I am new to the board, but canít believe that in the 3 years since Iíve had this disease that I have never stumbled across this board. It is a good board to find, & actually the first board Iíve ever posted on!!
I have a question about meds, well more lack of meds. As of this month I am officially off meds and it is making me a bit nervous!
When first Dx I was put on Avonex but pulled off by my Neuro 6 weeks later due to high fevers that lasted way too long regardless of how many fever reducers I was taking. So that rules out rebif & betaseron. Next I was on Copaxone, & I was so happy to have a med that caused no fever! Mind you the shots were not fun, but hey I got use to them & Iím more than willing to try these meds; I have 30 + lesions. Unfortunately five months into copaxone I had a severe allergic reaction. So off the meds I went and my neuro asked me to try desensitization, in hopes that it would work. He told me I have almost no drug options left, so I said no problem & scheduled the desensitization.
While waiting for my allergy appt. I started having vision problems. It turned out to be optic neuritis & I had my first round of IV solumedrol w/ the prednisone step down. I had no problems tolerating the solumedrol or prednisone; & boy was my neuro happy about this; he said at least that treatment was still an option
I had to wait a bit to go to the allergist, needed to get the steroids out of my system, but eventually had the desensitization to copaxone. Sadly it didnít work. I do have to say that I had an MRI before my allergy appt. & for the first time since my Dx I had no active lesions.
So Iíve now been off meds for almost 7 months, and it has just hit me that I may be dealing w/ this disease w/ no other options but steroids if I was to get bad. I think itís making me nervous because for the first time since my Dx I had no active lesions - & since I donít know if it was the copaxone or the steroids, or maybe just the course of my disease Ė I donít know how to feel about my limited options.
Is there anyone on here (on or off meds) that could give me some advice? Iím kind of feeling like I did when I first got Dx Ė scared & helpless.
Thank-you all for reading this -
Hi Smallbutmighty. I am not off meds (on Rebif) but wanted to both welcome you to the board and share something with you- to give you something to think about. Im sure you will hear from a few people here who are med free...
I have many more lesions then you on my MRI and for the past 2 years havent had any active lesions either....but I also started out on Copaxone and had a horrible allergic reaction also before I was switched to Rebif. Kind of backwards then you drug wise- but I found the one that works for me.
What I wanted you to know, is that even though you had a bad reaction to the Copaxone. Both of the drug you were on, stay in your system up to 6 months from the time you stop them. Therefore, you had some protection going on...yes, the steroids might have masked any MRI activity that was going on. They advise you NOT to do routine MRIs for at least 3 months post-IVSM because the MRI wont always give you a true reading...
So, thats what I wanted to tell you. Your MRI might, or might NOT have been a true reading. Also, the fact that you have done SO WELL med free might also be a fluke, as right about now, is the time that things might start to show up. You said its been 7 months med free- right?
Have you considered Tysabri? My Neuro is using it more and more successfully on several patients right now. I know some of them personally and they are actually loving the once a month infusion! None of his patients have had any negative side effects, as he is closely monitoring them. Its something to think about.
Is your neuro a MS specialist or a regular Neuro? Seems the ones with higher MS patient population are the ones who are utilizing Tysabri and know more about how to monitor it. You should talk to your doc about it and see if it might be right for you...
On the Interferon front, the high fevers you mentioned- this is a much higher risk with Avonex then with Rebif. Rebif was developed to be given more often, thus keeping a steadier blood level. Because of it, the side effects seems to diminish much faster then with Avonex. Most users of Rebif do not have the intensity or severity of side effects that users of Avonex complain of, even though its the same drug....also something to think about.
Going without any drugs has its risks. Right now, the only people I know who are med free, are either secondary MS or progressive MS- and they have no choice...with relapsing remitting, we have so many choices that if you really research this, youll see you dont have to give up ! Talk to your doctor and do some homework on your own . We have to advocate for ourselves!!
once again, welcome to Healthboards. Im sure youll get all sorts of responses to your post! Stay healthy!!
