Guest guest Posted April 19, 2000 Report Share Posted April 19, 2000 Hi, Kathy, it's interesting that you mentioned this ~ about the hair. Josh has been taking prednisone, MTX, and an NSAID since his very first systemic flare in May, 1995 (when he had just turned 6). The other meds have been added slowly at later times. Josh has extra hair growth from the steroids when he's on a high dose or while he's weaning down. On his face, legs, upper back. In the past, this side effect did disappear when we got to a lower dose. We're on our way towards that again, so hopefully ... it won't be too long. We will be seeing his rheumatologist next Thursday and I'll ask him about it then but maybe somebody here has experience with this issue and will know. My daughter is 9 years old and just started to get a very small amount of underarm hair. As far as her pediatrician says, this is absolutely normal for her age. She's right on target for these sorts of pre-pubertal bodily changes. Josh (two years older) on the other hand, has no sign of underarm or pubic hair. Or any other pre-pubertal physical changes, as far as I know. Is it possible that a child who's taking arthritis meds will have a delayed onset puberty? Actually, I was visiting some sites about growth disturbances and related topics and one of the issues was boys puberty and it said not to worry until your male child has reached the age of 15 and still doesn't have any sign of puberty beginning. So, being that he just turned 11 it's not something I'm worried about, just wondering. Anyone here who thinks that arthritis meds might have caused a delayed onset puberty? Thanks, Georgina akally@... wrote: > > Hello, > My son has been on 5 mg. of methotrexate, since January. For the first 3 > weeks, he had a hard time with the drug and then I started giving it to him > at night, at a different time than the ibuprofen and prednisone. That worked > great. Now, I give him the first 2.5 mg tablet at 10pm and the other at > midnight. I asked his RD about the staggered pill and she didn't see any > reasons why we couldn't do this. Now, there is little or no side effects. > We are still trying to wean Tally off the prednisone. If I had a choice > between prednisone and methotrexate, I would choose the methotrexate. That > is just my personal opinion. It was so disheartening last week as I was > dressing Tally. He looks down to his pee pee and says, " mama, I have hair > growing on my peepee... " and I looked and he did indeed have hair growth. > He hasn't gained much weight though and I have had to buy new shoes since > December, so he feet appear to be growing. > kathy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2000 Report Share Posted May 1, 2000 Hi Judy, My daughter has been on MTX for alittle over a year now. She started taking it orally & we just switched to injections a couple weeks ago. She also takes Folic acid every day that helps to counteract alot of side efffects that you can experience. For my daughter it was great at first but as time went on she began having more & more stomach upset along with being very tired. The nasuea got so bad that we switched to the injections & they are working out great. MTX does take awhile to actually begin working,about 2 months in our case but it has worked really well. You do have to have regular monitoring of your blood though to check liver function & your white count among others things. My daughter goes every 4 weeks for lab work but thatnks to EMLA cream( a numbing cream RX only) those visits have not been bad. She had experienced also a few mouth sores but nothing that was out of control. Hope this answers a few of your questions. I would be glad to answer an specifics if I could. Just let me know. There are alot of parents on this board whose children are on MTX. Kris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 1, 2000 Report Share Posted May 1, 2000 Hi, Kris, My daughter is also on MTX, but only for a short time now. So far, I have not seen any real changes. I had asked the questions before about the MTX masking the problem of JRA. My other questions about MTX is it normal for the swelling to still be there but not as much pain? We talked to the doctor today and he wants to do another knee injection and continue the MTX. It was a hard enough decision to put Kenzie on this drug and now we still have to put her under for an injection! I don't get it. My husband and I are a little confused. McKenzie had only been on the metho for three weeks when we got her first blood work back and her liver tests were high so the doctor had her skip a dose and repeat blood work a week later. Those tests came back normal. He wants to lower the dose ( which is already very low) and as I said do another knee injection. Anyone with some helpful advice would be great. Thanks, Angel Beers Re: Methotrexate Hi Judy, My daughter has been on MTX for alittle over a year now. She started taking it orally & we just switched to injections a couple weeks ago. She also takes Folic acid every day that helps to counteract alot of side efffects that you can experience. For my daughter it was great at first but as time went on she began having more & more stomach upset along with being very