Guest guest Posted May 22, 2001 Report Share Posted May 22, 2001 DAWN, I THINK ALL OF US ARE ALWAYS SCARED TO START A NEW MED. I WAS ON METHO FOR A YEAR. I WAS ABLE TO DECREASE MY PRED FOR AWHILE, THEN WHEN THEY UPPED THE DOSE OF METHO, I JUST COULDN'T TOLERATE IT. MY DR. SAID I HUNG IN THERE AND WAS A REAL TROOPER. LOL MOST PEOPLE DON'T HAVE THE SIDE EFFECTS THAT I HAD AND I THINK YOU SHOULD AT LEAST TRY IT. I HAD VERY LITTLE NAUSEA. I TOOK IT AT DINNER WITH A FULL STOMACH AND SLEPT MOST OF THE NAUSEA AWAY. LOL I HAD TO START AT A REAL LOW DOSE AND WORK UP SLOWLY. I WAS ALSO ON FOLIC ACID. HELPS WITH THE SIDE EFFECTS. I WAS PUT ON IMURAN AND IT MADE ME SICK TOO. THINK THE NEXT STEP FOR ME IS PLAQUENIL. I KNOW HOW YOU FEEL. JUST HATE PUTTING ALL OF THESE DRUGS INTO MY BODY, BUT REALLY NEED TO GET OFF THE PRED. THAT IS MY GOAL. JUST REMEMBER YOU HAVE TO TAKE SOMETHING TO KEEP THE RP UNDER CONTROL. KNOW THAT YOU HAVE ALL OF US HERE FOR YOU. YOU MAY HAVE NO SIDE EFFECTS AT ALL. (OR AT LEAST MINOR ONES THAT WILL GO AWAY AS SOON AS YOUR BODY ADJUSTS, AND IT DOES) LET ME KNOW HOW IT GOES. SENDING LOTS OF COMFORTING HUGS CLAUDIA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2001 Report Share Posted May 22, 2001 OK EVERYONE HELP!!!!!!!!!!!!!!!!! DR. WANTS ME TO START ON METHOTREXATE, SCARED TO DEATH TO DO IT. SO TALK ME INTO IT OK. HE SAID WITH THE BREATHING PROBLEMS AND NOW THE EYES SWELLING AND TURNING RED, THAT WE NEED SOMTHING DIFFERENT THAN JUST PRED. HE IS KEEPING ME ON PRED FOR NOW, 25 MGS. AND ALSO METHO, 10 MG. SO TELL ME WHAT TO EXPECT. ALSO PUT ME ON FOLIC ACID. I WAS SO HOPING THAT I COULD EVENTUALLY GET OF PRED AND NOT BE ON ANTHING BUT HE SAID IT LOOKS LIKE FOR NOW I WILL HAVE TO STAY ON SOMETHING BE I KEEP HAVING NEW SYMPTOMS OF RP START, CRAZY DISEASE. I STILL WISH WE HAD A MAGIC WAND TO MAKE US ALL BETTER. I AM JUST SO TIRED OF FIGHTING THIS DISEASE SOMETIMES ITS JUST NOT WORTH IT. I KNOW THIS IS JUST A PASSING THING BUT DARN IT I WISH IT WOULD HURRY UP AND GO AWAY. DAWN __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2001 Report Share Posted May 22, 2001 --- Dawn dmorgan26347@...> wrote: > OK EVERYONE > > HELP!!!!!!!!!!!!!!!!! DR. WANTS ME TO START ON > METHOTREXATE, SCARED TO DEATH TO DO IT. SO TALK > ME > INTO IT OK. HE SAID WITH THE BREATHING PROBLEMS > AND > NOW THE EYES SWELLING AND TURNING RED, THAT WE NEED > SOMTHING DIFFERENT THAN JUST PRED. HE IS KEEPING > ME > ON PRED FOR NOW, 25 MGS. AND ALSO METHO, 10 MG. > SO > TELL ME WHAT TO EXPECT. ALSO PUT ME ON FOLIC ACID. > > I WAS SO HOPING THAT I COULD EVENTUALLY GET OF PRED > AND NOT BE ON ANTHING BUT HE SAID IT LOOKS LIKE FOR > NOW I WILL HAVE TO STAY ON SOMETHING BE I KEEP > HAVING > NEW SYMPTOMS OF RP START, CRAZY DISEASE. > > I STILL WISH WE HAD A MAGIC WAND TO MAKE US ALL > BETTER. I AM JUST SO TIRED OF FIGHTING THIS DISEASE > SOMETIMES ITS JUST NOT WORTH IT. I KNOW THIS IS > JUST > A PASSING THING BUT DARN IT I WISH IT WOULD HURRY UP > AND GO AWAY. > > DAWN > > Hi Dawn, I was on MTX for about eight months and it helped more than anything that I have ever been on. (Especially the combo of MTX and Arava) For me, it worked even better than the azathioprine that I am on now. I also took folic acid while on MTX. Unfortunatley, after about seven months I began to get very nauseaus. It worked its way up to being a 24/7 thing. Tried shots and it didn't ease, so had to stop taking it. Try it! Good Luck, Sharon ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2001 