Please help - Some questions regarding daily shots

A board to discuss the Multiple Sclerosis modifying drug Copaxone

Please help - Some questions regarding daily shots

Postby pager » Sun Jun 14, 2009 7:42 pm

Hello! I am newly diagnosed and am interested in some opinions. I just started the injections...today was day two! (I can't believe it.....after my first shot I just cried and cried.....mostly from pent up anxiety....but I did it! Whew!)

My current plan is to follow the Copaxone instructions and do the shots in each of the seven areas over the course of a week.

My questions:
Do many of you choose not to follow that routine? If so, where do you primarily inject?

If you don't do the seven locations, why?

Regarding the hip/bottom: do you use the hip just under the waistline or do you use your butt cheek? :-)

On the thigh, do you use the front of your thigh or the side?

If you rotate over the seven locations, does that seem to help with the skin issues over time?

Any thoughts, opinions or advice is greatly appreciated!

Thanks so much for a great forum and a place to connect with others. It feels so lonely right now. Thank you all!
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Postby notasperfectasyou » Sun Jun 14, 2009 9:02 pm

Pager,
Welcome to TIMS! This is a great place to explore and start taking charge of your MS. Read my post in the copaxone forum on sting reduction. This worked wonders for us until we got off shots entirely. On your question abotu sites, we never did it. Now, just to be clear, Kim never had any of the skin issues some report. But, we did all of Kim's shots on her bottom. All of them. We also did her shots on alternating days, 2 shots each day we did them. We found after a year or so that the rules were kinda flexible this way. The thing we did was make sure to be spacing the shots around her bottom at least 2 inches from prior shots and we alternated sides. You'll get the idea if you read the sting reduction post. Write back if something isn't clear. This is a really bad example, but you know how they show the various cuts of beef by drawing lines on a cow? I had a grid system going on Kim's behind. No shots anywhere else. Right side one day, two days later on the left. Good Luck. Ken
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Postby pager » Mon Jun 15, 2009 6:13 am

Ken, that is very interesting!! Thanks for responding!!

So you just "do her bootie" so to speak? Is that correct? I have a new friend that does that too, but her bottom gets quite sore. Does Kim receive a shot daily or every other day? What were your docs thoughts on the shot locations?

Has Kim experienced the dimpling or hard spots in the shot areas? I am very sad about having my body look so bad, especially the parts that others see, like legs and arms.

You seem like such a loving and supportive husband. She is blessed to have you!!
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Postby Arcee » Mon Jun 15, 2009 6:33 am

Pager, I do my shots basically in a circle around my middle. I learned the hard way that, for me, injections only work where there is a certain amount of the right kind of fat (i.e. not cellulite) so my arms and thighs don't work because there is not the sufficient amount or the right type of fat.
Also, I inject every other day - - there is a thread about that on this site. So I do four sites - right stomach, left stomach, right hip and left hip - and within each of those sites I have four particular locations I rotate. And I do stay in the hip area. I also inject manually.
I hope this description helps you. It took me awhile to figure out what would work best for me, and I totally remember feeling anxious like you describe. But it sounds like you are well on your way. And believe it or not, at some point it will feel more like a routine thing. Best of luck.
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Postby notasperfectasyou » Mon Jun 15, 2009 6:33 am

pager wrote:Ken, that is very interesting!! Thanks for responding!!

So you just "do her bootie" so to speak? Is that correct? I have a new friend that does that too, but her bottom gets quite sore. Does Kim receive a shot daily or every other day? What were your docs thoughts on the shot locations?

Has Kim experienced the dimpling or hard spots in the shot areas? I am very sad about having my body look so bad, especially the parts that others see, like legs and arms.

You seem like such a loving and supportive husband. She is blessed to have you!!


Thank you Pager,
we don't have any current update, Kim's been off any kind of shots for a year now. We did the shots in the evening, maybe 30 minutes before bed. This way she could sleep through an discomfort that might be, but really, having reduced the sting was the main thing we did. So yes, I kept a spreadsheet on the computer of shot sites and made sure I was at least 2 inches from the last one each time. We only did her bootie so we don't know about any other parts. Kim did not have skin issues as a result of the shots. Ken
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Postby Needled » Mon Jun 15, 2009 7:15 am

Hi Pager, Welcome! Probably one of the last places any of us want to be, but here we are. And there are a lot of us, so you don't have to feel so lonely any more.
I've injected every day for three years (I've only missed a few days so far). I've modified the schedule a bit over time, but I inject into my abdomen, thighs, back hip and "saddlebag" area on a rotating basis. I sepated by stomach into 4 areas instead of the 2 they have on their charts. It was just too good and too big an area to not use more frequently. As for the thighs, one of the Shared Solutions nurses had said you can widen the area so that it's the same as the seams of your pants. Not just the narrow patch right on top of your thigh that doesn't have much fat. Does that make sense? I do my arms about once a month, because they just swell up like and egg and are sore for a while after. In place of them, the Copaxone nurse suggested the "saddlebag" area at the top/side of your thighs that creases up when you sit. I don't have a lot of fat on me, but she found some there!
I am fanatical about rotation and placement of the shots. Like NAPAY, I have a grid for each location. I mark it off with the date so I know what I did where and when. I am a coward when it comes to manual shots and have always used the AutoInject. But, I'm starting to have issues with lipoatrophy, and at some point will probably go every other day. Like Arcee suggested, check out that thread.
Best of luck with everything. :)
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Postby pager » Sun Jun 21, 2009 12:51 pm

Hello again! I appreciate all of your responses and ideas. Made it through the first week and it is getting better. I am not sure that it will ever be easy. My newest method is the autoject as I think I hit some muscle when I was manually injecting. (I was going in the depth of the needle....yes, I was pinching as much as I could.) My left thigh that I manually injected over four days ago is still sore, but my right thigh that I did the next day with the autoject seems fine.

