Vumerity vs Techfidera Experiences

An oral treatment for relapsing MS including clinically isolated syndrome, RRMS and active SPMS.
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Imabeaverinoregon
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Vumerity vs Techfidera Experiences

Post by Imabeaverinoregon »

Good day.

We have some concerns regarding Vumerity and we’re looking for your experiences compared to Techfidera.

My wife has had good experience with Techfidera but made the change to Vumerity since the financial assistance program had ended for Techfidera.

Ever since she made the change, her health has progressively decreased. Her primary issue is vision and it has decreased substantially since the change to Vumerity.

Has anyone else experienced a change in your health since making the change to Vumerity? We do not believe this is a coincidence even though, supposedly, this is like Techfidera 2.0.

Thank you for your thoughts.

Greg
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NHE
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Re: Vumerity vs Techfidera Experiences

Post by NHE »

Welcome to ThisIsMS.
Imabeaverinoregon wrote: Mon Dec 25, 2023 4:03 pm We have some concerns regarding Vumerity and we’re looking for your experiences compared to Techfidera.

My wife has had good experience with Techfidera but made the change to Vumerity since the financial assistance program had ended for Techfidera.

Ever since she made the change, her health has progressively decreased. Her primary issue is vision and it has decreased substantially since the change to Vumerity.

Has anyone else experienced a change in your health since making the change to Vumerity? We do not believe this is a coincidence even though, supposedly, this is like Techfidera 2.0.
I have no experience with either Tecfidera or Vumerity. However, you may want to to take a look at Vumerity's prescribing information. It discusses several potential negative side effects. These are listed below. Although they don't mention vision directly, there could be some effect in that area. Have you consulted with your wife's neurologist yet?
Biogen wrote:• Anaphylaxis and Angioedema: Discontinue and do not restart VUMERITY if these occur. (5.1)
• Progressive Multifocal Leukoencephalopathy (PML): Withhold VUMERITY at the first sign or symptom suggestive of PML. (5.2)
• Herpes Zoster and Other Serious Opportunistic Infections: Consider withholding VUMERITY in cases of serious infection until the infection has resolved. (5.3)
• Lymphopenia: Obtain a CBC including lymphocyte count before initiating VUMERITY, after 6 months, and every 6 to 12 months thereafter. Consider interruption of VUMERITY if lymphocyte counts <0.5 × 109/L persist for more than six months. (5.4)
• Liver Injury: Obtain serum aminotransferase, alkaline phosphatase, and total bilirubin levels before initiating VUMERITY and during treatment, as clinically indicated. Discontinue VUMERITY if clinically significant liver injury induced by VUMERITY is suspected. (5.5)
Imabeaverinoregon
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Re: Vumerity vs Techfidera Experiences

Post by Imabeaverinoregon »

We certainly have met with our neurologist especially since he prescribed it. He continues with the standard answer that it’s substantially equivalent to Techfidera. Oh well. I was hoping. This disease continues to affect her optic nerve. It just keeps getting darker.
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Re: Vumerity vs Techfidera Experiences

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Imabeaverinoregon wrote: Fri Dec 29, 2023 6:32 pm We certainly have met with our neurologist especially since he prescribed it. He continues with the standard answer that it’s substantially equivalent to Techfidera. Oh well. I was hoping. This disease continues to affect her optic nerve. It just keeps getting darker.
Did the neurologist evaluate her for PML? Vision problems can be associated with PML.

In addition, has she seen an opthomologist? Sometimes symptoms aren't always due to MS.
Imabeaverinoregon
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Re: Vumerity vs Techfidera Experiences

Post by Imabeaverinoregon »

Yes indeed. We've had an Ophthalmologist involved and PML is reviewed every year. MRIs are done every two years now.

On any given day and lighting situation it's never the Middle Bear. It's either too bright and full of glare or it's incredibly dark.

It just keeps getting worse. She now questions whether a DMD is worthwhile anymore. The Neurologist says at some point, it's probably not worthwhile anymore. She is now age 62 and the Neurologist has picked a number out of the air of age 65 to stop the drugs.

Greg
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Re: Vumerity vs Techfidera Experiences

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Does she take any supplements? If so, then which ones?
Imabeaverinoregon
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Re: Vumerity vs Techfidera Experiences

Post by Imabeaverinoregon »

She currently takes D3, Calcium, and an Osteoporosis drug. Her diet is good, weight is good, and we’re enjoying Holiday Chocolates right now.
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Re: Vumerity vs Techfidera Experiences

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Imabeaverinoregon wrote: Sat Dec 30, 2023 9:10 pm She currently takes D3, Calcium, and an Osteoporosis drug. Her diet is good, weight is good, and we’re enjoying Holiday Chocolates right now.
Enjoy your chocolate. I happen to like dark chocolate. The Endangered Species 88% cocoa bar is quite good. It was recommended in a review by ConsumerLab.com for its high cocoa flavanol content.

How much D3 does she take? Many folks here take it with a good magnesium supplement like magnesium glycinate. Taking extra D3, especially at the levels recommended for PwMS, can deplete magnesium leading to increased spasticity. Here's the magnesium I take.

I would be cautious with supplemental calcium. It can cause hypercalcification of the blood. Calcium then plates out in the vascular system leading to plaques. Taking vitamin K2 can help as it helps remove calcium from the vascular system and helps it go to the bones. However, it's best to get your calcium from food sources. Please see the following article.

Are Calcium Pills Hardening Your Heart Arteries?
People's Pharmacy wrote:Millions of women routinely pop calcium pills to build strong bones. Instead, they may be creating calcified coronary arteries. What to do?
https://www.peoplespharmacy.com/article ... t-arteries
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NHE
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Re: Vumerity vs Techfidera Experiences

Post by NHE »

Here are a couple of posts about vitamin K2.

