
All good ideas. I will check him out on YouTube! They are talking about trying Acthar and keysimpta now. I wonder if it works the same at Tysabri?. Hoping insurance finally approves something.
That sounds like a good plan, not that I'm an expert. Not many people I know have had the Acthar gel, but I know it's supposed to be helpful for people who don't respond well enough to, or can't have, steroids. The mode of action of Kesimpta is a little different, but it's still a powerful drug that says your doctor is being appropriately aggressive, in my opinion. 😊 It works by destroying B cells, which are the watch dog cells that signal T cells to attack your central nervous system. It's considered a high-efficacy drug. And Dr. Boster has videos about meds, too! 😁 Post any specific questions you may have, and there are many, many people here who will be happy share their experiences with you!
for me getting on a dmt was life changing! Symptoms didn’t go away completely but quickly subsided tremendously. This was my experience years ago. Obviously it is not a prediction of what you may experience. Good luck! Sorry about your diagnosis. MS is NO FUN and can be challenging but it can be lived with
I’m sorry that you are having such a rough start, this has to be terrifying. My longest exasperation was a month and had 2 rounds of steroids, the other three I’ve had have only been about a week with five days of steroids each time
The advice you have been given here is excellent but the hard truth is that we are all affected differently so like has been stated, you have to find out what works for you. Please do make it a priority to watch Dr Boster’s videos, there’s so much information there. You will be encouraged and realize this disease can be lived with. Keep us in the loop and I’ll add you to my prayer list. 🙏🤗
Welcome to the forum, Frazzled03 . There has been a lot of suggestions and positive feedback by many of the current members. I would like to add that there is a plethora of ‘ms’ information on mymsaa.org that you can access. I look forward to hearing more from you. I pray that you feel better soon! 🙏
My dear friend, I am so sorry you are experiencing so much discomfort. When newly diagnosed, typically (maybe not everyone) but in most cases your very first “exacerbation “Flare” is the worse one. This is mainly because we have been unaware of the disease, symptoms and have a reached a nasty peek. Once you get on a steady regimen of medication(s) and allow them to work you will start to feel/see a difference. It’s hard to say, what works best because every MS journey is different individually. You and your doctor are going to have to partner together on this journey and note what works, what doesn’t and how effective for you. I have migraines that feel like someone is stabbing me with a “knitting needle “ when they’re bad! I take Nurtec (3) times per week and they have subsided. Copaxone is my MS medicine and I have been stable. One of the reasons I haven’t switched to something else because I only have bad episodes now 2 - 3 years intervals. I’m a older Sister and science shows in some cases as we get older; the M monster doesn’t gear it’s ugly head as often. I will be praying for you and hope that you get relief and comfort very soon. Please be encouraged even as hard as it may seem, the beginning is the hardest, I know. Please keep me updated my friend. 🙏❤️ Blessings and Caring Thoughts NeeC
i'm really sorry you are going through all of this. i hate new symptoms. in the past, i would get scared, followed by a deep depression then anger...of course that was for one new symptom. you seem to be having a monster of a relapse. i don't have answers for how long it will last or why the iv steroids didn't seem to work.
i'll just say this. those past emotional episodes used to end with me planning suicide...until i found this site. it seems like a small thing, but just coming here with people who understand what i'm going through, who really GET it, it helps me so much. not only do my mood swing bouts last a much shorter time, but i usually stop briefly at anger without the suicidal ideation.
i hope your doctor is listening and working with you, but in the meantime, please keep sharing. it really does help.
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