tired. The nasuea got so bad that we switched to the injections & they are working out great. MTX does take awhile to actually begin working,about 2 months in our case but it has worked really well. You do have to have regular monitoring of your blood though to check liver function & your white count among others things. My daughter goes every 4 weeks for lab work but thatnks to EMLA cream( a numbing cream RX only) those visits have not been bad. She had experienced also a few mouth sores but nothing that was out of control. Hope this answers a few of your questions. I would be glad to answer an specifics if I could. Just let me know. There are alot of parents on this board whose children are on MTX. Kris ------------------------------------------------------------------------ Get paid for the stuff you know! Get answers for the stuff you dont. And get $10 to spend on the site! 1/2200/1/_/524922/_/957193765/ ------------------------------------------------------------------------ For links to websites with JRA info visit: http://www.geocities.com/Heartland/Village/8414/Links.html Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2000 Report Share Posted May 2, 2000 Hi Angel, Ashton's liver functions have come back elevated before what I was told by both pediatrician & rheumy is that the labs need t be drawn right before the next MTX dose. Ashton takes hers on friday so has her labs on a Thursday since we've been doing this the liver functions have been great. Since the MTX takes awhile to start working it's usually preferred that they not miss a dose unless it's completely neccesary. Ashton's MTX took about 2-3 months to really kick in she takes it along with the NSAID Relefan (which she takes daily) .After the MTX kicked in we really started noticing some relief. However she does still have swelling from time to time & has even had a pretty bad flare. But my understanding of this drug is it's not an antiinflammatory but a disease moddifier...which means it slows the progression of the disease threby making it more manageable. I would discuss my concerns with the dr's they should explain to you in term that you can understand what these drugs are about & your concerns should be addressed. (Sometimes I think they lack there )Any other questions feel free to ask..... It's only been a little over a year for us & I am by no means an expert at this I feel like I'm constantly learning & evaluating Ashton's situation. Praying for a cure . Kris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 2, 2000 Report Share Posted May 2, 2000 Hi, How long has it been since McKenzie started taking MTX? It can take quite a while to to find the right dosage and start being effective. It must be pretty bad inflammation. She's had injections into this particular joint before, right? Josh hasn't had joint injections but I've read where others have and they said that sometimes it becomes less effective over time if they're done too frequently into the same joint. I think I also remember hearing that some damage to the joint can occur from repeated cortisone injections. I guess ~again~ it's a matter of the doctor weighing the risks versus benefits for each patient. Wish I could be of more help. Sometimes it's so hard to make these kinds of decisions. Please let us know how it goes, Angel. Aloha, Georgina Mark Beers wrote: > Hi, Kris, > My daughter is also on MTX, but only for a short time now. So far, I have > not seen any real changes. I had asked the questions before about the MTX > masking the problem of JRA. My other questions about MTX is it normal for > the swelling to still be there but not as much pain? We talked to the doctor > today and he wants to do another knee injection and continue the MTX. It was > a hard enough decision to put Kenzie on this drug and now we still have to > put her under for an injection! I don't get it. My husband and I are a > little confused. McKenzie had only been on the metho for three weeks when we > got her first blood work back and her liver tests were high so the doctor > had her skip a dose and repeat blood work a week later. Those tests came > back normal. He wants to lower the dose ( which is already very low) and as > I said do another knee injection. Anyone with some helpful advice would be > great. Thanks, Angel Beers > > Re: Methotrexate > > Hi Judy, > My daughter has been on MTX for alittle over a year now. She started > taking it orally & we just switched to injections a couple weeks ago. She > also takes Folic acid every day that helps to counteract alot of side > efffects that you can experience. For my daughter it was great at first but > as time went on she began having more & more stomach upset along with being > very tired. The nasuea got so bad that we switched to the injections & they > are working out great. MTX does take awhile to actually begin working,about > 2 > months in our case but it has worked really well. You do have to have > regular > monitoring of your blood though to check liver function & your white count > among others things. My daughter goes every 4 weeks for lab work but thatnks > to EMLA cream( a numbing cream RX only) those visits have not been bad. She > had experienced also a few mouth sores but nothing