Following on from my very recent official diagnosis last week as posted.
My Neurologist telephoned me last night at 8pm following his meeting with the other consultants. I have to say I was both very surprised and impressed to receive a call at that hour.
The outcome was that I will be allowed to have Kesimpta as I requested and also as he suggested initially but they have also offered with some recommendation that Mavenclad ??? might be a better option.
He explained that due to my age ( 57 in feb next ) that I am more prone to possible infections and therefore Mavenclad would be a better choice.
I am still keen on Kesimpta as I believe it is the most effective DMT ?? however this may also tie in with they’re concerns re my age etc.
I had a second MRI last week and a lot also depends on whether there are any changes from my first MRI but they have not yet had the report.
I am also booked in for further blood tests now in January prior to any DMT.
Could anybody with experience of either DMT please offer any advice or experience so I can possibly make a more informed choice. Any help would be greatly appreciated.
Whilst I am here I would also like to say that the treatment I have received from all the staff and departments at Salford Royal hospital has been in my opinion absolutely superb during this worrying time. It is something I wouldn’t want myself or anybody else to go through but on the other hand I couldn’t have asked for better treatment than I have been given.
Best wishes to all
Dave
It is good to hear that you are getting good support from your medical advisors. I have no experience of either drug, but if a clutch of brainy neurologists had put their egg-heads together to figure out what they thought best and then phoned me mid-evening to tell me so, I would be inclined to go with whatever they advised!
Do your own research the MS Society and MS Trust websites.
Mavenclad is actually a more effective drug with a higher threshold to qualify for.
I had a similar choice after being taken off Tecfidera for the second time because of low Lymphocytes. They seem to be concerned about infection risk with older people with Ocrevus and Kesimpta. I was diagnosed at 62 and now 69.
Mavenclad is also being trialled in Chariots for people with SPMS, so may be considered an each way bet.
The administration by tablet is very novel spread in 4 periods of 5 days each over 14 months.
I found it easy with no side effects but that is no guarantee.
Hi Alison
Thanks for your reply. I am leaning towards the same thoughts as yours, After all theres no point seeing a specialist if you then ignore their advice. Ive read quite a few things about Kesimpta and watched quite a lot on youtube but I had no knowledge of Mavenclad. While reading experiences today on the internet though I have found mainly negatives but thats the internet for you I guess.
I will do some more research and wait to see how my latest MRI turns out Fingers crossed they will be ok.
Take care
Dave
Thanks crd
I appreciate your reply. You have given me a little more confidence now.
I appreciate that we will all respond differently to the drugs and it is largely a gamble, but it makes me feel slightly better hearing some positives.
Hopefully if I go ahead I will also have no side effects.
Cheers
Dave
Hi,
I was 46 when I started on Kesimpta - it was the only high-efficacy drug on offer for me.
One year on, the only real side effects have been an increase in colds - I was told to expect this, and I’m just glad it hasn’t been shingles or covid problems. However, I can see that having your immune system pulverated at 57 might not be such a good thing.
From my research, cladribine/mavenclad also looked very promising. I’d have opted for it, I think, had it been on offer - so great that you can do that. It does not seem to be so widely on offer on the NHS, especially as a first-line treatment.
If you want to do more research, you can google “MS DMT infocards” to find a guide to the various DMTs that was more detailed than I found elsewhere, but still seemed to be from a reliable source.
Those MS Selfie infocards are definitely the best source of info out there, I think.
@Leonora @alison100
Hi and thanks very much for the tip. I have just searched and found the infocards and they look very good.
Looks like I have some homework to do now. It will be good to go back a little better informed.
Best wishes
Dave
I recently started kesimpta in October, I was 56 in November. So far the only issue I’ve had is after the 3 rd loading dose felt like I was coming down with a cold then a couple of days later fine. For me personally it was important to be on a high efficiency DMT due to having 4 relapses since December last year and the brain stem lesion that’s caused several issues . I hope what you choose gives you some relief it’s slowing down the progression for you.