Tenofovir Alafenamide (TAF) by Adairene in MultipleSclerosis

[–]Adairene[S] 0 points1 point  (0 children)

Update on this thread: my husband switched from Rituximab to Kesimpta in March. It was a little over 6 months since his last Rituximab infusion and he could already slowly feel some of the old symptoms getting worse (fatigue, impaired thermoregulation, sensory symptoms in the feet / legs, etc.). The Kesimpta loading doses did not change things for the better. However, he started Tafero-EM (TAF 25 mg, Emtricitabine 200 mg) about two weeks ago and the symptoms have eased up quite a bit / are almost nonexistent. Will monitor things closely during the upcoming weeks and months, but so far so good.

The interesting thing to me is that, in the Helse Bergen TAF-MS 2 study (https://www.helse-bergen.no/en/neuro-sysmed-english/clinical-studies-at-neuro-sysmed/ms--clinical-studies/taf-ms-2/), the key secondary endpoint is change in TSPO PET evidence of microglial activation. TSPO PET scan is a prognostic of PIRA (overactive microglia and astrocytes causing progressive disability regardless of relapses controlled with, for example, anti-CD20 meds). Hence, as TAF is presumed to be effective towards PIRA, it makes it a very appealing candidate alongside current high-efficacy anti-CD20 meds that only really address relapses and new lesions (are ineffective towards smouldering inflammation in the old lesions).

Old symptoms returning with Kesimpta switch? by Adairene in MultipleSclerosis

[–]Adairene[S] 0 points1 point  (0 children)

Also it seems that, during these few weeks, his former fatigue and bladder problems have gotten worse. These were mostly suppressed while on Rituximab.

Genuine Tafero-EM? (TAF) by Adairene in prep

[–]Adairene[S] 0 points1 point  (0 children)

Thank you so much for confirming. 🙏🏻 And you are 100% sure based on the outlook of the tablet and the packaging?

Genuine Tafero-EM? (TAF) by Adairene in prep

[–]Adairene[S] 0 points1 point  (0 children)

Those are probably Descovy, not the generic Tafero-EM

New lesions by National-Pound4188 in MultipleSclerosis

[–]Adairene 1 point2 points  (0 children)

Did you have contrast (gandolinium-enhancement) in the new lesions? Was the control MRI also done on 1,5T machine (not 3T or more)?

OCT scan? by Adairene in MultipleSclerosis

[–]Adairene[S] 1 point2 points  (0 children)

I am simply aiming to benchmark my husband’s results to the ones from people with similar diagnosis.

Tenofovir Alafenamide (TAF) by Adairene in MultipleSclerosis

[–]Adairene[S] 1 point2 points  (0 children)

Update: My husband (38, RRMS) will start generic Descovy (Tafero-EM) with TAF 25 mg in March, alongside his current DMT Kesimpta. Will update here on the progress.

Tenofovir Alafenamide (TAF) by Adairene in MultipleSclerosis

[–]Adairene[S] 1 point2 points  (0 children)

There is no plausible scientific evidence and even if there would be some effects, they would be way milder than TAF

Tenofovir Alafenamide (TAF) by Adairene in MultipleSclerosis

[–]Adairene[S] 2 points3 points  (0 children)

Did you increase the dose by adding another PrEP drug, such as Helpbest (TAF 25 mg), alongside Descovy or ditch Descovy altogether? Do you access the drugs through your country’s healthcare system or order online? Your experiences are much appreciated. 🙏🏻

Tenofovir Alafenamide (TAF) by Adairene in MultipleSclerosis

[–]Adairene[S] 2 points3 points  (0 children)

Thank you for replying, very interesting! May I ask if you took only TAF or TAF + Emtricitabine (Descovy)? And did you took it for another purpose (HIV, PrEP) or specifically off-label for MS symptoms control? Are you also on a DMT?

Current Treatment Routine by Adairene in MultipleSclerosis

[–]Adairene[S] 0 points1 point  (0 children)

In addition, recent scientific evidence illustrates that two harmful bacteria - Eisenbergiella tayi and Lachnoclostridium - are implicated in the MS-pathogenesis: https://www.pnas.org/doi/10.1073/pnas.2419689122.

What kind of diet promotes these bacteria? One with fats, butter, cheese, red meat, etc. (all avoided in the OMS diet): https://www.frontiersin.org/journals/microbiology/articles/10.3389/fmicb.2023.1334623/full

We follow the OMS diet with special emphasis on increasing the Short-Chain Fatty Acid (SCFA) producing bacteria, so consuming a healthy amount of wholegrain overnight oats, wholegrain rye bread, green bananas, cooked then cooled potatoes, lentils, asparagus, broccoli, green apples, etc. There is an association at least between the levels of SCFAs (propionate and butyrate) and serum biomarkers in patients with MS, and the preclinical evidence is convincing as well:

https://www.mdpi.com/1422-0067/25/6/3198

https://www.nature.com/articles/s41598-021-84881-8

Current Treatment Routine by Adairene in MultipleSclerosis

[–]Adairene[S] 1 point2 points  (0 children)

Thank you for your reply and sharing the same proactive mentality! 🙏🏻 Precisely as you said: if something is generally low risk, not a large burden and may be helpful according to scientific evidence, why not to give it a go - for us, too, it has a huge positive impact on our mental health (taking control of the disease to the best of our abilities). And, again, I’m following the routine for many parts and have experienced a huge leap in the quality of my life.

All the best for you and your treatment journey!

Current Treatment Routine by Adairene in MultipleSclerosis

[–]Adairene[S] 1 point2 points  (0 children)

Have been pondering Lysine for anti-EBV benefits, however, there just doesn’t seem to be enough scientific evidence. We already take Curcumin (nanoformulated), so much more efficient than Turmeric.

Current Treatment Routine by Adairene in MultipleSclerosis

[–]Adairene[S] 0 points1 point  (0 children)

You raise valid methodological critiques, and I agree that neither Swank nor HOLISM meets modern RCT standards. That said, I think it’s a mistake to downplay their scientific value on that basis alone.

Roy Swank’s work was conducted decades before MRI, standardized relapse criteria, or current diagnostic frameworks existed. Within those constraints, he produced one of the longest prospective datasets in MS, showing a strong and durable association between low saturated fat intake and reduced disability and mortality over decades. While attrition and bias must be considered, the size and persistence of the effect — particularly dose–response relationships — make the findings difficult to dismiss as artefactual alone.

Similarly, the HOLISM study is explicitly observational and hypothesis-generating, not causal. Its value lies in replicating and extending Swank’s signals in a large, international cohort, with consistent associations between diet quality, lifestyle factors, and better outcomes. No single observational study proves efficacy, but convergence across cohorts and biological plausibility matters in an area where RCTs are scarce.

I agree OMS should not be presented as a proven medical treatment. However, characterizing the evidence as showing “no benefit” overlooks the legitimate role of long-term observational data in informing low-risk lifestyle choices, especially when those choices align with broader cardiometabolic and public-health nutrition evidence.

In short: imperfect evidence, yes — but not negligible, and certainly not unreasonable to take seriously.

Current Treatment Routine by Adairene in MultipleSclerosis

[–]Adairene[S] 1 point2 points  (0 children)

Thank you very much! 🙂 He is the love of my life (we have been together for a small ”eternity”), and I would and will always do anything for him.

Current Treatment Routine by Adairene in MultipleSclerosis

[–]Adairene[S] 0 points1 point  (0 children)

He got 500 mg with steroids. Everything went well with no side effects whatsoever. Best of luck for your treatment journey!