that was out of control. > Hope this answers a few of your questions. I would be glad to answer an > specifics if I could. Just let me know. There are alot of parents on this > board whose children are on MTX. Kris Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2000 Report Share Posted May 26, 2000 na: I found methotrexate made me very tired and draggy, esp. on Mondays since I took them on Sunday nights. Come Mon. a.m., I was worthless and in a huge fog. As the rheumy increased it, the fog got worse. As I reduced, however, I'd feel better earlier in the week than before. I've been off methotrexate since March and doing quite fine, thank you! I can think and have more energy since starting the AP with Minocin, not to mention most importantly, continually decreased pain. Babs RA 8/98, DX 4/99, AP 11/99 200 mg. Minocin 112 mcg. Synthroid 2 mg. Hytrin 10 mg. Lipitor Mestinon Vits. & Misc. Suplmts. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 26, 2000 Report Share Posted May 26, 2000 I so agree with Babs about the MTX. I am off of it now for about 3 weeks and I Feel like a new person. I was always tired and had a constant upset stomach. I can not believe the difference I feel now that I am off. I guess the side effects crept up on me and I thought it was normal to feel cruddy all the time. With the minocin on board now i have hope for the first time in a long time. Patti Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 27, 2000 Report Share Posted May 27, 2000 na, reading your post on Metho, also noted you are on Lipitor. Just wondering if RA patients who take a lot of med. have trouble with cholesterol? I do, my trig. have been 600. Just wondering. Judy in SC RA 42 yrs, Arava, Zocor, Zantac, Cytotec, Minocycline, Limbitrol, DayPro Zoloft. Babs56p@... wrote: > > na: I found methotrexate made me very tired and draggy, esp. on Mondays > since I took them on Sunday nights. Come Mon. a.m., I was worthless and in a > huge fog. As the rheumy increased it, the fog got worse. As I reduced, > however, I'd feel better earlier in the week than before. I've been off > methotrexate since March and doing quite fine, thank you! I can think and > have more energy since starting the AP with Minocin, not to mention most > importantly, continually decreased pain. > > Babs > RA 8/98, DX 4/99, AP 11/99 > 200 mg. Minocin > 112 mcg. Synthroid > 2 mg. Hytrin > 10 mg. Lipitor > Mestinon > Vits. & Misc. Suplmts. > > ------------------------------------------------------------------------ > Accurate impartial advice on everything from laptops to table saws. > 1/4634/0/_/532797/_/959390514/ > ------------------------------------------------------------------------ > > To unsubscribe, email: rheumatic-unsubscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2000 Report Share Posted May 28, 2000 Babs Novo diffenac is just another NSAID, although it can't be too common because people are always asking me what it is. It is a suppository (oh joy!) and you take it at night. It kind of makes you sleepy. I tried to take it in the day but I was so brain-fogged that there was no incoming air traffic for sure!( Don't mind me, it's just code for lost my brain!) So I guess the jist of what you are saying is it took a few weeks. Me and my GP are winging this. She has never done it before but I brought her Dr. Mercola's protocol off the web site and she was impressed. When she gets me in with the local specialist things should improve. I am on 100 mg Minocin MWF. Sorry if I am repeating myself. I also started a bad flare two days before I started and have yet to come out of it. So I am looking for improvemen but I guess it is just too early. Glad to hear you are off the Metho. I guess it is great when it helps but all it did was make me sicker. Thanks for the info. Take Care Lee-Anne Babs56p@... wrote: > Hi Lee-Anne: What is novo diffenac? Anyway, to answer your question, my RA > was actually doing fairly well on methotrexate when I started the Minocin. I > know some others are not as lucky when starting the AP. I was started on > 50mg twice daily for three weeks, then increased to 100mg. twice daily. > Every 4-6 weeks I was decreasing the methotrexate. I only noticed subtle > improvements at first - the first few weeks, unbeknownst to me, I was given > the generic minocycline in error by pharmacy. As soon as I realized this > (when refilling), I screamed foul and was given the Minocin. I noticed a big > difference in inflammation/pain within a couple days and the improvements > continued, gradually but continuous. We all expect, I think, that we will > get this huge immediate relief. That's not the way it is. One day a few > weeks into the Minocin (brand name), I noticed that I was not hauling myself > up the stairs along the rail like a 90-yr. old: I actually walked up it > normally. I realized it after I got there, not when I actually was doing it! > Then other subtle signs like being able to take the cap off a jar without > torture - the improvements sneak up on you so hang in there, it will come! > > Babs > RA 8/98, DX 4/99, AP 11/99 > 200 mg. Minocin > 112 mcg. Synthroid > 2 mg. Hytrin > 10 mg. Lipitor > Mestinon > Vits. & Misc. Suplmts. > > ------------------------------------------------------------------------ > Failed tests, classes skipped, forgotten locker combinations. > Remember the good 'ol days > 1/4053/0/_/532797/_/959458257/ > ------------------------------------------------------------------------ > > To unsubscribe, email: rheumatic-unsubscribeegroups > > ------------------------------------------------------------------------ > > Subject: Re: rheumatic Methotrexate > Date: Sun, 28 May 2000 15:13:37 -0400 > From: fady assaad <fadya@...