Struggling..anyone try the oral meds? How long?

[QTPieRN433]

Okay guys...I still break down and cry about once a week giving myself Rebif injections. I am the biggest loser when it comes to this but am still so overwhelmed and have noone to talk to about this. My dx as some of u may have read was like a whirlwind..which I suppose considering how very long many of you struggled w/ a dx that it is a good thing..but i still feel like I've been hit by a semi or something. symptoms started in november last year and by february I was diagnosed..had a relapse and started on rebif..which I know I have to take it and am grateful to have the dmd BUT that doesent make me HATE it any less..I found a big ad in the paper this week for clinical trials on an oral MS med 4 miles from my house but it seems they dont want any participants that are already on meds..and I cant help but feel an extreme sense of dissapointment over this..:( anyone particpating or planning on participating in any of this?? Any insight on how soon some or any of these meds may be available?? All I know is one drug was in phase3 clinical trials in Europe...Just kind of venting and whining guys cuz who else will listen anyways?? Thanks in advabce for any insght...

[QTPieRN433]

thanks for all the advice. just need to whine sometimes. I get no sympathy from anyone else usually..and I find that I am doing better except for the thigh injections which burn like a mother..so bad I want to withdraw that needle before the meds are all out but havent done it so far..;) so I stay away from the thighs as much as I can..When my atomach or butt get too sore then I grin and bear it for 2 shots and do the thighs..ack!

[Adnvwsti]

It seems that we never have time to prepare ourselves emotionally and mentally for the surprise of being told that we'll need to be on some type of dmd treatment for our MS.  My doctors had suspected for almost a year that I had MS before it was diagnosed, but they had not prepared me for the fact that I'd need to be injecting myself with a dmd if the MS diagnosis came through, and I feel this is a bit of a failure on the part of the doctor to consider fully preparing a patient.  I don't know.  But I think it would have helped me.  It wasn't until I was told of the positive dx that the neuro told me that my homework assignment for the coming week was to read up on the dmd treatments available and advise him of my choice by the next week.  So I think I understand a little of what you're feeling.  

Mine is "suspected" PPMS and I am on Rebif, like you.  I haven't read anywhere or been told that the type of dmd prescribed would be tied to the type of MS dxd--except perhaps where the IV injected therapies are concerned.  For me, Rebif was a personal choice.  My current neuro prefers Copaxone for his patients since it is made of more natural ingredients, from what I understand.  However, I've read that Copaxone can sometimes mimic heart attack pain and that there's nothing one can do to prevent this rare side effect really.  Since I've already had a heart attack long ago and am still at risk for another, I decided I didn't want my MS treatment to mimic something that might send me to the hospital unnecessarily, so Copaxone was out as far as I was concerned.  The Avonex is a long needle since that dmd must be taken in the muscle, but some people prefer it since it is only once a week, unlike the others.  I'm betting that every MS patient tolerates one dmd better than another, too.  It may be a matter of searching for the right one for you.  Rebif may not be it.

Betaseron and Rebif are administered through 1/2" long needles that are also very thin and they are supposed to be administered subcutaneously, under the skin, not into the muscle.  I think I'm extremely lucky because my husband administers mine for me.  The MS Lifelines nurse told he and I that if the injection site was still painful a day or two after the injection, then we were hitting the muscle.  She also said that there's no need for worry if it is accidentally injected into the muscle--the medicine will still do what it is intended to do--but the injection will simply hurt more if taken in the muscle.  Only Avonex is intended to be injected into the muscle.

Don't feel bad about crying!!  As the Rebif dosage increased, so did the pain for me and it is not the needle.  It's the medication that is hurting you most, probably.  The MS Lifelines nurse told us that at the .44 mcg dose--the highest dose for Rebif--"it bites!", and she was sure right about that. I've been told I tolerate pain extremely well, but I find I can hardly bear the pain of the Rebif injection, and if I cry, my poor husband wants to cry also.  He follows instructions and injects slowly to the count of 10-1000 and as the Rebif is injected, the pain soars.  The autoinjector leaves a round, red spot on my skin for weeks after an injection, which may be a good thing--at least we know where the latest injection sites are so we don't hit them again for at least 2 weeks.  

Some of the tips the nurse gave us, besides ice on the site and rubbing to distribute the Rebif and help end the burn, etc., are:  1. Stomach is often best tolerated site; 2. If you have any fat to pinch, pinch it tight and inject into that spot, whether arms, fanny, upper thighs or tummy.  That way, you don't hit the muscle (hopefully); 3. Check how deep the needle is set to go on the autoinjector.  For me, the nurse recommended 1 on arms and 2 on fanny, etc., but we've learned a "cry-baby 1" setting works fine everywhere on me.  

None of this is easy--the disease itself or the treatments for the disease, I suppose, but none of us who endure the pain of the treatments are anything other than TOUGH!  I really wish you had someone who could administer the injections to you.  I don't think I could do it myself, so you're SUPER TOUGH in my book.  Keep us posted on how you're doing!  jo

[sllowe]

Hi honey,

I'm glad your feeling a bit better. I've not been veryimpressed with the side affects I've read about associated w/the orals, but maybe intime that will change.

Can someone else give you shots? Or, maybe you can go to the once a week Avonex?

If you hate it, you're more likely to not stick to your schedule. You've brought up a super important topic! Keep pushing, but in the meantime, hollar, whine, whathave you whenever you feel like this so we can all help you best we can!

Shell

[QTPieRN433]

thanks so much guys! Someone always makes me feel better. The more I thought about it the more I agree. what if u did end up w/ the placebo? That would be an even bigger let-down. I am just pushing through this and know that this feeling wont last forever.

[NiCeeGlover]

I agree with you Erin,
I feel the need to wait and see how ALL these new things pan out!
I don't want to be a test rat either and take a chance on making myself worse!
NiCee

[Erin0313]

I'm so sorry that you are having such a difficult time :(

You didn't mention side effects so I'm guessing that it is your complete hate and fear of needles that has you so upset. I can relate - my new ones for the Avonex are skinny but really long because they have to go in the muscle and OUCH! I have started crying every time I get an injection.

With that in mind I still don't plan to volunteer to be one of the guinea pigs when the new oral drugs first come out. My RRMS is considered stable right now and I don't want to take a chance on going on the new ones or worse the placebo if it's a trial and have my MS start getting all revved up.

I will wait a decent period of time for info and success rates to come out before I consider switching.

Try running yourself a nice warm bath with scented candles and a beverage of choice (for me it's pepsi) just before you do your shot. Climbing in right after will make the pain better and help you emotionally. If you need a good cry the tub is a nice wet quite place to have one.

Good luck
Hugs,
Erin :)

[NiCeeGlover]

Good evening!


I'm sorry you feel so bad!

You definitely have a good reason to be upset!

I will be using Rebif once the Doctors decide which MS I have for sure!

I'm beginning to fear they know mine is PPM and haven't told me for sure yet.

But  they haven't started me on a DMD either!

PPMS was mentioned to me by my Family Doctor.d

I know they won't put me on Rebif with PPMS

And it takes a year to DX  PPMS from what I've read.

You are not a loser in any way to feel like this!

I'm a Big Chicken when it comes to needles!!

I know I will be a cry baby if I do need Rebif!

But it's ok.... I still hate needles and in the muscle is OUCHY!!

Hugs and I hope your body adjusts real quick to the shot!

NiCee

I'm still over whelmed at times over having these health issues!