ShelleyTab
02-28-2008, 06:04 PM
Well, I know I kept everyone updated about changing off the betaseron onto the steroids and then a few weeks ago on to copaxone. I had posted about severe burning and got some great responces.
I haven't mastered the burning but i'm learning to ignore it better. However, I keep developing these huge welts the day or two after the shot. They are enormous and hot to touch, red and hard as a rock. So I try to trooper through it because I was told by the nurse some site reactions will lessen over time. Well, they are only getting worse and the original ones are taking forever to go away. So I called Shared Solutions. I got a nurse who gave me a huge list of things to do differently or try to see if it helps. That was last week. I tried everything on her list and my husband and I double checked everything - and still no improvement. Some of the older spots are starting to get better - but the new ones are bigger than ever! I am running out of shot spots quickly and can't keep up. So I called my MS specialist. Of course, he only works one day a week in this office so I have to wait a few weeks for an appointment. They are supposed to call me to set something up. In the mean time I chatted with the nurse who showed me how to use the shots and she said to stop immediately and not to take anymore.
So now i'm stuck. No copaxone because of site reactions. Betaseron I broke through on. I'm avoiding rebif and avonex because i'm hoping to get pregnant sometime in the relative future. I'm still on the steroids but I get awful body aches so I was hoping to come off them. Ugh! It's so frustrating!
just venting...
Shell
I haven't mastered the burning but i'm learning to ignore it better. However, I keep developing these huge welts the day or two after the shot. They are enormous and hot to touch, red and hard as a rock. So I try to trooper through it because I was told by the nurse some site reactions will lessen over time. Well, they are only getting worse and the original ones are taking forever to go away. So I called Shared Solutions. I got a nurse who gave me a huge list of things to do differently or try to see if it helps. That was last week. I tried everything on her list and my husband and I double checked everything - and still no improvement. Some of the older spots are starting to get better - but the new ones are bigger than ever! I am running out of shot spots quickly and can't keep up. So I called my MS specialist. Of course, he only works one day a week in this office so I have to wait a few weeks for an appointment. They are supposed to call me to set something up. In the mean time I chatted with the nurse who showed me how to use the shots and she said to stop immediately and not to take anymore.
So now i'm stuck. No copaxone because of site reactions. Betaseron I broke through on. I'm avoiding rebif and avonex because i'm hoping to get pregnant sometime in the relative future. I'm still on the steroids but I get awful body aches so I was hoping to come off them. Ugh! It's so frustrating!
just venting...
Shell
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MSJayhawk
02-28-2008, 07:35 PM
Ugh! It's so frustrating!
just venting...
Shell
Your summary deserves a big ditto. I hope you can get through your tribulations. Try to stay positive!!
just venting...
Shell
Your summary deserves a big ditto. I hope you can get through your tribulations. Try to stay positive!!
MSNik
02-28-2008, 09:24 PM
Shelly, I dont understand. Betaseron you CANNOT get pregnant on. Copaxone you CANNOT get pregnant on..and the other two, Avonex and Rebif (the same drug ) you also CANNOT get pregnant on! Your statement confused me.
Theres specifically evidence that you need to be off ALL DMDs for at least 6 months before concieving safely. For the record I know of 3 people who were all on Rebif for more than 2 years, who went off of it to get pregnant- all 3 had healthy babies. All 3 also had major relapses after delivery and started right back on their Rebif immediatly- less than a year later, all 3 are doing great as are their babies.....
I just wanted to point out to you that it is very possible to take Avonex or Rebif until you decide its time to try to get pregnant...and, if you are having this much problems wit Copaxone, you should probably stop it. There are so many people on this board who will sympathize with you, they have been there. I hear more and more people switching from Copaxone to Rebif or Avonex these days then the other way around. Seems those site injections, when you get them, are pretty painful. I feel for you. With Rebif, Ive never had a single one....and to date, 18 months of no changes in my MRIs....
Whatever you do, good luck to you...but really, check thoroughly on the DMDs and pregnancy, because your statement about Betaseron especially, concerns me. IF you "broke thru" on Beta, Rebif is probably the next choice in the interferon group. Its stronger, the stronger of the three- and very easy to do.
