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Calling anyone with MS(16 Posts)
I was diagnosed with RRMS last year after being unwell for about 12 months and then 3-4 particularly nasty months of illness, a spell in hospital and lots of mis-diagnosis. Have since had MRI brain & spinal scans and have seen 2 Neurologists & got fully confirmed diagnosis (from both) & met my MS Nurse.
I now need to decide which DMD's to go on. I am a member on the MS Society forum and have done some reading on there, but to be honest it has just freaked me out.
I accepted my diagnosis well (I think). Although it was shock and upsetting initially, it was also a massive relief to get answers that all finally make sense. I did lots of research & was very positive and pragmatic.
But now, 2.5 months after diagnosis, I feel like I am having a massive wobble. The DMD conversations & research seem to make it all very real. I am nearly completely out of the relapse, which is great and feeling probably about 85% back to 'normal' me at last!!
.....And now I find myself petrified of the DMDs! They all have such horrible side affects, many which mimic my last relapse symptoms, so I just feel so scared I could cry. I don't want to get sick again. I don't want DMDs to rule my life/day. They all sound so horrible. (But I know that I'm just risking worse in the long run if I don't).
My Neuro & Nurse have both 'strongly' advised that I do go onto a DMD. Of course, I don't have to, my choice entirely, but their expert and experienced opinions are that I should. Sooner the better.
I don't really know what I am asking. I just felt so freaked out by reading the research on the MS Society forum, I just wanted to run and cry and seek comfort, solace somewhere else (sounds stupid I know. I feel like a sulky child and just want to stamp my feet and throw my toys out).
Anyone of any MS experience have any advise on DMD's or words of comfort? I know I can call my MS Nurse but that just doesn't feel right. He was a nice enough chap but not someone I feel I could just rant at/chat to.
I can't be of any direct help I'm afraid, but my DM has MS and has been using the Chilterns MS Centre for years - if you're not in the same part of the country I wonder if it would be worth ringing and seeing if they know of any similar resources near you? I know Mum has found it invaluable having somewhere that has 'independent'/non-biased professionals that she can talk to without having to wait for an appointment with her Consultant, and also of course other people with MS who have different experiences of drugs, therapies etc.
At the very least there might be a support service that you can do the ranting part with, which would let off enough steam to sit down with your nurse and talk through the different meds available, known side effects, how long to give each before deciding if it's working...
mumonashoestring Thank you! That does help! I had forgotten about this.... When I told a friend about my diagnosis a couple of months ago, she mentioned this place too as she lives very near to it. I no longer live in the close area, but I'm not too far away. Have just gone onto their website and will have a look at what I can find. Thank you x
Sent you a pm, but happy to post some stuff here too if you prefer.
Just replied to your pm x
Could you tell me what DMD means? Daily medicine something? Are you talking about disease modifying drugs? Sorry to be thick! I've was diagnosed with MS in 1997 and have used Copaxone and Rebif - if this is what you are talking about I will tell you more about it! I'm sorry you are feeling down at the moment. I want to say comforting words but I know everyone's experience is completely different. I had two big relapses in 1997, but almost nothing in the decade after that. You may well have a long symptom free period ahead and there are all sorts of new techniques /medications in the pipeline. try and hang on to your positivity.
Diagnosed with MS 6 years ago. I'm not on any disease modifying drugs yet because that's not how it's playing out with me for now. It's an option recently discussed with consultant, tough. I would follow the advice of your neurologist and MS nurse. One size doesn't fit all but they are best placed to help you decide. And be mad at it whenever you goddamn feel like it.
DMD is Disease Modifying Drugs (or sometimes referred to as DMT - Disease Modifying Therapy) - yes, exactly, Copaxone/Rebif...to name just 2. There are about 12 I think, maybe more.
I was so positive about it all when I was diagnosed, but feel like I'm having a big
& childish blip at the moment.
I had narrowed it down to Copaxone or Aubagio....but further research into them both has sent me spinning. I just don't want to do it! <<stamps feet & wants to cry>> But know that I am being childish and ridiculous and need to get a grip.