Report Share Posted May 22, 2001 hi claudia sure hope you are feeling much better by now. thanks for the reply. i know i have to do something i was just hoping it wouldn't be this. chemo really scares me because my husband had really high doses of it when he had the cancer and i know what it can do, so i guess thats why i am so afraid of it. but i really would like to feel better to. so its a catch 22 situation. how are rich and heather are they back to a healthly happy lifestyle again. sure hope so. you have had enough problems for now.l dawn --- RCColloran@... wrote: > DAWN, I THINK ALL OF US ARE ALWAYS SCARED TO START A > NEW MED. I WAS ON METHO > FOR A YEAR. I WAS ABLE TO DECREASE MY PRED FOR > AWHILE, THEN WHEN THEY UPPED > THE DOSE OF METHO, I JUST COULDN'T TOLERATE IT. MY > DR. SAID I HUNG IN THERE > AND WAS A REAL TROOPER. LOL MOST PEOPLE DON'T HAVE > THE SIDE EFFECTS THAT I > HAD AND I THINK YOU SHOULD AT LEAST TRY IT. I HAD > VERY LITTLE NAUSEA. I > TOOK IT AT DINNER WITH A FULL STOMACH AND SLEPT MOST > OF THE NAUSEA AWAY. LOL > I HAD TO START AT A REAL LOW DOSE AND WORK UP > SLOWLY. I WAS ALSO ON FOLIC > ACID. HELPS WITH THE SIDE EFFECTS. > > I WAS PUT ON IMURAN AND IT MADE ME SICK TOO. THINK > THE NEXT STEP FOR ME IS > PLAQUENIL. > > I KNOW HOW YOU FEEL. JUST HATE PUTTING ALL OF > THESE DRUGS INTO MY BODY, BUT > REALLY NEED TO GET OFF THE PRED. THAT IS MY GOAL. > JUST REMEMBER YOU HAVE TO > TAKE SOMETHING TO KEEP THE RP UNDER CONTROL. > > KNOW THAT YOU HAVE ALL OF US HERE FOR YOU. YOU MAY > HAVE NO SIDE EFFECTS AT > ALL. (OR AT LEAST MINOR ONES THAT WILL GO AWAY AS > SOON AS YOUR BODY ADJUSTS, > AND IT DOES) > > LET ME KNOW HOW IT GOES. > > SENDING LOTS OF COMFORTING HUGS > CLAUDIA > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2001 Report Share Posted May 23, 2001 Hi Dawn I have been taking Methotrexate 20mg for about 2 1/2 years and have no problems with it. I used to feel a bit sickly on the day I took it but since starting Cylcosporin as well my consultant has increased the folic acid to 2 a week and the problem has gone. I hope it helps you and will probaly enable you to reduce your pred eventually. Good luck with it. Anne > >Reply-To: Rpolychondritis >To: Rpolychondritis >Subject: new meds. dawn >Date: Tue, 22 May 2001 17:02:18 -0700 (PDT) > >OK EVERYONE > >HELP!!!!!!!!!!!!!!!!! DR. WANTS ME TO START ON >METHOTREXATE, SCARED TO DEATH TO DO IT. SO TALK ME >INTO IT OK. HE SAID WITH THE BREATHING PROBLEMS AND >NOW THE EYES SWELLING AND TURNING RED, THAT WE NEED >SOMTHING DIFFERENT THAN JUST PRED. HE IS KEEPING ME >ON PRED FOR NOW, 25 MGS. AND ALSO METHO, 10 MG. SO >TELL ME WHAT TO EXPECT. ALSO PUT ME ON FOLIC ACID. >I WAS SO HOPING THAT I COULD EVENTUALLY GET OF PRED >AND NOT BE ON ANTHING BUT HE SAID IT LOOKS LIKE FOR >NOW I WILL HAVE TO STAY ON SOMETHING BE I KEEP HAVING >NEW SYMPTOMS OF RP START, CRAZY DISEASE. > >I STILL WISH WE HAD A MAGIC WAND TO MAKE US ALL >BETTER. I AM JUST SO TIRED OF FIGHTING THIS DISEASE >SOMETIMES ITS JUST NOT WORTH IT. I KNOW THIS IS JUST >A PASSING THING BUT DARN IT I WISH IT WOULD HURRY UP >AND GO AWAY. > >DAWN > > >__________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2001 Report Share Posted May 28, 2001 Hi, so glad you are doing good on meth...I have to make a doc appointment for tomorrow or Wednesday and I " m almost afraid what our next plan is!!!!!. Its weird but I looked through old med bottles and I've been on most everything. The only problem is the doctor