Hi folks, does anybody have experience of plegridy and any other DMD?
I started on Plegridy in August and have been struggling with horrible side effects ever since.
I spoke to my MS nurse who has suggested Avonex has an alternative.
This means changing to a weekly jab but she says it may mean less intense side effects
Im nervous to do this in case im jumping out of the frying pan into the fire…with weekly horrors instead of fortnightly
Jackie x
Hi Jaquar
I don’t understand why your choices seem to be one or the other form of betaferon 1a - i.e. Plegridy or Avonex.
Why aren’t you being offered any other options? Such as Copaxone which is another injectable and has a similar relapse rate to Plegridy and Avonex but often gives people less side effects. Or Tecfidera, which is a daily pill and has a much better relapse reduction rate. Or Fingolimod, another pill. Or better still, Tysabri, given by monthly infusion and 70% reduction of relapse rate.
Perhaps you could talk over your various options with your MS nurse, or your neurologist? And try to figure out the reason why you’re only being offered these two options (which to me don’t count as two options really, it’s the same drug delivered in a different form)!
Sorry I don’t seem to be answering your question precisely. I have had experience of Avonex, Copaxone, Tecfidera and Tysabri. Unfortunately I’m one of those rare people who seems to have various side effects which mean I can’t take Avonex, Tecfidera or Tysabri, and Copaxone stopped working for me. So I can’t give you much help as to experience of being on the drugs, I just think you should have more options open to you. And to my mind, you should be on the drug with the best relapse reduction rate possible, depending on what your system can tolerate with regard to side effects.
Sue
Tecfidera.
Discussion ends (unless there is something we remain unaware of).
Ditto
min xx
Hello.I am a new to this forum. I have just started a treatment and been offered only Plegridy.i don’t have any side effects for except a skin allergy reaction on day 4 after the injection. It fade away but is still visible. I’m going to talk to my MS nurse on Thursday about it.
I asked about tecfidera and flushing (red face) was said to be quite a side affect.
im on avonex and and apart from a thumping head ache and flu like symptoms 4/5 into injections, no other problems.
if you are very run down or have a cold. you may get a headache but now it doesnt bother me unlesss im already sick
it can be for some (a small minority) but is easily dispelled by taking an off the shelf anti-histamine.
i.e. it is as bothersome as slight hay fever
I can see the nurse’s point (they’re the same stuff, as I understand it, so moving to a once-a-week delivery might retain the benefits while evening out the unwanted sides).
But why just fiddle about with a drug that you are known to react badly to, when there are alternatives that might give you at least as much benefit while avoiding your known difficulties with that sort of interferon? I would definitely be asking about a different drug rather than the same drug with a rejigged administration regime. Of course there might be good reasons that your medical advisors know and we don’t as to why you are on the best drug for you. If so, they will explain why, no doubt. But it is worth asking them the question, that’s for sure.
Alison
Hi Paolo,
I like your attitude haha, the problem I’m having is I’ve only been offered avonex until next MRI as neurologist feels this is less risky, fewer side effects. I refused as I wanted to hit this with something like Tecfidera or Lemtrada. Do you have any suggestions as I feel both neurologist and ms nurse gave the impression as they’ll decide which I’m not happy with. I know they are the professionals but I also know what I want and that I’m relapsing a lot.
Cheers
Kellyann
Kellyann.
I was on Plegridy to begin with and after some truly awful side affects, I was adamant I wanted to change to Tec. (thanks to Paolo’s fantastic informative posts). My Neuro was hesitant too, but I am an assertive lady and (can be quite formidable if the need arises!) stood firm. 
Calm, assertive and polite is always good. I was insistent that, when I chose my first drug, it was not an informed, educated choice as I had been just handed lots of glossy Pharmaceutical brochures and told to “take my pick”. Now some months later and having done a lot of research, I was making the decision to change my drug of choice. I was so determined, I was prepared to tell her that I would stop taking any medication, rather than stay on that first one. I was fortunate that she and I seem to have a good understanding and respect for each other.
Don’t be in awe of any of these professionals. The MS nurse is just that, a nurse, and has no jurisdiction over you or your choices. Your Neurologist is farther up the Hierarchy and is the person who writes your script, but he/she cannot force you to administer a drug you are unhappy with, but ultimately, the choice should be yours. I can only suggest you next see your Neuro, armed with your knowledge and statistics, your awareness of potential risks etc, and express your determination. At the end of my consultation, before I was finally prescribed Tec, I did have the grace to say if it proved to be unsatisfactory for me, I would come back and hold my hands up and say so. 
Good luck.
Excellent reply Poppy. ‘Calm, assertive and polite’ is a perfect way to approach the professionals.
Sue
Oh gosh Sue, the ONLY way! Pee them off and you’ll know about it.
Hi Poppy,
Thanks for reply. I next see neuro in April and I am determined to get on one of the newer dmts. I really like him and feel he is only trying to look out for me but I’ve been weighting up pros and cons of all of them for over six months and just want to hit this ms hard. I mean why bring out these newer drugs just to offer the ones that have been around for years. I’ve only met ms nurse once and wasn’t impressed tbh as she didn’t seem to offer any advice once I told her I’ve been doing research and joined this forum. As well as this she was adamant that avonex doesn’t affect certain people’s heart when that was one of the reasons I didn’t want it. So as for being a specialist, all she needed to do was look up side effects but no she was right and I was wrong.
Anyway rant over thanks again
Kellyann
You may be right. Personally I think it comes down to cost and budgets. I have found there is an air of “I’m very important and you are just a lay person” with my ms nurse. I have only had dealings with her twice and I’m sure we can live happily without each other. Good luck for April and keep us posted on the outcome.
Will do, thanks again and hope you have a merry Christmas.
I was diagnosed and given the glossy brochures.
I flicked through them and saw the bright, coloured photographs of middle aged women hiking, mountain biking, picking up children and flying kites etc… and appreciated the full depth of the marketing bull5hit i was being exposed to. (Sometimes it is good being a bolshy, monochromatic male.)
I went to https://overcomingms.org/recovery-program/drug-therapies/exploring-your-ms-medication-options/
The above link gave me an introduction to my choices. I then performed my own research of the drug compound names, the branded pharmaceutical names and any and all study names referenced therein. I took notes, assessed the claims and proven results, i created a spreadsheet of which drugs met my ‘must haves’ and ‘would likes’ and drew my own conclusions.
I then returned to my neurologist and asked for their opinion before i told them of mine. I would recommend you do the same.
‘Calm and polite assertiveness’ is all well and good, but i prefer to also illustrate quite clearly that i am very well informed and that my opinion is not to be dismissed. If your ‘experts in the field’ tell you something you do not like, you should challenge it.
Ultimately you are a team; a team which needs to work together; a team which has you as the greatest stake holder.
I can tell you what i think you should do, but i do not know the full facts of your circumstances. And well… the other members of ‘your team’ do not, cannot, truly know the full extent of your circumstance either.
Good luck. Fight the good fight and always come into these forums with any and all questions and concerns.