I've been on Betaseron since February. I was experiencing a lot of heavy bruising at my injection sites from the beginning (I was doing manual injections at the time) and eventually set up a retraining with a Beta nurse to re-learn how to use the auto-injector over the summer. I occasionally bruise, but it only ranges from a pin dot to the size of a quarter at worst.
I was taught to reconstitute the medication and mix for at least 2 minutes (I still watch the clock every time), then I pre-medicate with 2 tablets of ibuprofen and leave the injection out for 30 minutes before I administer it. This has pretty much been my routine since about May.
In terms of side effects, I've experienced everything from night sweats, chills, muscle aches, full body aches, joint pain and grogginess usually the day after my injection, especially if I forget the ibuprofen. I know the flu-like symptoms are eventually supposed to subside but they haven't for me. It's nothing you can't live with, however. I'm a full-time nursing student and I've spent many days in the classroom wanting to crawl back into bed, but I just chug water, pop more ibuprofen and forge ahead.
Injections are a nuisance and there's something to be said about feeling fine or being asymptomatic but having to partake in this never-ending ritual that serves as a reminder that you've got a disease. I haven't had a single relapse since beginning treatment, however, and that's also worth remembering.
So many that find our forum come by because they are looking for personal experiences that most times you just can't first hand unless you talk to patients.
Anyone want to add their experiences and/or differences to this discussion to help others who want to know of personal experiences with injection types?
To answer your question: with Copaxone, I have to admit that the itching never stops. I never use a muscle with Copaxone, since it's sub-q.
I like not having to plung a long needle into my thigh muscle like I did with the Avonex. Like I said, I have hit small blood vessels before going so deep into the muscle. It's a fairly long needle. About an inch and a 1/4 I think. You can ask for smaller ones if you are thinner in the thighs. But the needle it VERY sharp which makes injection into the muscle easy, like Quix says.
I would rather do a shot just under the skin anyday. The Copaxone just under the skin fits my lifestyle. The itching I can tolerate, as it gets less with more use of the Copaxone. In the beginning of injecting with Cop, it was miseraable. Big welts. Red, burning and itching. Now I have small welts and itching. I have to admit, sometimes the itching is intense and I do keep the welts for about a week, from each injection. That is the only difficult part.
Heather
As I complained about here many times, Copaxone was a horror for me. The first few weeks were fine and I thought I'd been really lucky. Then the slight site reactions got worse and worse. Hives, welts, lumps, rashes, scabs and bruises, all LARGE. I tried every remedy, but after 2 months my neuro took me off it, and I will start something else in the near future. The itching was incredible.
Hardly anyone reporting here has NO reactions to Copaxone, but mine were off the charts. Gollie's too, so maybe she'll describe them again.
ess
My wife just started betaseron...her third shot is tonight. Betaseron is actually a sub-cultaneous shot, like Rebif. She is using titration, or easing her way onto the shots...starting with a .25 dose and over a month(about) increasing the dosage until it is full.
The "Beta Nurse" suggested that the flu-like side effects generally happen to all at first but basically disappear in the bulk of people rather quickly. While tritrating, the body reacts to each time the dosage is increased but quickly adjusts. This is in her experience.
The first night my wife had a headache, chills, sweats, crappy feeling, etc, but her second shot actually had very little affect on her. She slept much better.
She had no site reaction to either shot. However, my wife is a tiny person and the nurse suggested that the needle setting might have to be adjusted on the auto injecter after the first round of shots, and in fact the first probably did go too deep and into her mucsle....she had to a pain in the mucsle since.
Thanks, I think this will end up being a useful thread!
Just to add on, and so far I think this may only apply to Heather.
What do you feel (besides the differing side affects of the meds) the major difference is between subcu and intra muscular? And, since you get the itching under the skin for a few days w/copax, and you have to inject every day, is there ever a time you don't itch?
Also, do you have to locate muscles? Or, is the needle just long enough to hit them?
Q - WOW! No site reactions, that is amazing!
-SL
I am on Avonex. I took my 12th injectoin yesterday. Sometimes it hurts and others it doesn't. I have been getting bruises. I do all of the prep and even ice. I was on the full dose but the doctor had me back off to 1/2 dose 3 weeks ago.
I don't think I am tolerating it very well, but it has only been 3 months. This is just crazy and very frustrating. :(
I was on Rebif for about 8 weeks starting in Feb of this year. My treatment was suspended recently due to an elevation in my liver enzymes. This is the only side effect I experienced, but is a significant one. I will try Rebif once more next month if my enzymes come down. If I have problems with it again, I will need to discontinue and try something else. The other interferons would be out so it's either Copaxone or Novantrone. I'm getting some mixed messages on this from my neuro.
