Secondary progressive MS

[candy158]

Hi my fellow MSers ....... Sorry I have been absent quite a bit, but have been dealing with alot of stuff.  Mainly Dr. related, but also some complicated family issues.  Life can be so very difficult sometimes, but we still have to somehow rise up and smile anyways, as the sun is still shining.  I have been missing my 4 grand children so very much, and we have had NO communication from DIL or our son.  She is an evil person, and I don't understand my son, but we can't talk to him because we have been forbidden, ( if you can believe that), our children forbaying us something, wow, this is wrong, but we can't do anything about it.  As they moved almost 6 months ago with no notice, and no good byes or anything and moved to Dawson Creek.  We cannot communicate, though I have still tried to leave our son some short messages just to let him know we are here.

Anyways, my question is ... I am preparing to go to my next Neuro appt next week, and wonder when they consider you "relatively stable" are you still eligible for DMD's.  I have secondary progressive MS, and have not had much luck on the other drugs.  I was to high in my numbers for Tysabri, then they said they would not pay for it as I was considered "stable" ..... so, does anyone have any suggestions as to what I should maybe ask for or try at least.

Thanks for listening, been a hard few months...
Candy

[Wobbly]

Hi Candy, sorry to hear all this.  Hugs.... I have SPMS and not able to get drugs here in BC.  Are you going to UBC for you appt.  Hope they can help.  Let us know how things go after your appt.  

And take care of yourself, you can't fix everything or make others explain when they make their decision.  You and your husband have your lives to live.  Do what you can to make it as best as you can ok.  

Take care
Wobbly

[candy158]

thanks guys, will let you know what my neuro says at the end of the month, who knows, I'm not holding my breath....!!!   Cheers,

[doublevision1]

.....so they perhaps don't prescribe it for SPMS in Canada.

[doublevision1]

With the provincial MS drug programs, the insurer insures what the MD recommends. Insurers not making medical decisions on this side of the border. :-)  There's an application and renewal process, but the nurses have told me over the years that patients aren't turned down. I don't know if that's just my province or is the case across the board. Neuros apply on patients' behalf. But Rituxan and Novantrone aren't listed on the application for the provincial MS drug program, so I'm not sure how those ones are handled. I'd be inclined to assume that because they're administered in hospital, they're automatically covered under our basic provincial health insurance. But then Tysabri is one of the MS drugs that neuros must apply for, and that's administered in hospital, so....? In any event, can't hurt to inquire about these meds, Candy. I do recall my neuro saying Novantrone is for relapsing progressive MS, so they perhoaps don't prescribe it for SPMS.

[kwarendorf]

I couldn't figure out if it was her docs or the insurer who said she was stable. I'm not sure the insurer is qualified and the docs should know that SPMS looks outwardly stable for long periods of time. We tend not to have obvious relapses. Our MS activity is shown over years. 3 years ago I could walk for an hour without much difficulty. last year it was down to 45 minutes. Now it's 30 minutes. The last obviuos relapse I had was 4 years ago. Is my MS stable?

Inquiring minds want to know!

Kyle :-)

[doublevision1]

I always forget about Rituxan. I recall my neuro mentioning it to me along with Novantrone as potential options for my "very active" early MS, if one of the first line drugs didn't settle things down. Fortunately Copaxone did settle things down for several years. With these being more aggressive drugs, it may be a challenge for Candy to get them on the table, seeing as how their rationale is that she doesn't need to be on a DMD at all due to being stable (???). It's rather confounding.

[kwarendorf]

Hi Candy -

I too have SPMS. I'm not sure what numbers take Tysabri off the table. It was my first DMD and I was on it for 20 months. It stopped working so I switched to Rituxan (rituximab). I've been getting Rituxan for about 1 1/2 years and so far so good.

I'm not sure how it works in Canada, but MS is an "off label" use for rituxan, meaning it has never been tested in the US for MS treatment. This makes it hard to get insurers to pay for it. I got lucky :-)

Kyle

[suspiciouscombo]

Your original post is saddening. My sincere thoughts are with you. This is just the type of stress you don't need regarding family matters in conjunction with illness. It does seem that Stress can elevate my symptoms at times.

