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Another Rebif question

Hi,

Sorry, another Rebif question. I have been on Rebif for two and a half weeks now and it is really wiping me out. Does anyone else get this? I don’t mean the flu like symptoms. I mean just feeling like a real Zombie and being really tired. If so, did your symptoms go after while? I am on the low does at the moment and I am dreading what it will be like on the higher doses. I have quite bad swollen glands in my throat aswell. I was feeling so well before I started.

Another one. Since starting injecting. I have noticed that I don’t get any site reactions when I inject into my thigh but I do anywhere else that I have any fat. I don’t really have any on my thigh as I cycle. Is it OK for me to just inject into my thighs?

Thanks very much,

Adrian

Hi Adrian

I was having a terrible time generally when I started injecting Rebif so it’s hard to say what was a reaction to the drug and what was just MS symptoms. My legs were very achy and painful and the fatigue was horrendous. It did calm down just in time for me to up the dose and now I very rarely notice any symptoms at all although if I’m going to have a restless leg night it always seems to be on an injection night. Still not sure if that’s a coincidence or not.

As far as injection sites go, my thighs are the one place where I get bad site reactions and they take ages to clear up (and for me the thighs are the only place where I have any fat!). You do need to rotate injection sites and my worry would be that if you only use the thighs you would be using the same sites too often. I use 12 places on each of my thighs, 6 on the upper thigh and 6 on the outside thigh but with 3 injections a week you would soon get through those. If you don’t rotate them often enough you run the risk of permanent damage to the area of tissue just under the skin, like little craters. Perhaps you should discuss the issue of injection sites with your nurse? Some people use the upper arms but I don’t because I like to wear sleeveless tops when it’s hot and I don;t want nasty red blotches where they are visible. I use thighs, hips (muffin tops) and stomach. My hips and stomach only give me 4 sites on each side so I do use those more often but the skin reactions clear up and I can still vary those 4 sites a bit.

Hope this is some help and hope your side effects calm down soon. Are you taking painkillers with your injections and for a while afterwards? This does help a lot. The other thing is to accept that your body will take time to adjust to this new drug and take time to rest when you need to. Two and a half weeks isn’t very long so stick with it for a bit longer and see if your body adapts soon. Your body is battling the MS and a new drug so it’s not surprising that it’s having an effect on your energy levels.

Take care,

Tracey

I started straight on the 22 and felt terrible!! Slept every afternoon for 3 months. Side effects are wearing off now and am feeling much better. Work much easier and feel more like myself again. My rebif nurse told me if you suffer from the side effects it takes a few months but to stick with it maybe up to 6 months. After the first few weeks I was crying saying I couldn’t stick it out. Glad I did now! I took nurofen and paracetamol alternatively every 2 hours at first to keep shivering, aches and headache away. Can now last the 4 hours in between doses. It’s nothing to do with pain threshold (I have had 2 babies with no pain relief!) just the way your body tolerates the Rebif. As for site reactions these are improving too especially on my stomach. My legs are still really bruised but I was running half marathons before attack that led to diagnosis and am jogging again so not much fat. Stick with it, it will get easier. X

Hi Adrian, I started a couple of days before you, I think. I’m getting a bit of a sore throat and a mild headache but not a lot else, yet. And like you, I don’t get any marks when I I me t I to my thighs which are still quite muscley from mountain climbing but it really hurts. However when I take the pain free option and inject into my chocolate formed bum or tum, I get red blotches. I’d rather have the blotches than the ouch factor, so I rotate bum and tum. Xx

Hi Adrian,

could it be possible you have a viral infection? I’ve not heard of the swolen glands related to Rebif before. Might be a good idea to see your gp about this as it may not be related. Any symptom changes should be reported to the ms nurse as they are supposed to monitor you when you first start a dmd.

I was once told by my ms nurse that an untreated infection could cause a relapse.

I have found it to be important to rotate injection sites as much as possible. I’ve been on rebif 7 years and i would think injecting into one area in all that time would not be good for the skin/tissue.

I inject stomach/bum/thighs/arms. I do however avoid the arms in the summer when the blotches are noticable.

