Guest guest Posted October 4, 2004 Report Share Posted October 4, 2004 Greetings Jeff I know what you mean by the blood tests. My disease cannot be detected by any blook tests. I have blood and urine tests every three months. Cost is about 2000.00. They are always normal. I guess that is a good thing:) Your friend, Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 4, 2004 Report Share Posted October 4, 2004 jim, why do you keep taking these tests? is the doc looking for something that will occur for w~h~a~t~ever reason? if you don't do anything different, why would they change? sometimes docs just don't make any sense with how they use blood tests. my liver enzime and a couple of others like blood sugar, etc. i get for taking methotrexate every 3 months, i thought was a lot, almost $300. jeff > Greetings Jeff > I know what you mean by the blood tests. > My disease cannot be detected by any blook tests. > > I have blood and urine tests every three months. > Cost is about 2000.00. > They are always normal. > I guess that is a good thing:) > > Your friend, Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 Greetings Jeff I take a lot of drugs that need to be monitored. Methroexate, Imuran, Dilantin and the rest of the yickitieyat.LOL Do you take folic acid because you are on Methrotrexate? I am told you need to and am on 2mg a day. Stay as well as you can my friend, Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 5, 2004 Report Share Posted October 5, 2004 jim, yes i do. i take it as vit b complex with folic acid. it is in my multi also. methotrexate works by converting folic acid. i also take milk thistle. it actually has brought down my liver enzime numbers. i think the folic acid and the milk thistle is key to anyone taking mtx. i also take grape seed extract, dhea, a little extra zinc, omega 3 as flax seed oil (can't stand the fishy after taste of the omega 3 fish oil), l-lysine, which is an essential amino acid that is not readily available in your body (body does not make) and not normally in your diet, and a few other things. i have been working on this regimen for about 5 years as i learn more about the meds i am on and my disease. jeff > Greetings Jeff > I take a lot of drugs that need to be monitored. Methroexate, Imuran, > Dilantin and the rest of the yickitieyat.LOL > Do you take folic acid because you are on Methrotrexate? > I am told you need to and am on 2mg a day. > > Stay as well as you can my friend, > Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 6, 2004 Report Share Posted October 6, 2004 What is milk thistle? I am also on methtrexate and take folic acid and would like to do all I can to help the liver. What is it and where can I get the milk thistle? Thanks, Jackie S. Re: JEFF jim,yes i do. i take it as vit b complex with folic acid. it is in my multi also.methotrexate works by converting folic acid.i also take milk thistle. it actually has brought down my liver enzime numbers. i think the folic acid and the milk thistle is key to anyone taking mtx.i also take grape seed extract, dhea, a little extra zinc, omega 3 as flax seed oil (can't stand the fishy after taste of the omega 3 fish oil), l-lysine, which is an essential amino acid that is not readily available in your body (body does not make) and not normally in your diet, and a few other things.i have been working on this regimen for about 5 years as i learn more about the meds i am on and my disease.jeff> Greetings Jeff> I take a lot of drugs that need to be monitored. Methroexate, Imuran, > Dilantin and the rest of the yickitieyat.LOL> Do you take folic acid because you are on Methrotrexate?> I am told you need to and am on 2mg a day.> > Stay as well as you can my friend,> Jim Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2004 Report Share Posted October 7, 2004 hi jackie, i am curious, what do you take methotrexate for? do you shoot up or pill? milk thistle comes from the " milk thistle " plant......lol, it's a member of the daisy family! the seed is ground up. mine also has silymarin, which is a flavonoid and also has some amount of dandelion root, fennel seed and licorice root. all of this is put in a capsule. this has been around sense ancient times. " Evidence exists that milk thistle may be hepatoprotective through a number of mechanisms: antioxidant activity, toxin blockade at the membrane level, enhanced protein synthesis, antifibriotic activity, and possible anti-inflammatory or immunomodulating effects. " go here to read more: http://www.ahcpr.gov/clinic/epcsums/milktsum.htm any drug store or health food store or vitamin store will have it. quite popular and is pretty low cost. i get mine a super k- mart....lol. the brand is sundown. i get the " xtra " strength. jeff > What is milk thistle? I am also on methtrexate and take folic acid and would like to do all I can to help the liver. What is it and where can I get the milk thistle? > > Thanks, > Jackie S. