Hi! Im new here, my name is Dagnija.
Ive been living with very mild MS and was officially diagnosed only last year. After a long redusal i accepted treatment choosing Brabio (3 times a week) due to my neurologist saying it has no side effects.
Ive been on it precisely a month today and i cannot agree with no side efdects. After the firat 2 times i havent had much other side effects but I’m getting bad site reactions. I mainly inject in my legs and i cant move at least an hour afterwards. I have pain at the site for around the same time and it swells and gets hard around there. In one of the legs ive noticed a dent now ;((
I tried in my arms twice, one myself and the other my friend did for me. The one i injected was painful for 3 hours, then for around 2 days it was fine and then started getting worse again. Now i cant properly lift or stretch it without pain.
And my legs are not recovering quickly anymore so im basically running out of space where to inject. I refuse to do it in the stomach for the fear of having the same horror there… and as I’m on my own cant do the back-sides…
I was wondering if anyone else had a similar experience and if there’s anything i can do to help my body?
And another question i had…can i inject completely in the side of my tigh (outter side) as i seem to have more fat there…and no muscle.
Thank you everyone in advance!
I must say its been extremely hard (mentally, emotionally and physically) month for me.
Im thinking to get this changed to Kasimpta…at least that’s 1x month.
I also get lumps under the skin when I’ve injected. My nurse advised me to apply a gel pack after injecting . Either cold from the freezer take out for a minute first or warm ( put in a bowl of warm water) for a couple of minutes ) whichever you find more helpful.
I find injecting my stomach worse and hard lumps form underneath the skin.
My nurse suggested reducing the number on the pen down from 10 to 8 to see if that helps.
I also had a really bad reaction straight after I injected recently I immediately felt a rush and flushed and so hot like my head had been in an oven.
It lasted 10mins and then subsided.
I had been warned this can happen and it’s been noted. My nurse said it can happen
to 1 in 100 patients and it could happen
again but may never happen again. I will let her know if it does.
Ive only been using Copaxone for 6 months and I’m also running out of sites to inject.
I will continue with this DMT for the time being if my MRIs show no new lesions.
I was only given the option of this drug , my neuro said because of my age , and it apparently has the least side effects and doesn’t suppress your immune system.
1 Like
Hi,
I’ve just started Kesimpta as my first DMT.
It’s injected into the thigh - there are some other options but I’ve found thigh the easiest. And once a month is much more do-able than 3x a week - I’d really struggle to manage that! I’ve had no problems with injections/injection sites.
It does cause a bit of a flu-like reaction the first couple of times you take it (esp. the first time). So if you do start Kesimpta, take paracetamol a couple of hours after the first jab, even if you are still ok at that stage, and expect to need a lie down for a few hours.
Other than that I’ve had no problems with it over this first couple of months. Like most DMTs it does modulate your immune system and I’ve now got a cold… just the bog standard kind of cold we all get, everyone at work has it. I was told to expect perhaps one more upper respiratory infection a year than would otherwise be the case.
Kesimpta is a much more effective drug than copaxone in terms of treating MS. My MS is mild at the moment, like yours, but I’ve chosen a more effective drug to help my future self in 15-20 years time. That might be another consideration if you’re struggling with copaxone.
As for choice, I switched neurologists in order to be offered a wide range of DMTs. The approach differs depending who you ask.
1 Like
That sounds horrid. Back in my first-line injectable days, I was glad to be on Avonex, a weekly injection into muscle, rather than Copaxone because the site reactions with Copaxone could be so miserable- particularly for a skinny person without much fat to inject into.
Other DMDs are available. Don’t worry if the first one doesn’t suit- there are others.
1 Like
@claret57 Thank you for your response. Its awful… where will you inject then if you’re running out of space??
I inject on 4, as per the nurse who came to teach me… she said the deeper it goes the more painful and I’m a fairly slim woman, so she said that. But i read somewhere on here last night that 4 minght be too shallow which is why these lumps form? Im really ar a loss and scared…
I have a phone appointment with my MS nurse Monday morning so will talk to her.
Hoping i could just stop using Brabio until i get chnaged to Kesimpta.
All the best for you too!
I take it you’re vwry young then, based on that this is the only treatment you can have for now. Waa also the case for my cousin’s son (yeah, unfortunately it runs in the family)
@Leonora thank you for your comment and advice. From all I’ve read Kesimpta really seems better. Even if i was to get the same site reactions or flu-like symptoms for a day or 2, its once a month, I’ll deal with that.
I never get ill…like the colds and the common stuff…I’ve never had flu. So all this MS treatment with potential sideffects feels like such a massive blow to my psyche. Added to have almost 0 issues with the MS itself… i feel ive gone into a rather depressive state, crying most days. I’m also on my own so that doesn’t help at all.
I’m not sure i could change the neurologist as it seems he’s one of the rare in the whole area, servicing up to Brighton and there even (I’m in Redhill, Surrey)
Thank you for your support, i greatly appreciate it 
i hope you continue to have good experience with Kesimpta and its all good for you 
No I’m 60 years old so not young.
I rotate injections in each thigh and either side of my stomach.
I can’t bring myself to let my husband inject in my hips and I can’t do it by myself.
Another tip I was given is to shake the injection 3 times just before you inject into your skin so that any excess liquid doesn’t go directly onto your skin which can sting.
I do find the day after an injection my fatigue seems worse than normal.
If the lumps don’t eventually go away or I’m not happy about how I’m feeling I will ask my nurse for an alternative DMT.
Good luck and take care
1 Like
Ohh… i see.
Yes, i rotate too but the lumps don’t go away quick enough…
I usually now do it in the evenings so that the tiredness doesn’t bother me ao much. I watch a show and eventually go to bed…the next day i think im quite fine, apart from the lumps.
The pain for me is from the inside…i don’t think i get any liquid on the skin itself…
I hope one day you can bring yourself to ask your husband. I know its scary…i asked my friend to inject in the back of my arm and although i was scared, it’s one of the best injections I’ve had