• Neuroprotective effect of Vitamin K2 against gut dysbiosis associated cognitive decline

viewtopic.php?p=263000#p263000

• Vitamin K2 is protective in an Alzheimer's Disease model.

viewtopic.php?f=27&t=32459

Here's a meta-analysis that found a beneficial effect of vitamin K2 on bone mineral density. The full text is available for free.

Efficacy of vitamin K2 in the prevention and treatment of postmenopausal osteoporosis: A systematic review and meta-analysis of randomized controlled trials
Front Public Health. 2022 Aug 11:10:979649.

Conclusions: The results of this meta-analysis seem to indicate that VK2 supplementation has a positive effect on the maintenance and improvement of BMD LS in postmenopausal women, and it can also reduce the fracture incidence, serum uc-OC levels and the ratio of uc-OC to cOC. In conclusion, VK2 can indirectly promote bone mineralization and increase bone strength.
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DIM
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Re: Vumerity vs Techfidera Experiences

Post by DIM »

Instead of dark chocolate that is usually alkalized she should prefer Cryolo biological cocoa that contains high amounts of theobromine which has neuroprotective properties!
Plus if she takes an osteoporosis medicine worth to discuss with her doctor to replace it with Bazedoxifene, an osteoporosis medicine that promotes remyelination according to some animal studies (there is one active in women with MS).
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Re: Vumerity vs Techfidera Experiences

Post by NHE »

DIM wrote: Mon Jan 01, 2024 8:32 am Instead of dark chocolate that is usually alkalized she should prefer Cryolo biological cocoa that contains high amounts of theobromine which has neuroprotective properties!
Here in the US most alkalized chocolate is labeled as "processed with alkali" or "Dutch processed." There are many good dark chocolates available. The Endangered Species 88% bar is not processed with alkali.
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Re: Vumerity vs Techfidera Experiences

Post by ElliotB »

Sorry to hear that your wife is having issues.

The change in your wife's condition may be unrelated to the medication change. There is really no way to know for sure. DMDs, when they work (and they don't work for everyone), typically only prevent future relapses. Since your wife was already having issues with her vision, this likely not related the change in medication.
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With regards to chocolate, sugar should be avoided at ALL costs, even in small amounts. I know of no significant health benefits to sugars, especially for anyone with a major illness. And yes, there are some references on the web to minor benefits but mostly related to skin/complexion. Really, likely nothing of importance to anyone here.

BUT chocolate, REAL chocolate that is sugar free and made from nibs, is probably good to consume daily. Chocolate is thought to have SO many wonderful health benefits - I enjoy dark chocolate daily and have been for years. I do make my own.

Anyone can easily make chocolate from scratch using fermented cocoa nibs which gives you full control over the ingredients. And at a fraction of the cost too. A blender is necessary as is cocoa butter. There are several all-natural sugar substitutes that are zero glycemic, and safe and healthy to consume - do not use any of the common 'artificial' sweeteners on the market. I add about 10 ingredients to the chocolate I make including sugar free carob which also enhances the flavor nicely. I have even found a way to avoid tempering which makes the process so much faster and easier.
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DIM
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Re: Vumerity vs Techfidera Experiences

Post by DIM »

NHE wrote: Sun Dec 31, 2023 10:46 am Here are a couple of posts about vitamin K2.

• Neuroprotective effect of Vitamin K2 against gut dysbiosis associated cognitive decline

viewtopic.php?p=263000#p263000

• Vitamin K2 is protective in an Alzheimer's Disease model.

viewtopic.php?f=27&t=32459

Here's a meta-analysis that found a beneficial effect of vitamin K2 on bone mineral density. The full text is available for free.

Efficacy of vitamin K2 in the prevention and treatment of postmenopausal osteoporosis: A systematic review and meta-analysis of randomized controlled trials
Front Public Health. 2022 Aug 11:10:979649.

Conclusions: The results of this meta-analysis seem to indicate that VK2 supplementation has a positive effect on the maintenance and improvement of BMD LS in postmenopausal women, and it can also reduce the fracture incidence, serum uc-OC levels and the ratio of uc-OC to cOC. In conclusion, VK2 can indirectly promote bone mineralization and increase bone strength.
Vitamin K2 in multiple sclerosis patients
https://pubmed.ncbi.nlm.nih.gov/29500722/

Background: Vitamin K2 (VK2) belongs to the vitamin K family and comprises a number of subtypes differing in length of side chains consisting of isoprenoid groups (menaquinone-n, MK-n). It is essential for a number of physiological functions although the full spectrum of activity has not yet been elucidated. Due to its role in protection of mitochondrial damage, VK2 could be relevant in preventing disease progress in multiple sclerosis (MS).

Methods: We measured VK2 serum levels by the double antibody sandwich Enzyme-linked Immunosorbent Assay (ELISA) technique in MS patients and age and sex matched controls, both under vitamin D supplementation, and related it to disease characteristics and treatment.

Results: Overall, 45 MS patients (31 females and 39 of the relapsing-remitting type) and 29 healthy controls (19 females) were included in the analysis. The MS patients had vastly lower VK2 blood levels than controls (235 ± 100 ng/ml vs. 812 ± 154 ng/ml, respectively). Female patients had significantly lower VK2 levels than males and a decrease with age by approximately 10% per decade was found. The VK2 levels were lower with increasing numbers of attacks per year and were higher in patients with optic nerve lesions. No consistent relationship with medications was detected.

Conclusion: The substantially lower levels of VK2 in MS patients could be due to depletion, lower production in the gut, diminished absorption or, less likely, reduced intake of precursor vitamin K1. The role of VK2 in MS development and progress deserves further study.
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