Hi
Please could anyone help. My neurologist and I had a chat 18 months ago as 2 new, very small lesions were discovered on my brain. I hadn’t had a relapse in 6.5 years and I believe the only reason I had one in December 21 was because I had covid. We agreed I wouldn’t start on DMT’s as I have 2 young boys and I want to be able to live without medication (no judgement on peoples choices - this is my choice). However two new small lesions were discovered at the last MRI in March. Neuro now wants me to start DMTs. No relapses since Dec 21. I’m 13 years post diagnosis and thankfully for now have no disability or significant symptoms. So my questions is these - are DMTs at this stage right for me? If so what should I ask for? I’d like the lowest impact drugs. Im truly so scared to start DMTs as I fear the side effects more than I fear the MS, rightly or wrongly. So any guidance would be so very gratefully received as I feel very very alone right now. Thank you
Hi
I am just about to start on Brabio.
I was told I have ms in dec last year.
At the moment I have very mild effects, slightly numb face
I too wanted to start on a low-impact DMT with no regular trips to the hospital needed. I live a distance away from the hospital I am being treated at ( close to another hospital but because I live on the border of 3 areas the close one is classed as out of area!)
I was offered 7 treatments
Have you been told with treatments you will be offered?
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No not as yet. That one doesn’t come up on my list - are you in England? Is it a table or injectable?
Hi Yes I am in the east midlands
Brabio is the new copaxone, its a injectable.
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I would always recommend Tecfidera based on my experience. Been taking it over 4 years with no side effects at all. x1 tablet twice a day with food, so breakfast and dinner works for me. Best of all relapse free in that time and MRI’s all clear too. Bloods are taken every 3 months to measure Lympho count. Good luck in your choice.
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So you didn’t experience any hair loss? What’s lympho count? Sorry for my ignorance. Is this drug one of the ones which doesn’t make you immune-suppressed?
Thank you for replying @RetrovirusUK and @TeddyBear1. Really appreciate it
Never experienced any hair loss, or stomach cramps that some folks report. I had some minor flushing way back when i just started taking them but that stopped after a few weeks. Your bloods are taken every 12 weeks on Tecfidera to measure your Lymphocyte(White Blood Cell) count as in some folks it can cause them to drop, this has never happened to me, of course if it was to fall too low they’d take you off them. There are some serious risks to Tecfidera but they are vanishingly rare thankfully.
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This is what scares me. I don’t consider myself very lucky and I already have stomach problems and thin hair. I’ve no disability and I’ve sensory issues from time to time (tingling) but I’m still very active and run etc. That said the risk of not taking drugs seems to be growing due to the new lesions.
I’m very scared of the potential side effects. I’d say more than MS at the moment. Then I’m conflicted as I feel maybe I should just be grateful there are drugs available and I should just get on and take them.
I think in summary I’m terrified, mostly of making the wrong decision and I really don’t want to be immune suppressed as I have two young boys.
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I have no disability, fatigue or anything else, I’m also still active with a full time career, most days can forget i have MS.
You have active lesions and for that reason alone i would be taking a DMT in your position.
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I have taken tecfidera for about 2.5 years. I still get some flushing most days and hair breakage. My lymphocytes dipped for a while but are now back in the normal range (just). Overall though I’d personally rather these side effects than risk not being on a DMT, as they are mild compared to what ms can do.
One of the really positive things about tecfidera is that there are no negative consequences for stopping it. I think it might be useful in your situation to have a discussion with your neuro/nurse about what would happen if you decided you wanted to stop a medication. You might feel better about trying one if you were reassured you could stop it/switch it easily if you changed your mind after starting.
It is great you’ve stayed so well for so long. Really hope it continues this way for you whatever treatment route you choose. Good luck!
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Hi, I’ve also taken Tecfidera, I was on it for 18 months, hot flushes for a couple of weeks but even then they’d only last a couple of minutes so it wasn’t a problem really. My issue is my white blood count drops with every dmt I’ve tried, Avonex, plegridy and Tecfidera so I only last 18 months on each. I’m waiting, have been since July for my bloods to improve enough then the plan is to start Aubagio. I know people will wonder why I bother with dmt’s when my blood doesn’t seem to tolerate any of them but my mum also had MS, she had no treatments at all, not so available in her day and she ended up being totally disabled and blind. Her last few years we had to do everything for her, hoist out of bed, toilet, wash, dress, feed, everything. I don’t mean to scare you or anyone else but I’ll take whatever I can get to try and stop that happening to me. So far after 17 years with ms my bowel function is the only thing I’ve lost. We all have to remember that every ones ms is different but personally none of the side effects are enough to put me off. Even when my white bloods are down I don’t feel any different, I don’t get colds or bugs or anything.
Good luck with your journey
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Thank you although of course that does scare me. Do you mind me asking which strand of MS your mum had? As in RRMS or secondary progressive. I only ask as I know so little about the potential future.
Ideally I’d like a drug which doesn’t suppress my immune system, having two school age boys. I want to enjoy their childhood fear free. I am scared of the side effects and vanity means I really
don’t want my hair to be any thinner 
I know that sounds bad but mine is really thin already.
Thank you @Charl84 & @LucyAnnie.
Is it true that this drug doesn’t make you immune suppressed?
Sorry I honestly don’t want to scare. I think mum would be primary progressive, when something happened with her, she never recovered. I’m RRMS.
Like I said even though my immune system is low I never seem to catch anything, my husband can be full of the cold and it just passes me by. I’d honestly not know my immune system was down if it wasn’t for the hospital doing blood tests.
I know what you mean about losing hair, but mine was fine on Tecfidera.
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@lucyannie good luck finding the right drug for you xx
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Thank you and don’t worry, I scare easily haha! Slightly health anxious, hence my reluctance about the drugs. I just felt my MS was under control so this news has been a blow. I think I’ll ask about tecfedira as a start. I’m sorry about what happened to your mum too. Must’ve been very difficult for you both. Much love x
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Not quite…it does suppress you a bit but nothing like as much as the next tier of drugs, the ones classed as ‘very effective’. I think it also depends person to person, like Retro says they’ve always had steady blood results so I suppose therefore not immune suppressed but for me mine were low for a while before coming back up. My GP has called a couple of times after particularly low results to express concern but my neurologist has always been happy.
The only time I’ve been very unwell since starting it was with covid and that may well have been the case anyway. Technically I wasn’t seriously unwell either - I wasn’t hospitalised or anything just felt absolutely awful and quite scared!
My neurologist has said to me he’s never had a patient suffer a serious side effect/negative consequence on tecfidera. He said in the next tier of drugs there have been so many he couldn’t count. He loves it as a drug.
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It is a bad feeling, when the scan and other evidence shows that your MS has changed up a gear. Accepting that unwelcome fact is always going to be a painful business, but it’s a necessary step before deciding how best to respond. For me, it felt a bit like being diagnosed all over again. I hope you find a way forward that feels right for you.
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I’m so confused they’ve just recommended Cladribine, Kesimpta and Ocrevus. They all seem really heavy handed considering no relapses 