Guest guest Posted March 30, 2004 Report Share Posted March 30, 2004 : I took Plaquenil for about a year. I had no side effects, but no noticeable benefits, either. I am lucky in that I don't have bad reactions to drugs. Everyone is different. I would suggest that maybe you try it and see how it goes for you. If it helps and you don't suffer the side effects then bingo! you've found something that could relieve some of your symptoms. If not, you can always go off of it. Maybe that's too simplistic. I know that when things were/are bad for me, I'm game to try almost anything. Prednisone can be a bad one. I have been on varying doses for almost three years now. I'm stuck at 2 mg/day and can't seem to get off of it. My doctor really wants me off of it since the long term effects aren't good. The only side effect I had was when I was taking up to 60 mg/day. I cleaned all of my drawers and cabinets! It was great! Good luck to you. gloria Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2004 Report Share Posted March 30, 2004 ----- Original Message ----- From: gloriarex@... Rheumatoid Arthritis Sent: Tuesday, March 30, 2004 4:56 PM Subject: Re: New/Denial The only side effect I had was when I was taking up to 60 mg/day. I cleaned all of my drawers and cabinets! It was great! Thanks for your reply, Gloria. As I research I come to see that I probably do have RA, and my denial is slowly slipping away. I am becoming more willing to take the plaquenil. As a matter of fact, I think I am going to go pick it up in a little while. I am going to have to ask that my prednisone be upped to 60 mg if the ability to clean my house is a side effect!!! ) ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 30, 2004 Report Share Posted March 30, 2004 hellow . if the prednisone gave you a very noticeable repreive , then it probably is RA. I have had painful joints and muscles all my life but the only test ever made for RA was i think in 1999. tested positive, took prednisone and it cleared it up for a while. when i get off of it it flares again. At this time i am weaning off of it again...trying to wean off. Had been on 5mg daily, had a flare with fingers curling and went up to 10, but now weaning back off. Medications, however, effect different people in different ways. meds that work for one may give another bad side effects. we have to experiment to some extent. the ones i note here seem to be the lessor of the evils for me. but it is important to get off of the pred. i take 20mg plaquanil 2xday and it does pretty good; eyes a bit more blurry, but the i'm 75+ and probably have that little growth that old people get... can't thinkof the name right now : )... i do need to go for eye check-up again. also take naproxin for pain and am even cutting down on that. i have several herbal formulas that i have been taking for a couple of months and i am truly a lot better... I got the formulas free on an herb group in groups., and i got the ingredients and made my own so it wasn't as expensive as having to buy them from commercial sources. i do try to be as active as possible..sometimes it is pretty hard, but got to keep the body moving and the mind active. i can exercise when my joints aren't too inflamed. my rhuemie was conerned that my hands..i was too.. were getting to damaged and thought Humera (sp) would help, but i decided against it and wil follow the abov regemin for the time being. don't be frightened.. i think we will always be able to handle what happens. we just take it as it comes and do what we must do to get trough the rough spots. this is a very supportive group and any time you feell ike venting, feel free to do so. love.. grany lee ----- Original Message ----- From: blair.family@... Rheumatoid Arthritis Sent: Monday, March 29, 2004 2:58 PM Subject: New/Denial Hi folks, My name is . I recently signed on to the loop. I was diagnosed with inflammatory arthritis 4 years ago, rheumatoid arthritis last week. I am struggling with not believing that I have this. This doctor didn't even physically examine me. I described my conditions, then he just asked what the last rheumotologist said. The last rheumotologist, 4 years ago, did some blood work that was inconclusive. I did not test positive for rheumotoid factor. I don't have red, warm joints. It just feels like a guessing game to me. I find it hard to take serious medications without having proof that I have this. Four years ago, I refused to take plaquenil because I was afraid of the side effects. I was prescribed it again last week and can't bring myself to take it. Has anyone else gone through this? For those of you who take it, can you tell me your experience with it? Has anyone had eye problems or problems with your immune system not attacking the things it should? How about prednisone? I am on a low dose - 5 mg. Has anyone had side effects with a low dose like that? I am feeling some pretty hefty mood swings right now, but I don't know if that is because I am 41 and perimenopausal, because I just received a diagnosis I am struggling with or because of the prednisone. I appreciate any help you can give me. ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 Thanks, Granny Lee, for the reply. I am slowly coming to realize that I am just in denial and denial isn't going to make the pain go away. The meds, however, will help in that area. I got off my behind and picked up the plaquenil tonight. I'd love to hear about the herbal formula you made up. Is it for inflammation? ) ----- Original Message ----- From: leo Rheumatoid Arthritis Sent: Tuesday, March 30, 2004 6:28 PM Subject: Re: New/Denial hellow . if the prednisone gave you a very noticeable repreive , then it probably is RA. I have had painful joints and muscles all my life but the only test ever made for RA was i think in 1999. tested positive, took prednisone and it cleared it up for a while. when i get off of it it flares again. At this time i am weaning off of it again...trying to wean off. Had been on 5mg daily, had a flare with fingers curling and went up to 10, but now weaning back off. Medications, however, effect different people in different ways. meds that work for one may give another bad side effects. we have to experiment to some extent. the ones i note here seem to be the lessor of the evils for me. but it is important to get off of the pred. i take 20mg plaquanil 2xday and it does pretty good; eyes a bit more blurry, but the i'm 75+ and probably have that little growth that old people get... can't thinkof the name right now : )... i do need to go for eye check-up again. also take naproxin for pain and am even cutting down on that. i have several herbal formulas that i have been taking for a couple of months and i am truly a lot better... I got the formulas free on an herb group in groups., and i got the ingredients and made my own so it wasn't as expensive as having to buy them from commercial sources. i do try to be as active as possible..sometimes it is pretty hard, but got to keep the body moving and the mind active. i can exercise when my joints aren't too inflamed. my rhuemie was conerned that my hands..i was too.. were getting to damaged and thought Humera (sp) would help, but i decided against it and wil follow the abov regemin for the time being. don't be frightened.. i think we will always be able to handle what happens. we just take it as it comes and do what we must do to get trough the rough spots. this is a very supportive group and any time you feell ike venting, feel free to do so. love.. grany lee ----- Original Message ----- From: blair.family@... Rheumatoid Arthritis Sent: Monday, March 29, 2004 2:58 PM Subject: New/Denial Hi folks, My name is . I recently signed on to the loop. I was diagnosed with inflammatory arthritis 4 years ago, rheumatoid arthritis last week. I am struggling with not believing that I have this. This doctor didn't even physically examine me. I described my conditions, then he just asked what the last rheumotologist said. The last rheumotologist, 4 years ago, did some blood work that was inconclusive. I did not test positive for rheumotoid factor. I don't have red, warm joints. It just feels like a guessing game to me. I find it hard to take serious medications without having proof that I have this. Four years ago, I refused to take plaquenil because I was afraid of the side effects. I was prescribed it again last week and can't bring myself to take it. Has anyone else gone through this? For those of you who take it, can you tell me your experience with it? Has anyone had eye problems or problems with your immune system not attacking the things it should? How about prednisone? I am on a low dose - 5 mg. Has anyone had side effects with a low dose like that? I am feeling some pretty hefty mood swings right now, but I don't know if that is because I am 41 and perimenopausal, because I just received a diagnosis I am struggling with or because of the prednisone. I appreciate any help you can give me. ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 --- In Rheumatoid Arthritis , <blair.family@v...> wrote: > Four years ago, I refused to take plaquenil because I was afraid of the side effects. I was prescribed it again last week and can't bring myself to take it. Has anyone else gone through this? For those of you who take it, can you tell me your experience with it? Has anyone had eye problems or problems with your immune system not attacking the things it should? I started taking Plaquenil in the fall, but stopped because of dizziness, nausea, and other side effects. But then I got the idea of starting at a lower dose and gradually working my way up to the recommended 400 mg, and that did the trick. I've been on 400 mg for more than two months, and the side effects disappeared and the benefits have arrived. My joint pain is 75% reduced and the fatigue is diminishing, as well. Eye problems are rare and can be reversed nearly all of the time upon detection (regular eye exams are a must). I'm pleased with the Plaquenil. I also take Vioxx. Sierra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 i got this formula from the files in http:/www./herbal_remedies it is a mail group just like this one and i am using several other formulas found there. i mix my own as that is cheaper. Total Nutrition Formula 