I am so scared of getting ill again. I was so poorly last year, never been that ill in my life. The thought of the side effects of these drugs, some which mimic my relapse symptoms, for the sake of only 30% benefit just makes me want to run for the hills. But I feel like, in my heart of hearts, I know its the right thing to do.
They 'think' I actually had my first MS relapse 18 years ago! Was diagnosed with ME at the time. Ill for a year. But nothing since (to speak of) until 12-18 months ago...and then major issues 6 months ago and confirmed/full MS diagnosis 2.5 months ago. They can't be sure, but if it so, then I did 18 years with no relapse which I am told bodes well.
Did you suffer side effects on the medication? Did you feel like it 'took over' your life, having to inject daily? If you have stopped, are you not worried about consequences of stopping or that taking it was pointless if you have stopped? (I hope none of this sounds rude or prying, I really don't mean it that way, I am just curious).
That really was stupid of me - I typed disease modifying drugs without spotting that's what DMD stood for.
Anyway, I should say that I am very pro drugs and don't tend to get side effects from many, and I realise that is a combination of personal philosophy and physiological luck. I took Copaxone from I think 2003 to 2012 and Rebif since then. I started Copaxone because I had a very slight vision related relapse (tiny - went away within days and wasn't that bad) and my GP was keen because I was a "young mum". I had absolutely no problems with it except maybe 6 instances where I got a really odd pressure sensation in my head - scary the first time (because the pressure suddenly builds and you think you're going to pop) and then uncomfortable but it's over in less than a minute. I definitely wouldn't say it "took over my life" but I doing it every day did get me down in the end. It hardly hurts and is over very quickly but I did feel a bit glum about it. Also, I just use 6 injection sites (arms, stomach and bottom - I feel queasy about my thighs for some reason) and occasionally an area would go very hard for a few weeks. So I switched to Rebif which is three times a week and I feel much happier with that. It does make you feel fluey afterwards but I a) take it just before bed and b) take paracetamol or ibuprofen and then it's fine. I only need to take one tablet now - maybe I could stop altogether. I always have at least two red patches from injections on my body but other than that I have no problems. I haven't had any proper relapses, but I do have some mobility and cognitive problems. They vary according to how tired I am. I am very, very positive about the drugs I am taking and I believe they are slowing progression of the disease. I am thankful every day that the NHS is paying for them.
I don't have MS myself but my DM does so I've picked up a fair bit on info on her DMDs from having to deal with relapses. After dx she was on rebif for about 5 years, she did keep having bigish relapses (1 a year normally) and had not end of problems with reactions at the injection sites - she used to rotate between stomach, buttock and thigh for tge3 injections per week. Last year she was changed to Techfidera and got on really well with it, minimal side effects with the worst being hot flushes. Her neuro suggested she take a small dose of aspirin each day to reduce the affects and that controlled it quite well.
Unfortunately the Techfidera ballsed up her liver (thankfully it's repaired itself now) so she stopped taking any DMDs in May. She's been ok off of them actually, much much better than I thought she would be and thankfully no relapses as of yet. Neuro has said if she does have another relapse or if her next CT shows active lesions they will look to put her back in DMDs and with a lot of research I think she will be looking to go with Tysabri (I don't think you would be eligible for that one yet thankfully) or Lemtrada - which may be an option if you fit the criteria?
Good luck with everything
Thanks for sharing SmokingGun
That's really interesting especially the fact that she has come off them and not relapsed. But do you (or anyone else) think that's because the 5 years worth of Rebif & year of Techfidera are having their effect now (still keeping things at bay, because she was taking them for so long)?
Also, I think my understanding might be wrong because I didn't think the DMDs made you 'better' now, (as in, you don't see effects of the medicine in day-to-day life) but are more about potentially making the future better, by increasing time between relapse. The fact that you say she's been ok/better than you thought since she's come off suggests that you were expecting to see worsening straight away (as in, they do effect day-to-day)?
