Forum

What to do.....

Hi all

Last friday I had a appoiment with my neurologist, I told her all about the relapse I had last August, then she did the standard test on me, sat me down and said I'm now eligible for treatment has I've had 2 relapses in the last 2 years. 

She spoke about the different dmds a bit and booked me a appointment with my nurse to talk about it more, I just said I will have to look into it and have a big think about it, Im thinking to myself thats it is such a huge decisionso I need all the advice I can get. I've been looking into rebif the most so far. I know very little about dmds so thought it would be a good idea to post on here! I don't even know if I would have to pay for them? :s

Any replies welcome :) 

Callum

Hi Callum, it is a hard decision to make but as spudz said look on msdecisions it really helped me. I choose Avonex as it is only once a week, I did get some bad side effects at first but as long as I take paracetamol and ibroprufen before I inject I feel fine. Good luck with what ever you decide. Karen

Ps different trusts vary about prescription charges, I have a yearly pre-payment as I take quite a few meds this covers my dmd’s too

Hi Callum - I was on REBIF for 2.5 years so if you have any specific questions please feel free to ask (although everyone is different!) I went to a day at the hospital were they told us all about the different DMDs, we practiced injecting on fake skin and using all the different types of auto-injectors etc etc. They also put on a lunch which was actually the best bit!

My REBIF was delivered by BUPA once a month, along with a sharps bin (they also collect your full ones) and I didnt pay for any of it - as karen said different trust vary so I dont know if yours will be different.  

I only came off it as it stopped working for me.  Good Luck with your decision! 

Hxx

When I started I looked at all the info on the various options, but when I got to the hospital I was told I had to start on Extavia as that was the cheapest by far, then if it didn't agree with me for whatever reason, then I could try the others. As it is, I've been fine on it for the last six months. I'm happy with that.

 

We don't pay for prescriptions in Scotland so I don't have any charges.

As spudz said I would go on ms decisions before you see the nurse to decide which you think you want.

My choice was made purely on the side effects I didnt want, and the not wanting to do the muscle injection.

When I saw the nurse I already knew copaxone was the only one I wanted out of choice, but as amylou says in reality some people arent offered the whole range of options.

I now have copaxone,I have nothing to do with the scripts and it all just gets delivered to the house and the copaxone nurse came to the house to train me.

At the end of the day you will have to inject yourself  which no one would do out of choice, but if you work through the decision tool  you can see which one suits your lifestyle the best and how the options fare against what is and isnt important to you from the side effects point of view.

I wish you well with whatever you choose.

Pip

The ms decisions site helped a lot :) I looked through everything in detail and I think either rebif or copaxone would suit me best, im not going to rush into any decisions just yet, I still need to actually decide whether I want to start of meds or not.

Thanks for all your responces :)

Callum

Hi Callum,

It is a big decision deciding whether to go on dmds or not. I was in that position 3 years ago. I chose to go on rebif. My reasoning was because they’re subcutaneous injections, three times a week. This means that I can do it Sunday, Tuesday and thursday and have Friday and Saturday nights off.

I knew the risk of flu like side effects but decided to give it a try. I have been lucky and only had flu like side effects once. I do get a headache but if I get to sleep before it starts and take pain killers, it’s fine.

I didn’t have to pay for my prescription originally when I lived in Leeds. But I moved to London a year and a half ago and I now have to pay a prescription three times a year.

It was the right decision for me to go on rebif. I had 5 relapses in 10 months before I started on it but I’ve been relapse free now for almost two and a half years. I also follow the swank diet and take vitamin D3.

Can I ask why you’re called calibiza?!

hi callum

 

i had to make that choice 3 years ago and i chose copaxone because it isnt contra-indicated to LDN. i now take both.

(Louise - i reckon calibiza is a mix of callum and ibiza - may be wrong though)

 

carole x

Hi, you can also take LDN with beta-interferon. Many people do now, since the 09 conference that cleared up the old and out of date information. I don’t know about Tysabri, but there was one person on the old board who was taking LDN and Tysabri together with the blessing of their neuro.

I’ve been on Rebif for 12 years this year. The new Rebismart machine is excellent and if you are at all scared of needles, you never need to see one. The fluey side effects may not happen - they didn’t happen to me and I was very pleasantly surprised. It’s worked very well, although I have just had a relapse, but the first in 3 years and it wasn’t too bad.

x