Guest guest Posted January 15, 2003 Report Share Posted January 15, 2003 > HI THERE. I WAS ON STEROIDS FOR ABOUT 5 MONTHS WHEN I WAS FIRST DIAGNOSED WITH LUPUS, NOW 25 POUNDS LATER I ONLY TAKE IT WHEN I ABSOLUTELY HAVE TO. THEY CAUSED DIABETES IN MY CASE BUT IT WENT AWAY AS SOON AS I WENT OFF THE MED. I TOO HAVE CHEST PAINS, THEY SAY IT'S INFLAMATION AROUND MY RIB CAGE. I ALSO HAVE ARTHRITIS PRETTY BAD. HAVE YOUR DOCTOR'S TRIED YOU ON PLAQUINIL? OR METHOTREXATE? AFTER THE STEROIDS, PLAQUINIL WAS THE NEXT THING THEY PUT ME ON, THEN THEY ADDED METHOTREXATE. I ALSO TAKE CELEBREX. AND ABOUT 10 OTHER DRUGS (BUT I WON'T BORE YOU WITH THAT) LOL. I HOPE THAT WAS SOME HELP MABEE YOU COULD ASK YOUR DOCTOR ABOUT THOSE 2 MEDS, OF COURSE EVERYONE IS DIFFERENT. I HOPE YOU FEEL BETTER!! YOUR FRIEND, LORI Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 15, 2003 Report Share Posted January 15, 2003 Hi, I think it all depends on the individual. I have been lucky enough to be off prednisone for 8 years. I was diagnosed almost 17 years ago with Lupus Nephritis. Had the joint problems as well at the time. I have stayed for 60mg of prednisone throughout each flare within the first three years. Whenever a flare would pass the doctors tried to get the prednisone to lower dosages, until finally I went down to about 5 mg only. I've stayed on that amount for a while. Whenever I would forget to take the medication I would know by noon, feeling all achy and tired. Then I got pregnant, had a baby and a month or so after the pregnancy I noticed that I no longer got the aches when I took the prednisone late. Spoke with my doctor and we tried to take me off and succeeded. I did not take it between October 1994 and November 2002. That's 8 years. I was just put back on 40 mg prednisone and am being treated with chemo due to the major kidney flare I have been experiencing. I myself try to get off any medication as soon as it is possible, but then again, it isn't always so easy. I just generally do not like medication and take the issue very seriously. Now, if needed I do take the medication as prescribed and hardly ever forget. To help my stomach, I definitely take prednisone with a glass of milk. It's something I didn't do before and now I see the difference. Remember, first of all you need to feel comfortable with the decision on whether to try and get off prednisone (that's if doctors agree it is possible in your case). It is possible, but everyone is different. Good luck Mojo Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2003 Report Share Posted January 16, 2003 Thanks Mojo. It was great to hear something positive for 8 yrs off medication. Did you have any symptoms in the 8 yrs? Did you follow a diet? How are you now? Hope this flare up passes. >From: "Mojo (Joanna)" >Reply-To: LUPIES >To: LUPIES >Subject: Re: Hello. >Date: Wed, 15 Jan 2003 15:43:01 -0500 > >Hi, > >I think it all depends on the individual. I have been lucky enough to be off prednisone for 8 years. I was diagnosed almost 17 years ago with Lupus Nephritis. Had the joint problems as well at the time. I have stayed for 60mg of prednisone throughout each flare within the first three years. Whenever a flare would pass the doctors tried to get the prednisone to lower dosages, until finally I went down to about 5 mg only. I've stayed on that amount for a while. Whenever I would forget to take the medication I would know by noon, feeling all achy and tired. Then I got pregnant, had a baby and a month or so after the pregnancy I noticed that I no longer got the aches when I took the prednisone late. Spoke with my doctor and we tried to take me off and succeeded. I did not take it between October 1994 and November 2002. That's 8 years. I was just put back on 40 mg prednisone and am being treated with chemo due to the major kidney flare I have been experiencing. > >I myself try to get off any medication as soon as it is possible, but then again, it isn't always so easy. I just generally do not like medication and take the issue very seriously. Now, if needed I do take the medication as prescribed and hardly ever forget. To help my stomach, I definitely take prednisone with a glass of milk. It's something I didn't do before and now I see the difference. > >Remember, first of all you need to feel comfortable with the decision on whether to try and get off prednisone (that's if doctors agree