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2004 Report Share Posted October 7, 2004 Dear Jeff, Thanks for the Milk Thistle info and link which I have posted to our Natural Treatments Links. I overheard my vet telling a dog's owner to get him Milk Thistle and when it was our turn I asked what Milk Thistle was for. The vet said it was for the dog's liver. As a kid I had this insatiable need to know and I drove my Mom nuts with questions. I guess I never outgrew it. Have a Happy Night, Everyone! Love, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2004 Report Share Posted October 8, 2004 Hi Jeff, I've been taking Methotrexate by injection (.5 mg once a week). The thought of giving myself a needle did upset me but if it helps I'll do anything. The only thing about this is that nothing seems to be helping. I am still on 10 mg. of prednisone and the plaquinil... I am going to the rheumatologist at the end of the month and if nothing changes I am going to ask her to get me off this stuff as I am afraid of all the side affects. Besides, it shouldn't take 3 medications for the same problem, especially if none of them are working. The leg is still red and lumpy. The only thing that has changed is the swelling. It has gone down but I'm not sure what medication did the trick. Guess we'll have to figure it out... It was either the plaquinil or the predinisone as I wasn't on the Methotrxate yet when the swelling went down. I've only been on the injections for 1 month and by the time I go to her I will have been on it for 2 months. I should know something by then. Thanks for all your info on the milk thistle.. I will check it out next time I get to the store. Thanks, Jackie S. Re: JEFF hi jackie,i am curious, what do you take methotrexate for? do you shoot up or pill?milk thistle comes from the "milk thistle" plant......lol, it's a member of the daisy family! the seed is ground up. mine also has silymarin, which is a flavonoid and also has some amount of dandelion root, fennel seed and licorice root. all of this is put in a capsule. this has been around sense ancient times."Evidence exists that milk thistle may be hepatoprotective through a number of mechanisms: antioxidant activity, toxin blockade at the membrane level, enhanced protein synthesis, antifibriotic activity, and possible anti-inflammatory or immunomodulating effects."go here to read more:http://www.ahcpr.gov/clinic/epcsums/milktsum.htmany drug store or health food store or vitamin store will have it. quite popular and is pretty low cost. i get mine a super k-mart....lol. the brand is sundown. i get the "xtra" strength.jeff> What is milk thistle? I am also on methtrexate and take folic acid and would like to do all I can to help the liver. What is it and where can I get the milk thistle?> > Thanks,> Jackie S.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 8, 2004 Report Share Posted October 8, 2004 hi jackie, did you mean .5cc? .5mg is a really, really small dose. i would hazard to guess it might be almost ineffective. i fill my needle to .4cc and that is 10mg. .5cc is 12 1/2mg. syringe holds 1cc. you have to give the mtx at least 6 weeks to work. don't know if your doc told you that or not. i don't like injecting myself either, but you have to do what you have to do. why do you inject? do you have cd? " normally " , the only reason to inject is due to lack of absorption (due to cd). if you don't have cd or an absorption problem, ask the doc about pills. mtx can have nasty side effects and it is not pleasent. on higher doses it was tough on me. but with the 10mg i have adjusted well and my bloods come in under the " standard " hi limits. i have found that combinations work best. there was no one drug that would help me, and i have tried just about all of them too. plaquenil was not effective for me. tried it two different times. i have tinnitus with hearing loss, and it is autotoxic. so my ears just about went nuts. skin issues is not the primary focus of plaquenil, but in some testing it showed, for a small portion of people, it help with derm issues. that is why docs try it. there are not many good meds out there for our issues, at least none with nasty side effects. taking more than one drug, if something works, it is hard to figure out which one. i started out with one thing, but since it didn't work and i got so bad, the docs threw the whole drug store at me. we have sorted it out to two things, remicade and mtx. they both compliment each other, one is biological and one is immunomodulator. remicade is more effective with an immunomodulator at the same time. the pred probably helped bring the swelling down. if it is immunotherapy the doc wants to do, there are many other choices out there. true, none are pleasent or 100% safe. all are with side effects. all were originally developed for other purposes, such as transplants. goes to show you how little we know about these diseases. good luck and let me know if you have any other questions and how things work out. jeff > Hi Jeff, > > I've been taking Methotrexate by injection (.5 mg once a