Wishing you the best.
Nikki
Theres specifically evidence that you need to be off ALL DMDs for at least 6 months before concieving safely. For the record I know of 3 people who were all on Rebif for more than 2 years, who went off of it to get pregnant- all 3 had healthy babies. All 3 also had major relapses after delivery and started right back on their Rebif immediatly- less than a year later, all 3 are doing great as are their babies.....
I just wanted to point out to you that it is very possible to take Avonex or Rebif until you decide its time to try to get pregnant...and, if you are having this much problems wit Copaxone, you should probably stop it. There are so many people on this board who will sympathize with you, they have been there. I hear more and more people switching from Copaxone to Rebif or Avonex these days then the other way around. Seems those site injections, when you get them, are pretty painful. I feel for you. With Rebif, Ive never had a single one....and to date, 18 months of no changes in my MRIs....
Whatever you do, good luck to you...but really, check thoroughly on the DMDs and pregnancy, because your statement about Betaseron especially, concerns me. IF you "broke thru" on Beta, Rebif is probably the next choice in the interferon group. Its stronger, the stronger of the three- and very easy to do.
Wishing you the best.
Nikki
ShelleyTab
03-01-2008, 09:27 AM
MSNik, I was probably unclear due to my agrivation. I broke through on the Betaseron and had to come off it. It had nothing to do with pregnancy. However, since I was already off it, I thought "What a great time to try.." so we started that process. Unfortunately, it's not working out as well as we (me and my docs) had hoped and It's going to probably be a very LONG process. You are absolutely correct - Betaseron is a class C for pregnancy so you need to be off it for a minumum of 6 months before getting prenant.
Rebif and Avonex are also class C, so I cannot go that route unless i'm on birth control (which i'm obvious not since we are hoping). So betaseron is out permenantly and rebif and avonex are out until after pregnancy.
Copaxone is one step better in pregnancy so you can take it up until the day you find out you are pregnant. Some research shows it is safe even through pregnancy but they don't have enough proof so obviously I wouldn't be doing that. I saw my neuro, my specialist, and an internal med doc - all of which agree Copaxone is the only DMD I can take right now until the point I get pregnant. Once prenant I would come off all traditional DMDs and they "would like to see me continue the steroids" while pregnant.
Note: All three also agree that iv steroids are safe before and during pregnancy as long as you are taking it no more than 2x per month. Since the copaxone isn't working out I will probably stay on the steroids indefinately now. I don't know if I feel comfortable doing it during pregnancy even though all docs agree it's safe, so i'll cross that bridge when I come to it. Of course, the reason we went to Copaxone was because I didn't like the steroids side effects...........
-Shell
Rebif and Avonex are also class C, so I cannot go that route unless i'm on birth control (which i'm obvious not since we are hoping). So betaseron is out permenantly and rebif and avonex are out until after pregnancy.
Copaxone is one step better in pregnancy so you can take it up until the day you find out you are pregnant. Some research shows it is safe even through pregnancy but they don't have enough proof so obviously I wouldn't be doing that. I saw my neuro, my specialist, and an internal med doc - all of which agree Copaxone is the only DMD I can take right now until the point I get pregnant. Once prenant I would come off all traditional DMDs and they "would like to see me continue the steroids" while pregnant.
Note: All three also agree that iv steroids are safe before and during pregnancy as long as you are taking it no more than 2x per month. Since the copaxone isn't working out I will probably stay on the steroids indefinately now. I don't know if I feel comfortable doing it during pregnancy even though all docs agree it's safe, so i'll cross that bridge when I come to it. Of course, the reason we went to Copaxone was because I didn't like the steroids side effects...........
-Shell
MSNik
03-01-2008, 11:28 AM
HI Shel-
gotcha. Maybe i was unclear, but I understand your situation now. Whatever you decide to do, it sounds like you have excellent medical advice, and you are on top of what you are thinking about doing. Im sorry that pregnancy is something which is complicating meds at this time. Never having been pregnant (i have one adoped daughter and 2 more stephchildren which are HER biological brother and sister), I havent ever considered the repercussions of pregnancy and MS- but I do have alot of friends, as I mentioned before, which have had successful pregnancies post Rebif.
