MRI re-scan

Just out of interest do any of you take anything to boast your immune system?

I’m on B12 injections every 12 weeks as they found my levels were low during diagnosis and I take Vit D3 5,000 iu per day on the advice of my neuro. I try to eat healthily and that’s about it. I’ve been on Rebif up to now so haven’t felt the need to.

I’ve had a particularly bad year this year with relapses so I assume that’s what has compromised my immune system. The previous 3 years were no worse than any ‘normal’ person - in fact during those 3 years I had less time off than many staff at work who don’t have chronic conditions.

Tracey x

I had some B12 injections when i first started rebif, but this also runs in my family so its a combination of the two.

My gp also put me on a 3 month course of Vit D3 because it showed up very low in my bloods, do you think its worth asking the consultant when i go if i should be taking anything?

Just trying to write down everything i need to ask as i know it will be a while before i see him again.

Is there any other questions i should be asking with regards to new meds?

x

Snap! - my mum had pernicious anaemia so when they said my B12 was low and I mentioned that, they said there was no question about it, I had to have injections every 12 weeks :slight_smile: (It doesn’t help with the fatigue though )

I always try to think of the things that matter most to me and write them down so I can ask the neuro. For example if fatigue is a problem you could ask if the new meds affect that or if there is anything you could take to help with that. The lowered immune system seems to be a common worry here so maybe you could ask him about that and see what he suggests?

My neuro always refers me to the nursing team at the hospital re the meds and they give me the information sheets about them and answer any queries. I think they know more than him about the day to day stuff re the meds. He obviously knows about the risks etc (the big stuff) but the nurses are more knowledgeable about the routine everyday, how does it fit into my life stuff. They are also my first port of call when I have any questions throughout the year.

I hope it goes well, let us know

Tracey x

I was advised not to take anything to “boost” my immune system (like echinacea etc) because the immune system is what is doing the damage. Suppose there’s no point taking drugs to supress the immune system and then taking something else to boost it.

My GP just gave me advice about avoiding viruses. Hand washing, using hand sanitiser etc. The same stuff that was doing the rounds the time of the swine flu (sneeze into a tissue, bin it and wash your hands).

My neurologist explained that copaxone, rebif and avonex alter the immune system as opposed to suppressing it. So moving from copaxone to Gilenya will be a change because they work in different ways and Gilenya etc will supress my immune system.

Hi Kelly,

It is thought that because MS is caused by an over active immune system (in very simple terms) that taking supplements to boost it would be detrimental. That is why for example people with MS are advised against taking echinacea when they have a cold.

If your Vit D levels are low your GP has done the right thing in putting you on Vit D3 and certainly tell the neuro you are on it. By all means ask if he thinks anything else would help but do realise that most neuros don’t see a lot of value if alternative or complimentary treatments. Vitamin supplements really are only of use if you are actually deficienty in something , such as you are with the Vit D, but taking other supplements with the idea that they will somehow ‘boost’ you along is a bit of a furphy. The body is pretty well designed to absorb what it needs and then to excrete any left over so most people actually end up peeing most of their Vitamin supplements down the toilet!

As far as new meds go the basic questions are

  1. Why do you want me to take this?
  2. What effect will it have? What does it do?
  3. How long before I see some benefit?
  4. Are there any risk factors associated with it?
  5. What are the side effects (if any) and how can I best deal with them if I get them?
  6. Are there any medicines, including over the counter ones, I shouldn’t take when I am on this new medicine?
  7. How long will I need to take it for?

Hope this helps a bit,

B

Great advice, thanks everyone.

B im going to add those questions to my list, hope i havent wrote to much down. You know what these consultants are like.

Im just fed up of always catching any germs etc so the thought of it being made worse by a new medication worrys me. Im quite lucky to have a boss that understands most of the time but if my sickness increased I could see it becoming a problem.

I will let you all know how I get on :))

My attitude is that we can’t help having an illness that means we are more likely to need some time off than healthy people. Like I said in the last 3 years my sickness rate has been better than some colleagues that have no excuse! I think that means that my line manager is aware that I do my best to come in and that there is rarely a day that I feel 100% but I come in anyway because that is as good as I’m going to be for 80% of the time. In fact there are days when she tells me I look terrible and should have stayed at home and sometimes she even orders me to go home :slight_smile:

I have warned those that matter that I have to switch to a new drug which means 3 monthly check ups at the hospital and may mean I am susceptible to viruses (which are always prevalent in a school environment). I have done my best to prepare them.

They know that four years ago I had a month off work with my biggest relapse and this year I have worked through two relapses and only took odd days off so if they want to continue gambling on me being able to continue doing this it’s their concern and not for me to worry about. The fact that they still haven’t organised much in the way of cover for my role at work is very much their problem …

Tracey x

Tracey,

I have a similar thing with my work, im a graphic designer and have been in the company for 8 years now. When i first found out i had ms it was a problem at work because none of them knew anything about it. As times gone on they all understand it more and they no that i dont feel 100% most of the time and if any of them get colds they normally have a day off to prevent me from getting it so i cant complain really.

