Last reply 1 week ago
Recent convert from Limboland

Hello all – long time lingerer but first time poster!

I’ve just been ‘officially’ diagnosed with MS but was CIS for nearly two years so Dr wants me on some dmds as my last MRI had A couple more lesions. I have been offered Aubagio and Tecfidera (as well as some injectables – ummm no thanks!) and my question is to you all is how long should I expect to wait for the drugs. I have to let my MS nurse know next week which one I’ll pick – will i get them this side of Xmas?

I received an appointment through on Fri to see nurse in May – will I have to wait until then?

I’ll ask the nurse this when I call her next week but just want to have an idea!

Taaaaaaaaaa

Love you all btw – love this forum 💓

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grandma
1 week ago

@msimon – welcome to our exclusive club. Entrance is free, sense of humour helps (lets face it if we didn’t laugh we’d cry). I’m one of the old codgers dxd 25 yrs ago, was on the very first DMT as a trial patient (Avonex- Beta Inferon) was on it for 23 years, it stopped working last year (they did tell me when I was dxd that rrms would become spms in 10-15 years, took 23 so not complaining) so am on Tecfidera, have been for 11 mths, fantastic only having to take a tablet twice a day instead of sticking a ruddy big needle in myself once a week! Only have experience of Tecfidera so you need to do your homework, find out all you can about drugs, side effects, etc., spy glass in top left hand corner gives you info (all anecdotal but never the less useful) on everything. My personal experience with Tecfidera is great, usual problems as expected first few weeks, after 8 wishes all plain sailing and were on month 11! As for when supplies start, almost as soon as you have made your decision (certainly with Tecfidera, haven’t had the other so don’t know) if you go for Tec, nurse has to take blood and urine samples every 3 months, but drug is delivered by post, doesn’t have to be kept cool (had 23 yrs of full fridge, having to arrange for cool place for it to be left in if I wasn’t going to be in etc., so I assume when you see your ms nurse next week and you start the ball rolling it could be before Christmas, but a word of warning, I had exactly the same thing a year ago, drug had been delivered and was due to start. Delayed by 10 days, didn’t want possible side effects, worse in first 3-4 weeks to ruin Christmas and new year, so started on 1.1.2018. Suggest you do the same. I’m canvassing for our friend @highlander who is trying to get 12 of us misers together to do a calendar girl type calender for next yr to raise money for shift ms, were on 11 and need 1 more fella, how are you fixed, read his post about being famous. 👍😛😜😍


stumbler
1 week ago

Hi @msimon and welcome.

Your MS Nurse is the best person to advise you on delivery times, but they may not be 100% sure. But, you may want to follow @grandma ‘s advice and enjoy Xmas before you start.

I’m providing a link below of all the Disease Modifying Therapies (DMTs) that are available, ranked in order of effectiveness, so this may help:-

https://www.mstrust.org.uk/about-ms/ms-treatments/ms-decisions-aid

Always here to answer questions.


vixen
1 week ago

Hello @msimon. Once you e made a choice, then had relative blood tests etc it should be pretty quick. I started Tecfidera but waited until I had holiday due, just in case I suffered with effects. It was very exciting to get the DMTs delivered to my door! Whichever you choose, I would almost certainly wait until the New Year. New year, new start and all that. In the meantime you can focus on making preparations for encompassing the DMT into you daily life.cefinitely look at what others have had to say about their choices by using the search glass above. All the best 🙂


lightning87
1 week ago

Hey!! Welcome officially to the gang. At least now you can start meds rather than being in limboland with no drugs! My nurse put an order form in and the drug company called me for delivery. I postponed until I got back from holiday incase of any side effects but apart from the very odd flush, Tecfidera is fine for me. Will see next year if they are doing the job after my annual MRI. Anyway, after bloods deliver was all pretty quick but yeah, get Xmas out the way and then start like the others have suggested. Enjoy the festivities and know 2019 will be the start of dealing with this head on xx


petedub
1 week ago

@msimon. i am exactly the same situation you are in. just got diagnosed in the summer and officially with lumbar last thursday. neuro wanted me to go on avonex or copaxone but researched both and wasnt for me. im going to start on tecfidera in january. still trying to get my head round it all😑


msimon
1 week ago

@petedub oh we were ‘officially’ dx on the same day! 💃 The lumber puncture was the tipping point for me as well!