didn't explain what each one was suppose to do so if I didn't feel like taking it I didn't. That was at the beginning of this " thing " What shall we call it? The Green Eyed Monster? Our RP...rats ass disease. Fibro...jeeze I don't want to go there. I'm trying to cool here but I'm frustrated today....Sorry. Can I offer a suggestion though. When you post please don't do it in caps. As per internet etiquette...dumb word, caps means your yelling. Picky bitch ya?? Sorry just a damn mood!!!! I'll share the mood with you tomorrow....I hope I didn't offend anyone, my apology. Its a bitch to be me sometimes....Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2001 Report Share Posted May 28, 2001 HI EVERONE WELL I SURVIVED MY FIRST WEEKEND ON METHO, I WAS NOT REALLY SICK, BUT FELT LIKE A MACK TRUCK HAD RUN OVER ME ON SATURDAY AND PART OF SUNDAY, TODAY I AM DOING REALLY GOOD, HOPE THATS A GOOD SIGN, BEST DAY I HAVE HAD IN 3 OR 4 MONTHS, DONT' KNOW HOW IT WILL BE AFTER THE METHO BUILDS UP IN MY SYSTEMS , THAT DOES KIND OF WORRY ME. WELL BE SAFE EVERONE AND HAVE A HAPPY MEMORIAL DAY, DAWN --- Sharon King sisterslk@...> wrote: > > --- Dawn dmorgan26347@...> wrote: > > OK EVERYONE > > > > HELP!!!!!!!!!!!!!!!!! DR. WANTS ME TO START ON > > METHOTREXATE, SCARED TO DEATH TO DO IT. SO TALK > > ME > > INTO IT OK. HE SAID WITH THE BREATHING PROBLEMS > > AND > > NOW THE EYES SWELLING AND TURNING RED, THAT WE > NEED > > SOMTHING DIFFERENT THAN JUST PRED. HE IS KEEPING > > ME > > ON PRED FOR NOW, 25 MGS. AND ALSO METHO, 10 MG. > > SO > > TELL ME WHAT TO EXPECT. ALSO PUT ME ON FOLIC > ACID. > > > > I WAS SO HOPING THAT I COULD EVENTUALLY GET OF > PRED > > AND NOT BE ON ANTHING BUT HE SAID IT LOOKS LIKE > FOR > > NOW I WILL HAVE TO STAY ON SOMETHING BE I KEEP > > HAVING > > NEW SYMPTOMS OF RP START, CRAZY DISEASE. > > > > I STILL WISH WE HAD A MAGIC WAND TO MAKE US ALL > > BETTER. I AM JUST SO TIRED OF FIGHTING THIS > DISEASE > > SOMETIMES ITS JUST NOT WORTH IT. I KNOW THIS IS > > JUST > > A PASSING THING BUT DARN IT I WISH IT WOULD HURRY > UP > > AND GO AWAY. > > > > DAWN > > > > > Hi Dawn, I was on MTX for about eight months and it > helped more than anything that I have ever been on. > (Especially the combo of MTX and Arava) For me, it > worked even better than the azathioprine that I am > on > now. I also took folic acid while on MTX. > Unfortunatley, after about seven months I began to > get > very nauseaus. It worked its way up to being a 24/7 > thing. Tried shots and it didn't ease, so had to > stop > taking it. Try it! Good Luck, Sharon > > ===== > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2001 Report Share Posted May 28, 2001 --- Dawn dmorgan26347@...> wrote: > HI EVERONE > > WELL I SURVIVED MY FIRST WEEKEND ON METHO, I WAS > NOT > REALLY SICK, BUT FELT LIKE A MACK TRUCK HAD RUN > OVER > ME ON SATURDAY AND PART OF SUNDAY, TODAY I AM > DOING > REALLY GOOD, HOPE THATS A GOOD SIGN, BEST DAY I > HAVE HAD IN 3 OR 4 MONTHS, DONT' KNOW HOW IT > WILL BE AFTER THE METHO BUILDS UP IN MY SYSTEMS , > THAT DOES KIND OF WORRY ME. WELL BE SAFE EVERONE > AND HAVE A HAPPY MEMORIAL DAY, > > > DAWN HI Dawn, I'm so happy the MTX didn't make you sick. That feeling of being run over by a Mack is bad enough. Hopefully you will adjust. So glad to hear that you are feeling so well today! That is always good news. Have a great day. Love, Sharon ===== __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 28, 2001 Report Share Posted May 28, 2001 sue, no one