1 part Alfalfa Grass Powder 1 part Barley Grass Powder 1 part Wheat Grass Powder 1 part Norwegian Purple Dulse Seaweed Powder 1 part Beet Root Powder 1 part Spinach Leaf Powder 1 part Rosehips Powder 1 part Orange Peel Powder 1 part Lemon Peel Powder 1 part Astagalus Powder 1.5 parts Spirulina Green Algae 1.5 parts Chlorella Broken Cell Algae 5 parts Yeast Flakes 5 parts Yeast Powder NB. Yeast (both the flakes and the powder) must be Non-active Saccharomyces Cerevisiae Nutritional Yeast. Which is safe for patients with Candida Albicans. TOTAL NUTRITION® 100% ORGANIC and WILDHARVESTED VITAMIN and MINERAL WHOLEFOOD SUPPLEMENT - hope this will be of some help to you. love.. granny lee ---- Original Message ----- From: blair.family@... Rheumatoid Arthritis Sent: Tuesday, March 30, 2004 7:07 PM Subject: Re: New/Denial Thanks, Granny Lee, for the reply. I am slowly coming to realize that I am just in denial and denial isn't going to make the pain go away. The meds, however, will help in that area. I got off my behind and picked up the plaquenil tonight. I'd love to hear about the herbal formula you made up. Is it for inflammation? ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 Hi, , I tried Plaquenil and it gave me bad headaches behind my eyes. I did not take it long. It is actually a drug used for malaria but helps a lot of RA folks. Good luck finding some relief, Kay ----- Original Message ----- From: blair.family@... Rheumatoid Arthritis Sent: Monday, March 29, 2004 2:58 PM Subject: New/Denial Hi folks, My name is . I recently signed on to the loop. I was diagnosed with inflammatory arthritis 4 years ago, rheumatoid arthritis last week. I am struggling with not believing that I have this. This doctor didn't even physically examine me. I described my conditions, then he just asked what the last rheumotologist said. The last rheumotologist, 4 years ago, did some blood work that was inconclusive. I did not test positive for rheumotoid factor. I don't have red, warm joints. It just feels like a guessing game to me. I find it hard to take serious medications without having proof that I have this. Four years ago, I refused to take plaquenil because I was afraid of the side effects. I was prescribed it again last week and can't bring myself to take it. Has anyone else gone through this? For those of you who take it, can you tell me your experience with it? Has anyone had eye problems or problems with your immune system not attacking the things it should? How about prednisone? I am on a low dose - 5 mg. Has anyone had side effects with a low dose like that? I am feeling some pretty hefty mood swings right now, but I don't know if that is because I am 41 and perimenopausal, because I just received a diagnosis I am struggling with or because of the prednisone. I appreciate any help you can give me. ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 Thanks for sharing your experience, Sierra. I am looking forward and hoping to experience the relief you described. I finally got off my behind and went and picked up the prescription today. Did you feel the dizziness and nausea right away, after you took the first pill? I took my first one this evening and haven't had any reaction to it. ) ----- Original Message ----- From: snowdrift52003 Rheumatoid Arthritis Sent: Tuesday, March 30, 2004 9:50 PM Subject: Re: New/Denial > Four years ago, I refused to take plaquenil because I was afraid of the side effects. I was prescribed it again last week and can't bring myself to take it. Has anyone else gone through this? For those of you who take it, can you tell me your experience with it? Has anyone had eye problems or problems with your immune system not attacking the things it should? I started taking Plaquenil in the fall, but stopped because of dizziness, nausea, and other side effects. But then I got the idea of starting at a lower dose and gradually working my way up to the recommended 400 mg, and that did the trick. I've been on 400 mg for more than two months, and the side effects disappeared and the benefits have arrived. My joint pain is 75% reduced and the fatigue is diminishing, as well. Eye problems are rare and can be reversed nearly all of the time upon detection (regular eye exams are a must).I'm pleased with the Plaquenil. I also take Vioxx. Sierra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 Hi ,Thanks for sharing your experience with plaquenil. How long did it work foryou before you had to change to something else? Did you experience any ofthe goofy side effects besides the eye problems: nausea, diarrhea, itchyrash, etc.?I was actually diagnosed about 4 years ago, but misunderstood therheumatologist. I thought I didn't have it. She wasn't that great in thearea of explaining things. She was gruff and said very little. I switchedto a new one and he told me that I was diagnosed years ago. Ignorance wasbliss!! I was very unhappy when he told me what I had last week. When Istarted researching RA it scared me and I decided to stop and stay in theday. One day at a time as the saying goes.) ----- Original Message ----- From: "chmikaud" <blair.family@...