Is it safe to be without a dmd?

[maxthecat43]

Hello everyone,  I am hoping to gather opinions.  The specialist I see (and I know she's good) doesn't think I need to be on Tysabri after all.   My disease activity seems to be slowing down- although I have had several relapses over the last twelve months.  The MRI's just don't justify the stronger ones like: Tysabri and Gilenya.  I am told that in my case the risks outweigh the benefits.  It makes me nervous, because with every new relapse, I am risking further disability.  

I am pretty confused though...  Last year, my neurologist thought I was transitioning over to secondary progressive ms, (I misunderstood him last year- he didn't say I have spms- only that it looks like I'm headed that way.)  I've had several relatively minor relapses since then.  The last one affected my right side, but I don't seem to have any permanent disability as a result...  We'll see if it gets progressively weaker.  Hopefully it won't.   If I am on the cusp of secondary progressive ms, maybe I really don't need a dmd anyway.  

Can you tell I'm confused.  My disease level justifies the use of the CRAB drugs, but I can't seem to tolerate any of them.  So, here I am...  I'm approaching this disease with dietary changes, and exercise.  I've felt reasonably well (as long as I don't "over do") for the past five or six weeks.  I'm adjusting okay to my new version of "normal".   I still have this gut feeling that not being on a dmd is dangerous; but I also wish to cooperate with my doctors.  

What do you think?  What would you do?
Thanks,
Tammy

[maxthecat43]

Hmmm, that's interesting.  It won't hurt to bring it up.  

I think I'm going to print this page to bring with me to my next appt.

[twopack]

As with the other immunomodulators and immunosuppressants used, pulse therapy with Solumedrol is given to PREVENT flares rather than to treat them AFTER they become evident.  It may not be a widespread therapy but it is an acceptable one for PwMS when other options are limited.  

Don't let anyone dismiss potential solutions without some investigation or explanation.  Hope is a wonderful thing.  It just has a much better chance to fulfill your expectations when bolstered by additional therapies.

[maxthecat43]

I haven't heard of that dosing schedule before, but I will ask about it.  I don't think they do a single day pulse therapy at the hospital I go to.  They usually prefer a three day course of IVSM.  I know they won't do this every month, but they are fine to order it for more serious relapses.  

At the end of every relapse, I just hope there won't be another one...  

[twopack]

I think I remember Copaxone being tried on an every other day dosing schedule.  That may be worth considering.  

Also, do you know if your doc(s) ever have their patients on steroid pulse therapy?  It is one day of high dose steroid (usually IVSM) given once every four weeks.  It is sometimes used in combination with a DMD but might also be considered for solo use.  It could be a decent choice if you still need to contain relapses, especially if you've had improvement with high dose steroids during past flares.

Hopefully they will be willing to work with you to find something acceptable to use until some of the newer options become available and have time to prove themselves safe enough for patients and doctors both.

[maxthecat43]

I was originally taking Rebif.  I was allergic to a preservative they use in their prefilled syringes.

Then I used Copaxone.  No flu symptoms, but I  had golf ball sized lumps, that itched and burned, and of course hurt.  I dealt with that for a while, then I developed a constant headache and nausea.  The Copaxone people said that my reaction was rare- so don't think it will necessarily happen to you.  

After that, I started on Avonex prefilled, and was allergic to that one too.  We decided to try the kind you have to mix yourself,and I had no physical reaction to it anymore.  

I'm going to ask about Copaxone again,  I'm going to ask if there is something that can be done to manage the side effects I had.  If they can help with the problems I had, I wouldn't mind trying it again.

Tammy

[Needhelp16]

May I ask what you've tried other than avonex and how you didn't tolerate them?  I'm just curious for my own sake.  

Laura

[maxthecat43]

I hope they will find something to help me...  I am going to bring up the immunosuppressant too.  Staying away from colds is going to be tough.  I hope that my concern will be enough to convince them to figure out something...  

Tammy

[Sailorsong]

I take two 500MG pills twice a day that was built up at 500MG increase over a 4 week period. There were several side effects listed for the drug but I have not experienced any of them.

The biggest thing is you have to watch out for illnesses (colds, flu, UTI, etc). Because your body doesn't respond as normal (no fever) you really have to listen to your body to know you have an infection. Also my doctors usually put me on antibiotics for 20 days instead of the normal 10 days to make sure the infection is completely killed off and have me stop the CellCept while taking the antibiotic. So far I have only gotten sick twice in the almost 2 years I have been taking it.

You also have to have blood work checked regularly (esp White Blood cell counts) to make sure they don't get too low. They are checking mine about every 6 months right now.

Dennis

[HVAC]

I would push for a DMD but if you do not tolerate the CRABS the stronger ones you may tolerate less. My Neurologist practically changes his mind about whether I am PPMS every time I go in. I am not on a DMD because I have had MS for 47 years, have PPMS, and it is very slow, The CRABS would not do me much good. I was set to go on the new ones but with cancer I can't be on a the new drugs. I was told progression happens with or with out symptoms. Nothing can guarantee to stop progression but I think it is important to try.

Alex

[maxthecat43]

Hi Dennis,    Thanks for the idea!  I hadn't heard of using an immunosuppressant.  Is it okay if I mention your case?

Hi Sarah, I am still trying to figure out who I can ask.  It would need to be someone who would be willing to speak up if necessary.  I love my hubby, but he usually just quietly sits there.  

Thanks again!
Tammy

[SarahL2491]

absoutely take someone with you, surprisingly sometimes Drs sit up and talk straighter when they dont have you alone!

[Sailorsong]

Maybe your doctor could try you on an Immunosuppressant like I am on (CellCept). It seems to be keeping my progression of symptoms down by stopping the inflammation from happening. I'm on the CellCept because of my SPMS DX.

Dennis
  

[maxthecat43]

It doesn't feel safe to me either.  However, I can't use any of the CRAB drugs anymore...  I will be in the office with them in a couple of weeks.  I received email communications from them this morning- they must have been reviewing my files.
I was taken off Avonex in July.  I was tolerating the type you have to mix quite well- physically, but I started having thoughts about death/suicide.  I thought maybe they would just add an antidepressant or something.  But because I have kept on relapsing every few months, it was thought to be ineffectual.  
I will ask why they feel the way they do...  I think I need to find someone to come in to my appt with me.  I  really like my doctors, but I seem to go back into a role of child-like submission in these kinds of circumstances.  It's weird, because if it's for someone else- I can be the advocate.  It seems like in my own case, I have to get angry to stand up for myself.  I'm just not there yet.  I'm bewildered.   I'm nervous.  I'm confused- but I'm not mad yet...

[SarahL2491]

If it were me, I would not go off of DMD's.  You may very well be having relapses, but you will never know how many relapses you are NOT having, thanks to your DMD.  I

How can your neuro(s), who have never had MS (am assuming that)
tell you the risk outweighs the benefit?  Particularly of Tysabri.  Am assuming that the brain infection is the only huge risk for Ty, and those numbers are very, very low.  Were they expecting miracles and a return to clear health?

I am on Tysabri and can tell you its the first DMD I have ever taken.  I am convinced I would be worse if I had no DMD and am not willing to go down the road of "no DMD".  

Good luck in your decision, but I'd be asking these neuro's to produce reasons you can "look at" with documentation to back it up!

[jensequitur]

Personally I feel that the lack of disease progression is exactly the wrong decision if you are currently on a DMD. Tysabri may have slowed your progression and prevented more relapses.

[maxthecat43]

I just re-read my post...  I have two neurologists- they work together.  One is female, and the other is male.  So, I hope that explains the shift between she and he :)

Tammy