EP is a community where members connect through shared life experiences-- like MS--and so much more. You are not defined by any one thing, so be your true self and find others just like you at
Experience Project.
Joined: May 24, 2004 Posts: 6 Location: Western NY
Posted: Thu Jun 10, 2004 9:31 pm Post subject: LDN and steroids
I have SPMS. My neuro has given me a prescription for LDN and I've located a compounding pharmacy. In my research on the web I've found one mention (Dr M R Lawrence) of LDN not to be taken with steroids. I've been on Solumdrol 1 GM IV/mo for six months. What does Dr. Bihari have to say about this?
I just rephrased the question and posted it again. I read this at one point, too, and am interested in knowing. My son only uses solumedrol when he has a severe exacerbation, but I can well understand your concern using it monthly. I guess if worse comes to worse, one of us can call Dr. Bihari's office and ask. His assistant is really helpful, and generally answers the phone. Dr. Bihari is not the one who prescribed my son's LDN, and I will ask Dr. Scott as well next month when we do the 2 month progress check. Did you start the LDN? If so, how are you doing on it?
I have stopped the monthly Medrol infusions and am well into my second month of LDN. The first week I had to lower the dose to 1.5mg in order to sleep but have been taking 3mg. since. I've noticed more energy and much less cramping in my legs, feet and hands since starting the LDN.When I asked my neuro about the LDN he said he had one onther patient on it and wrote me the prescription. He has since started 3 others on LDN and the response has been good.
I'm very happy for you, and excited that your neuro was able to work "outside the box" enough to prescribe it for you. I wish everyone were so lucky. Glad you're doing so well. I am thinking that my son will be switched to 4.5 mg next month, so wish us luck with that. I'm optimistic that he will do well at that dosage as well. He tolerates meds really well, and has had no problems with insomnia or stiffness so far!
Joined: May 24, 2004 Posts: 6 Location: Western NY
Posted: Mon Jul 19, 2004 9:34 am Post subject:
Let us know how your son does on 4.5mg. When I get my next Rx I'm going to ask for 4.5mg as well. Has he had any MRI's done since starting the LDN that may show a slowing of progression?
No MRI's yet, he is just moving into his 4th week on LDN at 3 mg. He is seeing a new neuro in Sept., but I don't know whether they will order an MRI or not at that time. Interestingly enough, all of his lesions disappeared with Avonex. Then he had that really bad exacerbation last summer and had an MRI at that time, which revealed one lesion on the base of his brain stem, hence the severity of the attack. He hasn't had an MRI since. Or any problems, either, for that matter.
I truly hope the LDN support grows on this board. I use another large support group on here for LDN, but it is being used by people with various diseases and disorders within that group, and it is nice to have the opportunity to have a group for MSer's on LDN.
I will certainly keep you posted! Take care, and have a great week!
Joined: May 24, 2004 Posts: 6 Location: Western NY
Posted: Tue Aug 31, 2004 8:54 pm Post subject:
Sorry for the delay... Is your son still taking the Avonex? A friend of mine who has been on Avonex for years started LDN 4 days ago and is feeling somewhat worse but we have had a very hot, humid spell so that could be the reason, too.
I was Dxed w MS in '85 and have enjoyed 66 years of life. So far the LDN has me walking well with no aids (had been using forearm crutch), no more restless legs, much less cramping of hands, feet and legs, and no need of the ventilator during the day. Oh, yes! Much more energy and a heightened sense of well-being, too. Still need the Bipap vent at night though. Weakness of respiratory muscles. I'm increasing to 4.5mg tonight.
Would you believe that I have not been able to split and stack wood for the last few years but CAN this year? Hip hip hooray!
Hi. Good to hear from you again. Colby hasn't used the Avonex in almost 2 years. He only used it for a year, then had one of the worse exacerbations he has ever had, so he was switched to Rebif. The Rebif was really hard on him and caused such severe depression that he could not function properly, so he is only taking LDN. Dr. Scott elected not to increase it at this time, since he is doing so well on it at 3 mg. He said we were having "perfect" results from it, and there was no need. This confused me somewhat since I have always heard that 4.5 was the optimum dosage for LDN and MS, but he's the doc...
I have always been told that you should not take the interferons with LDN, that their actions and indications more or less counteract each other, and you will benefit from neither. This is understandable, since they work in 2 totally opposite ways. But, I have heard of others using both, so who knows???
Anyway, my son continues to do fantastic on the LDN. We have truly seen the changes since school started back a month ago, more so than we already were. I knew that his thought process had improved and he didn't seem as forgetful as he was while on the interferons, but his grades are really proving that the "brain fog" has lifted. He's doing better than he has since before his diagnosis 3 years ago - he was a straight A student prior to the diagnosis and hasn't been since, but I believe he will be this year.
So glad you are having the success you are having with LDN. I hope your friend sees the same results you and my son have seen! If he/she continues to feel poorly, they might check around on the compounder they are using. I have heard that the filler and the expertise of the compounder can make all the difference in the world. Please keep in touch. Hope you're having a wonderful week.
You cannot post new topics in this forum You cannot reply to topics in this forum You cannot edit your posts in this forum You cannot delete your posts in this forum You cannot vote in polls in this forum
Forum FAQ
Search
Usergroups
Profile
Log in to check your private messages
Log in