ever told me that you could yell on the interenet. cooooool. One thing though is that you must take your meds as your dr. prescribes for them to work at all. And for them to keep up a even level of meds over a time period and to work. So try to do as the doc says and maybe that will help too. Ok. i will keep you posted on the meth. dawn --- grandm4@... wrote: > Hi, so glad you are doing good on meth...I have to > make a doc appointment for > tomorrow or Wednesday and I " m almost afraid what our > next plan is!!!!!. Its > weird but I looked through old med bottles and I've > been on most everything. > The only problem is the doctor didn't explain what > each one was suppose to do > so if I didn't feel like taking it I didn't. That > was at the beginning of > this " thing " What shall we call it? The Green Eyed > Monster? Our RP...rats > ass disease. Fibro...jeeze I don't want to go there. > > I'm trying to cool here but I'm frustrated > today....Sorry. > Can I offer a suggestion though. When you post > please don't do it in caps. As > per internet etiquette...dumb word, caps means your > yelling. Picky bitch > ya?? Sorry just a damn mood!!!! > I'll share the mood with you tomorrow....I hope I > didn't offend anyone, my > apology. Its a bitch to be me sometimes....Sue > > > [Non-text portions of this message have been > removed] > > __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 29, 2001 Report Share Posted May 29, 2001 I deeply apologize if I offended anyone...You are right it was my ignorance at that time as far as meds. I had a crappy weekend, family, and took my frustration out on the people I love....you guys...Please forgive me....Sue Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 30, 2001 Report Share Posted May 30, 2001 In a message dated 05/22/2001 7:06:20 PM Central Daylight Time, dmorgan26347@... writes: << DR. WANTS ME TO START ON METHOTREXATE, SCARED TO DEATH TO DO IT. SO TALK ME INTO IT OK. HE SAID WITH THE BREATHING PROBLEMS AND NOW THE EYES SWELLING AND TURNING RED, THAT WE NEED SOMTHING DIFFERENT THAN JUST PRED. HE IS KEEPING ME >> Dawn, just because I get sick on Metho doesn't mean YOU will. Lots of people take Metho for other diseases besides RP and they have no problems. I just pray that you will be one of those. Maybe I AM just a woos who can't deal with it. Lots of people have no side effects at all, maybe you won't either. You have to do something to improve, maybe this is just what you need. Hey, it's better than IV chemo! And, just maybe, it will work so well that you will actually STOP some of your other meds (like Pred). Remember to ask if you can split the dose between morning and night, altho I didn't have any problems at 10 mg, but if you can split it up it will be even easier to tolerate, and you are still getting the same amount! You'll be fine,know why? BECAUSE I SAID SO! You have had enough and you deserve a break! Hang in there! Love you, Judy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 31, 2001 Report Share Posted May 31, 2001 In a message dated 05/28/2001 1:54:45 PM Central Daylight Time, dmorgan26347@... writes: << I WAS NOT REALLY SICK, BUT FELT LIKE A MACK TRUCK HAD RUN OVER ME ON SATURDAY AND PART OF SUNDAY, >> Welcome to METHO! I'll tell you what everyone tells me " YOU WILL ADJUST! " At least I pray that you do, AND SOON! Hamg in there! Love you! Judy Quote Link to comment Share on other sites More sharing options...
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