New Here! Hello Everyone

Diagnosed in 2012 with relapsing remitting. Have had a couple of big relapses but nothing significant since 2013. Now just slow additions of small symptoms, seems to be happening more often. I think this has progressed to secondary??? I am NOT on any DM treatments because my insurance premium is sooooo high and it won’t pay for specialty drugs until I hit deductible. I think this new way of insurance doing us is very wrong! Anyone else having this problem with insurance?

Hello jacyp, welcome to the forum.

Your question re. insurance premiums leads me to think you are not in the UK, where most - but not all - of us on this forum are based. Here we have a state system, the National Health Service. We pay a National Insurance stamp (or tax, if you like) which is a percentage of our earnings. For this we get most of the healthcare or treatments we need, including DMDs, so the cost of it is never in question. Of course, some people do choose to take out private health insurance but it isn’t necessary.

I’ve spoken before with MSers in the USA (where I’m guessing you may be) and learned that our two systems are completely different, so I doubt anyone here can help you, but you never know so stick around.

I too have RRMS and have thought once or twice that I may be progressing to secondary, but fortunately I was mistaken. I have not had a serious relapse for quite a few years.

My only experience with DMDs was with Rebif (Betaferon), I used to inject myself three times a week but came off it some years ago.



I’m not on any DMT’s now, but I did try Ocrevus before my insurance dropped it from their formulary. Since then, the insulin my daughter’s used for 20 years has been cancelled, and every single drug they’ve tried prescribing for my son has been denied. What they did to insurance hurt more people than it helped, but the politicians don’t see that.

It would depend on your income, but there are a variety of organizations that can help cover the cost of DMT’s.


@Norasmom- thank you for your reply. Lets me know others are experiencing similar problems too.
Octevas, I might asked my doc about it.

Yes Ben I’m in Texas. It’s a crime what they have done to our insurance system.
Sounds like the system you have is working well for MS’ers.
Why did you stop DM drugs?

hi sorry to read this about insurance. in UK we dont have this problem, as we have social medicine NHS.

I dont think you should assume you are progessed to secondary, it can take years and years to get that bad. small symptoms could be exacerbations check your outlying health, i.e. check for UTI and infections elsewhere which might not be obviousl. Are you in warmer clime, as this can make you feel like hell.

I hope you sort out your insurance issues. xxxx keep positive. xxx

Hi jacyp,

I came off Rebif because of repeated nasty headaches which, thankfully, ceased when I stopped. It rather put me off the idea of trying another DMD, but never say never.

It has been several years now and I have had no serious relapses.

Ben, in England

Hi Ben,
Thanks so much for info about Rebif. I’ve tried Tecfidera(stomach aches), then Gilenya(slow heart rate, fatigue, brain fuzziness probably due to lack of oxygen because of slow heart rate). So I agree with you on going off DMD’s. Too much side effects. I’m glad you have been stable. That’s truly a blessing!!

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The down side of the NHS though is the dependence on approval by NICE. I have been lucky and have had my Siponimod approved. Having lost my job with no prospect of work in the future (as things stand right now) I am very grateful for the NHS…

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Hi Gareth,
Thanks for clarifying the info about the NHS. My husband and I were talking about what Ben had said and we wondered if there is a delay of getting doc appt or a need for approval for treatments.

Good point, CC. According to the news, Texas is in the midst of a heatwave and having electricity issues to the point that they want people to turn down their air conditioners, which is a necessity through most of that state.

jacyp: Are you staying cool? Stay out of direct sunlight as much as possible, stay hydrated, just take it easy in general when it’s hot. Ignore the governor and crank up your AC. It’s a medical need for you.

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Yes that’s exactly what I’m doing. It’s a little hotter here than normal but not bad.

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