week). The thought of giving myself a needle did upset me but if it helps I'll do anything. The only thing about this is that nothing seems to be helping. I am still on 10 mg. of prednisone and the plaquinil... I am going to the rheumatologist at the end of the month and if nothing changes I am going to ask her to get me off this stuff as I am afraid of all the side affects. Besides, it shouldn't take 3 medications for the same problem, especially if none of them are working. The leg is still red and lumpy. The only thing that has changed is the swelling. It has gone down but I'm not sure what medication did the trick. Guess we'll have to figure it out... It was either the plaquinil or the predinisone as I wasn't on the Methotrxate yet when the swelling went down. I've only been on the injections for 1 month and by the time I go to her I will have been on it for 2 months. I should know something by then. > > Thanks for all your info on the milk thistle.. I will check it out next time I get to the store. > > Thanks, > Jackie S. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2004 Report Share Posted October 9, 2004 Hi Jeff, Thanks so much for all that information. I fill the needle to .5cc sorry for the confusion, I'm still new at this needle busness. I was told it would take a little bit of time for the Methotrexate to work but by the time I go back to her at the end of the month it will have been almost 2 months. I figure I should know if it is starting to work or not by then. Like you, I don't think there is any one drug to combat this disease. I was diagnosed with Panniculitis last March with no apparent cause. I must admit I had been suffering with a wicked sore throat for months before the pann showed up and am wondering, after reading all the posts, if there really is a connection to that and a missed dianosis of my throat condition. The doctor told me that I didn't have strep at the time but I'm willing to bet now that I did. The reason she wanted me to use the needle is because she feels it is more affective. I did ask about the pills and was told no. So, I will inject or do whatever I can to help with my red lumps and pain. Hope something starts working soon. Hope you have a pain free weekend. Jackie S. Re: JEFF hi jackie,did you mean .5cc? .5mg is a really, really small dose. i would hazard to guess it might be almost ineffective. i fill my needle to .4cc and that is 10mg. .5cc is 12 1/2mg. syringe holds 1cc. you have to give the mtx at least 6 weeks to work. don't know if your doc told you that or not. i don't like injecting myself either, but you have to do what you have to do. why do you inject? do you have cd? "normally", the only reason to inject is due to lack of absorption (due to cd). if you don't have cd or an absorption problem, ask the doc about pills. mtx can have nasty side effects and it is not pleasent. on higher doses it was tough on me. but with the 10mg i have adjusted well and my bloods come in under the "standard" hi limits.i have found that combinations work best. there was no one drug that would help me, and i have tried just about all of them too. plaquenil was not effective for me. tried it two different times. i have tinnitus with hearing loss, and it is autotoxic. so my ears just about went nuts. skin issues is not the primary focus of plaquenil, but in some testing it showed, for a small portion of people, it help with derm issues. that is why docs try it. there are not many good meds out there for our issues, at least none with nasty side effects. taking more than one drug, if something works, it is hard to figure out which one. i started out with one thing, but since it didn't work and i got so bad, the docs threw the whole drug store at me. we have sorted it out to two things, remicade and mtx. they both compliment each other, one is biological and one is immunomodulator. remicade is more effective with an immunomodulator at the same time.the pred probably helped bring the swelling down. if it is immunotherapy the doc wants to do, there are many other choices out there. true, none are pleasent or 100% safe. all are with side effects. all were originally developed for other purposes, such as transplants. goes to show you how little we know about these diseases.good luck and let me know if you have any other questions and how things work out.jeff> Hi Jeff,> > I've been taking Methotrexate by injection (.5 mg once a week). The thought of giving myself a needle did upset me but if it helps I'll do anything. The only thing about this is that nothing seems to be helping. I am still on 10 mg. of prednisone and the plaquinil... I am going to the rheumatologist at the end of the month and if nothing changes I am going to ask her to get me off this stuff as I am afraid of all the side affects. Besides, it shouldn't take 3 medications for the same problem, especially if none of them are working. The leg is still red and lumpy. The only thing that has changed is the swelling. It has gone down but I'm not sure what medication did the trick. Guess we'll have to figure it out... It was either the plaquinil or the predinisone as I wasn't on the Methotrxate yet when the swelling went down. I've only been on the injections for 1 month and by the time I go to her I will have been on it for 2 months. I should know something by then. > > Thanks for all your info on the milk thistle.. I will check it out next time I get to the store.