I have never taken any drugs for MS and I'm 20 plus years in but really having a tough time of late any suggestions?
You seem kind of young to have secondary progressive. I've been diagnosed with secondary progressive, but I'm 66 years old! I assume you've been diagnosed with MS. My advice is, talk to your neurologist. If you don't trust him/her, find a new neurologist. Keep in mind: they really know so little about MS. The drugs on the market are determined to be effective by statistical analysis ONLY. I started on Avonex, then switched to Rebif, both of them interferon injections, but Avonex is an intra-muscular injection (bigger needle, harder to take, but advantage is you only have to take it once a week). Rebif is a subcutaneous injection (like insulin) but taken 3 times a week. KEEP IN MIND no one can tell you definitively if any drug is helping you. My recent MRI's show no active lesions, and they POSIT that this is a result of the interferon. But keep in mind, they are unable to relate MRI's with progression of the disease. So my MRI's look better, but my symptoms continue to progress. (This is a long discussion, full of the many things they simply do not know.) I now switched to an oral medication, Tecfidera, because I am slowly losing use of my right arm, so giving myself injections is difficult and I had a lot of scar tissue from taking Rebif for so long. I'll have my next MRI in June and we will use that to judge the effectiveness of the Tecfidera. Many people get holier than thou about refusing to take disease-modifying medication (like interferon), but my personal experience is that these people tend not to have many serious symptoms. I am in a wheelchair (started out with a cane, then a rollator, and now a wheelchair). Taking medication is an individual choice, but we simply have to accept the fact that science is in the dark on this disease. Whatever you do, it's a gamble. My advice is that you talk to a neurologist you trust and see what he/she recommends. If you don't like the answer you get, go to another neurologist and compare them. Then make a choice you can live with.
I think I was similar to you, only I didn't have dx. I struggled initially, got several long reprieves, then the monster started in about the 15 year mark after the initial flare that went undx'd. By the time I was dx'd, after 20 years, I was really struggling. I was placed on Avonex first and did get better, but it caused me to have seizures, so doc recommended switching to Rebif thinking that 3 times a week of smaller doses wouldn't be such a "shock" to my system. Did Rebif until my insurance refused to cover and was thinking of switching due to the site reactions were getting really bad (think quarter or half-dollar size mosquito bite welts that wouldn't go away for 2-3 weeks). Went on Tecfidera and aside from the nuisance of flushing and itching, was fine, but when it began to rob me of my appetite and cause my facial skin to be rough and somewhat scale-y, time to switch again. I am now on Copaxone and have basically been symptom free in all manners of the word - only one site reaction in about a year. On the negative side, don't think it is working for me and today had to have a CT scan done for another reason and discovered that my MS is "chronically progressing," so waiting to talk to neuro about yet another change - - thinking I am SSPS, no longer RRMS.
I was diagnosed in 2000. It really has been a journey of discovery. I've been lucky, blessed, to have been exposed to some really good Dr's.. Some who new their stuff, some who were willing to learn, or I learned to find what I needed. My family is supportive. I'm a Christian, and my faith and sense of humor get me through most everything.
Thank you so much for replying with such good advice how long have you been labeld
I've tried several interferon drugs. First Copaxon, I was not compliant with it. The site reactions were too much for me to take. I tried many things to help the reactions and nothing worked. Because I was not compliant, I would get more relapses. We than tried Avonex. I was compliant. I could deal with side effects. Still having to many relapses. Placed on Rebiff, I'm compliant and side effects are minimal. Relapses have been reduced in number and severity. It's just about finding what works for you. Don't settle for less. Keep track of your symptoms and know how you feel. Only you can know that. I had a Dr. Tell me one time that the symptom I was was telling him about was impossible. I found a new Dr. MS is confusing enough without the Dr. Not willing to listen to you.
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