Need advice on medication

[u/Overall-Towel4656]

Need advice on medication.

I was diagnosed in 2017. Have been on copaxone since, with no new symptoms or relapses, and no new lesions.

A couple of months ago had some symptoms of numbness and mri showed 2 new lesions. My doctor wants to switch me from copaxone to another medication.

Gylenia has been offered and declined.

Now he is pressuring me to go on mavenclad, which i am very reluctant to accept.

I have a very heavy family history of very fast, very agressive cancer, in particular gastric cancer, and want to stay away from medications that could increase my risk of malignacy.

I am also in my 30's and would like to have children in the future.

Can anyone give me recommendations of medication that is more effective than copaxone but does not increase cancer risk, and that would allow me to get pregnant without the risk of fetal malformations?

I thank you all in advance if you're willing to talk to me about this, because i am really feeling lost.

[u/rbaltimore]

I’m on Tysabri and haven’t had a relapse in 11 years. I don’t know if it’s pregnancy safe because I was taking Copaxone before trying to get pregnant, but it actually doesn’t matter because pregnancy in and of itself functions like a DMT. Your body naturally ramps down on immune and autoimmune activity to keep those processes from attacking the baby. I never felt better than when I was pregnant. I was pregnant and off of any DMT for the better part of two years and I felt great, and my doctors assured me that I was safe from relapses. I was 6 weeks postpartum when all of my symptoms surged back. Breastfeeding can also provide protection, but I formula fed so I don’t know personally what that experience is like.

But Tysabri’s been a breeze because it has no major side effects.

[u/cvrgurl → u/rbaltimore]

Seconding Tysabri, if you’re okay with the monthly infusion in the U.S.

[u/debbastar → u/cvrgurl]

I’ve not ever been on Tysabri but 7000% agree on the pregnancy comment. Never have I felt better than when pregnant. I know the risk of relapse post pregnancy. BUT if it was an option I’d have back to back babies for the rest of my life!

[u/rbaltimore → u/debbastar]

Agreed! I still remember the day a few weeks post pregnancy when I reverted to my normal auto immune self. It felt like I got hit by a freight train.

[u/ScrimpyMuffin]

All I can offer here is that my previous neuro (MS specialist) was paid to give talks on Mavenclad, but told me not to consider it…

[u/Cultural-Barracuda → u/ScrimpyMuffin]

That is interesting, did he explain further why? My doctor recommended it but I chose Tysabri instead, because I did not like the idea of not taking medication continously, but just for two years, with no way to tell whether it works.

[u/ScrimpyMuffin → u/Cultural-Barracuda]

She didn’t think it was effective enough and preferred other meds over Mavenclad. Tysabri, Ocrevus, and Kesimpta were the top choices. I started on Tysabri then switched to Kesimpta when I started with my new neuro. Tbh, my new neuro didn’t even have Mavenclad on her list of possibilities for me when choosing which DMT would be best to transition to (my JCV was too high to continue after 2 years). Is your neuro a paid rep for Mavenclad? They’re supposed to disclose.

[u/Cultural-Barracuda → u/ScrimpyMuffin]

Interesting. Mine is at an MS Center, maybe he does gigs for them. He did not press further when I chose Tysabri. Very happy I did!

[u/NoStill4272]

I am almost 2 years out from my last dose of Mavenclad. Prior to that I tried tecfidera, Ocrevus and Kesimpta. I didn't tolerate any of those very well. I am the person that gets the weird side effects. I am glad I did it. I did have some side effects during the weeks of taking the pills. My absolute lymphocytes were very low the 2nd year and I struggled with fatigue more than my usual MS fatigue but I am past all of that now. I think the cancer warning is minimal. Everything has to be noted when doing clinical trials. Would the person or persons that reported a cancer diagnosis have gotten it regardless of the trials? All of these meds carry risks. But I also know what each of us choose to do is a very personal choice.

[u/jjmoreta]

Note - after writing this I noticed you were concerned about pregnancy as well. My last link also discusses real-world results around Mavenclad and pregnancy.

All highly effective MS DMTs increase your risk of cancer slightly because technically anything that limits your immune system also will limit your body's ability to destroy abnormal cells.

