Guest guest Posted February 14, 2000 Report Share Posted February 14, 2000 In a message dated 2/14/00 11:57:16 AM Eastern Standard Time, william.e.price@... writes: << If you have any other info about the Solumedrol I would appreciate it. n is doing so so today. >> The only thing I can tell you that hasn't been mentioned already is it leaves a weird metallic taste in my mouth during treatments. <smiles helpfully> It seems to fade away a few hours afterwards though. cheers Jenni Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 14, 2000 Report Share Posted February 14, 2000 Hi . I'm a nurse and I remember Dr Warren saying to me that the IV steroids had far less side effects than the oral and when I looked at him at the dose he wanted on he just said trust me. I must say that although he still has the hamster cheeks he looks very much better than before and to think that we are only on 0.25ml orally it's fantastic. I think under the circumstances if it's the difference of your child leading a normal life and basically the only way they can is with steroids. You may even speak to your rheumatologist about starting ENBREL was the first to go on it here in Texas the day it was FDA approved and you really noticed a difference within a few days. However I would also check with your insurance provider as it is about $14,000 a year. I have been very fortunate with ours on that I now have to start working on some kind of respite which will allow use to have his medication given outside our home. I hope you are getting peace with the answers we are giving you. I must say that I would have rather been 's mother and not his nurse, it has been a long 3.5years and I am just coming round to the idea that if I can make 's life as full and as pain free then I have done the right thing by him. Take care and if you want to phone an time please feel free to do so #281-395-9033 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2002 Report Share Posted October 6, 2002 Hi Jim, Here's some info about steroids. http://www.lymphoma.org.uk/support/information/Steroids.htm I don't remember if you said what kind of steroids your doctor intends to use. I've just heard that pwcs should be very careful about using any steroids because our steroid levels are usually out of balance. For instance, in a class I went to about CFIDS, the doctor told us that cortisol levels are supposed to rise in the morning and fall in the evening so we can go to sleep. In CFIDS, the sufferer's cortisol levels are low in the morning and rise high at about 11:00p.m. that's part of why so many of us have difficulty falling asleep at night. I've read about this from various articles as well. Tracey jschm111@... wrote: > Thanks for all the input. > > My doc is not too knowledgeable on CFS. But, he seems to want to take > this > route first. I'm having immune and neuromucular tests done elsewhere. > > Hopefully he'll be willing to do more oncve this is done. I think > he's > willing to do a GH stim test, which I need. > > When I really overdo it, the skin on my thighs gets tight, and I get > some > burning. I guess he thinks that means it's inflammation. He also > said this > is a quick, one shot way to find out. I'm a willing guinea pig, as > long as > it isn't overly dangerous. > > Steve, is the C-reactive protein test well established as a good > indicator of > inflammation? I've been meaning to look into it. Are there other > blood > tests that can be used besides just seeing if a treatment helps? > > Tracey, > > Isn't cortisol a different kind of steroid? > > Jim > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2002 Report Share Posted October 9, 2002 Dear Jim, Just FYI, don't forget that steroids suppress the immune system. I remember many years ago a person who had been treated by Dr Fudenberg for a genetically acquired immune deficiency, and finally was in good health. She was subsequently given many sub-q injections of steroids for scabies by a dermatologist, then developed into full-blown CFIDS. Dr Fudenberg believed that it was due to the steroids. Best wishes, Michele G -- In @y..., jschm111@c... wrote: > My doc wants to put me in the hospital for IV steroids to see what happens. > It's basically to check if my problems are caused by inflammation, I think. > I don't know too much on the subject - does anyone have any input on one-time > steroids {I know long term they can be bad}? > > Thanks, > > Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2002 Report Share Posted October 10, 2002 Thanks for all the input. My doc is not too knowledgeable on CFS. But, he seems to want to take this route first. I'm having immune and neuromucular tests done elsewhere. Hopefully he'll be willing to do more oncve this is done. I think he's willing to do a GH stim test, which I need. When I really overdo it, the skin on my thighs gets tight, and I get some burning. I guess he thinks that means it's inflammation. He also said this is a quick, one shot way to find out. I'm a willing guinea pig, as long as it isn't overly dangerous. Steve, is the C-reactive protein test well established as a good indicator of inflammation? I've been meaning to look into it. Are there other blood tests that can be used besides just seeing if a treatment helps? Tracey, Isn't cortisol a different kind of steroid? Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 25, 2006 Report Share Posted February 25, 2006 Hi, I just recently been through alot of stress which led me to a huge exacerbation so I had to do the IV steroids for 3 days, 1gm each day. My question is how long do I need to wait to get back on the LDN? I just finished last steroid treatment yesterday. Thankyou Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 26, 2006 Report Share Posted February 26, 2006 > > Hi, I just recently been through alot of stress which led me to a huge > exacerbation so I had to do the IV steroids for 3 days, 1gm each day. My > question is how long do I need to wait to get back on the LDN? I just finished last > steroid treatment yesterday. > > Thankyou > > ======== Dr. Bihari recommends that one keep taking LDN along with the steroids if steroids is a must. Now that you have taken the steroids you will probably develop candida so do the candida test. See link below. If you have candida a low carb diet must be followed along with supplements. Ignore the google ads at top. Low Dose Naltrexone Forum - Check yourself for Candida(yeast overgrowth)... http://ldn.proboards3.com/index.cgi?board=forum & action=display & thread=1129136093 Quote Link to comment Share on other sites More sharing options...
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