I went cycling the other day ago and that felt rather good.

At times I feel better about the effects on the skin from the shots than I originally did, but I still have so much overall sadness and fear about my MS. Sometimes I think I will never get beyond feeling tired and sore all of the time. I miss being the energetic and active person that I used to be and that other seem to expect from me. It seems to me that others handle it so much better than I have been able to do so and I can't figure out how to become stronger emotionally as well as trusting God to help me handle this. My MS is rather mild and then I feel silly for feeling so helpless when it could be so much worse.


Okay, I am done dumping. Thanks for listening....
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Postby Wonderfulworld » Sun Jun 21, 2009 1:46 pm

Hi Pager
sounds like you are doing great with the Copaxone so far, well done! It's a bit scarey when you start the injections but soon you'll be jabbing them in without a thought :wink:

I'm on Copaxone 7 years now, I have never used my arms. I did with Rebif once or twice and they stung so much that I chose to just use upper/lower stomach, hips, bottom and legs.

I was rigourous about rotation and I had 70-something sites marked in my diary but I still got lipoatrophy after about 4 years on Copaxone, but only on my legs. I was quite slim until about 2s year ago, there wasn't a whole lot of "wobble" in my legs especially so I wonder if the lack of a lot of fat meant the lipoatrophy set in....? I have put on about 10 lbs since before I got pregnant and had my son, so I've a bit more weight on my legs and stomach to inject into. It's made finding sites easier and the lipo hasn't got worse......or better.

I have done extremely well on Copaxone, I've not got any worse in the years I've been on it, so a bit of lipo, although upsetting, is worth it - for me.

You feel free to vent anytime you like. MS is a horrible illness and we have a lot to bear, stuff that people don't see. It takes a long while to "get your head around the diagnosis. One day at a time, learn your limits, talk to people and hang in there.

:wink:
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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Postby pager » Sun Jun 21, 2009 7:12 pm

Hello wonderfulworld!

Thanks for your support. I too hope that I can get to where you are in this process. You sound like the Copaxone has done well for you over the past seven years. How did you track your shot spots? I am trying to be descriptive, but now that I am back on my left hip tonight, I am not exactly sure where I truly put the last shot in that location. Also, many people talk about using the bottom, but Copaxone doesn't list that as an option. Can you do it yourself or does someone help you? Is hard to sit down the next day?

My depression has been bad today. It has been part of my story for most of my life, but now having the MS too seems like too much. I am working hard on "one day at a time", some days much better than others. (Obviously not today!)

During the next couple of weeks I am going to a couple of MS classes so maybe I will feel better about things and the future. I have read so much...books and the posts on this site, but still feel unsure about everything.

You sound like you are a young Mom. I too am a Mom of two girls, first grade and fourth grade, however, I am in my late 40's. It hard not to do all the things I used to do with them and the energy to keep up is challenging. It makes me feel sad.

Okay, I need to go up and take my shot and go to bed. I know I sound down....hopefully tomorrow will be a better day. Thanks so much....I appreciate not feeling so alone!
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Postby Arcee » Mon Jun 22, 2009 7:09 am

Pager, it's a lot you are adjusting to now. Personally, I think if you didn't feel a bit overwhelmed or depressed by it, there's something wrong :)

One thing I discovered that may help you at some point: if you go back to manual injecting, you can adjust the angle at which you hold the syringe when you inject, and that will help to keep the needle in the fat area. So rather than go straight in at 90 degrees, I angle it at 45 or even closer to 30 in certain locations and avoid muscle.

And I record the locations in that (overly thick) calendar thing Share solutions provides. I mark a spot on the picture and then flip back through prior weeks to see what is ready for a repeat. For awhile, I also did use my cell phone to take pictures just to be really sure.

Hang in there!
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Postby Wonderfulworld » Mon Jun 22, 2009 1:07 pm

Hello Pager, nice to hear back from you!

How did you track your shot spots?

I do clusters for a week at a time - so all stomach - upper outer right tum, upper outer left tum, lower right tum, lower left tum, middle right tum, middle left tum, lower middle tum. Sounds like I have 7 bellies :lol: . I think I got so peeved about the lipo I just rely on memory, sight, and feel - some areas bruise, some areas get lumpy - so I can see and feel where I've injected into recently.