> > Babs56p@... > References: <c5.5ef8b3a.26607d06@...> > > Dear Babs. > I have only been on Minocin a week and as I was reading your post was > encouraged. Could you tell me how long you took it before you started to feel > some relief? I am on the Minocin, 100mg MWF, 6 1/4 mg prednisone and 100 mg > novo diffenac and sometimes Vioxx. I no longer do DMARDS. > Thanks, > Lee-Anne > > Babs56p@... wrote: > > > na: I found methotrexate made me very tired and draggy, esp. on Mondays > > since I took them on Sunday nights. Come Mon. a.m., I was worthless and in a > > huge fog. As the rheumy increased it, the fog got worse. As I reduced, > > however, I'd feel better earlier in the week than before. I've been off > > methotrexate since March and doing quite fine, thank you! I can think and > > have more energy since starting the AP with Minocin, not to mention most > > importantly, continually decreased pain. > > > > Babs > > RA 8/98, DX 4/99, AP 11/99 > > 200 mg. Minocin > > 112 mcg. Synthroid > > 2 mg. Hytrin > > 10 mg. Lipitor > > Mestinon > > Vits. & Misc. Suplmts. > > > > ------------------------------------------------------------------------ > > Accurate impartial advice on everything from laptops to table saws. > > 1/4634/0/_/532797/_/959390514/ > > ------------------------------------------------------------------------ > > > > To unsubscribe, email: rheumatic-unsubscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 18, 2001 Report Share Posted February 18, 2001 Judy, I would have to agree with you on these pills...the more I read about MTX the more I didn't want to take it...BUT I DO know that some have received relief from them....I weaned myself off prednisone about three months ago and am glad I did...I am just hoping I can get this weight off and get my blood pressure back down...I never had blood pressure problems until the prednisone....as for MTX...it just didn't make sense to me when my RD told me to stop taking it if I got a cold or was around someone with a cold because my immune system was suppressed.....I have a friend with RA who has been treated with MTX for 20 years and has landed in the hospital with pneumonia two or three times (I don't remember which) because he got sick and his immune system couldn't protect him from pneumonia.... I know different things work for different people but as for me...I have no intention of taking MTX again...and as for the rest of the stuff they have wanted to keep me on (sulfasalazine, chloriquim)...I don't want them either...the sulfa gave me headaches and the chlor gave me a ton of gas... Tony rheumatic methotrexate Hi Group, I just wondered if you all know what methotrexate is? It is chemotherapy by pills. It defeats your immune system and brings it down. Did you ever read all the side effects that go along with taking this drug? My DR tried to give it to me and after I read on it, wow, I said gee, I'm not taking this. I was on prednisone for the enlarged heart and as soon as I started the ABX I started weaning myself off and I got off in about 4 months. This is another drug that will destroy us. Here we are taking immune enhancing supplements and eating real healthy diets, and then ruining our bodes with these terrible drugs. ABX's cause yeast but they do not destroy our bones and body functions they are a drug also, but a whole lot safer than methotrexate and prednisone with all the side effects and destruction. Plus they have proven themselves to be our remission with autoimmune diseases. Please forgive me for saying my piece but I cringe every time I read these emails talking about these 2 drugs. "Wellness and blessings to everyone." Judy To unsubscribe, email: rheumatic-unsubscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 19, 2001 Report Share Posted February 19, 2001 Yes, I agree with Judy, my mother was given methotrexate when she had cancer. Didn't do her one bit of good. So I declined when my doctor suggested that drug. The AP has saved my life. (Scleroderma 55 years, AP 3-1/2 years) rheumatic methotrexateHi Group, I just wondered if you all know what methotrexate is? It is chemotherapy by pills. It defeats your immune system and brings it down. Did you ever read all the side effects that go along with taking this drug? My DR tried to give it to me and after I read on it, wow, I said gee, I'm not taking this. I was on prednisone for the enlarged heart and as soon as I started the ABX I started weaning myself off and I got off in about 4 months. This is another drug that will destroy us. Here we are taking immune enhancing supplements and eating real healthy diets, and then ruining our bodes with these terrible drugs. ABX's cause yeast but they do not destroy our bones and body functions they are a drug also, but a whole