I'm not sure about the answer to your question, but I have a couple for you?
How long ago did you finish the IVSM?
Did your Dr. prescribe the Acthar Gel already?
The reason I ask is this: The Acthar Gel is very expensive. Only a few people on the forum have taken it... Also, as you probably are already know, IVSM (or the Acthar) only speed up the duration of the relapse. There can still be damage left behind after either treatment.
I went to a dinner hosted by the Acthar people. It sounded more convenient. Five daily injections, you can take at home- as opposed to three to five days receiving steroid infusions. The risks/benefits of both therapies were fairly similar.
After I went to this dinner, and learned a bit more-- I would probably accept either therapy (if money wasn't a problem)- but not both for the same relapse. The risks are too high, and there didn't seem to be any additional benefit to taking both.
You must be still suffering a lot from your current relapse. I hope you are in contact with your neurologist.
Thanks for responding. I finished the IVSM about 4 weeks ago and the taper about 2 weeks ago. When I decided that my symptoms we more than I could handle my doctor was trying to see what my insurance would cover. As it turns out my insurance covers in home IVSM 100%. Actually, I didn’t know anything about Achtar until after I finished the IVSM and I got a packet from them in the mail saying that my doctor had prescribed it to me and to set a up a training session. I am assuming that my insurance covers a portion but I am not sure how much.
I am pretty new to MS, I was just diagnosed 8/13/11. My symptoms started to get worse at the end of this past August, but I remembered that last August I had similar issues so I thought that this was just my time of the year to feel poorly. But then it seemed like everyday it just got worse and eventually I could barely walk and couldn’t drive because my feet were so numb. I felt great after the steroids but over the last week I have started to degrade and now driving is really difficult; luckily I can work from home. I left a message for my doctor today about the Acthar and he didn’t think it was a good idea right now and prescribed prednisone, so I guess I will wait and see how that goes.
What meds are you on if you don’t mind me asking? I am rebif, but my recent MRI came back and I have a lot of new lesions on my spine so now I am being tested to see if I can take Tysabri. The plan being that I would take that for 6 months and then be put on BG-12 if it is released.
Sorry, I realize now that this is a really long post. Its nice to talk to someone with MS, I don’t know anyone else who has it and unless you have it you don’t really get it.
The first year after diagnosis is interesting... I was finally diagnosed in July 2011, but my medical records show I was having symptoms since 1996. Still, with really bad relapses- I think I start the grieving process all over again.
I know what you mean, about people not getting it. Try to remember that they mean well... (I keep trying to remember :o)) I hope the predinsone helps, but I'm not sure anti-infammatory therapies work after the first two weeks of a relapse. I once had a relapse that lasted a few months. -Well before I met my current neurologist. When I finally got in to see him, he did give me steroids, just in case- but they didn't help. I found out later about the two week window of time. If you think this could be a new relapse, the prednisone might help after all. Let's hope so...
So, the best advice I can offer about relapses, and steroids- is pay attention, if you think you are having a new relapse- wait a couple of days to be sure (unless you are blind- then go to the ER!). If you think the relapse is bad enough to justify IVSM, call your neurologist soon. Alternatively, if you think it's a relatively minor one, it might be better for your health to forgo the steroids. Either way, it won't affect the overall outcome of the relapse. Recovery will be either partial or complete.
As for your other question: I've been through all the CRAB drugs except Betaseron. (I went through them pretty fast- over the course of a year.) I had an allergic reaction to a preservative in Rebif. I had other bad reactions to Copaxone. Avonex (the kind you have to mix) was okay, but I was taken off of it because I was relapsing almost every other month. It just wasn't working. My doctor thinks we may have started me on a therapy too late. I seem to be transitioning over to Secondary Progressive MS, so there really isn't any therapy left for me.
