I am getting more and moe confused on what type of Disease Modifying Therapy I should choose. I was formally diagnosed in august 2013 and have had two debilatating relapses withn 8 months.
I saw the MS nurse on Monday 30th, I was blinded by the science and choices. I have been sent home to consider the options and then call te MS nurse to let them know what I want to take.
Beta Interferon 1a
Beta Interferon 1b
or Copaxone.
daily subcutaneous injections, alternating day subcutaneous injections, three times a week subcutaneous injections or weekly intramuscular injections.
I have scared myself by looking up all the different drugs side affects on google but I feel only those who are on the meds can realy know what to expect. Any advice would be gratefully received xxxx
I will lay my cards on the table and say I’m not on DMTs (DMDs), BUT, I can say the reason you’re given a choice, and not just told which one you should be on is there’s no overwhelming evidence in favour of one, more than any other - if there was, they’d be failing in their duty not to advise that one. So it really is down to patient choice which one they feel will best fit in with their life.
Google a website called MSDecisions. You can rate what your priorities are, when choosing a drug, and it will suggest which are the best fit, according to the priorities you’ve said. You can also fiddle about with the priorities - e.g. if you didn’t mind swapping a few more side effects for less frequent injecting, you could see if it would make a difference to which one comes out tops for you.
Asher Ms decisions is a good starting point. I have been on 2 DMDs over 10 years (copaxone & rebif). I find copaxone suits me. No side effects and easy to get into the routine. Everyone will have a different story as DMDs are as unpredictable as ms is. Looking back, I asked today then I would have chosen copaxone at the beginning. Neil
I went for Copaxone on the basis that it was going to be easier to build a daily injection into a daily routine, The lack of a flu-like side effect was secondary
The downside is that having Copaxone rather than an interferon-based DMD is that it shuts you off from a certain 2nd line DMD. For me, Copaxone has done just what it is supposed to do and reduced the frequency and intensity of relapses.
Hi Asher, I was diagnosed January 2013 and started rebif in may. I too was so overwhelmed by the drugs and being needle phobic was like a horror story. I was sent by my neuro at shampton general to a dmd day wherei met others who were going to start them. We were allowed to play with all the needles,devices that they came in etc on fake skin. This really helped. We had a talk about each one too. Is this an option for you? I chose rebif and the rebismart because I couldn’t bare daily jabs and the intromuscular needles are longer and thicker! But, on the other hand I had to then take the risks of the dreaded side effects. Good news for me, not one! Yay, I just had nasty red marks and bruising for a few weeks but nothing now. At first I couldn’t press the button on the mschine ( I could do it all when playing at the hospital!), my hubby had to do it. I now do it snd it’s okay. I am seeing my neuro monday for.my yearly review and will be asking about the new oral med that has been liscenced. Good luck on your decision - Dawn x
It’s worth pointing out that your decision isn’t final - you’re able to change your choice if things don’t work out. I started out on Betaferon but hated it, so I swapped to Rebif and that was brilliant for me.
Also worth pointing out that you don’t always have a choice. Here I was given a booklet of all my options but when it came down to it they start everyone on the cheapest option (extavia beta interferon 1b) and if you don’t get on with it, only then do you have other options.
Well, I suppose that was inevitable. Try to avoid knocking any particular DMD, and someone asks the question. I do not advocate any one DMD (or none at all) - I just say why I chose one particular one.
The answer, puddinglover, is Gilenya (otherwise Fingolimod).You can only have this if you have tried an interferon based DMD and it has not worked. But, I am glad that you asked. As a result, I found out that Copaxone can be continued into SPMS if relapses still occur - which may well apply to me depending on what the MS Nurse says after I see her next month. Guess I have to get all my facts ready.
Actually, red lou, depending on where you are, you really do get a choice. I chose Copaxone, and there was no pressure on me to change at that time (or since).
So, Asher, it really is a case of “your body, your call”.
Thank you everyone for the comments and suggestions
its been a great help xxx
I have looked into each drug… the side effects… the frequency of injections… and after looking on MS Decisions I am nearer to my decision. I will call the MS nurse on Monday and tell her what I am thinking of starting on.
My next challenge is to get back to work. My GP, neurologist and Acess to Work have all found me to be fit for work… My line manager is not so keen on me returning. I am a Health and Safety risk apparently!!
Hi Asher, Just to add I am on Rebif and no fluey side effects. I very very occasionally feel a bit rough but not often. Also very occasionally very sore eye or eyes which no one understands - but I blame the rebif!!! Good luck and hugs Min xx