Guest guest Posted April 13, 2000 Report Share Posted April 13, 2000 , It's very simple and I've been taken potassium for many, many years, even before RP as I was an athlete and still get to the gym at least 3 days/week (forcefully with fatigue) because of muscle cramps and I don't particularly care for bananas (highest natural form of potassium). I take Solgar brand (small pills) each is 99mg and take 2 a day. This form is an amino acid complex and there are several others out there. I have found the closest to just being " potassium " without all the fall-la-la, works the best. Sometimes I still wake up in the middle of the night with a major calf cramp and take another one, just to make them go away and thank the Lord knowing that I have RP it's not the joint or cartilage (yet), it's just the muscle. So, bottom line, keep it simple. Potassium is potassium and don't let the dr's make you pay for something else that is basically, just potassium! Just me, Kathleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2000 Report Share Posted April 13, 2000 Hi , I don't know why the change or the additional additive to the potassium, but OTC is only a few $$$. Actually, I have to tell you and I wasn't going to share this because I didn't want to jinx myself, but Dr. Trentham put me on an 8 week treatment of methotrexate along with 1650 mg of Anaprox/day. I have not taken any anaprox for over a week (other than for headache from meth) and I just got my blood work results for sed rate and organ functions .... Can't get much better than 1 for a sed rate with a normal range from 0-20!!!! My primary, not Dr. T, told me to go home and celebrate and have a glass of wine!!!! My liver and kidney functions were also within range even with the meth (but keep in mind I am no longer doing the prednisone). Okay, so there you have it. I didn't want to celebrate on-line when there are soooo many of us out there that suffer soooo much on a daily basis (haven't seen 's post's in a while and hope she is okay), and this is probably temporary, but just yardage toward the goal line. I still have 4 more weeks before I repeat bloods and a follow-up trip to Boston to see Dr. T, so I know I'm not out of the woods, but want to think I am .... I just wanted to share something POSITIVE with everyone! Just me, Kathleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2000 Report Share Posted April 13, 2000 Thanks for your encouragement .. and I know that I'm not supposed to have wine .. but because my liver levels were so normal, the doc said go for it .. I didn't drink the whole bottle and my son and hubby shared one (it was actually champagne) I'm a good girl when I have to be ..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2000 Report Share Posted April 13, 2000 Thanks for your encouragement .. and I know that I'm not supposed to have wine .. but because my liver levels were so normal, the doc said go for it .. I didn't drink the whole bottle and my son and hubby shared one (it was actually champagne) I'm a good girl when I have to be ..... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2000 Report Share Posted April 13, 2000 Kathleen, This is wonderful news!!!!! Can't get much better than that. Don't you be afraid of sharing positive news. It makes me feel great and it give me even greater hope for the rest of us. Have a glass of wine for me. Congratulation!!!!!! All my love C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2000 Report Share Posted April 13, 2000 Kathleen, This is wonderful news!!!!! Can't get much better than that. Don't you be afraid of sharing positive news. It makes me feel great and it give me even greater hope for the rest of us. Have a glass of wine for me. Congratulation!!!!!! All my love C Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2000 Report Share Posted April 13, 2000 here, I think all of this medicine i'm taking is killing off some of my brain sells-cells. I am so forgetful and dumb founded at times. Yes it take Insulin 70/30-18/units every morning but if my sugar is below 70 i dont and sometimes i dont have to take the shot. Re: Fatigue ,Now girl, you know how important it is to check that sugar every day!!!!!!!That very well could be it, but if not, at least that's one thing you canrule out. Are you on meds for this?>>>>>>>>>>>>>>>>>>>>>>>>>>>>>>I think i know what the problem is. I do have diabetes mellitus, but it isbecause of the Prednisone. Sometimes my sugar is normal. There are time itdoes runs low and sometimes it runs a tad bit higher than normal. Hopefullymy thyroid test will come back negative for problems. That didn't evencross my mind. I guess the next time I start feeling fatigued i will checkmy blood sugar. But i am so used to my sugar being normal that I only checkit in the mornings. I dont check it in the evenings all the time like i'msusposed to. When i do check it it is alway normal. I need to get out ofthat habit. I got used to being in the hospital and having a lab tech comein my room doing it for me. hi and welcome. maybe we can come up with answers that our doctors can't Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2000 Report Share Posted April 13, 2000 Kathleen, Is yours OTC or prescribed? I do understand what you're saying and thanks for the input. I have a prescription card and the med only cost me $1.38, so I'm not complaining about the cost. Just trying to figure out why a different one this time. Hope you're OK!!!! Remember we're here if you need us. Again, thanks