Hi everyone Well D day it has been. I’ve been diagnosed with RRMS (negative Oligoclonal banding though). Am starting Avonex soon and would appreciate hearing from anyone who is on this as I’m not sure what to expect, Thanks so much xx
Sorry to hear your news
It’s never good news, even when expected, but it’s definitely best to know, although it might not feel like it for a wee while
I’ve not been on Avonex so can’t really help with that, but the initial process is probably much the same for it as the others. It takes a while (4-8 weeks sometimes) for the funding to go through and the prescriptions and logistics to match up, but once that’s done you will most likely get a starter kit delivered to you with all the necessary equipment (and various bits of extra unnecessary PR/marketing stuff) and you will have a nurse visit you to show you how to do the first injection. Thereafter you are pretty much on your own (albeit with the nurse checking in occasionally in the beginning) and will have regular deliveries from the logistics company - they will phone to confirm deliveries, check if you need any equipment, etc and basically make sure you have everything you need. There will probably be a support line that you can phone for advice if/when you need it too.
Being on a beta interferon means that you need to get your liver function tested from time to time. For Rebif it is 3/4 times in the first year and 1/2 a year thereafter, but it may be different for Avonex. It’s just a blood test and no big deal assuming everything’s fine. Your MS nurse should be on top of this, but not always (I only knew to do this because of this site!) so keep an eye on the calendar yourself too.
I recommend stocking up on ibuprofen and paracetamol before the Avonex nurse calls - a lot of people get “flu-like” side effects in the beginning (although some people’s are very mild) and these really help to control them.
Getting that first delivery can be a massive blow - it makes it all very real So getting the delivery very soon after hearing the diagnosis can be a bit of a double whammy. Hopefully forewarned is forearmed… but if it is difficult, do try and hang onto the fact that the Avonex will hopefully help you to fight back!
Take it easy on yourself in the meantime - getting a diagnosis a bl**dy hard thing to get your head round You’ll get there though
PS I’m sure you’ll have seen this on here already, but just in case, you should remember to tell the DVLA and check out any policies you have that might have a critical health cover clause - MS is a payable condition.
Sorry to hear of your diagnosis. We have been ‘chatting via pm’ as we have the same neuro. I hope you are ok? I’m sure you have very mixed emotions at the moment.
I am also on rebif - same as Karen but she has given you great advice about the process.
Karen - my bloods have only been checked yearly at my neuro appointment (this might be the same for stardust too as we are treated at the same place) so thanks for that. We perhaps would be better to go to gp and get them done at 6 months as well.
Stardust - this is for a full blood count and liver function test just to test we are doing ok on the meds.
Good luck with it all.
Hi Stardust… sorry to hear about dx. As Teresa says, expect mixed emotions, from relief to shock and back again. Let the emotions come and go. It will get easier… promise.
I haven’t drug advice for you but just wanted to say I’m thinking of you and hope you’re doing ok hon.
Hi Stardust Sorry about your dx. Just wanted to lend my support and assure you that people are thinking of you at this difficult time. Take things day-by -day, don’t think too far ahead right now. Everything will improve, just give it some time. Thinking of you, Teresa xx
So sorry to hear about your diagnosis but at least you have some answers and can now start to get the help you need.
The first few months I’m sure are going to be difficult - even if MS was suspected, until hearing those words there has always been the possibility that it could all just be nothing or something else. Give yourself some time to come to terms with the diagnosis.
Thinking of you and just wanted to lend you my support.
I think annually is the norm Teresa and my neuro is even more blase. I only got mine done twice in the first year and only then because I asked! (Both done via my GP too.) When I said to my neuro that it was due again, he just sort of shrugged and said “if you want” or words to that effect. So I think they only increase the frequency if a test comes back high.
All of which reminds me - I need to sort a test out for myself!
Hello, So sorry that you have been diagnosed. I hope your treatment helps, when it arrives. Sending hugs, best wishes and support. Sam xx
Hi Stardust - welcome to the newly diagnosed club - not sure wether to put this… or this… or this… or (how I am feeling now) this…, but am defo sending this with a ((((hug))))
I was diagnosed on 22 August and it’s all a bit raw still for me even though I was half expecting it. At least now you have an answer for those problems and symptoms you have been suffering with and you can begin treatment. After much thought and unbias advice from my wonderful GP, I have decided to take part in a trial that was suggested by my neuro but am still waiting for the trial nurse to ring me to geth things moving.
I hope your treatment starts soon and that it is helpful for you xxx
Awww thanks so much everyone I feel a bit emotional reading everyone’s lovely posts. I must admit I feel a bit odd today- i feel like I’m a bit MS’d out if you know what I mean. I guess it’s just been all consuming. I do feel a smidgen of relief at times- at least I know what it is and can deal with it. Then about half an hour later I’m gazing around in a trance, a little shocked to know I have The diagnosis. I told my group board at work today that I have MS and they were great. Still doesn’t reduce the pressure of work (especially as I’m in the middle of a relapse) but knowing they’ll support me is a good start. I’ve been open with them since the first relapse, however I’m a bit concerned that they’re seeing me as a weakling at the moment so I need to be on form when I meet with my bosses tomorrow. We’re planning the next two year strategy and I’ve had some thoughts on how I can handle MS along with work- fingers crossed it’s met positively. My husband is being great. He’s no longer in denial and had even said he’ll learn how to inject me- I very much feel we’re in it together so I’m a lucky girl. I know he’s finding it hard though…I guess I’d feel the same if it was the other way round. I feel a bit rubbish so I’m turning in now. The specialist pushed my head down a tad aggressively yesterday and I can definitely feel pain where my lesion is in my neck, combined now with a strange sensation in my legs when I tilt my head down. I wish he hadn’t done that test !! Thanks for all the support- means alot to have people around who get what it’s like xxx
Hi Stardust, I was diagnosed in March and I commenced avonex at the end of May. To begin with the day I took the injection and the day after were awful even with paracetamol and ibuprofen. But over the course of about 6 weeks the side effects improved and now I take my injection on a friday early evening and I am fine for the rest of the weekend.no problems at all. I still take the paracetamol and ibuprofen though just to prevent anything from happening.
Like yourself my husband was taught to give the injection but hasnt been needed so far. The avonex pen device is really user friendly so much so that my 10 yr old tells me she could give it to me. I think she just wants to stick needles in me.
I can understand where you are coming from regarding your husband my hubby will admit now that he found it very hard to accept. I have even met some of his colleagues who told me although there are aware of my diagnosis they would not ask him how I was for fear of how he would react to them. He will now talk about everything and this has made things easier.
I took some time off work at the beginning because physically I would have been unable to work but when this improved I took some time “to be good to myself” as this is what my consultant told me to do. I am now back at work but I have reduced my hours to 20hrs per week and I am enjoying the extra time at home. Especially now since all three children are at schooll and I have the house to myself all day.
I guess what I am trying to say is allow yourself time to become accustomed to the diagnosis and be assured that through time things will improve.
Be good to yourself