Thanks all – I didn’t realise that things would moveso quickly! I assumed that it would take months to get going. Anyway I’m going to let the nurse know that it’ll be Tecfidera for me as The side effects don’t seem too bad (PML is closely monitored which is reassuring!).

I think I’m gonna take advantage during the During my time off over Xmas to adjust (well as much as you can adjust in 1.5 weeks to Tecfidera!). I’m following the OMS plan (…..ish) and tbh I’m dreading Xmas as i usually overindulge but hopefully this will give me a good excuse to keep on track!

We’ll see I guess 🤣


fraction
1 week ago

Hi @msimon, I laughed at long time lingerer – I’m terrible at replying to even my own posts, as I only log in once every few months.

I got diagnosed in July and on the same day was told I should start on Tecfidera – I was never given any treatment choices, the MS Nurse just said he thought it would be the best one for me and that was that. I did some research and was happy to see it was a tablet instead of a needle and the side effects seemed to me as if they weren’t going to be too bad, if they were to happen at all.

I had a blood test straight after that appointment and my Tecfidera was ready to collect within a week. I also have to have a blood test every time before collecting my new batch. I’ve only had two collections since and my WBCs are fine. Also didn’t have any side effects at all ever, even on an empty stomach, though recently it’s started to give me tummy aches (after a meal as recommended). I still haven’t got my head around the whole diagnosis and find it unbelievable that I’m on DMDs. It all happened very quickly and I’m still adjusting.

I was getting married at the end of July, so waited until the day after my wedding to start taking them in case I got ill. What a start to married life!!!! I agree with everyone I’d say wait until New Year’s Day, it’ll be a good time to start and you’ll easily keep track of how long you’ve been on it!

Fraction


stehrface
1 week ago

Hi and welcome!

I think it depends on your region. I had to see my neuro nurse, then a specialist nurse at my hospital, before actually starting on Tec. I believe it took a couple months between seeing my neuro nurse and actually starting. For reference, this is in South Norfolk, my hospital is the Norfolk and Norwich.
I hope your process goes quicker!!


brian-h
1 week ago

Hi @msimon
I have just been diagnosed with RRMS and went to see my ms nurse and she gave me all the dmt options (loads of info).
I decided to go with Tecfidera and my surgery took some blood yesterday to check before I start.
My ms nurse told me “about a few weeks “. Hopefully just after Christmas for me.
Good luck.


brian-h
1 week ago

Hi @grandma
You mentioned that you where told RRMS would become spms after x amount of years. First time I have heard of this (this is all new for me).
If this what happens ?
😑


stumbler
1 week ago

@brian-h , here’s some information about SPMS for you :-

https://www.mstrust.org.uk/a-z/secondary-progressive-ms


grandma
1 week ago

No not now, but you have to remember this was the case 25 years ago when there were no dmt’s and therefore no hope, and if they knew what type of ms you had, they could pretty accurately tell you what was probably going to happen in the future.

Things have changed dramatically. There are now a huge range of DMT’s that slow progression right down. They sadly don’t work well for all, but we have found if one doesn’t suit or doesn’t appear to be doing the job, they will swap you to another. This was unheard of 25 years ago, so though I wouldn’t wish the diagnosis on anyone, even my worst enemy, now is a Good time to be dxd with ms, you stand a far better chance than we old farts ever did.😍


grandma
1 week ago

Sorry the above was in answer to @brian-h


brian-h
1 week ago

Thanks @grandma

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