it is possible in your case). It is possible, but everyone is different. > >Good luck >Mojo Protect your PC - Click here for McAfee.com VirusScan Online Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2003 Report Share Posted January 16, 2003 Thanks Mojo. It was great to hear something positive for 8 yrs off medication. Did you have any symptoms in the 8 yrs? Did you follow a diet? How are you now? Hope this flare up passes. >From: "Mojo (Joanna)" >Reply-To: LUPIES >To: LUPIES >Subject: Re: Hello. >Date: Wed, 15 Jan 2003 15:43:01 -0500 > >Hi, > >I think it all depends on the individual. I have been lucky enough to be off prednisone for 8 years. I was diagnosed almost 17 years ago with Lupus Nephritis. Had the joint problems as well at the time. I have stayed for 60mg of prednisone throughout each flare within the first three years. Whenever a flare would pass the doctors tried to get the prednisone to lower dosages, until finally I went down to about 5 mg only. I've stayed on that amount for a while. Whenever I would forget to take the medication I would know by noon, feeling all achy and tired. Then I got pregnant, had a baby and a month or so after the pregnancy I noticed that I no longer got the aches when I took the prednisone late. Spoke with my doctor and we tried to take me off and succeeded. I did not take it between October 1994 and November 2002. That's 8 years. I was just put back on 40 mg prednisone and am being treated with chemo due to the major kidney flare I have been experiencing. > >I myself try to get off any medication as soon as it is possible, but then again, it isn't always so easy. I just generally do not like medication and take the issue very seriously. Now, if needed I do take the medication as prescribed and hardly ever forget. To help my stomach, I definitely take prednisone with a glass of milk. It's something I didn't do before and now I see the difference. > >Remember, first of all you need to feel comfortable with the decision on whether to try and get off prednisone (that's if doctors agree it is possible in your case). It is possible, but everyone is different. > >Good luck >Mojo Protect your PC - Click here for McAfee.com VirusScan Online Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 16, 2003 Report Share Posted January 16, 2003 Thanks Mojo. It was great to hear something positive for 8 yrs off medication. Did you have any symptoms in the 8 yrs? Did you follow a diet? How are you now? Hope this flare up passes. >From: "Mojo (Joanna)" >Reply-To: LUPIES >To: LUPIES >Subject: Re: Hello. >Date: Wed, 15 Jan 2003 15:43:01 -0500 > >Hi, > >I think it all depends on the individual. I have been lucky enough to be off prednisone for 8 years. I was diagnosed almost 17 years ago with Lupus Nephritis. Had the joint problems as well at the time. I have stayed for 60mg of prednisone throughout each flare within the first three years. Whenever a flare would pass the doctors tried to get the prednisone to lower dosages, until finally I went down to about 5 mg only. I've stayed on that amount for a while. Whenever I would forget to take the medication I would know by noon, feeling all achy and tired. Then I got pregnant, had a baby and a month or so after the pregnancy I noticed that I no longer got the aches when I took the prednisone late. Spoke with my doctor and we tried to take me off and succeeded. I did not take it between October 1994 and November 2002. That's 8 years. I was just put back on 40 mg prednisone and am being treated with chemo due to the major kidney flare I have been experiencing. > >I myself try to get off any medication as soon as it is possible, but then again, it isn't always so easy. I just generally do not like medication and take the issue very seriously. Now, if needed I do take the medication as prescribed and hardly ever forget. To help my stomach, I definitely take prednisone with a glass of milk. It's something I didn't do before and now I see the difference. > >Remember, first of all you need to feel comfortable with the decision on whether to try and get off prednisone (that's if doctors agree it is possible in your case). It is possible, but everyone is different. > >Good luck >Mojo Protect your PC - Click here for McAfee.com VirusScan Online Quote Link to comment Share on other sites More sharing options...
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