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Struggling with DMDs

I started Rebif in February this year, got terrible localised reactions with inflammations of 5 – 8cm in diameter on my arms and legs, which have left brown marks, and developed hyperthyroidism as a side-effect. I stopped it 2 weeks ago, started Copaxone last Wednesday and am really struggling.

I live in the Algarve, Portugal, have little understanding of the language and there are very limited resources available. The single MS nurse spent a few minutes in the hospital, training me last week and that was it. She set the needle depth to 6mm and never mentioned changing it at all.

Looking at videos on the Internet, I have seen demonstrations of pinching the skin before injecting, different needle depths for different sites and the mention of manual injections, none of which was mentioned to me. I contacted the Copaxone nurse on Saturday and she said she will see me next week - 10 days time. She told me to change the needle depth to 4mm and not pinch the skin because I told her I was quite petite.

I got excellent phone support from Rebif in the UK, who also sent me literature in English but I can’t find a UK Copaxone support line or website on the Internet and if anyone can give me any details I would really appreciate it.

The Copaxone injections are extremely painful and result in big lumps beneath the skin, bleeding sometimes, and nausea. I am feeling very isolated and totally out of my depth and would appreciate any advice please.

With regards to copaxone the only advice I can offer you is to manually inject as opposed to using the auto inject device. I manually injected and never had any site reactions and I have heard the same from other people. Best of luck x

Hi barbsie, Are you letting the copaxone get to room temperature before injecting ? ( so long as it doesn’t exceed 25 degrees celsius ) If you are injecting straight out of fridge then it will be painful. Get rid of any air bubbles in the syringe by flicking it with your finger so the air bubble riese to the top. Also tap the autoject when the syringe is in just to get rid of any liquid which might have formed onto the needle. 4mm is a very shallow depth, I would say that if you have more than an inch worth of fat anywhere I would adjust the depth for your different sites. When I was on it I used more depth on my stomach and hips 10mm, and 8mm on my back of arms and thighs. Try adjusting the depth, you don’t have to stick to 4 or 6mm. If you are using the autoject do not pinch your skin, what you’re looking for is to make a slight indentation into your skin with the autoject and then press the trigger button. I think everyone bleeds at some time or another, I did my thigh once and the blood poured out, I’d hit a capillary. I think maybe you’re getting big lumps because your depth maybe too shallow and you should massage the injection site approx 24 hours after injecting in order to disperse the liquid. Also try using your cold pack on the site if you get sore lumps. The group I dealt with for Copaxone were called Connections healthcare. I do hope you find it more comfortable soon. x

Thank you both so much for your comments, they are really helpful. Yes, fudgey, I am taking it out of the fridge and leaving it for 30 minutes to 1 hour. I used to take Rebif out of the fridge 2 - 4 hours before injecting and that definitely helped but I reckoned that as the syringe isn’t in a big device, like the Rebismart, it would reach room temperature quicker and it is hot in the Algarve. Will try the different depths and flicking/tapping the syringe/autoject.

I would not know how to control the depth if I was manually injecting. Should I wait until I see the nurse? On average, what do people use more?

Hi I changed from rebif this year. I was on it for six months but the side effects effected me badly. I also developed an under active thyroid while on it and got the big splodges. I started copaxone just over two months ago. I had welts under the skin to start with and had to adjust injection depth but on the whole changing the depth has for the most part stopped that. I still sometimes get bruises but not very often now. I also found the after injection sting very painful to start with but this is definitely easing off now and was worth persevering with as it is now not nearly as bad. I was told by the nurse it should ease up after a few months and luckily it is. I have been so glad I swopped. My life no longer feels like it evolves around injections. I also use Connection healthcare. Hope you finds your symptoms ease off. Mish x

Hiya Barbsie

I changed from Rebif to Copaxone and had a nightmare when I started it. The site reactions and pain were horrible, to the point that I’d be in tears and shaking before every injection. It turned out I was a bit allergic to it, so I started taking a 1-a-day antihistamine which helped. I manually inject as the auto injectors make me jump and pull the needle out too quick, but I did try it to see if it helped with the reactions. There wasn’t any difference so I stick with manual. It’s much easier to control the depth and speed of it all.

I ended up with a bit of a mental block so got some Emla Cream from my GP (on the advice of a doctor friend). It’s the stuff they use in hospitals and with kids to numb the skin before they do injections. You need to get the plaster things to put on top of the cream as well. Then ut it on an hour before you do your injection and the whole area is numb so you can take your time and get your confidence back. I only needed it for a few weeks as by then the reactions weren’t as bad and I’d got my confidence back.