But when i have time off no one does my job so it just piles up. My boss is good to me really although hes a bit of a Jekyll and Hyde character haha.

He knows i work hard when im at my best and just has to accept that some times i need a break.

xx

Hi, my neuro had me on rebif for 2 years and had to change my management to Copoxone. He explained to me that a small number of patients produced anti-bodies to rebif making it incompatible for treatment. I was also offered other treatments but for me Copoxone seemed to be the best. As is constantly said you put 100 of people with MS in a room we will have different symptoms with maybe some overlap, all react to different treatments but advances are being made all the time so. keep the faith and good luck with the treatment your offered

What other treatments were you offered?

Hi Kelly, I was offered tysabri My local hospital is Addenbrooks which has a a large MS research programme. Personally I preferred to use Copoxone but unfortunately after 3 years my MS is now secondary progressive so am no longer in the research programme .This will not stop me from volunteering I I for any new treatments for SPMS. I have been also very fortunate to have a really great MS nurse who is objective and unbiased with the information dhr has given me which hss enabled me to make choices I feel comfortable with x

Kelly

How’s this for irony? After my afternoon nap I woke up with a cold!!! D’you think I jinxed myself? I blame it on all the fresh vegetables I ate last week - from now on I shall stick to chocolate and alcohol, when I did that for several weeks previously I didn’t catch a cold, ha ha!

Following on from samjj’s replies, I was tested for the antibodies but was negative. My neuro says Rebif just isn’t working for meany more. I’m also at Addenbrooke’s which isn’t local for me but it’s my prescribing hospital. I have a minimum 1.5 hour journey (if there are no delays) to get there for every appointment so that was another reason why I had that sinking feeling when I found I had to change DMDs.

Tracey x

Oh no poor you, hope you feel better soon. Chocolate always helps :))

I have about an 45min journey to mine, longer if the traffic is bad. Im at Gloucester Royal.

Kelly, I don’t fancy chocolate when I’m all bunged up :frowning: I can’t even take a decongestant because of the other meds I take these days and I have perennial rhinitis so my nose is always a bit stuffy. I barely slept last night because I couldn’t breathe despite the Olbas oil sprinkled all over the bed and the Vick’s vaporub on my chest. It’s a good job I’m single ha ha ha.

Feeling sorry for myself today :frowning: :frowning:

Re the hospital - I have to take the train because if I drive I need a little nap on the way home. I can do that safely on the train as my stop is the end of the line. I then have a 30 minute car journey by which time I am refreshed again . I do get some odd looks sometimes though when I wake up and then I wonder if I have been snoring, drooling or fly catching!

Tracey x

Thats not good, I really do hope you feel better soon. Me and my boyfriend went to bed covered in vicks a few weeks ago haha. The joys of colds and winter.

I normally get my mum to take me because my eyes get tired on long car journeys, and shes good company, dont really like going on my own.

I don’t mind someone coming with me if we’re going to have a meal or go shopping but I’d rather be in the appointment or the waiting room on my own than trying to make polite conversation or having someone with me who’s a bit of a drama queen. The people I can cope with are always too busy and the ones that have time to come are useless in such situations so I go it alone!

Last time I took a good book and got so engrossed that the phlebotomist playfully told me off for ignoring her when she wanted my blood ha ha! We always have a joke that she’s just a vampire anyway. When she says she wants to see me I always answer with “It’s not me you want, it’s just my blood”. Note to self - next time take a boring book that I can’t lose myself in.

Tracey xx

Hi Kelly, I just wanted to update you. I was back at the neuro yesterday and my MRI had shown up some new lesions. We discussed Tysabri and Gilenya as he thinks Tecfidera won’t be out anytime soon. Or at least soon enough for me to wait around for it.

We both agreed on Gilenya for a few different reasons - Tysabri just felt too much, too soon as I’m still fairly well.

Anyway, I’m starting Gilenya soon. Copaxone just wasn’t holding the MS at bay so moving treatment up a notch seems to be necessary.

Hey eveyone,

Said I would update you after my consultant appointment.

Hes given me the go ahead for Gilenya, there are more new lessions than he would like to see and its obvious the rebif isnt working. There are a few risks with Gilenya but getting better out way them as we both agreed.

Should be starting it in the next few weeks after various tests, very nervous but excited at the same time :slight_smile:

Wish me luck

Good luck, Kelly

I had my heart scan last week and the lady who did it said whilst she couldn’t really give me the results she could say that she ‘didn’t see anything major wrong for me to worry about’ (she wasn’t English lol). That’s because I was petrified due to the family history of heart disease. Hopefully I will now get the go ahead. I’ve had a few scary incidents with dizziness and strange vision occurrences in the past few weeks which thankfully do pass when I sit and rest so I’m desperate to get started. I ran out of Rebif in September :frowning:

Perhaps we will both get started at the same time :slight_smile: I’ll keep you all posted as I’ll be jumping through hoops if/when I finally receive a prescription

Tracey xx