Welcome we are glad to have you here. I was Dxed in Feb. 2002 the first drug I was on was avonex I was on it for a year and spent that year in bed due to the sides in the beginning the nero told me it would get better as far as sides go but it never did then he put me on Copaxone I just do not have enough body fat for 7 shots a week (being I am about 30lbs. under weight) next I was on tysabri oh what a god sent no sides worked great but now i am on nothing but I have only been off since Nov. I have to wait until my new nero sees me. I do not like drugs of any kind but doesn't matter what I like it matters what is beat for my health. I do like your screen name smallbutmighty that is a great attitude to have. I have been on the steroids too I am prone to roid rage so I avoid them when I can and when I do have to take them I hide in my room for about a week after I stop to avoid any upsetting events. I like MSNIK I have many more lesions than you I don't know the Exact number now it changes every time I have a MRI. The number isn't as important to me as where they are located.I too have very limited options and it is not a good feeling knowing that out of all the meds that is on the market and I can't have them with the exception of 1 and it has a time limit on it. The beat med I have found is my own mind keep your spirits up and keep moving along with you're life. Best of luck
Last edited by unclesam612; 02-20-2010 at 10:08 AM.
MSNIK & unclesam612, thank-you both for responding & welcoming me to the board ĖI appreciate it.
MSNIK: thank you for confirming what I thought about steroids & MRIís Ė I thought that I had read it or been told that it might give a false reading somewhere before. I didnít know that the drugs stayed in my system for 6 months, and that makes me feel a bit better Ė at least I had that much longer of coverage.
My neuro is a MS specialist that I see at a pretty big MS clinic, unsure if we can list Dr.ís names or clinic names on the board, so Iím leaving those out for now. Anyways, I did not see an MS specialist for the first year, just a normal neuro & wow what a hard year that was. This was the reason I went w/out meds at first; I was told I didnít need them & this was due to my mri being read wrong. Long story & thankfully I got myself to the right place eventually.
The clinic I go to does use Tysabri & I talked w/ a lot of people on it while I was getting my solumedrol treatments & they all had wonderful things to say about it. My Dr. says Iím too young for tysabri & this is because of the length of time he is comfortable letting someone be on it. I have planned to discuss trying rebif w/ my Dr. at my next appt. With avonex my fevers would get to 104 and stay there for over 12 hours. So I know thatís what he is trying to avoid Ė but heck I will know right away if I can tolerate the rebif Ė so its got to be worth a try?
Uncle sam612: Thank-you for sharing your story w/ me. I had the same problem w/ copaxone, I did not have enough body fat for 7 days a week. I became creative (w/ the help of a nurse) in giving myself shots; but I know that I was not always giving them subQ Ė I think its why I became so defeated after having an allergic reaction to copaxone Ė it had taken me a lot to give those shots.
The nurse who taught me how to give myself the shots is who gave me the screen name Ė she took hold of my tiny arm & said to me ďyou may be small but be mightyĒ Ė Iíve been so thankfully to all of the nurses and staff at the clinic, they have helped me stay positive - & you are right the best med I have is my mind - & thank-you for the extra boost Ė every once in awhile I think we all need to be reminded that we can do this!
Hi again. You wrote "but heck I will know right away if I can tolerate the rebif Ė so its got to be worth a try?" not exactly true. Rebif is titrated. You start at the lowest dose and then the middle dose and then reach full dose. It wont be until you reach full dose that youll know if you have any side effects at all. The first month, youre pretty much guaranteed not to have any side effects..
And then- well, if its going to happen, it will happen when you reach full dosage, 44 mcgs. And, if it does happen, youll have the sweats, the chills and the normal flu like symtoms. But, the good news is with Rebif, it generally only lasts about 3 months and only happens on shot nights and only lasts 6-8 hours. It wont affect you the rest of the week....so, is it worth it? Only you will know.
Tysabri is gaining in popularity. I went to a talk about Tysabri yesterday- it was interesting. I met 20+ people on the drug, many of which were under the age of 40...all of which are being closely monitored and all of which are so far, having success with it. One really huge success story is of a woman who wasnt walking 7 months ago, who has had 5 infusions, who is walking with a walker now...she was wheelchair bound. So, maybe it is a miracle drug- who knows? The risks are high, but the rewards might be worth it...
Let us know what you decide...and again, welcome.