There is a Copaxone website which you might find helpful. It’s Copaxone.com

Sue

x

Hi Connections is the uk support for copaxone. I have been on the injections for just over a month. I understand what you mean about the pain after you do the injection it is starting to ease now. I do get really larhe lumps and swelling on my legs other sites hardly react at all. I saw the copaxone nurse yesterday and she thought itwas due to not hhaving much excess flesh on my legs. I inject just before bed and they have gone down a lot by the morning. I manually inject using the wings they gaveme as that helps with steady the hands. Hope it gets better for you and the nnurse that visits is really helpful. Barney

Hi Barbsie,

Yes, you really have got the depth set too shallow. My Copaxone nurse wanted me to use a minimum of 6mm and 8mm for preference (so for the last year it has been a full 8 - with the 8-line almost out of sight. My syringes come out of the fridge between 1 and 2 weeks before use - they are really up to room temperature before I even take them out of the storage bag.

Then it is a matter of warming the next one in the hand to bring it up to body temperature, a sharp flick with a fingernail to get the air bubbles out, put it in the cocked Autoject and screw that back together and pull the red end-fitting off. Now hold it so that the needle is down and give the Autoject another sharp slap to shake any drops off, and you are ready to go.

The skin-site reactions reduced over a matter of months and now rarely last for more than a few minutes. The deeper needle really is better. Now you can put the syringe into the sharps bin and the empty packaging into the waste bin.

After a time it becomes a matter of routine, and boring routine at that. But hey, if it cuts relapses, what does boring matter?

Geoff

This is my first time posting on the Forum and you guys are all fantastic. I was sure that I had not been given enough or the correct information and you have all confirmed this and been so kind and helpful. Avoiding all the marks left by Rebif does not leave me with a lot of places to inject on my arms and legs, so I have to get this right quickly and will try all your suggestions.

Geoff, I have to keep the meds in the fridge between June and September as it often gets too hot in Portugal and the temperature, even in the coolest parts of the house, can easily go over 25ºC.

Barney, not having enough excess flesh on my leg - the stuff of dreams!!

Sorry to butt in on your thread but I just wanted to ask Mish what does she mean by big splodges? I get site marks shich stay for at least two weeks, like red in colour and quite large? My last thyroid test also indicated a problem with my thyroid although this was shown on my bloods before starting rebif. If it’s there next time would this mean that they would want to take me off rebif. I’m happy with this dmd despite ugly site marks so not sure I’d really want to change. Thanks and im sure you’ll do fine now on copaxone eith all this good advice xxx

Hi Lisalou Yes I had big red marks using rebif which would last for about two weeks as well. I found it got quite sore to inject. I am finding, so far, I do not react as badly to copaxone despite worrying about how I would cope with daily site reactions. I think we all react differently to different medication. The reason I came off rebif was not because of my thyroid but because side effects meant I was losing three days every week to side effects and my life evolved around the injections. Although copaxone is a daily injection I just do it and get on with rest of the day. With rebif I had two hours then I was knocked out for nearly a whole 24 hours. My thyroid was borderline for a while. However when it got worse I was just put on thyroxine. It also means you qualify for an exemption certificate for ALL your meds : ) Mish x

Thanks Mish. I get a headache each week which won’t go with tablets, although this week so far so good. But despite this at the moment I feel fine about the rebif. Obviously hate doing the jabs and them red areas are tender but as I’m needle phobic I want to stay on the rebif. Ooh pros then to being put on thyroxine eh? Free meds. You did react badly on rebif didn’t you hun? Will see what my next app brings in October with the nurse. Thanks hun for replying xxx

Hi Lisa I used to use Rebif for 6 years but after that I started to get red Marks so I stopped using it . & I am fine without it , so good luck anyway Rahma XX

By the way I had MS for 15 years now! Rahma XX

Take good care & bye for now XX

Thanks. Ive had a couple of bad relapses affecting mobility slightly. And whilst uts only slightly I don’t want any more especially with a four year old to be mobile for so the rebif in my mind safeguards me of a fashion xxxx

Several healthcare professionals, in the UK and Portugal, have told me never to inject into any marks left behind by injection-site reactions and never to expose those marks to the sun, as it is dangerous - always use sunblock.

I had some blood tests done in early April, just for a general check-up and my thyroid was normal. When it became apparent that I had a problem, I had a lot of blood tests and scans done, until they said it was absolutely definite that Rebif had caused me to have an overactive thyroid. They did say though, that this is a rare side-effect and an underactive thyroid is more common. I am only on beta blockers, as it has affected my heart and am not on thyroid medication. The hope is that it will reverse itself without it and I am being retested in 3 weeks time.

My thyroid levels were haywire before the rebif and last bloods said this is still the case. My mum has overactive (I think, the one where you put weight on) too and her mum had the other one under active which is what mine is indicating (if I’ve got that the right way round). I’m due another blood test in October so will see what that one says. Xxx

Any votes on ice or heat before injecting?

I was also told not to use alcohol swabs for Copaxone, just soap and water.

I used none & was fine