The bottom thing - well, areas I use are the areas on the upper bottom - on the side - I can sort of feel a whole area of fat there - find your hip bone in your lower stomach/top of leg area....then if you slide your hand down an inch you should feel a bit of fat there? Also the area near the back of your waistband, but near your side - not sure if I'm making sense.

Can you get the Copaxone support nurse out for a visit? - do you get that service where you live? I asked mine to draw on me with a marker what bits I could inject into - it made it easier to remember.

Yes the depression is hard. I've had bouts of it before diagnosis, but I now think it was MS starting then. It's hard to know what's MS, what's depression and what's real....I feel much better since starting very low dose amitriptyline for nerve pain. I endured 10 years of dreadful insomnia...it would get a bit better and I'd ignore it...but finally I needed help with the nerve pain. Getting proper sleep is crucial to coping with the depression too, they go hand in hand. Don't apologise about feeling down. It takes a long time to come to some kind of terms with MS.

I'm a young-ish Mum - I'm 37 in a month. I think lack of energy is maybe the most frustrating MS symptom for me. My Mother in Law has 10 times my energy and she's in her 70's. Are you a stay-at-home Mum?
~~~~~~~~~~~~~~~
Concussus Resurgo
~~~~~~~~~~~~~~~
RR-MS dx 1998 and Coeliac dx 2003
~~~~~~~~~~~~~~~
Copaxone, Cymbalta. EPO, Fish Oils, Vitamin D3 2000 IU daily, Cal/Mag/Zinc, Multivitamin/mineral, Co-Enzyme Q10, Probiotics, Milk Thistle.
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Postby pager » Sat Jun 27, 2009 8:11 pm

Hello! Thanks for your advice and tips everyone! I am so glad to find this group!

Well, I made it through two full weeks of shots. My tough area is on my thighs...not enough fat, unfortunately. The shots there swell up to about 203 inch circles and hurt for a full day. That is definitely the hardest part. It is interesting about the bottom though....I may have to give that some thought. For the time being, I am trying hard to stay the course.

BTW, does your bottom hurt to sit down on lay on it? Does anyone know why Copaxone doesn't support that as an injection site?

I wanted to share that I did my first acupuncture last week. It was amazing....after the session my legs had no pain, a felt so relaxed and my depression was significantly lifted!! It was amazing and it lasted a couple of days. I did have a wicked headache on the left side, but that was it. I go again next week. Has anyone else had any relief with acupuncture??

The other thing that is weird in this past month of diagnosis is that I have discovered tingling in my right leg...that is new or maybe now I just notice it. Has anyone else have something like that happen?

Wonderfulworld, yes I am a Mom in my late 40's with a 6 and 9 year old. I am blessed with a supportive husband, but I am finding it hard to have energy for the kids, work part time and keep up the household. My husband does a lot so that is a blessing but I am feeling a bit inadequate. How about you? You mentioned a son maybe a couple of years ago? How many children do you have? Do you work outside the home?

Regarding the med you mentioned. What is interesting is that I was on Imipramine (a tricyclic antidepressant) for quite a number of years for depression. I went off in the fall due to heart issues (very rapid heart rate) and then everything started falling apart over these past seven months or so. So, in my opinion, I think that the Imipramine masked the MS symptoms a bit. Who knows huh?

Overall, I do think I am getting better each day and I am trying to remain hopeful. Thank you all for your comments and thoughts...I find it very helpful and encouraging. :D
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Postby patientx » Sun Jun 28, 2009 8:18 am

Pager:

When I started the Cop shots, I asked the nurse why they don't recommend the rear-end. She said that there's a bunch of nerves close to the surface, so things could get pretty uncomfortable, especially sitting down.

The only other reason I could think (and this is pure speculation on my part), is that almost all areas recommended can be done manually, as well as with the auto-injector. I would think that it might be difficult to manually inject the buttocks.
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Postby Needled » Sun Jun 28, 2009 8:48 am

X is right. I had asked my neuro about that when I first started. The two biggest hunks of fat in the body and you can't use them? Didn't seem fair. Anyway, he said it was a sensitive area and also the sciatic nerve starts at the base of your spine and then breaks off into two seperate nerves, each running down the the middle of your butt check and down the back of the thigh and leg. It's not something you want to hit. Once I heard that, I just avoided it. I have expanded the fatty hip area but make sure I stay away from the area he described. But I have wondered over the years, so I just did a quick search on sciatic, and Wikipedia says:
Did you know the sciatic nerve is the largest nerve in the body? This is the nerve that nurses and doctors are trained to avoid when giving an intramuscular injection to a patient in the buttocks.

Copaxone isn't intramuscular, but the butt still makes me a nervous. With my luck, I'd hit the sciatic and/or some other nerves. Since I'm a weenie when it comes to pain, I'll just stay away from it.
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Postby RedSonja » Thu Jul 02, 2009 12:42 am

I only inject in stomach or bottom and I haven't hit that nerve yet. I shall watch out for it.

After a while you will find the spots your body tolerates being injected. I can't do arms or front-of-thighs. Obviously you can't do where your clothes are going to rub, so waistline is tricky.

When your body has got used to Cop it doesn't react as violently, it doesn't swell up as much, so you can try other places that didn't work before.
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