I hope the Tysabri is a good match for you. I have heard very good things about it. I know one young woman who was wheelchair bound for several months. After getting Tysabri infusions, she healed up enough to walk again. Of course, everyone's MS course is different. (By the way, I am jealous that you can have your IVSM at home!!)
I don't drive anymore either- for the same reason. You need to be able to feel your feet, to be sure you're applying correct pressure! I sure miss it.
I'm happy to help if I can. If you have questions, etc- feel free to PM me. I hope you have good support at home. I would be lost, if my husband weren't supportive.
Be sure to allow yourself to grieve. I think that may be harder for guys, but it's a very important step to acceptance.
Thanks for the advice about relapses, I wish I hadn't waited so long to take action. The prednisone started working in what seemed like a few hours I was so excited, but it appears they are wearing off. I am really sorry to hear that your MS is progressing, Have you done any research into natural treatments, specifically diet modification? I found this woman online, Dr. Terry Wahls and she had Secondary Progressive MS and was confined to a WC within I think a year she was riding her bike to work. The diet is basically like the "Best Bet" if you havent heard of it you should look it up. I hear on the driving issue, it is so lame. I know there are modifications that can be made to your car so the gas and brake can be controlled by hand, but I am sure it is really expensive.
I really hope the Tysabri works. Whats frustrating (Well everything about this is frustrating) is that there is nothing I can do until after the holidays. I have to wait to see if I can take the drug, which will be several days at least and then if I can take it I will have to wait a week to get in the program. I just keep feeling worse and there is nothing I can do to stop it.
About the IVSM, I am supprised you cant get them from home. I was told the insurance companies prefer it because its cheaper. I was talking the woman who worked for the service and she said the option to have infusions from home has been around for 20 years!
Thank you for your support. I have a pretty good support system at home, my older sister is the best and my girlfriend is getting better at being supportive. As you know, its really hard for significant others and family to deal with the changes. I don't know if I have let myself grieve or not, I just kinda deal with things and try to find ways to adapt. I think one of the things thats hard to get used to as a guy is that some of the normal roles in a relationship change, for instance needing help carrying stuff because your balance is off or the idea that your not as capable of defending yourself or your family (Not that I have ever been in that position).
Regarding your comment about the first year, it feels pretty real to me, I cant remember what it feels like to be normal.
Thanks again for your support and you hang in there as well!
I know what you mean- not remembering what it feels like to be normal. I was watching someone dancing the other day. It almost looked like magic to me. It all looked so effortless... I used to dance, but that was over twenty years ago, lol!
I wish I had something encouraging to say about the role changes. Hopefully you will never need to defend your family. As for carrying stuff, that will probably come back to you. You need to heal from this relapse. In the early part of this disease, I sometimes went for years between relapses. Even over the past couple of years, in between relapses, I felt good enough to forget how bad it can get. Right now, you feel awful, but it will improve.
It's funny that you brought up Terry Wahls. I just bought her book. Are you trying this too?
Sorry for my delayed response, I hope all is well and that you had a nice holiday. I am doing better, I got a second round of oral steroids and that helped a bit. I am not on the Terry Wahls diet but I have stopped eating gluten, dairy, and soy. I also try to eat a lot of vegetables and I started taking a powdered vegetable supplement.How is the diet going for you? Have you noticed any changes?
Hi Owen. I haven't noticed any significant changes lately. I think it takes time. There is another member here that manages his MS with diet. He follows Dr. Jelinek's plan- and he really believes in it. You can find his plan on the web... It sounds like you're already doing a lot to help yourself though. That's great!
Dr. Wahls thinks we should take in things that support a healthy brain too. I don't have the actual book at the moment- or I'd go check (My mother borrowed it...) I remember one thing she said to add into your diet though: avocado. I love avocado, so that's no hardship for me.
As for me, I have been having increased neurologic dysfunction for a while- and I thought it was another relapse. It turns out that I had a sinus infection that is now becoming an upper respiratory infection. Round one of antibiotics wasn't enough, so it's time to bring on round two!
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