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**Cherie** · 09-20-2012, 05:31 PM

Are you not injecting stomach? Bestter than arms and legs and more available injection sites.

Icing now is thought to be a contributing factor to necrosis. Heating the area before and after injection helps to increase circulation and get the medication moving away from the injected area minimizing the possibility of necrosis. Have you talked to the Beta nurse about these problems? That is what they are there for...quite specifically...to help prevent these problems.

**stillstANNding** · 09-21-2012, 07:33 AM

Welcome back, lawnerd.

What about pills? Research BG-12. It was in the news this week. It is more effective than ABCR's in both disease progression and MRI lesions.

My MS specialists yesterday said that there is a good safety profile as it has been used in Europe for Psoriasis (another auto-immune disorder). There is bloating and diarrhea in the first month.

Worth a look.

Best to you,
ANN

**agate** · 09-21-2012, 08:56 AM

Hi lawnerd,
I remember the name but unfortunately not the details. Welcome back!

In addition to the BG-12 stillstANNding mentioned, there will be Aubagio soon:

Only registered and activated users can see links., Click Here To Register...

It's too bad you've had this problem. Many people do find that for one reason or another they have to stop taking one or all of the ABCR drugs. Some can go on to a different ABCR--others try other drugs, or nothing at all.

**stillstANNding** · 09-24-2012, 06:23 AM

" and he never returned and he never returned and his fate is still unknown....."
Fm Charlie on the MTA

ANN

**lawnerd** · 09-26-2012, 08:42 AM

Thanks for all of the input.

Cherie, I have always had an aversion to injecting in stomach. Now, among the little that is published about injection site necrosis, there is the warning that a necrotic site reaction on stomach area can invade abdominal cavity. My BMI is 17.1. Several years ago, I had a problem on an arm which got down into muscle tissue. Now docs say injecting in stomach would be high risk for similar complication.

I have met with and talked to Betaseron nurses several times about this. Last time I was told I problem was that I was injecting too deep because I was using standard autoinjector. She gave me a new "end" piece for the autoinj. which keeps needle from going in as deep. [No way for general public to know this is an option.] Based upon current situation, that has not helped.

Now, docs are wondering if I am not injecting deeply enough. [I keep referring to "docs" in plural because several in the practice got in on my last office visit to the fam pract.] Docs also said they are convinced my problems have nothing to do with my injection technique, that I haven't been doing anything "wrong."

Thanks also for the comment about heat. Previously, I had read about, and a Beta nurse had suggested, the icing. It seemed counterintuitive for reasons now being put forth in support of applying heat, so I never tried it. I confess I have intended to try the heat this past week and keep forgetting to do it. Thanks for bringing it up - Will make myself a reminder.

Likewise, I have meant to call Beta nurse and never got around to it. Will do so when I finish this post. I have thought that my up-coming appt with neuro nurse practictioner [vs the neurologist] might be a good thing because NP may know more about this subject than the doc.

stillstANNding and agate, Thanks for the mention of the BG-12 and Aubagio. Both sound promising. [Nevermind that I already take 18 pills a day.] Whichever one of the new drugs that has been in use in Europe is the one I have my eye on. I don't usually like to be among the first to try a new drug. However, the experience with similar formulation in Europe gives me some confort.

On another note, my thus far week long holiday from injecting after 10 years of never missing an injection has been sort of liberating. I used to feel somewhat empowered by the injections -- I was doing something to fight the MS. I think this liberated feeling is mainly because of the continuing problems I have been having with the injections over the past several months. It hasn't been merely a matter of giving an injection, but trying to find a place that looked and felt OK to inject.

Am off to call the Beta nurse. Thanks again for the ideas and input.
Have a good Wednesday, lawnerd

**Virginia** · 09-26-2012, 04:30 PM

Hi Lawnerd,

Glad you have been doing well MS wise. You certainly may want to inquire about the new oral treatments that are out. However, I would think that another option (should you decide against the oral route) would be to wait until the necrosis has healed and start Rebif. I don't believe that it carries as high a rate of necrosis as Betaseron or Copaxone. Of course you are smart enough to check all this out. I am going by things that I have read a long time ago. I have been on Rebif for 10 1/2 years. Also, as you know there is Avonex which I think would carry less of a risk of necrosis, but is not as strong as Rebif.

