Treatments for multiple sclerosis: Patients share their opinions!
Published Feb 18, 2021 • By Clémence Arnaud
Multiple sclerosis (MS) is an auto-immune disease that affects the central nervous system and progresses in the form of relapses. Different types of treatment are therefore necessary to act on the underlying causes of multiple sclerosis, but also to relieve the symptoms present during relapses.
What treatments currently exist for MS? How are they tolerated? What do patients with multiple sclerosis think about them?
We tell you everything in our article!
This class of MS drugs aims to regulate the patient's immune system. These include beta interferons (AVONEX®, BETAFERON®...), pegylated interferons (PLEGRIDY®) or glatiramer acetate (COPAXONE®).
A few users on Carenity's French platform have described adverse side effects with Avonex®:
"I have been taking this treatment for almost a year now and I still have side effects. For me it is very important to take 2 acetaminophen tablets and 1 ibuprofen before the injection and to continue every 4 hours (even at night) for the first 2 days. Afterwards I have monitor how I'm feeling; if I'm tired, I'll only take the 2 acetaminophen tablets and often it's enough".
Immunosuppressive drugs (GILENYA®, MAVENCLAD®, TYSABRI®) are used when immunomodulating treatments are ineffective or when the patient has a fairly severe form of multiple sclerosis
Some treatments offer an alternative to injections with oral forms. This is the case for TECFIDERA®, for example, which is dual action medication with an anti-inflammatory and an immunomodulating effect.
"I have been taking Tecfidera for 5 yrs. I still get flushing sometimes. Feels like a sunburn on my face and chest for a while but not bad," describes a Carenity US member.
In a Tecfidera® discussion thread, a French member wrote:
"Hello, I have fully 'mastered' Tecfidera®! Everything's better now that I've implemented various tips: taking probiotics with meals, always carrying aspirin with me... I've established a routine and things are better than with Avonex®. I just feel really tired sometimes!"
AUBAGIO® also helps to reduce the frequency of MS flare-ups and thus to slow down the progression of the disease. Its mechanism of action is not entirely clear. Many side effects have been described, such as abdominal pain, diarrhea and hair loss.
"I just started this treatment on September 23rd. Unfortunately, I am dealing with side effects that really weigh on my daily life. My neurologist told me be patient and to wait until my body gets used to the treatment. So even if my pain and fatigue have increased, I will see how I manage the side effects over time," expressed a member on Carenity France.
Monoclonal antibodies are also being developed to meet the needs of multiple sclerosis patients. OCREVUS® (ocrelizumab) targets the CD20 marker present on certain white blood cells (b-lymphocytes) that are involved in inflammatory processes.
A Carenity US member said: "I'm currently on Ocrevus® and my disease has not been a bit active since I started it, which is great."
Treatment for flare-ups:
Corticosteroids with their anti-inflammatory properties are used to treat relapses in multiple sclerosis. They are administered as an intravenous infusion. Methylprednisolone is the corticosteroid most often used.
Treatments for symptoms:
FAMPYRA® is a medicine used to improve walking ability in adults with multiple sclerosis (MS) who have a walking disability. A walking rehabilitation program is recommended in parallel to this treatment.
"From the very first pills I took I recovered my endurance. Before I was tired after 20 minutes of walking, after starting the medicine I was able to restart four-hour-plus long hikes!", wrote a Carenity France member.
For another user on the French platform: "For me the Fampyra® worked really well in the beginning several years ago. However, I stopped it after consulting my neurologist because it caused me a lot of paraesthesia (pins and needles) in my legs and feet."
Medicines used to improve muscle performance, especially painful spasms, can be used in multiple sclerosis. Different compounds are available such as BACLOFEN or DANTROLENE.
A number of alternative treatments are available for MS patients, including acupuncture. One Carenity US member describes:
"I have tried acupuncture, dry needling and electrical stimulation with acupuncture... It feels great in the moment and sometimes I can get relief for a few hours or a day, but the pain comes back with a vengeance and there is nothing I can do to manage it."
Regular physical activity is also a useful support in multiple sclerosis to help patients achieve greater autonomy.
Some patients of the Carenity France use homeopathic treatment to alleviate their MS symptoms:
One member shares: "For sleep and the various pains related to MS... I think homeopathy is effective for certain pains. I don't plan to stop using my homeopathic remedies, Oscilloccinum (a homeopathic flu medicine) has worked well for me. You either believe in the benefits of homeopathy, or you don't."
Hope for future treatments:
Treatments for multiple sclerosis have improved dramatically in recent years. New therapeutic solutions are still being developed, including complementary techniques such as immunosuppression combined with neuroprotection. Neuroprotection would aim to protect neurons from irreversible damage caused during MS. Another technique called remyelination aims to increase the body's ability to repair damage to myelin, the sheath of neurons destroyed in MS patients.
A member on Carenity France commented: "My neurologist confirms that there are major advances being made in stem cell research and remyelination, which is the future for curing patients... Let us hope that they make progress quickly!"
Other treatments are also in development, such as ZEPOSIA® (ozanimob), which could soon be indicated as a first-line treatment for active forms of relapsing-remitting MS in France.
KESIMPTA® (ofatumumab) is a subcutaneously administered anti-CD20 monoclonal antibody indicated in patients with an active and relapsing form of MS. Kesimpta® was granted marketing authorisation by the U.S. Food & Drug Administration in August 2020 and by the European Medicines Agency in January 2021.
Be sure to consult your health care professional first if you have any questions about your treatment.
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