Have you considered starting any kind of pregnancy drugs immediately, with the goal of getting pregnant sooner, rather than later? It might be something to think about....if you feel its going to be awhile before you can concieve- this might speed things up?.
Just a thought.
Stay well, okay? Keep us posted and I wish the very best for you.
Hugs
Nikki
gotcha. Maybe i was unclear, but I understand your situation now. Whatever you decide to do, it sounds like you have excellent medical advice, and you are on top of what you are thinking about doing. Im sorry that pregnancy is something which is complicating meds at this time. Never having been pregnant (i have one adoped daughter and 2 more stephchildren which are HER biological brother and sister), I havent ever considered the repercussions of pregnancy and MS- but I do have alot of friends, as I mentioned before, which have had successful pregnancies post Rebif.
Have you considered starting any kind of pregnancy drugs immediately, with the goal of getting pregnant sooner, rather than later? It might be something to think about....if you feel its going to be awhile before you can concieve- this might speed things up?.
Just a thought.
Stay well, okay? Keep us posted and I wish the very best for you.
Hugs
Nikki
ShelleyTab
03-02-2008, 09:13 AM
MSNik,
We may have to go that route but the difficulty is that I don't get any periods becasue of the steroids so I have absolutely no way to time or chart anything. For now I don't mind because I'm changing careers (got a new job - I start in 6 weeks!) and we may be moving about an hour from where we are and buying a new house, selling our old house. Plus working full time and school full time. So there are so many other things going on right now I am not in a rush, but I know for med reasons I can't wait much longer. If nothing in six months we will go back to the doc and start asking those kinds of questions.
Thanks for the advice,
Shell
We may have to go that route but the difficulty is that I don't get any periods becasue of the steroids so I have absolutely no way to time or chart anything. For now I don't mind because I'm changing careers (got a new job - I start in 6 weeks!) and we may be moving about an hour from where we are and buying a new house, selling our old house. Plus working full time and school full time. So there are so many other things going on right now I am not in a rush, but I know for med reasons I can't wait much longer. If nothing in six months we will go back to the doc and start asking those kinds of questions.
Thanks for the advice,
Shell
Bearygood
03-02-2008, 12:52 PM
Shelley, sorry to hear about what you're going through. I just wanted to throw out an "out of the box" idea for you. I am a proponent of acupuncture and although I haven't used it in this regard, I have two friends who swear that it helped them get pregnant. Don't know if you're so inclined and of course there are no guarantees but I just wanted to let you know about their experience.
ShelleyTab
03-02-2008, 05:12 PM
Beary,
Thanks for the advice. Funny, a friend of mine from work just told me all about acupuncture and how helpful it was for her in many different way and that I should try it. It sounds a little frightening (great! More needles!) but I told her to ask if it was ok for patients with MS. She is looking into it for me and if it checks out I may try it. We'll see. I'll keep you informed and thanks again for the advice. I would not have linked those two together.
-Shell
Thanks for the advice. Funny, a friend of mine from work just told me all about acupuncture and how helpful it was for her in many different way and that I should try it. It sounds a little frightening (great! More needles!) but I told her to ask if it was ok for patients with MS. She is looking into it for me and if it checks out I may try it. We'll see. I'll keep you informed and thanks again for the advice. I would not have linked those two together.
-Shell
Bearygood
03-02-2008, 10:42 PM
Oh, Shelley -- it's can be HELPFUL for people with MS! I haven't kept up with it for my MS but believe it or not, it was one of the things I did to help avoid gallbladder surgery years ago. When I was first dxed I did find it helpful with several things MS related, including my tingling. It's very much about finding a good doctor -- sounds like your friend might be helpful in doing that if she's fond of hers and you decide to move forward. Good luck and if you DO try it, I hope you'll be as successful as the two women I know. :)
Bearygood
03-02-2008, 10:44 PM
Meant to add, it's nothing like the needles you've been using! :)