for the input, >>>>>>>>>>>>>>>>>>>>>>>>>>> , It's very simple and I've been taken potassium for many, many years, even before RP as I was an athlete and still get to the gym at least 3 days/week (forcefully with fatigue) because of muscle cramps and I don't particularly care for bananas (highest natural form of potassium). I take Solgar brand (small pills) each is 99mg and take 2 a day. This form is an amino acid complex and there are several others out there. I have found the closest to just being " potassium " without all the fall-la-la, works the best. Sometimes I still wake up in the middle of the night with a major calf cramp and take another one, just to make them go away and thank the Lord knowing that I have RP it's not the joint or cartilage (yet), it's just the muscle. So, bottom line, keep it simple. Potassium is potassium and don't let the dr's make you pay for something else that is basically, just potassium! Just me, Kathleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2000 Report Share Posted April 13, 2000 Kathleen, You've got to remember one thing here. We all cherish GOOD news about our group!!!! If you are doing good, then SHOUT it to the list!!!! We all need the encouragement and positive things that happen to remember that we are all gonna have that too, soon!!!!!! Don't hold back on the good stuff my friend, we all need to celebrate with you!!!!! Just remember though, if you're still on the methotrexate, don't do the wine. No alcohol while on metho!!!!!! Thanks for not holding back on this one Kathleen and CONGRATS on your great news!!!! >>>>>>>>>>>>>>>>> I don't know why the change or the additional additive to the potassium, but OTC is only a few $$$. Actually, I have to tell you and I wasn't going to share this because I didn't want to jinx myself, but Dr. Trentham put me on an 8 week treatment of methotrexate along with 1650 mg of Anaprox/day. I have not taken any anaprox for over a week (other than for headache from meth) and I just got my blood work results for sed rate and organ functions .... Can't get much better than 1 for a sed rate with a normal range from 0-20!!!! My primary, not Dr. T, told me to go home and celebrate and have a glass of wine!!!! My liver and kidney functions were also within range even with the meth (but keep in mind I am no longer doing the prednisone). Okay, so there you have it. I didn't want to celebrate on-line when there are soooo many of us out there that suffer soooo much on a daily basis (haven't seen 's post's in a while and hope she is okay), and this is probably temporary, but just yardage toward the goal line. I still have 4 more weeks before I repeat bloods and a follow-up trip to Boston to see Dr. T, so I know I'm not out of the woods, but want to think I am ..... I just wanted to share something POSITIVE with everyone! Just me, Kathleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 13, 2000 Report Share Posted April 13, 2000 Kathleen, You've got to remember one thing here. We all cherish GOOD news about our group!!!! If you are doing good, then SHOUT it to the list!!!! We all need the encouragement and positive things that happen to remember that we are all gonna have that too, soon!!!!!! Don't hold back on the good stuff my friend, we all need to celebrate with you!!!!! Just remember though, if you're still on the methotrexate, don't do the wine. No alcohol while on metho!!!!!! Thanks for not holding back on this one Kathleen and CONGRATS on your great news!!!! >>>>>>>>>>>>>>>>> I don't know why the change or the additional additive to the potassium, but OTC is only a few $$$. Actually, I have to tell you and I wasn't going to share this because I didn't want to jinx myself, but Dr. Trentham put me on an 8 week treatment of methotrexate along with 1650 mg of Anaprox/day. I have not taken any anaprox for over a week (other than for headache from meth) and I just got my blood work results for sed rate and organ functions .... Can't get much better than 1 for a sed rate with a normal range from 0-20!!!! My primary, not Dr. T, told me to go home and celebrate and have a glass of wine!!!! My liver and kidney functions were also within range even with the meth (but keep in mind I am no longer doing the prednisone). Okay, so there you have it. I didn't want to celebrate on-line when there are soooo many of us out there that suffer soooo much on a daily basis (haven't seen 's post's in a while and hope she is okay), and this is probably temporary, but just yardage toward the goal line. I still have 4 more weeks before I repeat bloods and a follow-up trip to Boston to see Dr. T, so I know I'm not out of the woods, but want to think I am ..... I just wanted to share something POSITIVE with everyone! Just me, Kathleen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2000 Report Share Posted April 15, 2000 In a message dated 04/15/2000 3:28:17 PM Eastern Daylight Time, katwench@... writes: << Thanks for your words of encouragement ... We hope it continues to go in the right direction ... away ... of course, no one knows how long it will stay away before it comes home for a visit ! Anyone have this experience yet? >> during the course of my disease I went through times when I actually forgot I had it and actually so did my primary doctor. You pray that the good times continue for as long as possible love, hugs and hope Angie Quote Link to comment Share on other sites More sharing options...
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