Hi. I’ve been using copaxone for 3 months now I’m on the 3 times a week dose. I’ve noticed that my lymph nodes in my groin have flared up but I’ve never had problems with them before. Could this be the medication or the fact I’m vitamin d deficient, despite taking supplements for it? Many thanks.
Hi Ive been on Copaxone for 10 years & on the 3 x a week, yes I too experienced this when I 1st started it. It does flare up now & again. The problem with this drug is the effect on your fat layers under your skin, it can (& has!) give you dents where you inject. Have they offered you something else? I am now SPMS, but at mo Im still on it, not sure why, but I am going to address it when I nxt see nurse. If I was just starting out, Id go for a different DMD. Tracey
Hi Tracey. Thank you for your reply, I started the Copaxone due to the least side affects. I rotate between my legs and my hops as I can’t do it on my stomach. Mine is very early onset, so I’m hoping by starting the drugs early it keeps it at bay. Other than tiredness and abit of numbness it’s been quite mild, well I’m keeping my fingers crossed. Xx
It has certainly kept me going for 10 years, not knocking it, just it has made a mess of my legs, I cant do my stomach either, or my arms. Please don’t think Im implying you will become SPMS, I’m still reasonably not bad. Fatigue & very unsteady walking & leg pains are my problem. I believe there are some you can have tablets instead. All have them have side affects, some more severe than others.To be honest I wasn’t really advised on anything else. I’m hoping you have had some information on some other DMDs, but at the end of the day its your preference. Must admit though, I was terrified of flipping needles, now I don’t even wince!! Sorry if I have worried you, SPMS doesn’t always follow RRMS. I was just trying to say, lots of needles could be replaced by tablets, I would have started the tabs if I’d been offered them. Tracey
I’ve read good things about copaxone, they mentioned the stronger dmd but I thought to myself I’ve nothing to work up to should I need to. I’m exactly the same, I can’t inject my arms either. I keep moving it around my legs and my hips, we will see :-). I’m not worried about it all, I kinda figure what will be will be :-). Just intend to live life as I want to, probably more healthy now than I have been pre-munchkins :-). I guess I saw the side affects and thought I’d try the injections first as they don’t bother me. It was daunting at first as I’m on my own with the munchkins but I have a good support system with family and friends :-). X
Good to hear you have good support, really most important thing. Like I said, Copaxone has served me well for 10 years, just the dents in the legs malarkey I’m not impressed with, but 10 years in what should I expect! At least their only 3 x a week now, I was doing them every night, that certainly hasn’t helped my dents! Anyway, I’m too old & don’t fit the criteria to be a model, so I don’t need to get my legs out anyway! Good luck with it, Tracey x
I’m on the three times a week Copaxone injections too. I have noticed an enlarging dent in my left leg (I use my thighs, stomach and hips as injection sites). Wouldn’t it be bloody wonderful if you could actually target areas of fat and get them to disappear in an aesthetically pleasing fashion…bit like liposuction. Wonderful smooth fat free legs, arse and hips. sigh
Oh wouldn’t it!!! Unfortunately, I’m presuming your legs look mine, potholed!!! Tracey x
One seems to be way more potholed than the other…maybe that’s the fattest one? lol
Juls x
I even look a bugger in jeans now, the dents are quite apparent, mind you, I am probably making more of an issue of it because I’m aware of them, but up until recently I was injecting daily. Somethings gotta give I suppose at least I can cover them up, like I said, I wont be asked to model with em!!! The posh name is Lipoatrophy, basically means potholes!!.Just to say Chezy, I was told off in the hospital for rubbing my legs after injecting, as you should not get the Copaxone on your hands?!! Not sure why, should have asked I suppose. Just keep on rotating the sites as much as you can, if you notice anywhere getting dented mention it to them, I’ll be honest mine are significant, MS nurses words not mine! Tracey x
Hi Everyone. Thank you for all your comments about the drug :-). Tracey you’re never too old to get ya legs out lol! If that’s one of the downsides to having the injections, I’d better make the most of having them out now lol! Oh I’ve I’ve touched my legs before when I’ve not done it properly and touched the Copaxone, I’ll ask next time I see them. I made a bit of a mistake last night, started judo again and my fat is turning to muscle in my legs, injected into my muscle, most painful and scary thing ever. My leg started spamming but just feels sore now. Have you ever done that before? Xx
Hi Chezy, oh yes, many times, it hurts like hell!! I still use the injector pen, the thought of doing it manually makes me feel sick I gave up nursing because I hated inflicting pain with needles on patients, actually true!! Now I do it to myself, what a turn around! Anyway dont worry too much about touching the Copaxone if I had a £ for everytime Ive done it Id be very rich & my fingers havent fell off, yet!! Tracey x
I always used the autoinject when I first started using Copaxone because the thought of doing it myself wasn’t appealing…However I found that pretty soon using the autoinject in my legs seemed to hurt more each time I did it. SO I decided to be a brave soldier and try without it…much MUCH better - doesn’t hurt half as much. So I inject myself in my legs and tum, and only use the autoinject on my hips cos I can’t pinch my flesh AND inject at the same time - my arms just won’t stretch that far
Juls
I’m a big baby, if I cant see the bloody thing going in I’m ok. You are right though, if I grew some b***s It wouldn’t as much, oh & I’ve just found out why you shouldn’t wipe it away with your hands, apparently it can cause skin irritation, well compared to the site soreness I’d say it was the least of our worries! To wipe or not to wipe, it still bloody hurts! Tracey x
Yeah I can only do it with an Epipen thingy, there’s no way I could voluntary just stab my self wity a needle otherwise lol! Just wondering how you all keep your vitamin d levels up because I’m taking vitamins and it still dropped lower? Xx
I’ll be totally honest Chezy I am on vit D & calcium tabs but from my point of view, & it is only mine, I haven’t taken them because of my MS, more borderline oesteoperosis, so I wont comment on the benefits. Trouble with MS, we take things after the event, my MS is slowly progressing, so I don’t take them as a therapy, but I’m sure there are plenty of peeps on here that have benefits from them. It certainly wont harm in taking them. As for vit tabs in general, if you have a good diet you shouldn’t waste your money, you will be getting enough, I’m a dietitian, trust me, you shouldn’t need them. Tracey x
I think my vitamin d Was from not looking after myself as well as I should have been, busy being mummy and working lol! It’s all better now though, that’s the thing, I’ve changed my diet, exercise loads and take the supplement and it still went down? What are the best foods for vitamin d? Xx
Cod liver oil, oily fish, eggs (yolk especially) dairy products,go full fat, liver, red meat. These are all good. Of course sunlight, but we don’t have a lot of that at mo!!! Tracey x
Forgot porridge!!! Tracey x
Hi Tracey, Thanks for that info. I actually changed my diet to eat more of these things whilst taking a supplement and it still went down :-(. Whether it’s just the time of year or something is dropping my vitamin d levels, I don’t know. I’m now taking a dose of 4000 to try and bring it back up again, so fingers crossed. X