Guest guest Posted January 4, 2008 Report Share Posted January 4, 2008 Hi Pam, I started methotraxate last October with 5 - 2.5mg pills per week and quickly went up to 8 pills per week (present). It has not improved my condition, the next step might be Remicade (which I have been avoiding because I hate IV's). I'm presently on Lyrica which replaced Gabapentin. I came down with NeuroSarc last March and I'm being weaned off Predisone which has helped me the most. It seems like almost everyone here has different or unique symptoms and meds work differently for different people. regards, Rick pammarkpie wrote: For those who have taken methotrexate what dose did you start at and at what dose did you find it helpful? How long did it take? Where you on any other meds to go with it?Thanks, Pam Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2008 Report Share Posted January 5, 2008 Hi Pam,I take Methotrexate by subq shots that I give to myself once per week (took my 8th injection last Tuesday). I also take prednisone (now down to 35mg a day) and have for 3 1/2 yrs at varying doses. I can tell a definite difference with the Metho...my heart isn't skipping as much as it was. I have cardiac sarcoidosis as well as neurosarc and have an AICD. I had my AICD checked yesterday and my PVC's (single ones) are around 3300 per month with my PVC "runs" being less than before (prior check was several weeks ago). So, I am so glad that I can take the Metho. I do take many other meds including 3 different insulins (did not have to do the insulin until after a year on steroids). But, even so, thank God for prednisone too even with it's side effects b/c I wouldn't be here without it. My doctor told me I would never be able to stop the steroids but hopefully would tolerate a much lower dose so eventually hope to go down to 10mg a day. I am waiting for a MUGA scan to get cleared for monthly remicade infusions...my cardio has to clear me and he won't do that unless my heart ejection fraction is >50%. Remicade can cause problems for people with CHF and I already know my heart is enlarged plus have the cardiac sarcoidosis. My situation is to the point though that they are trying everything.Blessings,BeckyRick Jack wrote: Hi Pam, I started methotraxate last October with 5 - 2.5mg pills per week and quickly went up to 8 pills per week (present). It has not improved my condition, the next step might be Remicade (which I have been avoiding because I hate IV's). I'm presently on Lyrica which replaced Gabapentin. I came down with NeuroSarc last March and I'm being weaned off Predisone which has helped me the most. It seems like almost everyone here has different or unique symptoms and meds work differently for different people. regards, Rick pammarkpie <pmothershead (AT) verizon (DOT) net> wrote: For those who have taken methotrexate what dose did you start at and at what dose did you find it helpful? How long did it take? Where you on any other meds to go with it?Thanks, Pam Never miss a thing. Make Yahoo your homepage. Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2008 Report Share Posted January 5, 2008 Pam, Most docs will start you at about 7.5 mg, and have you work up to 15mg a week. They have found in studies that more than 15mg a week doesn't help with sarc. If you are concerned about liver toxicity from it-- or if your MD says that your liver is happy with the MTX-- then you can get the shots and it totally bypasses the liver. You will need to take Folic Acid 1mg daily to ward off pernicious anemia caused by the MTX. So make sure you get a prescription for that-- do not go with the "over the counter" Folic Acid-- this is a dose higher than you can get without a prescription. Sincerely, Tracie NS Co-owner/moderatorStart the year off right. Easy ways to stay in shape in the new year. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2008 Report Share Posted January 5, 2008 Pam, Most docs will start you at about 7.5 mg, and have you work up to 15mg a week. They have found in studies that more than 15mg a week doesn't help with sarc. If you are concerned about liver toxicity from it-- or if your MD says that your liver is happy with the MTX-- then you can get the shots and it totally bypasses the liver. You will need to take Folic Acid 1mg daily to ward off pernicious anemia caused by the MTX. So make sure you get a prescription for that-- do not go with the "over the counter" Folic Acid-- this is a dose higher than you can get without a prescription. Sincerely, Tracie NS Co-owner/moderatorStart the year off right. Easy ways to stay in shape in the new year. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 5, 2008 Report Share Posted January 5, 2008 Gosh Pam, it’s been awhile but I think I started at 5mgs, up to 12.5 was there for 3 years, now up to 20mg but not working anymore, I heard that over 12 is not usually helpful?? I however did well at 12.5 for the 3 years I was on it, it took a few months before I saw results, so hang in there. We are hoping to get the insurance co. to OK Remicade, we’re on appeal #2, so will see. I hope you get relief with the methotrexate, it really helped me a lot for a long time. Marla From: Neurosarcoidosis [mailto:Neurosarcoidosis ] On Behalf Of pammarkpie Sent: Friday, January 04, 2008 12:14 PM To: Neurosarcoidosis Subject: methotrexate dose... For those who have taken methotrexate what dose did you start at and at what dose did you find it helpful? How long did it take? Where you on any other meds to go with it? Thanks, Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2008 Report Share Posted January 7, 2008 Thanks to all who responded! My doctor started me at 7.5mg (3 pills of 2.5mg) of MTX. She will increase it in 2 weeks, as long as labs are good. The increase will be by 3 pills for a total of 6 pills. She will do this again 2 weeks later for a total of 9 pills. If that doesn't help she will work on getting the insurance to pay for one of the newer drugs. I am taking the prescription folic acid. My next question is did any of you experience side effects on the initial dose? I am already developing a small ulcer under my tongue (I took my first dose of MTX on Friday and today (Monday) is the first day of any side effedts. I am also having