Anyway as far as the Rebif injections go, I did not have any problems. I used the auto-injector. It was quick and easy to use. The injections did not hurt. I was able to do all my own shots except for upper arm, which my husband did for me. My site reactions consisted of large red marks, maybe 4cm in diameter. Occasionally this was followed by mild bruising, but not always. The marks did linger for quite a while but did not bother me. The sites were not tender, nor became lumpy. No itching or pain. I did not find it difficult to incorporate the 3x week shot into my routine. I did not experience the flu-like symptoms, mind you, my treatmen was suspended before I had the chance to make it up to the full 44mcg dose.
I was pleasantly surprised by how easy the injection process was. I was dreading it beforehand but really there was nothing to worry about. It never occurred to me that my liver of all things would cause problems. If I can't continue with Rebif, I would prefer to first try Copaxone and hope that I can tolerate it, and that it will make a difference with my relapse frequency (2 relapses within 6 months, not good). I would like to give it a shot, no pun intended, before moving on to more aggressive alternatives.
db
I have been on Avonex and am now on Copaxone. With the Avonex, it is exactly how Quix describes. The needle really does go in, like going through butter. I too have hit some small blood vessels while injecting during those years and had a spurt of blood shooting into the air. Scared the dickens out of me. I applied pressure to the site and only had slight bruising for a couple days after injection.
I did have some "tough" spots on my thighs, where is made it difficult to put the needle in. I just changed needles and tried another spot. I did have flu-like side-effects from the Avonex for about 4 days, then felt better, then it was time for another injection. I was one of the unlucky ones and never got over the severe flu-like symptoms, so I finally gave up the drug after 3+ years.
I started Copaxone in January of this year. I have no side-effects from Copaxone, but do have alot of injection site reactions. I have a lump that itches under the skin, immediately after injection and it itches for days. Going just under the skin isn't too bad, but the itching can drive you crazy. Just like it did for 'ess.' I have found that by NOT using the auto-injector, I have less of an injection site reaction, but still have the lump and itching.
There are many more areas that you can inject the Copaxone versus the Avonex, which goes into the thigh muscle, so that's a plus for Copaxone. I have no flu like side effects at all after Copaxone. That's a relief for me, so I am able to get on with my day immediately after injection, unlike the Avonex, which put me down for days.
I used to be an insulin dependent diabetic, so I am used to injecting myself every day. As soon as I was able to get my diabetes under control and no longer take insulin, here comes my need to take Copaxone. Thank god I have alot of extra skin left over from my massive weight loss to inject the Copaxone with the least amount of pain. That comes in handy.
After 3 months of being on Copaxone I experienced my first relapse using that drug and am currently in a relapse now. It seems milder than the relapses I had when I was not taking any of the DMD's, so I am thankful. I am going on 4 weeks now and hope that it ends soon.
Which ever drug you choose to take, the side-effects can be worth the suffering, knowing you are doing everything possible to keep your MS at bay. At least we are doing something, rather than nothing.
Best Wishes,
Heather
I've been on Avonex for a year now. This is intramuscular, to the entire needle goes into the hilt. I was conerned at first. I can draw my own blood, but, I always needed someone else to first pierce the skin with the needle.
Well, they send a needle that is not large and is very sharp. You just press the needle through the skin, no need to jab. It truly goes through like it would through firm butter.
Usually the pressing in of the 1cc of fluid just causes a little discomfort. Pulling it out none at all. I have had NO injection reactions. The site is a little tender to deep pressing on it for a day or so, then nothing.
One time out of 53, I apparently went through a little artery. When I withdrew the needle I had two spurts of blood, the first was about 3/4 of an inch and the second about a 1/4 inch. I held it firmly for about 10 minutes. No problems. Just the tiniest of bruising that came up to the surface on about the third day. Obviously I am not blood squeamish.
Side effects - about 12 hours of increased stiffness and muscle soreness. No fever, no headache, no chills. After about 4 months the symptoms duration and severity dimished remarkably. Recently the side effect "may" be a little worse. But, it may also be the relapse I've been in, for the last 5 weeks or so.
I have two relapses, one at 6 months and now this one at 11 months. Throughout the last 9 months I have had progressive weakening of my right arm. So my meeting with my neuro in 3 weeks may be discussing a change.
Secretly, I still believe I might have Progressive Relapsing MS. My neuro says to have a progressive form I would have to have a heavier burdern of lesions. I only have about 7 and they are tiny. But, I have had very slowly increasing right hemiparesis, punctuated by relapse during which the weakness is much worse then stabilizes, but never quite back to the earlier strength.
We'll see. My last visit with my neuro was not good. He became angry at me and gave me the option of changing to any treatment I wanted - though I had not expressed a problem and he had not discussed any reason I would need to switch. I saw his ego and his uncontrolled problem with anger. I was depressed and intimidated by this for a loong time. But, I can't live that way.
We'll see. If I have to move up I would prefer Tysabri over Novantrone, which are the two options he offered.
Quix