Hi. I was diagnosed with MS in 2011. I can get around but suffer with leg pain and have balance issues. I work full time but it is getting harder and harder to go so. Doctor started me on Rebif but had to switch to Copaxone due to liver enzymes escalating. I have been using Copaxone since 2012 with very little side effects but my Doctor feels my MS might be progressing so she switched me to Abaigio. I was on it for 10 days but the side effects were very strong, brain fog, aching teeth, heart palpitations, numbness in my left hand, trouble breathing, and I feel like it has made my MS worse. I am back on Copaxone until I meet with the Doctor next week to discuss other therapies. I do have other health conditions, asthma, thalesemia, which is a blood disorder, and I had breast cancer in 2013 so I am concerned about trying some else new. Anyone else had bad reaction to Abagio? What medicine do you take now?
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Sorry to hear your MS might be progressing. There are so many newer DMTs available with different side effect profiles. You can read about them on MSAA website then discuss with your neurologist at your next visit.It would be hard for us to make any recommendations, especiallywith your other healthissues. I have PPMS so am on Ocrevus as it is currently the only approved DMT. SPMS and RRMS have more to choose from.
Best of luck!
Hello,I was on Copaxone for about 6 months and it caused severe brain fog side effects to where I couldn't function. I then was given Aubagio and it caused severe stomach problems.
I now get an Ocrevus infusion once every 6 months, and have had no side effects. As an added bonus, my relapses are down, and no new lesions! I've been on this treatment for about 3.5 years.
Feel better! I pray you get on the treatment soon that works for you. Seems they are all different and their side effects are different for each of us.
I'm the same as you. Was on Copaxone for a few years, and now on Ocrevus for 5 years. No side effects from Ocrevus, and I feel pretty good.
Hi,
I’m so sorry you have such a hard time. I can relate to a lot what your going through. I was also on Rebif for a time and I could not handle it either.
I have would suggest you ask your doctor if you are a candidate for ocervus it’s been one of the best drugs In have been on. It’s help my foot drop. My fatigue is better and I have been able to even work on rebuilding a life I enjoy.
I had to stop working at the career I was doing because of the demands. I now chose to do other jobs that help me physically and mentally.
If you need anything else please feel free to reach out. MS is hard but together we can make it a little easier.
Good Luck
19,
Hi Caste19:
I agree with ahrogers. It is very difficult to recommend a drug not knowing about your other diseases. I was on Copaxone for 15 years and am now on Abagio. Other then the site reactions of the Copaxone I did very well on the drug. I am doing well on the Abagio as well. follow your doctors recommendation.
Hello! Your concerns are valid! Although, I have never been on Aubagio I have heard good things about it. Specific MS drugs have varying reactions to various people. I actually was on Copaxone for 10 years before changes began. I too have Thalassemia (Alpha) so I am always worried about how my MS DMT (Disease Modyfying Therapy) will impact my blood. Please share your concerns with your MS doctor/MS Neurologist and even Primary Care Physician. Currently, I am Rituxan.
I have been on Aubagio for many years and it's the first med I Didn't have a reaction to! I'm glad there are so many choices because we all react differently. Good luck.
Hi, Caste19,
I wouldn't tolerate those side effects you had with Aubagio either. I've never tried Aubagio but I do know that Copaxone/glatiramer acetate seems to be the safest of the MS drugs and one of those with very tolerable side effects or no side effects. However, it is also considered to be one of the less effective drugs.
Since nobody knows just how effective any MS drug will be in each individual case, my attitude has been to favor a drug that is safe and causes me the least misery.
So I'm on Copaxone but in one of the generic forms--Glatopa (40 mg 3 times a week). I was on Copaxone (daily) for 3 years many years ago. It was much easier to tolerate than Avonex, which I was on for 3 years before that.
The neuro who prescribes my Glatopa does order routine lab work, and so there is some monitoring that needs to be done but so far I haven't had any red flags on the lab results. With your other health conditions, I'm sure that any doctor prescribing an MS drug will want to monitor you.
I was on Copaxone for over 10 years with no side effects other than site reaction in the last two years. I was starting to have new symptoms, so my neurologist switched me to Ocrevus infusions. I have been on that for 6 years now. No side effects other than feeling some neck lymph node tenderness and tired the week after the infusion. Since it takes down your immune system, you have to be careful about your contact with others for a few weeks. I just rely on good hygiene, such as hand washing, and limit my time in public.
18 years ago I started out on Rebif too but shortly changed to Copaxone. I was on Copaxone for 14 years until I started getting knots on my arms and hips. I tried Ocrevus for 2 years then it stopped working & I had side effects. I am now on Vumerity. I really like it, no side effects at all unless I take it on an empty stomach, then I get nausiated. I suggest you go online and research all the meds for MS. Then you will be informed when you talk to your neuro about changing meds if needed.
I don’t know if it would be right for you, but I have been taking Tysabri since diagnosed four years ago no side effects no relapses once a month Infusion it’s just extremely expensive. As the DMT’s go is the third best and is known as a front line DMT. You might want to check it out. The only issue is your JC level before and while taking if you become positive and you reach 3.0 you can be in danger of a pml. Might be worth looking into.
Hi, I have MS for 22 yrs now. I was on Copaxone for quite awhile. I had no side effects from this medicaton. When Gilenya became available my Neurologist prescribed it for me. I have no side effects. I just had an MRI on Sep 4, 2023. No new lesions and existing ones are stable!
I went from copaxone to Gilenya. Then it seemed to stop working so I was switched to Mayzent I haven't had ant side effects with it. Your doctor will have the best suggestions since he knows all your health issues. All you can do is try them and see what happens.
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