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Conflicting Information

I was told by my Neuro on Tuesday that I “meet the criteria” for HSCT and that he would refer me. I have been really quite excited about it and this morning emailed my NS Nurse to ask what I could expect and possible timescales and she has responded with pretyy much “I dont know, they will have lots of referrals (that was obvious and expected) and I dont think you meet the criteria anyway as you have not tried any DMD!”

I have - i have been on both Avonex and Copaxone previously but they both made me very anxious and depressed and the Copaxone brought me up in hives. I replied with this and she responded that they were only taking people who had been on Tysabri?

Have gone from literally jumping up and down with excitement to crying my eyes out at having the rug ripped from under me! :frowning:

Eh I know luv. This kind of hyped up advertising and wording like a cure for MS does give us terrible ups and downs.

I have often got myself all worked u thinking something is gonna help, or be great. Then it usually turns out not to be and I fall flat on my face again…both metaphorically and in actual fact.

I think there will be lots of suitable candidates but only a few will be put into trials.

But try to remember, there are real risks of unpleasant and even worse side effects.

Its a bit of a chuff when your own MS nurse gets it wrong when it comes to which meds youve tried!

Hope your tears have ebbed and you feel a little calmer now hun.

luv Pollx

had the rug pulled from under me too!..not nice!

Hi Rorgan

That’s such a shame. I’m so sorry. I’ve just had another look at the eligibility criteria on the Barts blog, see: Multiple Sclerosis Research: London MS-AHSCT Collaborative Group

it seems you have to have been on either Tysabri or Lemtrada for at least 6 months and have ‘failed’ on it, but having continued relapsing and had more disease activity on MRI.

So if you’ve been on Avonex and Copaxone but not tried a level 2 DMD, you probably won’t be eligible for HSCT. But at least you can now demand a level 2 drug. Lemtrada looks like a great drug, possibly with less side effects (lower risk of death :slight_smile: and maybe you can now demand that, or at least Tysabri. Many people have been on Tysabri and have stopped relapsing and even had some disability improvements.

Maybe you should email your MS nurse again and ask what DMD your neurologist is going to give you then? Or which DMD he’s going to refer you for?

Sue

This is the criteria for the trial at Sheffield.

Thanks everyone. The problem is that I suffered so horrendously with anxiety and low mood on both of those DMDs that I came off everything! They gave me some other options but they all icarried a risk of depression with only a 35%is chance of success. I have not taken anything but painkillers in the last 12 months and have had one very mild relapse. Just the sunburn effect on my skin for a few days and now comes back every now and again. A bit painful but nothing I cant cope with.

I truly couldnt bear to go back to that place where my whole life was dark. I literally could not stop crying over the most stupid things - one example - the wind blew my car door out of my hand and it hit something and caused a dent - I literally cried for about 3 hours! It was ridiculous!

I just dont understand wny the Neuro would say I qualified if I didnt!

Now I think if I go back and say I want to try Tysabri that they will know I am only doing it to get what I want in the end!

Oh. I’m so sorry. You sounded so excited.

This isn’t going to make you feel better but perhaps this wasn’t meant to be. Mind you. You never know. You could still be chosen.

I hope you manage to get hold of your MS Nurse for a good chat.

Shazzie xx

If you do try Tysabri and find you just feel loads better, you may not want HSCT after all, so it may not be a case of doing it to get what you want. Plus, if you’re on Tysabri, you’d still need to be relapsing and have active disease activity on MRI (assuming the London criteria rather than Sheffield). And if you’re currently not really relapsing you may not qualify for the HSCT (in London) anyway.

Sue

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Just a small but important correction (and I have no axe to grind, as I’m not on them), but the “traditional” DMDs (that is, the injectables), don’t have only a 35% chance of success.

On average, they reduce relapses by 35%, which might sound, superficially, as if it means the same, but it doesn’t. “35% chance of success” would mean each patient had only about a 1 in 3 chance of any effect at all. But 35% fewer relapses means, on average, each patient gets one third fewer relapses. Obviously, within that, there will be some who do a lot better, and some who get no benefit at all - it’s only an average. But it doesn’t mean two-thirds of patients get no benefit.

I realise this has no bearing on your own situation, if it’s clear for other reasons you are done with them!

However, for the benefit of anyone reading who is considering DMDs for the first time, I just thought it important to explain that although effectiveness varies, you don’t have just a 35% of them doing anything at all.

As for being misled about trial eligibility, sorry to say, this is not unique - or even unique to MS.

When my dad was terminally ill with a very rare type of lung cancer, caused by asbestos, he was told he was eligible for a trial that had a chance of prolonging life - but the side-effects were very serious.

We were just about to go away on holiday - one of the two last holidays we would have with him, as we knew he was dying.

He was told to use the time to to think carefully about it, and let them know his decision when he got back.

So I know it preyed on his mind, and to some extent, spoilt the holiday.

He was very undecided whether to choose quality over quantity, so I don’t know what he would have opted for. But when we got back, it was all irrelevant anyway, as it turned out he’d been misinformed about his eligibility. He wasn’t eligible, and never had been. The trial was only open to patients with “ordinary” lung cancer (the kind often caused by smoking), and not his “rare” kind, that’s only caused by asbestos.

So in some ways it was easier that he didn’t have to make an almost impossible decision. Yet there was also the disappointment of not having an option he’d been led to believe he had, and that he’d had a spoilt holiday worrying about it, when there was no decision to make. I was so angry, as we can never get that holiday back. We only had it because he knew he was dying. He didn’t need the extra worry of being told to use the time to think carefully about a treatment that was never open to him. That was the Macmillan nurse! How can they get as far as telling the patient to go away and think carefully about a treatment they were never even eligible for?

I know this doesn’t make your disappointment any easier to bear, but unfortunately, mistakes do happen. You would think, even more than with MS, they would make sure a terminally ill patient wasn’t misled about his options, but my dad was.

Tina

Thanks Ssssue - that is very true. The possible side effect of depression has always put me off.

Thanks Anitra.

You are right, of course, but the odds just didnt sit right with me while I was feeling so miserable. I know that both Avonex and Copaxone work well for thousands - it just wasnt for me.

Sorry to hear about your Dad xx