Can't Get right treatment

My Husband has had RRMS for many years down - he has had various Disease Modifying Drugs, but the last one was awful and it took us more than 12 months to get his health professionals to realise this. He has now been on a new trial drug for over a year but is suffering greatly from depression, increased numbness and has had several broken teeth. I don’t know who to turn to as his consultants wants him to keep trying the drug but the side effects are getting us both down.

Hi Tinytears

So sorry to hear that your husband is having such a hard time. Are you able to speak to your GP about being referred to a different neurologist, or does he have an MS nurse to contact? Hopefully they are not keeping him on this trial drug because they want the data.

perhaps you need to be a “squeaky wheel” and be insistant but nice. Good luck

Rose

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Hi, Im sorry to hear this. What about speaking to your husbands MS nurse for advice.?

I have a buddy on el board, who knows a bit about DMDs. I`ll alert her to your post.

pollx

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hi tinytears - (i remember that dolly well)

ms drugs can have awful side effects.

i’m lucky not to have depression as one of mine but surely your GP could prescribe something to help with this?

Losing teeth? never heard of that one but whichever DMD he is on should have a helpline that you can ring.

they have nurses employed by the drug company and a lot of knowledge.

steroids can cause bone loss - i asked for a bone density scan because i was worried about it.

carole x

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Hi

If your OH is suffering from depression caused by the DMD, he should speak to his GP for advice really. Which DMDs has he tried? You say he’s on a trial drug now, is the trial being properly monitored? If it’s a trial, then surely depression is one of the side effects that would cause him to come off the drug and therefore the trial?

I’ve not heard of a DMD that can cause broken teeth, is it related to steroids as Carole suggests, or is he grinding his teeth? Again, this is possibly a side effect that would cause him to stop taking this drug.

Just because a consultant wants a person on a drug is no reason for him to put up with serious side effects. There are now so many DMDs that changing from one to another should be straightforward. I do hope you get it sorted out, it really must be getting you both down.

Sue

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