lot safer than methotrexate and prednisone with all the side effects and destruction. Plus they have proven themselves to be our remission with autoimmune diseases. Please forgive me for saying my piece but I cringe every time I read these emails talking about these 2 drugs. " Wellness and blessings to everyone. " Judy To unsubscribe, email: rheumatic-unsubscribeegroups Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2001 Report Share Posted February 27, 2001 Mike, my fiance injects the MTX himself, and the needle he uses is thinner than the needles for Enbrel. Have you tried that? > Saw some of the discussion on mtx., so thought I'd add my experiance > with it. I've been taking mtx on an increasing amount for almost > seven years. At the present time I take nine 2.5mg. tablets a week > and I have never tolerated it very well. I get slightly nausiated > (sp) and am fatigued the next day. It was much worse when I was > taking it by injection at my drs. office .When she gave them to me > she " jabbed " the needle in and she made the comment that to get the > full needed effect that it HAD to be intrasckeletol (sp). I didn't > tollerate this at all and had to go back to the pill...but taking it > orally isn't as effective as a shot. She also told me that it was to > slow down the progress of the PA and it does control the P to a great > effect but not completely. Just thought I'd add my experiance...Mike > in Ga. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2001 Report Share Posted February 27, 2001 Hi Mike, Geez, my rheumy gives me my injections intermuscular and I can't even feel the injection when it goes into my arm. Maybe its the way your rheumy is giving the shots which is causing the discomfort. Sorry to hear of your problems. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2001 Report Share Posted June 25, 2001 , My daughter Abbie has been on Mtx for about 18 months. She has been on 25 mg sub q since December. She is really doing well, and we are slowly lowering her prednisone. My question to you is two fold. How long have you been on mtx and have you noticed any long term side effects? Thank you, Christy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 25, 2001 Report Share Posted June 25, 2001 hello my daughter tabitha has been on methotrexate for about 10 years and she has never had any side effects from this..thank god..but she takes her folic acid. karen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 30, 2001 Report Share Posted June 30, 2001 Hi Christy, My son Josh has been taking Methotrexate for six years. He started out on 7.5mg and has been taking 15mgs for about two years. I think that's the max for his size, as he weighs just 65 pounds or so. We have not noticed any negative long-term effects. I've always felt that the MTX was actually what kept my son's joints in such good shape. He does have some temporary side effects after each dose, though. He feels fatigued and dizzy. So on the weeks that he takes an oral dose, he waits till right before bedtime. On the weeks when he gets a sub cutaneous injection, he has it in the afternoon and then usually naps afterwards. Take Care, Georgina gazelle34@... wrote: > > , > > My daughter Abbie has been on Mtx for about 18 months. She has been on 25 mg > sub q since December. She is really doing well, and we are slowly lowering > her prednisone. My question to you is two fold. How long have you been on mtx > and have you noticed any long term side effects? > > Thank you, > > Christy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 1, 2001 Report Share Posted August 1, 2001 Hi Christy, My son Josh has been taking Methotrexate for over six years. He started out on 7.5mg and after slowly increasing the dose he's been taking 15mgs weekly steady for about two years, now. I think that's the max for his size, as he weighs just 65 pounds or so and is just 4 feet tall. We haven't noticed any negative side effects. Not yet, anyways. I've always felt that MTX was actually what kept my son's joints in such good shape, despite having persistent JRA. He does have some mild, temporary side effects after each dose. He feels very fatigued and light-headed or dizzy. On the weeks that he takes an oral dose, he waits till right before bedtime. On the weeks when he gets an injection, he usually naps afterwards. How much prednisone is your daughter taking? How much was she on before you started tapering it? How is Abbie doing? Take Care, Georgina gazelle34@... wrote: > > , > > My daughter Abbie has been on Mtx for about 18 months. She has been on 25 mg > sub q since December. She is really doing well, and we are slowly lowering > her prednisone. My question to you is two fold. How long have you been on mtx > and have you noticed any long term side effects? > > Thank you, > > Christy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 2, 2001 Report Share Posted August 2, 2001 As you know with any drugs , they act differently with each person , I have been on MTX since Jan 19th of this year, I have experienced some mouth sores , a little nausea and I still have continuing pain, Dr. has added Arava . and I haven't started taking that as yet, due to Insurance issues , but everything has been straigthened