>Sent: Tuesday, March 30, 2004 9:47 PMSubject: Re: New/Denial> Hi I'm and new to the group. I was diagnosed 13+years ago with> RA. I was on plaquenil for a few years and had no problems. I did> have my eyes checked every six months. The meds for RA are scarey.> I could not take prednisone. I am currently taking Enbrel and> Methotrexate with pretty good results. I am right now having a small> flair in my shoulders and elbows. My arthritis started in my wrist.> Find a doctor who will really listen to you and your concerns. It> really helps to have a good relationship with your doctor. I feel> that I can discuss anything with my RA doctor and she listens and> answers my questions fully. I did not go on the DMARd drugs right> away due to fear of side effects. It is important to get the> disease in check as soon as possible to avoid permenent damage. Good> luck. > > Thanks, Granny Lee, for the reply. I am slowly coming to realize> that I am just in denial and denial isn't going to make the pain go> away. The meds, however, will help in that area. I got off my> behind and picked up the plaquenil tonight.> >> > I'd love to hear about the herbal formula you made up. Is it for> inflammation?> >> > ) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 --- In Rheumatoid Arthritis , <blair.family@v...> wrote: > Did you feel the dizziness and nausea right away, after you took the first pill? I took my first one this evening and haven't had any reaction to it. > > ) I started having side effects after a few days. But from what I've read in groups like this one, most people have little to no problem with Plaquenil. It's the mildest of the DMARDs. Sierra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 31, 2004 Report Share Posted March 31, 2004 --- In Rheumatoid Arthritis , <blair.family@v...> wrote: > I was actually diagnosed about 4 years ago, but misunderstood the > rheumatologist. I thought I didn't have it. She wasn't that great in the > area of explaining things. She was gruff and said very little. I think some of them have a tough time delivering the news. I had to interrupt my first rheumy as he was rambling on and on about the history of Dapsone (med)-- " Why is it that you think I NEED medication? What is my diagnosis? " As a communicator, he did everything wrong--interrupted, didn't respond to important things I said, rambled about topics that were not directly related to my situation, etc. I switched! Seems odd that someone intelligent enough to become a specialist can be lacking basic skills in patient communication. Sierra Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 1, 2004 Report Share Posted April 1, 2004 It really isn't all of these herbs are powdered and i add a heaping tablespoon to a smoothie with an organic raw egg and whip it up and it is good. you can't tell there is raw egg in it. (be sure it is certified organic) I usually put a half dropper of an herbal sweetner called stevia in it and i really like it. Since i have been taking that and a cayenne + garlic + vinegar (ACV) + ginger root and another with organic blackstrap molasses with organic apple cider vinegar, and MSM daily, and have corrected my eating habits, i have really improved. This week i have been able to work in the garden digging up 25 year old boxwood shrubs to make room for my big Rosemary bush and also digging up a brick pathway with its retaining walls to place it in another more pleasing design. also i am weaning off the pred and have not taken any pain pills for three days. i can even stand a bit of bad taste to get to feel this well. I do have pain, my wrists and ankles are not totally cured as yet, but i am not incopacitated like i have been many times in the past 4-5 years. . don't take my word for it.. check out the herb lists and also places like www.webmed and hundreds of places on the net. Check out every resource you can.. do a lot of research before you give up. i may never be free of RA, but i'm a LOT better than i was. I am over 75 but i am not going to quit trying. love.. granny lee ----- Original Message ----- From: sheline smiegest New/Denial That recipe sounds disgusting. How do you drink it?leo <leo@...> wrote: i got this formula from the files inhttp:/www./herbal_remediesit is a mail group just like this one and i am using several other formulasfound there. i mix my own as that is cheaper.Total Nutrition Formula1 part Alfalfa Grass Powder1 part Barley Grass Powder1 part Wheat Grass Powder1 part Norwegian Purple Dulse Seaweed Powder1 part Beet Root Powder1 part Spinach Leaf Powder1 part Rosehips Powder1 part Orange Peel Powder1 part Lemon Peel Powder1 part Astagalus Powder1.5 parts Spirulina Green Algae1.5 parts Chlorella Broken Cell Algae5 parts Yeast Flakes5 parts Yeast PowderNB. Yeast (both the flakes and the powder) must be Non-activeSaccharomyces Cerevisiae Nutritional Yeast. Which is safe forpatients with Candida Albicans.TOTAL NUTRITION®100% ORGANIC and WILDHARVESTEDVITAMIN and MINERAL WHOLEFOOD SUPPLEMENT-hope this will be of some help to you.love.. granny lee Quote Link to comment Share on other sites More sharing options...
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