I hope you start to feel better soon and please get checked out. Speak to your ms nurse first to see if your symptoms could be related to the rebif.

best wishes

Teresa.x

Hi,

Thanks very much for your replies. Sorry, I am getting really depressed. This medication is throwing me all over the place. Physically i am fine. I actually played squash the other day with my 15 year old nephew. I would never have been able to do this 3 months ago. I think I will try Citalopram. I am on st Johns Wort and hat has worked really well. I felt really good about three weeks ago, I had just come out of relapse and was about to try and get back into work but with these side-effects I feel that now I can’t. I have problems with access with my seven year old daughter. This has been going on for six years and I am finding this very wearing. I thought that this may get easier when she knew that I had MS but it hasn’t. I get to see her for the grand total of three hours a month.

Anyway, thanks for your replies. I will ask the GP about Citalopram and see how it goes.

Happy Mother’s day.

Adrian x

Hi Adrian I think it’s very early days for us in terms of our bodies adjusting to the drug but it does warn you about the possibility of depression. Maybe a call to your nurse in the morning ? Thinking bout you Xx

Thanks Mrs H. Just not coping very well at the minute. I’m sure things will get better. x

I was going to say that too…it does say depression is a side effect. Please see your GP as depression leaves you feeling wiped out, unenthusiastic etc. it really could be down to that. Hope you get it sorted x

Hi Adrian, Sorry you are finding things so difficult. Perhaps give your MS nurse or BUPA support nurse a call in the morning. As for the swollen glands, yes I have this problem. They get swollen & sore around my jaw & groin. Since I started on the Rebif in October, my WBC count has continued to drop, so I assume it’s related. I have to say I feel far worse on Rebif & the dose has been dropped to 22mcg with a view to changing to copaxone. I liken myself to a sloth & just seem to function in very slow motion, spending a lot of time lying around doing nothing. I was adamant I would go the 6 months to see if the side effects eased, but admit it has felt quite soul destroying at times. However, many people on here have very positive experiences of Rebif. Anyway, I really hope you feel better soon. Keep us updated. Anne

Hi adrian I started injecting in November. I don’t have swollen glands, I would get that checked out, but I definitely have the ‘zombie’ side effect. Within 1- 2 hours of injecting early evening, I feel knocked for six. I can’t make myself wake up until lunch time the next day. It feels like I have been drugged, which I guess I sort of have, but it is horrible. I am so very tired but it is more than that. I am sort of conscious but not able to get going. Even after I make myself get up I am never fully with it, until tea time. I can do jobs that don’t require to much thinking power but I find it really hard to concentrate. By tea time I am back to normal but it does seem to take all day to feel fully myself again. My ms nurse said for me she doesn’t think it will get any better and I may have to swop. However I took ages choosing rebif and want to make sure I stick it out and give it a fair chance for side effects to go. It is early days for you, hopefully things will change. Mish

Thanks for your replies again. I feel a bit better today. I have upped my SJW and that seems to be working. Touch wood. It is just so frustrating as I felt so good before I started. I am seeing my MS nurse for my first bloods on Monday. I will have a good chat with her.

Thanks for your support. It is very much appreciated. I have been up in Wales for the last five days and my family are lovely but they don’t really understand, so it is very nice to have this outlet. Thanks again. xx

Glad your feeling a bit better. Ive ordered some of that SJW on your recommendation so fingers crossed it makes me feel a bit more uplifted! X

Hi Adrian Glad you feeling a bit better. When you up to 44 ? Xx

mrsh

after he is 43?!

  • runs (crawls!) away…

ellie x

Haha…!! Nice one…ask a daft question… Xx

…and an idiot (me!) will answer it!

keeps ur post at the front adrian!

ellie x

Hi,

Yes SJW is really good. I would try HRI good mood which I use. You can buy it at Amazon for £5.99. Feeling better today. thanks. I am on 44 mcg by the end of next week. I think. Unfortunately, I have missed a few as I felt so bad. I will stick with it now. Don’t give up the day job Ellie. :slight_smile:

Btw Mrs H, when you inject into your thigh, change the injection depth to 4mm, then you won’t get the pain as it won’t go into the muscle.

Thanks,

Adrian x

Thanks, Adrian but I think I’m going to stick to my (very) ample tum and bum. My bum is still quite toned and firm so only two sites on there but my tum provides plentiful space…I can easily get three sites on each side. So there’s 8 sites in total. Xx

Just out of interest I’ve read sjw can effect ampripilyn which I’m on, so it looks like a no for me. Anyone else any ideas. X