Last reply 1 year ago
Consultant offers any DMT…

Hi, I had a private appointment with Dr Mazibrada yesterday after I was told the waiting list to see him to discuss DMTs was over six months.

He is a really nice man and very clear but very sensitive in the things he said. He hadnt read any of my notes, letters or seen any of my scans. I had to tell him I’d had them all sent to him. I basically had to give him a quick overview of things. He then found my scans on his computer and showed them all to me. From what I could count as he talked through the scan there were about 7 or so areas of activity in my brain and he pointed out some ‘black holes’ which were basically just areas where the brain has been destroyed basically. My most recent MRI with contrast showed active disease.

He did very quick, but alot of tests of all of my reflexes – some that i didnt know i had – and tested my balance and everything. He said basically i was absolutely fine. He was very reassuring.

He suggested that the number of attacks a person has from the first one sometimes help to predict how the disease may progress. He said mine seems to have been a first attack where my right eye movement was paralysed 12 years and then 3 attacks in a short space of time from last June to now involving vertigo, my left eye being partly paralysed and then altered sensation in my waist but he seemed to say that this was like one episode.

As a result of all this information he said he would recommend a first line drug to try to control it and briefly discussed beta interferons.

Because of the advice Ive been given on here, I asked if i could have a drug like Lemtrada and after a while of talking about the lower level drugs he said ‘well of course, that is a first line drug too’ . He said basically that i can have whatever i want but that the lower level drugs have minor side effects but the harder ones have serious side effects. I asked what he’d do if i was him and he said have the low level drug, he said he thinks I should try that first. He then said I could move to Lemtrada if I wanted to and that his decision wasnt based on budgets or anything. He thrn said that Lemtrada was an option now but with NHS budgets the way they are he didn’t know how long the funding would be there.

Ive got to have another appt with the MS nurse in Wolverhampton to discuss the treatments. I could start the low level treatment immediately but the other one has a three month waiting list. I think basically the decision is whether i want to sort of tick the disease over or smash it.

He described my ms as mild to moderate which was good to hear as i was scared that he was going to say it was really active and progressive but Im concerned that this position could potentially change quite quickly I imagine?

Ive potentially got alot of thinking to do but reading about some of the beta interferon drugs it suggests that long term evidence suggests the effects may be ‘much bigger than modest’ if you start on them early. Im a 40 year old man, work full time but on reduced hours at the moment and have a 5 year old daughter

I was determined to go down the Lemtrada route but Dr Mazibrada’s advice has made me consider the other options. I told him I didnt want to be disabled and we discussed how we It’d help to get other people’s advice on treatment based on this appointment. Ive already had some great advice about Lemtrada and I wondered if opinions would change based on what Dr Mazibrada said.

Thank you

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Hi @molineux1047, I was offered Avonex (injecting once every week) as my first option by my consultant I think generally they advise on the best one for your situation. For me now he is suggesting Lemtrada as me and my husband speak to him about our future and how we wanted/still want children and it is something I can take and then hopefully never have to take anything again with other options I would have to stop treatment and then start again.
The low level drugs are easy to live a normal life whereas now I am reading about the higher level drugs there are more things to take into consideration and changes to be made.


stumbler
1 year ago

@molineux1047 , you do have a bit to think about now.

As you’re probably aware, the latest philosophy seems to be to hit MS hard and hit it fast. This tends to point you straight to Lemtrada.

The conservative approach would direct you to the first line injectables. This would be a regime that you’d need to integrate into your normal daily routines, even if you want to go on holiday.

But, there’s a range of meds in between, e.g. orals and infusions.

The question is whether you would wish to start at first level and risk potential further damage, which may be disabling, before you considered moving up.

It’s a difficult call, but you need to include your lifestyle into the mix when you make your decision.


ashory
1 year ago

You are doing the right thing in researching every drug option you have.

I think what led me to my decision was that I don’t see MS as a “wait and see” disease. It’s not something you can reverse once the damage is done. I didn’t want to wait and see how much further damage MS could do to me if I decided to be conservative in my drug choice. I know that if I had chosen one of the lower level drugs and in that time lost my ability to walk or live independently I would have kicked myself (or had someone else kick me) for not hitting it as hard and fast as I possibly could. The more aggressive drugs still don’t have the capacity to reverse the damage that has been done, so the goal is to stop it happening in the first place. (Yes, I know some people have been fortunate to see reversal of some symptoms but it is NOT something that is a given and should not be relied upon or expected).


molineux1047
1 year ago

Thanks @ashory and @stumbler and @melinda_kaur_sangha that really helps. I pretty much agree with you about not liking the wait and see option too. Lemtrada had been something I was prepared to fight for and now Ive been given the option its left me wondering again. I think its the thought of not following the consultants advice and developing a serious side effect from Lemtrada or following his advice and my MS worsening. I didnt really think he’d classify my MS as mild to moderate and now it gave me hope – probably false – that it may always be like that.

I just need to weigh things up and do some more reading I suppose Thank you again


tessa
1 year ago

Hi @molyneux1047
Interesting to hear your experience….I am moving soon to West Midlands and had already decided to have a consultation privately with your new consultant.
Just to get things sorted really.
How did you manage to get your scans sent to him electronically .
I assumed he would have to request them himself ?
My images on disc are all in Newcastle ..I only have the report .
Would be good to hear more…perhaps you could pm me
Tessa


molineux1047
1 year ago

@tessa I just told the secretary I booked the appointment with the dates and where I had the scans and she made sure he had them when he logged into his computer 🙂


geordie57
1 year ago

Hi, I have dr maziprada too!! I have had 2 sensory relapses in 2 years. My last MRI showed active lesions. Diagnosed 6 years ago I went to the Lemtrada briefing only 2 weeks ago. I thought I was gonna go for it but came away asking to start on a lower risk medication and see how I get on!! I have 2 girls who are 6 and 3, just decided I wasn’t in the right place yet as have no support except my husband! It is a huge decision to make, not one taken lightly!! Good luck!


mousy
1 year ago

It’s a really difficult decision to make…risk vs reward.

I too went into an appointment ready to fight for Lemtrada…and came out with Tecfidera. I’m now 15 months on, latest scan shows NEDA and is static so it’s working for me.

It’s 2 tablets twice a day and minimal side effects which can be easily overcome.

good luck with your decision and treatment.


molineux1047
1 year ago

@geordie57 and @mousy thanks for your advice. Im steering towards tecfidera right now but that changes from literally one minute to the next….

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