To CRAB or Not to CRAB
Posted: Sat Mar 11, 2006 8:01 am
Just had an evaluation by a new neuro and he dx'd me as SPMS I think based on the length of time I seem to have had the disease. I never seemed to have had an RR form of the disease. I had a bout of ON in 1985 that eventually resolved and have not had a recurrence of that. The results of the LP at that time had some very strong indicators of MS ( 5 O bands, elevated MBP and elevated IgG). I was going along fine untill about 6 years ago when I begin to experience neuropathic pain in my lower legs and that has continued to be my complaint along with worsening balance.
His recommendation was IV Solumedrol (he was ready to give an IV in the office that day), MRI and evoked potential test, and to consider Betaseron. I told him I would have to think about it and get back with him. When I questioned the effectiveness of CRABs for SPMS and told him that I had read that they were only about 30% effective and were not considered to be even that effective for SPMS, he asked where I was getting my information. I did not respond to that question. He also went on to say that he sees research data all the time that shows that the CRABs are about 50% effective. My questions to those that frequent this site are 1) are CRABs considered an effective tx for SPMS and 2) if so, where can I find the data that supports that argument. If not, where can I find the data that shows that CRABs are not effective for SPMS. At this juncture in the road I am thinking about giving the abx a trial before I go the CRAB route.
I was also given a packet of information (put out by the makers of Betaseron) to help me make an informed decision. Where are all the users of the CRABs that are happy with them (side effects and all). I do check their forums from time to time and it is kind of a mixed review. I don't know if the argument of "it's the best we have to treat MS right now" is good enough for me because I feel that it plays on the patient's fears of doing nothing and continuing to progress. I know several MS patients personally that seemed to have continued to progress while taking a CRAB and one friend has tried a couple of different ones and has not been happy with them. The last one she tried was Betaseron and she was not happy with it. I do want to make an informed decision, but I want idependent data and patient testimonials negative and positive). Also it seems that doctors are so quick to recommend a CRAB at the first sign of MS. Could it be the case that some of these patients may not have MS at all therefore the data supporting the use of a CRAB could posibly be skewed. I do believe I have read that having lesions does not necessarily correspond to disability level. Does relapse rate correspond to lesion load? So what if by being on a CRAB one does not have the formation of new lesions but continues to progress in disability. To me something is wrong with tht picture ( I guess you might consider that a pun) The treatment (until a cure is found) should be one that improves disability level and makes a patient feel better. I suppose that may be a novel idea.
I don't deny that I have MSand I don't deny that I am probably SPMS, I just did not think I was quite as "bad off" as the neuro seemed to think I was. Sure my balance has become worse and I may not have the stamina that I once had, but I'm still ambulatory without assistance, still do all my own husework, still exercise some and try to take care of myself, so I was a little surprised at the "worse case scenario" assesment.
Throwing in an interesting tidbit about the neuropathic pain - a serendipitous discovery . The night I forgot to take the 10 mg of Baclofen at bedtime, the better I felt the next day. So I have tried leaving it off several nights in a row with similar results. A little T&E I don't think I will continue with the baclofen.
Any info or comments would be greatly appreciated.
Ladelle
His recommendation was IV Solumedrol (he was ready to give an IV in the office that day), MRI and evoked potential test, and to consider Betaseron. I told him I would have to think about it and get back with him. When I questioned the effectiveness of CRABs for SPMS and told him that I had read that they were only about 30% effective and were not considered to be even that effective for SPMS, he asked where I was getting my information. I did not respond to that question. He also went on to say that he sees research data all the time that shows that the CRABs are about 50% effective. My questions to those that frequent this site are 1) are CRABs considered an effective tx for SPMS and 2) if so, where can I find the data that supports that argument. If not, where can I find the data that shows that CRABs are not effective for SPMS. At this juncture in the road I am thinking about giving the abx a trial before I go the CRAB route.
I was also given a packet of information (put out by the makers of Betaseron) to help me make an informed decision. Where are all the users of the CRABs that are happy with them (side effects and all). I do check their forums from time to time and it is kind of a mixed review. I don't know if the argument of "it's the best we have to treat MS right now" is good enough for me because I feel that it plays on the patient's fears of doing nothing and continuing to progress. I know several MS patients personally that seemed to have continued to progress while taking a CRAB and one friend has tried a couple of different ones and has not been happy with them. The last one she tried was Betaseron and she was not happy with it. I do want to make an informed decision, but I want idependent data and patient testimonials negative and positive). Also it seems that doctors are so quick to recommend a CRAB at the first sign of MS. Could it be the case that some of these patients may not have MS at all therefore the data supporting the use of a CRAB could posibly be skewed. I do believe I have read that having lesions does not necessarily correspond to disability level. Does relapse rate correspond to lesion load? So what if by being on a CRAB one does not have the formation of new lesions but continues to progress in disability. To me something is wrong with tht picture ( I guess you might consider that a pun) The treatment (until a cure is found) should be one that improves disability level and makes a patient feel better. I suppose that may be a novel idea.
I don't deny that I have MSand I don't deny that I am probably SPMS, I just did not think I was quite as "bad off" as the neuro seemed to think I was. Sure my balance has become worse and I may not have the stamina that I once had, but I'm still ambulatory without assistance, still do all my own husework, still exercise some and try to take care of myself, so I was a little surprised at the "worse case scenario" assesment.
Throwing in an interesting tidbit about the neuropathic pain - a serendipitous discovery . The night I forgot to take the 10 mg of Baclofen at bedtime, the better I felt the next day. So I have tried leaving it off several nights in a row with similar results. A little T&E I don't think I will continue with the baclofen.
Any info or comments would be greatly appreciated.
Ladelle