Forum

Advice please :)

Hi

Just looking for some advice. I have been trying to ask MS Nurse but she must be on hols this week.

 

Vit D Levels:- Combined reading of 125.3nmol and that is with taking 5000iu of Vit D most days the odd day I have forgotten should I up my dose perhaps every other day seeing as the sun is now here?

Painfull Injections:- I use Avonex and after 3 months my MRI showed no further lesions so I have stuck with it and we are approaching my one year anniversary of taking it and although I have days were I have irritants nothing major enough for me to consider swapping as it may be that Rebif wouldn't stop the irritants anyway.

Normally I don't have problems injecting although a couple of times I have had to try twice to get in. However, last sat was a disaster I had 4 attempts before I could get the needle in far enough to inject the Avonex. I am hoping a one off but I am not sure why it was so painfull, after breaking the skin it just felt like I was hitting something hard and really painfull. I am now feeling really nervous about tonight.

Thanks in advance

Tracey

Hi Tracey

My vitamin d3 level was 140 and i take 5000iu vitd.

Perhaps you could up your intake every other day to 10,000iu to try to boost it up a little bit?

Try this a little while then have another blood test to see what difference it has made.  If it is still low then perhaps you need 10,000iu each day.

Hope this helps.  I am on rebif so can't help with the avonex - sorry.

My nurse said my levels were fine at 140 but it was my decision to take 5000iu.  It's a personal choice really.

I am finding my injections of rebif a little more painful at the moment with the weather being hot - perhaps you could try using a cold compress on the area before you inject?

Best wishes

Teresa. x

Hi, you try calling the Avonex helpline, I have found them helpful

 

Kathryn x

I was on Avonex for more than 10 years (although I never used the auto inject thing, so I don’t know anything about that.) Usually the injections were fine, no problem, but just occasionally you hit a bad spot (unfortunantely our thighs do not come with a detailed wiring diagram.) For sure, I swore and threw the bastard thing in the bin unused more than once, but that’s OK. The longer you are in the routine, the more comfortable you will get with the process and the more easygoing you will get with the occasional problem. You’ve been on it a while now and are doing OK - there is no reason to suppose that it is suddenly going to get way more difficult. You’ll be fine.

Alison

x

Thank you for your posts. I don't have the Avonex pen unless that is how they describe it. I attach the needle to a pre-filled syringe and have to inject it myself. I know rebif is auto inject but I was trying to give myself the option of changing by starting on the lowest dose of DMD.

Thanks for the tip of avonex helpline will call them tomorrow if I have a bad time tonight. 

There has been some good news this week besides the weather improving (not so good in the cold and damp). Our critical insurance on our mortgage has paid out which I wasn't expecting as still work full time and only got diagnosed after having my first symptom in Feb last year. Lots of people have said you must have suffered before but no nothing but because they thought it was a disc I had a scan guess what they found! 

I now feel like a huge weight has been lifted as if I need to go part time in the future we have options as we are currently looking to move to a bungalow just incase things go downhill in future years.

 

Thank you all so much for your comments very much appreciated.

Tracey

x