MS in all its glory

Hi all.

Firstly to admit I have been lurking / watching from a distance for some time, but didn't post before now as I tend be very discrete / private etc.

For professional reasons etc, while I don't hide my MS from those that are close, (e.g. family and friends) I work in a "hard nosed" / ultra-competitive professional arena where I am (reasonably) well known and where some "play dirty" at times, and use any perceived weakness to exploit their position, to the detriment of others. For that reason I have set up a new account here to keep my identity completely separate to my public persona, if only to avoid damaging my professional brand, and so as to not to afford others the opportunity to impact on my professional life (trust me there are those who would).

The above aside I am a 49 year male, who was diagnosed the first half of 2015 (4 years ago).

I am living with RRMS, and bar one very severe episode in 2015, (you name it, it malfunctioned - it was like an explosion) and one less severe episode about 15 months thereafter, I am living "well" with MS, albeit it has a habit of "reminding" me when I over do things. I am on a DMD (disease modify drug), (an interferon), and while we will never know, my Nero says "the plan is working, for now".

I have worked extremely hard in the last 30 plus years and made, and lost, and recovered a reasonable bit of wealth, and thankfully along with the general economic upturn, in the last few years have by and large recovered financially, albeit the big flash cars and several foreign holidays are no longer a feature, but guess what, I don't actually miss that stuff. If I was to take a positive view, living with MS has thought me to enjoy the here and now, and to be glad for what I have.

My work is very important to me, both from a financial security point of view; I am the sole income earner in the house, with two kids in third level education, and a spouse who is a full-time carer (for their sibling who has has a profound intellectual disability), and also, as I enjoy being busy, and for the most part enjoy the cut an thrust of what I do for a living. Thankfully with some, not very outwardly, obvious adjustments bar a period of c.1 month when first diagnosed, there have only been a handful of days where I have obviously been "missing in action" (I am fortunate in that (thanks to technology) I can work from home on or two days a week, so my "absence" from the office is not noticeable as such).

Otherwise I am, to date, managing well, albeit the "reminders" are becoming slightly more frequent and pronounced, but am fortunate in that I hope that in the next 3-4 years, if I choose to, to be in a position to make very substantial career / lifestyle choices, which may include a complete change of career / stepping back from the "pressure cooker" and doing something far more sedate.

A lot there, I know, but am conscious that being diagnosed with a Chronic Illness such as MS is "life changing", and far from nice, but also conscious that (as I have learnt) there are also many folk managing well, albeit we need to be more aware of what our bodies are telling us, but also to use the "warnings" positively - in my my case the weekly overseas business trips, I no longer make, have afforded me more time with my family, something I had (subconsciously) neglected to do for many years but which has brought us closer.

Anyway to end - I wont such say "it's all good", but good things can come from bad things - live well (as well as one can) fellow MSers.

Are any of you on Lemtrada? The EMA have come out and said that they've had to put some pretty severe restrictions on it being prescribed as they're carrying out a review to see if the safety profile needs to be changed. Potential for cardiovascular damage needs to be assessed after some adverse reactions and events were reported to the EMA. I'm 22 months post round two and was supposed to get a third round, which has now been put on indefinite hold. The lemtrada has caused me damage as I've had to have my thyroid removed as a direct result of receiving lemtrada so my neurologist had said a third round may be warranted but she wouldn't want me to go on having fourth or fifth rounds. Dunno what to think now, my heart has been fine but if they're gonna put a stop to lemtrada, what could they offer me instead? I've already had copaxone, tecfidera and tysabri, none of which were working.

adam88 wrote: »

What about gilenya. I’ve been A1 since I’ve started it 9 months ago and my optic neuritis has almost all but cleared up. Big improvement

I've been on it since Nov 2015 and had no new lesion activity. First 18 months on it were rough, as I caught every illness going (given that it works by slashing white blood cells this makes sense). But am totally grand for the last while.

I was talking to a good friend of mine whose a dr. We were talking about whether I’d do another round of steroids if I got a minor flare up. I honestly would prefer not to. I was absolutely knocked for 6 for three weeks after stopping the steroids. Vertigo, restlessness etc. I was genuinely of the opinion that if these symptoms were MS then I wouldn’t be hanging around too long more. It was only when I went digging that I found out that my symptoms were due to the high dose steroid and the sudden stoppage.

embee wrote: »

Was the gilenya suggestion for me? If it was, it's not an option for me. My neurologist has said that my MS is too aggressive to be kept at bay with injectable or oral medications. It's IV of nothing for me I'm afraid!

Embee - so you just have to wait? Its been 18 months since your last round of lemtrada, were they planning the 3rd round this year? I've no experience of lemtrada, but hope you get an update soon and they figure out a treatment plan

byhookorbycrook are you on a dmd as well as Fampyra?

NHS has approved ocrevus / ocrelizumab for PPMS... my consultant has told me they are nowhere near approval over here and he has basically stopped talking to patients about it.

I’ve been emailing/tweeting/mildly harassing both MSIreland and Simon harris about it and I’m being fobbed off by both. Could I ask anyone in same position as me (ppms no dmd) to do same and maybe we’ll have strength in numbers! I really feel we are the forgotten few of the MS community.

Hope everyone is doing well

byhookorbycrook wrote: »

Will do . Can you get ritux in the meantime ?

Thank you so much.

Tried ritux Feb 2017... bad allergic reaction. They wouldn’t let me continue. Used 25ml of the 500ml dose! Terrible. My consultant’s team has researched the properties of the two and think that they are altered enough to allow me try ocrevus so fingers crossed.

A friend came across CBC oil in a chemist shop recently and thought it might be of benefit to me for stiffness. It is called CannabiGold, has anyone used this and did they get any benefit from lt.

Just got email back from Simon Harris. They are not going to fund ocrelizumab. They are going to renegotiate bla bla but basically it’s not looking good. Very disappointing

byhookorbycrook wrote: »

Carrie, it was the same with Fampyra initially, it's all about making noise. I'm not generally one to suggest talk radio etc. but needs must.

I’m still in the MS closet with everyone but my close friends and family (although it’s becoming very obvious as time goes by) so am reluctant to be out there but I think you’re right. It’s time to make more noise.

Thank you for all you did for Fampyra it’s has certainly changed my life.

eimsRV wrote: »

I see the NCPE decision was "The NCPE recommends that ocrelizumab (Ocrevus®) not be considered for reimbursement unless cost-effectiveness can be improved relative to existing treatments." But are they comparing only to RRMS treatments, I understood that ocrelizumab is indicated for PPMS also? Website only mentions RMS

Exactly. Ocrelizumab is approved by the NHS for PPMS patients with certain markers. I don’t understand how RRMS even comes into it

Mulling over my choices of what DMD I move forward with. Been presented with Mavenclad, Gilenya or Tysabri. I'm leaning towards Mavenclad, 60% efficacy rate compared to Tysabri 65%, but a little worried if it doesnt agree with me there is no out once you;ve taken the tablets, its in your system for a year. Anyone any experience with Mavenclad? I joined the Facebook group and see fatigue remains a big issue for months after treatment is started.

Carrie6OD wrote: »

I don’t think so. I know people are on rituximab which is similar. There is no DMD for ppms which is why this is so important.

Yes totally agree with you. I’d support a campaign or pester politicians with emails and letters