out with that.and I am also experiencing some hair loss , but he upped my Folic Acid to 2 mg , each day instead of 1, hope that this has been some help. daystar --- fionaflame@... wrote: > > > > ===== Be ye therefore followers of God, as dear Children: And walk in love, as Christ also hath loved us, and hath given himself for us as an offering and a sacrafice to God for a sweetsmelling savour. Ephesians 5: 1,2 __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2001 Report Share Posted August 3, 2001 Amy, I've been taking MTX for three years. When I started, it was a small dose in pill form. I was told to eat a large meal before taking the pills. Intitially, I felt like I had the flu the day after the pills. Later, as my dosage increased and I went to injections, I had the same feeling, but, after time noticed that I seemed to be getting used to it. Now, I take 50mg of MTX weekly with 30mg of Arava daily, etc. and find that it takes me two days to get over the sickness. But, this is a very large dose that I take. My doctors were concerned about the amount of Prednisone I was having to take because of flares and bad sinus infections. It was decided that a larger dose of MTX would be better for me. I've had some problems with mouth sores. It sort of comes and goes. I get headaches, nausea, diareha, vomiting, tired for 2-3 days after taking MTX. The flip side is that I have 2-3 really good days and then a few inbetween days to round out my week. I have taken 2mg of Folic Acid to help with side effects, but, my rheumy doesn't believe in it. I've convinced him I need to take at least 1mg every day except my MTX day. This helps with hair loss too. There are days when I get down and feel like I'm sicker from the medications than it's worth. But, then if I really think about it, I can comb my hair, brush my teeth, drive, take care of my kids, etc. So, I've decided that in truth things are much better. I don't ever want to be that bad again. When I'm in a really bad flare, I worry about if I will never feel better again. It is scarey and depressing. I am trying to live my days to the fullest. I'm 36 years old and have been quite ill for 3 years. I was told the other day that I'm as good as I can hope to get. Well, I was upset for awhile, feeling really sorry for myself. Then I think about some people who are worse off than me with terminal illnesses and I begin to count my blessings again. I thank God for this group,. When you are down, scared, lonely and need a place to vent, the group is here for you. Let us know how you are doing. God bless you. Amy Deel Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2001 Report Share Posted August 3, 2001 Amy, I have only been taking MTX for a month now (10mg a week) and so far the only side effect I have experienced is fatigue. However, I am on a low dose. I take it at night after dinner so I can sleep it off. I tried taking it once in the afternoon and it made my head feel real spacey. As far as benfits go I haven't seen any changes but from what I have been told it can take a couple of months before you see any improvement. >>> fionaflame@... 08/02/01 02:26PM >>> Hi All: Could anyone with a few spare minutes send me your thoughts/experience with MTX...good, bad, or indifferent, side effects and all? Amy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 3, 2001 Report Share Posted August 3, 2001 Georgina, Abbie is actually doing very well right now. She is down to 10 mg of prednisone every other day. The doctor wants to be very conservative now, but I honestly saw no side effects this last time it was lowered. It has been almost a month. He wants to leave her here at least 3 months. She has been coming down from 60 mg since February. It has gone very smoothly the whole way this time, and I truly think it is because we have alternated doses (12 mg one day and 15 the next). Now by taking 10 every other day rather than 5 every day, she shocks her system and then teases it the next day. He (the doctor) says that he has had more success this way in getting his patients to start producing it on their own, and thus getting all the way off. He also says, however, that we produce naturally about 5 mg a day. That production stops after extended use of oral steroids. So to get down to 5 mg per day is actually pretty close to normal. He feels that 5 is a great success. As the summer draws to a close I am getting a little skittish. Abbie's flares always come in the fall (mid October to be exact). Does anyone else out there notice anything like that? Glad to hear Josh is doing well. Hope it continues. Christy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 4, 2001 Report Share Posted August 4, 2001 Christy, I too sadden at the prospect of fall coming and along with it for me the flares ... Summer offers for me a pretty none eventful time ... and Fall my worst.. Less sunlight also changes my mood ... so I handle these changes with even less patience . Talk to your doc and see if a boost of some meds. might change a pattern of flare at this time but even a daily dose of predinose didn't deter mine but may have made it more short lived.. . Tree Re: Re: methotrexate Georgina, Abbie is actually doing very well right now. She is