I'm probably not making much sense or being clear. Do you / your DM feel like the DMDs made a difference to day-to-day life?
I do qualify for Lemtrada & that's the route I thought I'd go (before the convo with Neurologist). I liked the idea of just going at it full steam, 5 days out and then get on with life. Everyone knows where they stand, no messing. But Neurologist feels we don't need to go that heavy-handed yet. The potential side effects are big & he'd rather we save that option for the future.
Thanks again x
Don't want to read & run but heading to bed, sorry MS shatteredness lol
Was on Copaxone for 5 years, no side effects, few red injection sites in first 6 mths all settled down and not painful to inject but eventually I started to get more frequent small relapses. Tried Fingolomid for 6 mths but it lowered my WBC too much so now I am on Tysabri with no side effects but I am JCV+ so not sure if I will go beyond 2 years on it. I was offered Lamtrada but keeping it as my last option. My consultant says now they prefer to hit you with the most efficient drug as soon as diagnosed rather than work your way through them as each major relapse can leave you 5% more disabled than before so they prefer to cut the major relapses as much as possible
PM me if you want to know any more on these drugs.. sorry can't keep my eyes open.
I do not qualify for Fingolimod (Gilenya) or Tysabri yet. Neither of those are open to me. Interestingly, I do qualify for Lemtrada though.
Interesting that Copaxone didn't work for that long for you before relapses started up again. Did you feel that during the 5 years, it helped you day-to-day? Did the injection sites hurt at all? Or like a bruise if someone knocked you there?
I've heard several people say that they prefer to hit you with most effective drug soonest now. That is the mindset I was of.....until discussing with my Neuro. Even though he offered Lemtrada, he wasn't keen and gave the advise that he'd rather hold it in reserve for future.
I think I will discuss this with the MS Nurses some more, just to see...
Hope you managed to get some rest
Totally rested thanks, although a morning in Ikea may have undone all that! That’s strange qualifying for lamtrada but not Tysabri but your consultant knows best. For the first 4 years I had no major replapses, just had my usual everyday stuff, fatigue, l'hemeettes, uhthoff's, sensory issues (getting into hot bath, feels cold and vice versa but not all at once maybe one thing every few months but nothing constituting a big relapse as such. Year 5 was different, couple of bouts of optic neuritis, loss of power in legs & having to use a wheelchair outdoors, all of this settled with IV steroids. I changed to Fingolimod which I loved but it lowered WBC too quickly although I felt good on it, so back on Copaxone until funding & hospital place for Tysabri (9ths).
Copaxone worked well for me, injecting daily meant it was part of my daily routine, I took it after dinner, in the 4 years plus I forgot only 3 times. There is a suggest 7 place rotation for injection sites, but the only place that I found was totally painless was my stomach so I worked back and forward across it. In the first year about twice a week the site would be stingy and a bit warm but the pack that comes with the drug had a gel pack which I’d heat and it took away the stinging, some people prefer it cold, but that settled down. About 2 years in I injected through my blouse one night, I could hardly feel the needle going in, from that day I injected through my clothes, it’s not recommended but looking on Google lots of patients in USA do it with insulin, I told my nurse who didn’t seem to mind. Never inject with a drip on the needle, bloody drug stings like buggary if you do. There is one odd side affect that can happen but statistically only about once every 2 years, I never had it. The drug can be injected into vein and travels in blood stream to the heart, causes a minor palpation for a few seconds but is neither prolonged nor dangerous.
When I was deciding between Tysabri & Lamtrada I joined the Facebook groups for them, they are full of information, no drama and advice, it might be work having a look. Have you had a look at the MS decision website? It’s pretty good for helping with the decision. Sorry for the big long reply, hope you made it to the end
The Lamtrada FB group
My dh has been on copaxone since not long after his diagnosis in 2009. He's not had a relapse since 2010 and no side effects from the copaxone besides a few minor injection site related ones ie a bit of redness and lumps at site, no drug related ones. He was taking it daily but now takes a higher dose 3 times a week and he prefers that .
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