some very mild nausea (it's not bad at all-was still able to eat and keep things down.). Thanks again, Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 7, 2008 Report Share Posted January 7, 2008 Thanks to all who responded! My doctor started me at 7.5mg (3 pills of 2.5mg) of MTX. She will increase it in 2 weeks, as long as labs are good. The increase will be by 3 pills for a total of 6 pills. She will do this again 2 weeks later for a total of 9 pills. If that doesn't help she will work on getting the insurance to pay for one of the newer drugs. I am taking the prescription folic acid. My next question is did any of you experience side effects on the initial dose? I am already developing a small ulcer under my tongue (I took my first dose of MTX on Friday and today (Monday) is the first day of any side effedts. I am also having some very mild nausea (it's not bad at all-was still able to eat and keep things down.). Thanks again, Pam Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2008 Report Share Posted January 12, 2008 Hi Rick, Yes, you are correct, different meds react differently to each person with sarcoid. It also depends upon the severity of each person's case. Prednisone is a very good drug that responds to sarcoid well. If it is completely necessary for your case, the drs. will keep you on it. Unfortunately, sometimes it works like a temporary fix and once you come off it, sometimes the sarcoid returns to its previous state. Also if you read up on prednisone, you will find that it is not a med that after long periods of time may not good for the body due to the possible serious side effects. (see archives and/or links to this site.) I think you should seriously review your thoughts on the Remicade. Again if you check the archives and the posts from people in our group, it may help you with your decision. I hope this helps ..... Debbie T. Co-Moderator Re: methotrexate dose... Hi Pam, I started methotraxate last October with 5 - 2.5mg pills per week and quickly went up to 8 pills per week (present). It has not improved my condition, the next step might be Remicade (which I have been avoiding because I hate IV's). I'm presently on Lyrica which replaced Gabapentin. I came down with NeuroSarc last March and I'm being weaned off Predisone which has helped me the most. It seems like almost everyone here has different or unique symptoms and meds work differently for different people. regards, Rick pammarkpie wrote: For those who have taken methotrexate what dose did you start at and at what dose did you find it helpful? How long did it take? Where you on any other meds to go with it?Thanks, Pam Never miss a thing. Make Yahoo your homepage. Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2008 Report Share Posted January 12, 2008 Hi Rick, Yes, you are correct, different meds react differently to each person with sarcoid. It also depends upon the severity of each person's case. Prednisone is a very good drug that responds to sarcoid well. If it is completely necessary for your case, the drs. will keep you on it. Unfortunately, sometimes it works like a temporary fix and once you come off it, sometimes the sarcoid returns to its previous state. Also if you read up on prednisone, you will find that it is not a med that after long periods of time may not good for the body due to the possible serious side effects. (see archives and/or links to this site.) I think you should seriously review your thoughts on the Remicade. Again if you check the archives and the posts from people in our group, it may help you with your decision. I hope this helps ..... Debbie T. Co-Moderator Re: methotrexate dose... Hi Pam, I started methotraxate last October with 5 - 2.5mg pills per week and quickly went up to 8 pills per week (present). It has not improved my condition, the next step might be Remicade (which I have been avoiding because I hate IV's). I'm presently on Lyrica which replaced Gabapentin. I came down with NeuroSarc last March and I'm being weaned off Predisone which has helped me the most. It seems like almost everyone here has different or unique symptoms and meds work differently for different people. regards, Rick pammarkpie wrote: For those who have taken methotrexate what dose did you start at and at what dose did you find it helpful? How long did it take? Where you on any other meds to go with it?Thanks, Pam Never miss a thing. Make Yahoo your homepage. Looking for last minute shopping deals? Find them fast with Yahoo! Search. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2008 Report Share Posted January 12, 2008 If some where to have told me all the thing that were going to happen to my body while I was on Prednisone I would have said no thank you. I was on 60mgs for 90 days. My hair started to turn black and then started to fall out. I for the first time in my life got acne which then turned into cystic acne from which I have scars on my face. Despite excerise and strict diet I gained atleast 40lbs. I have a "hunchback lump" or a "buffalo hump" on the back of my neck that will only go away with orthopedic surgery. I suffered from depression that turned into borderline bi polar behavioral disorder. This medication is awful and if can do awful things to your body. It is not worth taken unless you are prepared for the mental and physical changes. I was not doing well so I was weined off the medication over a three week time period. after 48 hours of stopping the medication the sarcoid had come back with a vengence. My sarcoid is the worst in my eyes and brian. I have alot of neurological problems and have a hard time doing normal everyday tasks. I am 23 and a mother of 2. I dont have the luxary of having a hard time with things. My husband is set to deploy to Iraq in April and then I will be fighting this battle alone. I have expierecne diagnoising sarcoid... there is a new drug Enbrel that I think is worth looking into. Imuran and methotrexate are also perscribed to treat sarcoid..... There is a specialty clinic in Dallas that I just learned about that works with sarcoid patients..... Never miss a thing. Make Yahoo your homepage. Quote Link to comment Share on other sites More sharing options...
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