Thoughts are with .... and best to you .....

:)

[candy158]

thank you all, I'm doing research on the med's right now...... ((HUGS)) Candy

[karryon55]

I'm so sorry to hear all this Candy and I'm sure the stress can't be helping your MS any. Try to not focus on the DIL situation because you know that is a lost cause. You know that one day this will get better and you will see your grandkids again.

I know all of this is easier said than done but you have lots of people here (including me) who are right beside you through this turbulent time. Sending lots of hugs your way....

Karry

[supermum_ms]

I'm so sorry your in this position, i don't have anything helpful to add but i wanted to give you a hug, i'll keep thinking good thoughts for you and yours!

Hugs........JJ

[Corriel]

Hi Candy, it's good to have you back here. :-)

I am so sorry for everything you are going through, and I hope that things turn the corner soon.

Like dv said, if a drug is covered under the provincial plan, they will approve it if your neuro gives you the RX. Extavia, Gilenya and Tecfidera could be potential options for you depending on your neuro's approach.

I was covered by Biogen for Tecfidera about 7 months last year because it was not covered by the provincial plan so my coverage at work wouldn't touch it so maybe there is an option with a drug company too.

Good luck with your neuro appointment and let us know how it goes and gentle hugs for the rest. I hope it gets better soon.

Corrie

[bbassel]

I wish I had the words to bring you peace and hope right now! Just remember that things can change in. A day and you have alll of us here fighting beside you. Huge hugs xo

Barb

[candy158]

thank you guys, it means alot, and I'm in tears right now, as I just found out certain people that I thought we friends, are communicating with my DIL and inviting them to Victoria,.... which is where I live.  I am extremely depressed right now, and not sure where to turn.  I feel like a horrible person, and if I'm ok for 2 grand babies, how come I am not ok for 4 others.   The amount of suport that son and DIL are getting is incredible, and some coming from my family and friends.

I'm feeling totally overwhelmed, and not sure what to do.

Candy

[HVAC]

Just because you are blood does not mean people act right. I am sorry.

Most neurologists will put Secondary MSer's on any of the DMDs. You are eligible for all the new drugs since the CRABs are designed for beginning MS. Gilenya or Tecfidera. Rituxan is an infusion but I have friends who are Secondary Progressive who swear by it.

Alex

[Joiedecour]

Just wanted to say how sorry I am to hear about your son and his family. I have seen similar situations where the mom keeps in touch as you are doing from a distance to let the son/daughter know that the door is open. It's generous, courageous and loving on your part, and I hope at some point things will improve for you. In the situations I have seen the child has ended up needing help from the parent (help in general sense including support) and the mom has been relieved to have kept that door open. Can't say anything about your medical situation but it seems to me that you are being a great mom. Hugs.

[candy158]

Thanks DV..... I do not have any coverage, we are on disablility, and hubby is fight WCB ..... so no health plan or anything for us.  :(

I will look into the Extavia and see what I can find.  

Thanks so much for your input....
Candy

[doublevision1]

Hi Candy,
Sorry about the family stuff, that must be tough to deal with.

It sounds like you've had a very difficult time with your physicians and getting on an appropriate treatment. I looked at the application form for coverage by the BC Ministry of Health. One of the criteria for initial coverage is to have had at least two MS attacks in the past two years. So I assume anything less than that is considered stable and therefore ineligible for coverage. But given you've already had initial coverage, having attempted a few different DMDs already, I can't see how this criterion applies to you. I also note that for SPMS, the only drugs approved in BC for provincial coverage are Betaseron and Extavia. Have you tried either one (essentially it's the same drug).

Do you have private coverage (eg employer or non-group) or are you a dependent on your spouse's plan? If so, you could look into your own existing coverage. I believe all plans generally cover the MS drugs except perhaps the newest ones which have yet to be added. I don't believe they would have as strict criteria as the provincial government's. Generally, if a doc prescribes it and it's included in the schedule, it's covered no questions asked.