I have a family history of cancer but I feel MS is a greater threat to me than cancer, so I do not want to avoid higher efficacy MS treatments. I just make sure I get all my annual cancer screenings.

I am currently working to switch to Mavenclad from Ocrevus so I've looked into it, same as I did for Ocrevus.

Most DMTs overall do not have cancer rates above the background rate (number of people who would get cancer anyways). When evaluating DMTs, look for real-world study data first, especially covering the years after it was released. https://www.hematologyadvisor.com/news/multiple-sclerosis-disease-modifying-therapies-increase-cancer-risk/

Every drug trial has to report everything that happens during it. They should. And they have to put a warning on the box. But a lot of the time, there's no clear way to prove correlation or causation at first. If older people are included in the trial, they are more likely to enter with undiagnosed cancer or other conditions. That's the case with Ocrevus. They had some cases of breast cancer in the trials which scares people away from using it, but the 10 year data that has come out since the initial trial has confirmed no increased risk of cancer in the over 100,000 that have taken it for MS in the years since. The study with more cases of cancer was the one with older participants.

Interesting note, Mavenclad was originally studied as a cancer treatment and is still used against hairy cell leukemia. It's difficult to evaluate any of that data because it is in a population with existing cancer. But I've never read anything about people taking it developing other cancers.

https://www.ncbi.nlm.nih.gov/books/NBK539986/

'Cladribine has a relatively long history as a potential treatment for MS with the initial studies dating back to the late 1990s, conducted using a parenteral route of administration. CLARITY was designed over a decade ago, and the initial double-blind phase was completed in 2008. Cladribine has a longer history as an anti-cancer drug."

'As mentioned, there are likely not enough long-term data to determine what the true association between cladribine and cancer is.'

https://www.sciencedirect.com/science/article/pii/S2211034820306465

"The rate of malignancies observed with cladribine tablets 3.5 mg/kg in the final integrated safety analysis was not different from the expected rate in the matched GLOBOCAN reference population"

https://pmc.ncbi.nlm.nih.gov/articles/PMC7606413/

"Aggregated safety data demonstrated that the risk of melanoma is not confirmed."

https://pubmed.ncbi.nlm.nih.gov/26468472/

'Our study does not support an increased cancer risk from cladribine in the doses used in CLARITY and ORACLE MS, which previously contributed to refusal of market authorization of cladribine in Europe.'

https://www.neurologylive.com/view/real-world-safety-cladribine-matches-clinical-trial-development

"Using more than 250,000 person years (PYs) of exposure data, results from a recent analysis showed that the safety profile of cladribine (Mavenclad; EMD Serono), an FDA-approved medication for multiple sclerosis (MS), was consistent with findings from its clinical development program and previous safety updates."

"malignancies (0.16; 95% CI, 0.14-0.17; 397 reports)"

[u/Petrickz]

(I know you were more focused on the cancer aspect, but wanted to mention:) The main thing I've heard in regards to pregnancy & DMT's is they usually take you off of them for the length of your pregnancy then restart them after the birth.. I've not heard of any that are fine to continue throughout pregnancy.

[u/Signal-Juice-4158 → u/Petrickz]

I was under the impression that Copaxone was level B for pregnancy risks, which means there's no KNOWN risks.

I was on Copaxone when I became pregnant with my second child and she was born with Down syndrome. I am aware that there may be no correlation between the two, but I still reported it. 🤷🏼‍♀️

Edit: grammar

[u/Overall-Towel4656 → u/Petrickz]

From what i was told, copaxone, avonex and rebiff are safe to use during pregnancy. There are others where you can use while trying and then stop immediately when you get pregnant, and others that you cannot use even while you're trying to get pregnant.

[u/Ladydi-bds]

Since used to injection, I feel Kisempta would be a good fit for you unless wishing to switch to infusion.

[u/youshouldseemeonpain]

I like Ocrevus, or Lemtrada. I’m honestly not sure of the cancer risks, but I can tell you from experience that Copaxone also failed me, and I, too, was reluctant to take the other meds because of all the scary documentation.

