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Catherine

Plegridy v Avonex

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Catherine

Hello everyone, 

 

I hope you are all keeping well and cool in this heat. I haven't been on here for a while, the last time was around the time I was going to start Brabio in January. Briefly, I was taken off of Tecfidera after having a very low lymphocyte count, prior to that I had been on Avonex for 10 years. It was suggested that I try Brabio, I wasn't keen but agreed. Unfortunately I could not face the really horrendous sounding side-effects - particularly the shortness of breath and increased heart-rate. I was sat at home with the nurse for over an hour trying to gather up courage but just felt unable to have the injection. Now I have been offered Avonex again, or Plegridy as an alternative. I really don't fancy either to be honest, and to me they feel like a backward step. But I have been told that I am 'doing well', a recent MRI showed no new lesions and unbelievably, some old lesions had healed - and that's after taking nothing for 9 months. However I feel I should be taking something, and maybe Avonex or Plegridy might be better than nothing. Have any of you experience of taking Avonex and switching to Plegridy, or even just taking Plegridy? I am frightened of the unknown effects of Plegridy, but feel a fortnightly injection might be a better option than a weekly one. If I can gather my courage, that is!

 

Thank you very much!

 

Best wishes,

Catherine

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Procrastinating
Stumbler

@Catherine , apart from Tecfidera, you seem to be circulating around the original CRAB (Copaxone, Rebif, Avonex, Betaferon) drugs which are now 30+ years old. These are now the first line, also the least effective, Disease Modifying Therapies ( DMTs) now available. There are more effective DMTs now available.

 

Whilst our MRI results are encouraging, I can relate to your need to be on some kind of treatment, as insurance for the future. This is understandable. The question is why, if you opt for a DMT, why are you not offered one of the more effective treatments that are now available.

 

The CRAB drugs and their alternative  formulations, have similar side-effects, which include injection site reactions and flu-like symptoms.

 

To summarise, you need to understand the available DMTs, so you can decide which one seems to suit you and why. You would need this as the basis for your discussion with your Neuro. Why not have a more effective DMT?

 

:moonieman:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Catherine

Thanks for your reply. 'Why not have a more effective DMT'? It's not for the want of trying, believe me!  I have seen two different neuro-consultants since I came off of Tecfidera last September, they both say I am 'doing well' and therefore they cannot justify recommending one of the more effective drugs. I have studied all the different DMT's, I even created my own 'for and against' table (see attached). I have really tried asking, both in person and in writing, but they won't recommend anything other than one of the injectables.  It may be because of other health issues I have, but they never say this, only that I am 'doing well'.  After 10 years of injecting, I really have had enough. It is very depressing and after a weekend of trying to decide which of the options open to me to take, I have decided to leave it for now. It might be a risk but the thought of injecting and having the flu-like symptoms again is making me feel anxious. Thank you for your time, stay well.

MS DMTs.docx

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Procrastinating
Stumbler

@Catherine , don't be put off. You can stress that "it's your body and you should have a say in what goes into it!".

 

You can use their justification against them. "I may be doing well, but I want to stay like that. I don't want to risk irreversible deterioration under a lesser DMT when better ones were available!".

 

And you could always use the argument, "if it was your daughter, which DMT would you suggest?".

 

I should imagine that the dosing of the better DMTs may suit you better, which may give you another compelling factor.

 

You may have lost the last battle, but the war isn't over.........

 

:moonieman:


John aka Stumbler (as I do fall over!)

Illegitimi non carborundum

 

"Life is not a journey to the grave with the intention of arriving safely in a pretty and well-preserved body, but rather to skid in broadside, thoroughly used up, totally worn out, and loudly proclaiming... "Wow! What a ride!"

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Catherine

Thank you for your encouragement. I have used the argument about whether they would prescribe avonex to a member of their family but the subject gets changed. I'm not giving up, I am just withdrawing for a while.

 

Take care and stay safe,

Catherine

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