I have my consultation next month to decide what treatment I’m going on for rrms. I have no idea what I’m walking into apart from I can decide between injection and oral tablets. I am certain I’d prefer the latter. Can anyone give me advice on what’s best with least side effects? Thabks
Hiya, I’ve been on Avonex for the last 6 weeks and even though it involves injecting myself once a week, I would say it’s going quite well so far. My nurse recommended Tecfidera, which is tablet form, but I didn’t feel I wanted to try them as I already have a delicate digestive system. The injection pens really are easy to use and I’m already feeling a bit better fatigue wise. The initial side effects have been tricky (shaking uncontrollably and having intense flu pains) but I seem to have a good routine now. I make sure I have paracetamol and hour after my injection and ibuprofen 2 hours after that and I tend to sleep through the side effects. I can honestly say that I have found it easier than I had imagined. I think deciding was very stressful but if you can get through that and make a start on the treatment, you really will start to feel the benefits. Good luck with it all. It’s certainly an emotional time.
When I had a choice about 4 years ago I was given the choice of injections or Tecfidera and the neurologist said I should choose Tecfidera because you just take 2 plastic tablets a day and then have your bloods taken every 3 months.
Been on them for 4 years and had no relapses and have no side effects, although some people on this site claim they have side effects.
Ocrevus seems to be the new drug on the block but my neurologist will not put me on it because I have had no relapses since going on Tecfidera.
There is a post on this page about Ocrevus with different opinions.
What you are walking into is a new world where the chances of a relapse is much reduced.
The choice is yours, you have got two different opinions now and I am sure you will make the right choice.
It is a fact that people make the correct decision in life correctly 80% of the time.
Just be happy
I’ve been on Tec for a few years now. The main side effect I get is a runny nose. It’s been a positive experience so far for me.
But a thing to bear in mind is that we’re all different, and we’ll all react differently. One person might have no side effects, another person might get lots. So the advice I always give is that no decision is final. If you don’t get on well with one, either because of side effects or it’s not effective, then you can always swap to something else. It might help to set a probation period - for example, give it 4 months, then review how you’re doing.
Hi Blagaman, I’ve been on Tec for just over six months now. I found week three the worst with stomach pains and diarrhoea, but it seemed to settle down by week 4. The only thing I get now is the flushing, it’s very random - doesn’t happen every day and when it does lasts about half an hour. Basically you look like you’ve got really bad sunburn. But as Dan says everyone is different, I now know a few people on tec, one has had no side effects at all, one had to come off as white blood count went too low and the rest I would say were like me. For me I couldn’t face the thought of feeling like I had flu which is why I chose against the interferons. I read all the information on the MS Society and ms trust website asked a few questions and made my choice. I would agree with Joey that I also found it quite stressful, after been told I wasn’t eligible to facing the decision - after all you have to comit to taking your medication no matter what form it takes, it may be that your lifestyle suits one over another.
Have you looked at https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid ?
It might help to compare the different options.
If you’ve been given the choice of injectables or tablets, I should think the injections are Beta Interferons or Copaxone and the tablets are Aubagio or Tecfidera.
Injections sound a lot scarier than they are and if you want an easy life with few side effects, then personally, I’d opt for Copaxone. It’s a subcutaneous (just under the skin) injection, with a tiny needle and really very few side effects so long as you rotate injection sites. The problem with all the injectables is that they have relatively low relapse reduction rates, of 30 to 35%.
The same sort of relapse reduction rate is the expectation from Aubagio. I really don’t like the look of the potential side effects from that, and for a 30% average relapse reduction rate, it doesn’t seem worth it.
Tecidera is certainly the best option of the tablets, it gives an average relapse reduction rate of about 50%, So is much more effective than the injectables or Aubagio. Some people do have quite dodgy stomach issues at the beginning, but so long as you sandwich the pills in between 2 lots of food, they’re often not too bad. If you are prone to upset stomachs, you can ask to taper the introduction of the pills more slowly.
I’ve taken Avonex, Copaxone and Tecfidera. Unfortunately, Avonex and Tecfidera gave me side effects that meant I had to stop the drugs. I took Copaxone successfully for 5 years though with no side effects at all.
I suggest you look at all the first line drugs, take other peoples experience into account, but remember that just as everyone experiences MS differently, so is their reaction to drugs. And don’t forget that if you start one drug and just don’t like it, or experience bad side effects, you can swap to another drug.
I have recently started Ocrevus .I have never tried any other MS drugs prior to this .Consultant did initially discuss Lemtrada but after discussion with his team felt Ocrevus was a better option.I think probably due to my age ,newly diagnosed (although previously misdiagnosed for yrs),symptoms and MRI result.
The decision to start any drug therapy was very anxiety provoking .The first half dose 300ml infusion was pretty intense and I did experience some side effects being head aches and mild flare up of old ms symptoms (anxiety, fear of the unknown and me generally a worrier added to the stress which didnt help) ,however side effects reduced after 7 days with help of regular paracetamol and ibuprofen.The second half dose 300ml infusion 14 days later was Ok no side effects to speak of .The second infusion went in slower at my request and I made sure that I kept hydrated so this may have helped.
I cant say I have noticed a “miracle”,but some of my ongoing symptoms appear to be less problematic and of course Ocrevus is to help reduce/slow further progression .
Any decision will hold anxieties but do what feels right for you and dont be afraid to ask questions to support you in decision making.I found that talking to others with MS has been so supportive .
Next dose is Sept 2019 this will be a full 600ml dose given over 6-8 hrs and thereafter every 6 months.