It will be interesting to hear what the Betaseron nurse has to say, but ultimately as you know the decision is yours. Would you not be somewhat leary of B now that this has happened. Peace of mind is also important.

Good luck

**lawnerd** · 09-28-2012, 04:01 PM

Hi All!
Some Good News [I think].

Picked up CD with new MRI images and report yesterday. Report said a couple of places have improved!?! Otherwise, didn't seem to indicate any new or worse places - one part I didn't understand so jury still out on that issue. But, improved is improved. Although I hadn't had any exacerbations, I was concerned because in past neuro has said he worries because I have had a good bit of of subclinical activity, only detected by MRI. This report makes me feel better about stopping the B.

Talked to Beta nurse. Not the one who came and saw me last yr because she's gone. This nurse does have the notes from last year's visit. I told nurse what has been happening. She asked me a trick question to check my injection technique. Then, she laughed and told me that prior nurse had noted that there were no problems with my injection techniques. [Too bad since I could probably fix a problem like that.]

Beta nurse says stopping the B is the correct thing for me to do. She said I shouldn't worry about not taking the B or anything else for awhile. Beta nurse wants to me to let her know what neuro's PA says when I see her next week.

Thanks for the "thanks", agate, SalpalSally and stillstANNding. [I've been gone so long, not sure what it means/ when you are suppose to do the "thanks" thing. I am assuming it is an "attaboy" without having to do an actual post?]

Virginia, thanks for your post. Per my recent research, you are right on. Avonex is least likely to cause site reactions. Then Rebif, then Copaxone. Theory seems to be that depth of IM Avonex injections helps prevent site reactions. There is also some thought that the B itself is more likely to cause site reactions, compounded by being subQ injections. I seem to recall that the C has it's own set of problems, but not as bad with the site reactions as the B.

At this point, I don't know what I will end up doing. Despite the site reactions, the B seems to have been doing a very good job for me. Nothing ever stays the same. . . I am just very grateful to have this as "my problem" instead of exacerbations or my MS otherwise getting worse.

Have a good weekend,
lawnerd

**stillstANNding** · 09-28-2012, 05:13 PM

Hi Lawnerd,

Congratulations on the MRI results!

Perhaps Avonex would work well for you as you have done well on interferons.

Ahh, the "Thank You" option is fairly new. I can only speak for myself. My "Thank You"s mean a variety of things-- thanks for posting, thanks for participating, thanks for showing up, I agree w you and/or I respect your opinion. "Attaboy" is in there, too.

Changing therapy is a gamble if you are doing well but it sounds like it is necessary.

Best to you,
ANN

**agate** · 09-28-2012, 08:25 PM

lawnerd, congratulations on showing improvement! That sounds really good.

About the "Thanks" option, as ANN said, it's a recent addition, and not everyone likes it, but I use it as a way of letting people know someone has read their post even though I may not have replied.

**Tweeker** · 10-01-2012, 04:04 PM

Hi

About 6 � 8 months ago I switched from Copaxone to Gilenya, (once a day pill), and have noticed zero problems. It�s really great not doing the daily injection thingy.

Tweeker

Ya Can�t Argue With An Idiot

**agate** · 10-01-2012, 05:23 PM

That's really good news. People tend to post about the problems they're having with one treatment or another, and it's all too easy to lose sight of the many people who are having no problems with a treatment.

**Virginia** · 10-01-2012, 06:38 PM

Good news Tweeker. Hope this keeps up. Please try to keep us informed. Since this is a relatively new treatment we would like to know how it continues to go for you.

**lawnerd** · 10-01-2012, 06:39 PM

I don't reckon it is proper to do a "thanks" on one's own thread. So here is a heartfelt thanks to each of you who has responded and for all of your support and feed back - both on the substantive issue and helping me understand the "thanks" option.

Thus far. I think I like the "thanks" thing. Seems to be a way to let someone know you read, learned, cared, etc without having to create an entire reply. Those types of replies are great replies, but as I recall they can sometimes make it hard to follow the substance of a thread. Also, I think it is a real challenge for some folks to type an actual reply; this makes it easier for them to express themselves.

Have a great week!

lawnerd

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serious inject site reacts - have to quit - now what

serious inject site reacts - have to quit - now what

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