Hi all, I’ve got a dx of RRMS, but based on one cervical lesion (albeit a nasty one!) a positive lp, some nonspecific brain lesions and symptom history. I expected most recent MRI to show new lesions, but it didn’t.
I’m reluctant to wait for another relapse and neuro has agreed a DMT would probably be appropriate, but says first line only and one of the beta interferons… He’s going to see me again in six months to see how things are going.
I’m skinny and thought repeated injecting might become an issue so Plegridy would be best - am I right? But the more I read about Plegridy, the more worried I am about side effects, including depression (I’m sort of depressed at the moment - as in sobbing uncontrollably, but it’s mostly triggered by my symptoms) Do both Avonex and Plegridy have the same degree of side effects?
Can anyone advise which one I should go for?
And, if I don’t get on with the beta interferon, does anyone know if you have to have a break between finishing it and starting, say, Tec?
I would recommend (in the strongest possible terms,) that you tell your neurologist, either:
get me on Tecfidera or,
refer me to a different neurologist.
But this is only my opinion… for what it’s worth… but do not delay or wait another six months!
Being skinny is no bad thing (in fact i think it is a good thing).
Your starting DMT is not only ‘probably appropriate’, it is ABSOLUTELY ESSENTIAL to helping you secure a healthy and active future.
Do not fear any side effects you read about; they are mentioned only out of legal obligation and are simply a shopping list of worst case scenarios, most / all of which will not concern you even in the slightest.
I completely understand what you are saying, but from what he said, most other neuros wouldn’t even be giving me beta interferon at this stage as we don’t have a clear picture of what is happening with me yet. I will ask my MS Nurse to double check what I can have though, but I’d still like the info on the beta-interferons.
I also plan to lobby really really hard to go straight to Lemtrada should I have another MRI provable relapse.
I really do understand Paolo! I’ve read a lot on here and seen your well reasoned and researched arguments re Tec. That’s why I haven’t really asked about Tec on this post, you’ve already educated me on the subject through your previous answers to everyone else
I will be double checking my eligibility for Tec, and no, that’s not a precise quote. And I really rate him as a neuro. He’s already my second opinion from someone who wanted me to wait for another clear relapse before getting any treatment at all. Could you explain what motivation you think a neuro would have for recommending Plegridy rather than Tecifedra other than the best interests of his patient?
I don’t want to go into all the ins and outs at the moment of my personal situation on here, but I would like to know if I take a beta interferon and then for whatever reason change to Tec, does there have to be a break between them, and if so, how long?
Could you explain what motivation you think a neuro would have for recommending Plegridy rather than Tecifedra other than the best interests of his patient? [/quote]
The ageless constraints and conflicts of interest: Bureaucracy and budgets.
if I take a beta interferon and then for whatever reason change to Tec, does there have to be a break between them, and if so, how long?
yes. the duration will probably depend upon the beta DMD in question, for how long it was taken and why it is to be curtailed.
Good news (of sorts) that you’ve moved from a CIS diagnosis to an RRMS diagnosis. Somewhat frustratingly unless you can get the “active” RRMS label (two episodes in two years) under the NICE guidance the only drugs available are those which could be prescribed for CIS - which is unbelievably frustrating. If you get the “active” label then you should be able to push for Lem or tec - whichever you prefer as both are licensed as first line treatments for active RRMS (although some neuros may be more willing to prescribe tec in first line). As you know, I was lucky and had my neuro support me for Lem as a first line treatment despite only mild symptoms (an episode of numb toes).
Probably a silly question, but is there any way you can use your clinical history to push for a diagnosis of active RRMS if the MRI evidence isn’t there?
Either way, wish you all the very best with whatever drug you land on.
I am skinny too, so Avonex was a good choice for me (not that I had any choice!) because it is injected straight into the muscle and does not come with the site reactions that some of the other injectables that go just under the skin can cause - particularly when a person does not have much flesh on her bones. I used to think site reactions sounded very trivial things until I started to hear about how horrid and troublesome they could be, and I was glad not to have had to deal with anything like that.
Avonex did a good job for me for years and years. Eventually my MS raised its game and I had to upgrade DMDs, but Avonex was a good treatment for me and did a good job of keeping my MS in check for a long time.
Oh yes - you asked about wash-out periods. I only had a very short break between Avonex and starting Tysabri - but bear in mind that this was 5 years ago, and best practice on these matters might have moved on since then.
Lem is available on the NHS as a first line DMD for active RRMS (same criterion as tec). However, given some of the irreversible side effects not all neuros are willing to prescribe it in the first line in less severe cases. If you have a diagnosis of active RRMS and want Lem as a first line treatment then it may be worth getting a second opinion/ referral to a neuro more willing to prescribe Lem in the first line. No comment at all on what is the “best” first line DMD. Lem is the more effective statistically but has a higher side effect profile and, as ever, stats are only part of the story - key is any individuals response to the drug.
OK so a ‘thank you’ and an apology for being snappy to Paolo.
After this exchange, I contacted my MSNurse and said unless there was some clinical reason relating specifically to me that I was unaware of that means the beta interferons would be more effective for me than Tec, then I wanted Tec.
She said as far as she was concerned that was fine, that she didn’t know of any reasons that could affect my choice and, pending my blood test results and the letter from the neuro, that is what we will go for.
Now just the waiting. My lymphocytes are often low, I hope they were in normal range this time.
Thanks Alison, I asked my nurse and she said that Tec leaves your body very quickly, which surprised me, so the washout periods don’t seem to be an issue.
Oh yes, and he said six months to me at the appt, but the letter I got yesterday is another appt a year from now Just trying to get rid of me out of his consulting room perhaps?!
Sorry Carole, I think I’ve confused you. If bloods are OK then Nurse thinks I can be on Tec within 3 weeks. It’s my follow up appointment with consultant that is a year away. Nurse says that is standard to work out if DMT is working. But he did say 6 months when I saw him the other day which is why I said that in my OP.
It is true. Tecfidera remains in your system only for about 16 hours!
That is why new users shouldn’t be too anxious; if intolerable side effects (as unlikely as they are) should arise, they will last less time than a hang over.
All air breathing organisms use a mechanism called the Krebs / Citric Acid cycle to release energy from their cells. One of the products of this cycle is Fumarate. (This is also the food additive E297, but don’t let that put you off).
Tecfidera is Dimethyl fumarate which (despite the dimethyl component) makes it very similar to the natural Krebs fumarate. It is therefore expelled from the body in the same manner, as breath vapour and water waste.
Just trying to get rid of me out of his consulting room perhaps?!