> > Thanks,> Jackie S.> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 9, 2004 Report Share Posted October 9, 2004 Dear Jackie, Hey, no problem. Took me a while to get the hang of the needle thingy too. I guess the doc may have a point, it's affectiveness would likely be improved with the needle. Are you having any side effects? I got them moderately at 15mg. I reduced to 12 1/2mg then to 10mg slowly over a year period. I am staying at 10mg so as to not risk a flare. I have very minor side effects at 10mg as compared to 15mg. I hope she did a strep culture, you really can't tell any other way. I used to get strep throat a lot in my 30's. Take care and hope you are feeling better. jeff > Hi Jeff, > Thanks so much for all that information. I fill the needle to .5cc sorry for the confusion, I'm still new at this needle busness. I was told it would take a little bit of time for the Methotrexate to work but by the time I go back to her at the end of the month it will have been almost 2 months. I figure I should know if it is starting to work or not by then. Like you, I don't think there is any one drug to combat this disease. I was diagnosed with Panniculitis last March with no apparent cause. I must admit I had been suffering with a wicked sore throat for months before the pann showed up and am wondering, after reading all the posts, if there really is a connection to that and a missed dianosis of my throat condition. The doctor told me that I didn't have strep at the time but I'm willing to bet now that I did. The reason she wanted me to use the needle is because she feels it is more affective. I did ask about the pills and was told no. So, I will inject or do whatever I can to help with my red lumps and pain. Hope something starts working soon. > > Hope you have a pain free weekend. > > Jackie S. ><snip> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 10, 2004 Report Share Posted October 10, 2004 Dear Jeff, So far I haven't had any real side affects from the shots... I've had a few bad headaches but don't know if that is associated with the shots or not. I also haven't had any benefit so far.... My leg still has the flare after 4 weeks of injections. As for the strep test... that was 1 1/2 yrs. ago and I can't remember if she did the strep test of not. Didn't seem all that important at the time... it does now though. Wish I knew as there does seem to be a connection between strep and this disease. I used to get a lot of strep and tonsilitis when I was a kid... then at 17 they decided to take out the tonsils and I've been much better since. I'll keep you posted as to how I make out with the Methotrexate and what she tells me when I go to her at the end of the month. Thanks so much for all you input. Jackie S. Re: JEFF Dear Jackie,Hey, no problem. Took me a while to get the hang of the needle thingy too. I guess the doc may have a point, it's affectiveness would likely be improved with the needle. Are you having any side effects? I got them moderately at 15mg. I reduced to 12 1/2mg then to 10mg slowly over a year period. I am staying at 10mg so as to not risk a flare. I have very minor side effects at 10mg as compared to 15mg.I hope she did a strep culture, you really can't tell any other way. I used to get strep throat a lot in my 30's.Take care and hope you are feeling better.jeff> Hi Jeff,> Thanks so much for all that information. I fill the needle to .5cc sorry for the confusion, I'm still new at this needle busness. I was told it would take a little bit of time for the Methotrexate to work but by the time I go back to her at the end of the month it will have been almost 2 months. I figure I should know if it is starting to work or not by then. Like you, I don't think there is any one drug to combat this disease. I was diagnosed with Panniculitis last March with no apparent cause. I must admit I had been suffering with a wicked sore throat for months before the pann showed up and am wondering, after reading all the posts, if there really is a connection to that and a missed dianosis of my throat condition. The doctor told me that I didn't have strep at the time but I'm willing to bet now that I did. The reason she wanted me to use the needle is because she feels it is more affective. I did ask about the pills and was told no. So, I will inject or do whatever I can to help with my red lumps and pain. Hope something starts working soon.> > Hope you have a pain free weekend.> > Jackie S.><snip> Quote Link to comment Share on other sites More sharing options...
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