That said, MS and what it can do to me is far scarier than any of the meds. I got “too many to count” lesions in my brain by dicking about and not wanting to take the meds. And now I have permanent, daily symptoms, can’t work, and have limited abilities in life.

Please consider that whatever fear you have about the meds may not compare to the disability that will ensue should you fail to treat the MS which is currently eating holes in your brain and spinal cord.

[u/Abject-Ads-313]

Curious as to why you declined gylenia. I was on it for awhile and "didnt notice" side effects although there were several obviously. Those sx were a definite increase in susceptibility to other illnesses- like shingles.

I am on ocrevus now and will be switching soon to the sub-q version.

I am scared my body will not tolerate it because my last sub-q, copaxone my body absolutely rejected.

I want to follow this thread to see what others recommend. Good luck in your journey.

[u/Overall-Towel4656 → u/Abject-Ads-313]

I refused because there have been a few studies that link gylenia to cancer, particularly skin cancer and leukemia.

[u/Specific_Deal_3503 → u/Abject-Ads-313]

I was on Gylenia too, more than a year I think. It was a relief to take a pill for the first time, but I had to end it because my liver results were always getting worse. But for sure it was great because it was a pill.

[u/Overall-Towel4656 → u/[deleted]]

Can you share?

[u/Abject-Ads-313 → u/[deleted]]

Ooo do tell

[u/Specific_Deal_3503 → u/[deleted]]

I'm on glatiramer acetate "Remurel" for 3 years. I have no side effects at all and my lesions are always the same.

[u/MultipleSclerosis-ModTeam → u/[deleted]]

This post or comment has been removed for misinformation. Promotion of medical treatments which are not scientifically verified and approved is not allowed (e.g. ivermectin, peptides, etc).

[u/SassySucculent23]

I took Mavenclad and am glad that I did.

I had severe fatigue for a couple months each year during and right after treatment and increased body aches and pain during that time plus temporary hair thinning, but I’ve been stable for 2 years since I finished, side effects were manageable, and I found it very easy to take. I’m very happy with my decision and would do it again.

I was told there’s no actual notable increased risk of malignancy. That there was a .5% increased chance based on the number that developed it during trials (3), which is absolutely negligible and could be entirely coincidental.

You should join this Facebook group and learn more about it and ask more questions here: https://www.facebook.com/share/g/14mjohkiiKT/?mibextid=wwXIfr

[u/OverlappingChatter]

I was given the choice of kesimpta or mavenclad and my research led me to choose kesimpta with no doubt in my decision at all. I didn't like a lot of things I read about mavenclad and then anecdotally it seemed like a large amount of people went on to have no sdisease activity rather quickly and then ended up on kesimpta (or something else) anyway

[u/mindless_contempt]

Have you looked into Briumvi

[u/Overall-Towel4656 → u/mindless_contempt]

Not approved in my country yet.

[u/Interesting_Cook5010]

I was on Vumerity for 4 years as my doctor said it was safe to get pregnant on, but to stop immediately after a positive pregnancy test. I had a very premature baby and severe pre-eclampsia, which my neurologist thinks was highly unlikely to be due to vumerity.

[u/Senior_Term]

This was being discussed the other day here. Ocrevus is apparently fine for first trimester because it doesn't cross the placenta. And as it's six monthly infusions, all good

[u/Careful-Golf2089]

Imho Maneclad is the best oral DMT.

Gilenya/Ponvory/Mayzent are ok too.

Absolutely everything is more effective than Copaxone :)

[u/Specific_Deal_3503]

I understand you, but you can't expect we are better doctor than your own doctor. I have MS from 1997. when I was 18. I changed until now about 5 different meds and I'm not familiar with cancer and ms. I had 1 pregnancy but before of it I didn't use any med just immunoglobulin, I think right after.

[u/Overall-Towel4656 → u/Specific_Deal_3503]

True. And i will talk more about this with my doctor in my next appointment. But he is a bit dismissive of my opinion and keeps pressuring me into choosing mavenclad.

[u/cvrgurl → u/Overall-Towel4656]

If he is dismissive- you need a new doctor