down to 10 mg of prednisone every other day. The doctor wants to be very conservative now, but I honestly saw no side effects this last time it was lowered. It has been almost a month. He wants to leave her here at least 3 months. She has been coming down from 60 mg since February. It has gone very smoothly the whole way this time, and I truly think it is because we have alternated doses (12 mg one day and 15 the next). Now by taking 10 every other day rather than 5 every day, she shocks her system and then teases it the next day. He (the doctor) says that he has had more success this way in getting his patients to start producing it on their own, and thus getting all the way off. He also says, however, that we produce naturally about 5 mg a day. That production stops after extended use of oral steroids. So to get down to 5 mg per day is actually pretty close to normal. He feels that 5 is a great success. As the summer draws to a close I am getting a little skittish. Abbie's flares always come in the fall (mid October to be exact). Does anyone else out there notice anything like that? Glad to hear Josh is doing well. Hope it continues. Christy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 6, 2001 Report Share Posted August 6, 2001 I have been on MTX for about 6 years now. Have had PA since the mid 1970's and P since the age of 12 (over 40 years ago). I have gone through many if not all the various NSAIDS and a few other DMARDS and some NIH special studies over the past 20-30 years. MTX is the only drug that really made a noticeable difference in my joints. The damage has been on hold due to MTX. I was on MTX injections at first but they made me very nauseated and unable to drive or work on the treatment day. After various combinations of drugs for the side effects, I switched to the oral version of MTX . I started at 7.5mg and worked up to 20mg and now take 15mg once a week. During flares (yes that still happens) I go to 10mg twice a week. I also take 1mg of folic acid every day except the day I take MTX. I also take 200MG of celebrex twice a day for pain relief. My problems are also like many on this site, hypothyroidism that requires Levoxyl every day. I was on Arava about a year ago as a possible replacement for MTX but my stomach could not handle Arava. Overall MTX has worked out fine for me. I get blood work done every three months, don't drink alcohol and see the Doc on a regular schedule. MTX has made me sunsensitive, so keep the sunblock handy. Overall, based on my personal experience I think MTX is a very proven DMARD. The dose for PA is much smaller than that given for chemotherapy and the chance of liver problems are small if you watch the blood work and alcohol and stay in touch with your doctor. After 6 years I have no concerns about taking MTX. Yes, it is a serious drug that needs to monitored, but given what it has done for me it has been worth the effort. Bob in VA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 8, 2001 Report Share Posted August 8, 2001 In a message dated 08/07/2001 11:47:29 AM Eastern Daylight Time, B66F@... writes: << I get blood work done every three months, don't drink alcohol and see the Doc on a regular schedule. >> Bob - I was happy to read in your post that you've been on MTX fairly long (6 years) with no real ill effects. I've been on 2 yrs. I get blood tests every month, see the rheumy every 4-6 weeks and do not drink. I've had elevated liver enzymes once, but after going off the MTX for 4 weeks, they came back to normal and have stayed normal. Yes, MTX is a scarey drug, but I believe that when properly used and monitored, it can be safe. Thanks for your story - it makes me feel better about taking it, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted August 15, 2001 Report Share Posted August 15, 2001 Hi, Amy, I've been on MTX for 2 years, and have had great success with it. My rheumy also has me on Vioxx and Folic Acid. I notice a lot of fatigue and confusion just after taking the MTX, so I followed the advice of another PA patient on the NET and began taking my med just before bedtime. By the morning, I'm rested and ready to start the day. If I feel a little fatigued the next day, I try to take a short rest when possible. So far, so good! I hope you'll have the same success. Peggy Subject: [ ] methotrexate >Hi All: > >Could anyone with a few spare minutes send me your >thoughts/experience with MTX...good, bad, or indifferent, side >effects and all? I'm getting ready to start this drug and I have >some family members that are really worried about my taking it. I'm >worried about the side effects, but I'm also worried about NOT taking >it and letting this PA continue to munch on my bones and tendons...my >rheumy says he wants to treat aggressively now because damage can't >be stopped once it starts. I did a lot of alternative therapies >before I got diagnosed (because that's all I had), and I'm certainly >going to continue them, but I don't want to eliminate a drug that >could help me just because it is a serious drug. Any info/opinions >would be appreciated....thank you. > >Amy Quote Link to comment Share on other sites More sharing options...
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