Guest guest Posted May 10, 2002 Report Share Posted May 10, 2002 Hi ! Hey, I also had vague traveling joint pain and eye inflamation. My inflamation is an eye disease called scleritis. It is an inflamation deep in the sclera (whites of the eye). It was really painful. I haven't seen a Rheumatologist yet and am researching the drugs that I think he would most likely prescribe. I'm glad to hear it's working for you--less the few side effects. May I ask your age? I'm 35--36 in 2 months. Sounds like we have a similar story. Was your ANA positive? Hope to hear from you!! Smiles, Jeanne in Ohio > Hi! I'm also new to the group. This is the first time I've ever joined a support group but it seemed like a really good idea. I started on Placquenil, Prednisone and Celebrex about 2 months ago. I was actually referred by my eye doctor to a family practice doctor who then referred me to a Rheumatologist (Rheumy, I think I've seen in some postings ). I have had chronic eye inflammation for some time and after 3 eye doctors who treated it like an infection, only to have it return in a few weeks, this doctor started asking some questions, such as, was I frequently tired, did my joints hurt, etc. I'm really grateful to her for not brushing me off. > > I had been having pain in my hands, wrists and ankles but really started having trouble with my hips and could barely walk if I sat too long at work. My RH factor was negative but sed rate was 50. I'm not really sure what all that means. The rheumy office ran the tests and the doctor just called me back with the results and called in the meds so I haven't gotten too much information. She never said for sure it was RA, really didn't say much of anything. From what I've been able to read, the drugs she's prescribed are for RA but I wasn't sure since the RH factor was neg. I go back to her in another month. > > The meds have made a HUGE difference already. My biggest problems with them are the difficulty sleeping, night sweats and upset stomach. Nothing I can't deal with but since I went on all 3 at once, I'm not sure which is causing what. Any ideas? Is anyone else on Placquenil? I'm hoping the Prednisone is the culprit because from what the dr said, I'm just going to be on it short term. > > I'm still trying to get used to all of this and sometimes it's a little overwhelming and a bit scary. Any words of wisdom would be greatly appreciated. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2002 Report Share Posted May 10, 2002 Hi, Jeanne, It was so nice to hear from you. I just turned 45 a couple of weeks ago. Fortunately, my ANA test was negative. It definitely sounds like we have similar symptoms. Have you had any tests run yet? It sounds like some of these diseases are hard to pin down for some reason. I think I have a lot more reading to do but pretty much everything I've read so far says the same thing. Any good resources you can recommend? in Omaha [ ] Re: Also a new member Hi ! Hey, I also had vague traveling joint pain and eye inflamation. My inflamation is an eye disease called scleritis. It is an inflamation deep in the sclera (whites of the eye). It was really painful. I haven't seen a Rheumatologist yet and am researching the drugs that I think he would most likely prescribe. I'm glad to hear it's working for you--less the few side effects. May I ask your age? I'm 35--36 in 2 months. Sounds like we have a similar story. Was your ANA positive? Hope to hear from you!! Smiles, Jeanne in Ohio > Hi! I'm also new to the group. This is the first time I've ever joined a support group but it seemed like a really good idea. I started on Placquenil, Prednisone and Celebrex about 2 months ago. I was actually referred by my eye doctor to a family practice doctor who then referred me to a Rheumatologist (Rheumy, I think I've seen in some postings ). I have had chronic eye inflammation for some time and after 3 eye doctors who treated it like an infection, only to have it return in a few weeks, this doctor started asking some questions, such as, was I frequently tired, did my joints hurt, etc. I'm really grateful to her for not brushing me off. > > I had been having pain in my hands, wrists and ankles but really started having trouble with my hips and could barely walk if I sat too long at work. My RH factor was negative but sed rate was 50. I'm not really sure what all that means. The rheumy office ran the tests and the doctor just called me back with the results and called in the meds so I haven't gotten too much information. She never said for sure it was RA, really didn't say much of anything. From what I've been able to read, the drugs she's prescribed are for RA but I wasn't sure since the RH factor was neg. I go back to her in another month. > > The meds have made a HUGE difference already. My biggest problems with them are the difficulty sleeping, night sweats and upset stomach. Nothing I can't deal with but since I went on all 3 at once, I'm not sure which is causing what. Any ideas? Is anyone else on Placquenil? I'm hoping the Prednisone is the culprit because from what the dr said, I'm just going to be on it short term. > > I'm still trying to get used to all of this and sometimes it's a little overwhelming and a bit scary. Any words of wisdom would be greatly appreciated. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 10, 2002 Report Share Posted May 10, 2002 Hi, For those of you new to navigating the Rheumatology gambit, there are over 100 types of arthritis and probably a similar number of auto- immune diseases. A lot of these diseases mimic each other and are very hard to really distinguish sometimes. I think many of the treatments are the same though. But some may vary quite a bit in some instances. Definitely work hard with your medical team to figure out a correct diagnosis. Always trust in yourself and what your body is telling you! Good luck to both of you! -Meghan > > Hi! I'm also new to the group. This is the first time I've ever > joined a support group but it seemed like a really good idea. I > started on Placquenil, Prednisone and Celebrex about 2 months ago. I > was actually referred by my eye doctor to a family practice doctor > who then referred me to a Rheumatologist (Rheumy, I think I've seen > in some postings ). I have had chronic eye inflammation for some > time and after 3 eye doctors who treated it like an infection, only > to have it return in a few weeks, this doctor started asking some > questions, such as, was I frequently tired, did my joints hurt, etc. > I'm really grateful to her for not brushing me off. > > > > I had been having pain in my hands, wrists and ankles but really > started having trouble with my hips and could barely walk if I sat > too long at work. My RH factor was negative but sed rate was 50. > I'm not really sure what all that means. The rheumy office ran the > tests and the doctor just called me back with the results and called > in the meds so I haven't gotten too much information. She never said > for sure it was RA, really didn't say much of anything. From what > I've been able to read, the drugs she's prescribed are for RA but I > wasn't sure since the RH factor was neg. I go back to her in another > month. > > > > The meds have made a HUGE difference already. My biggest problems > with them are the difficulty sleeping, night sweats and upset > stomach. Nothing I can't deal with but since I went on all 3 at > once, I'm not sure which is causing what. Any ideas? Is anyone else > on Placquenil? I'm hoping the Prednisone is the culprit because from > what the dr said, I'm just going to be on it short term. > > > > I'm still trying to get used to all of this and sometimes it's a > little overwhelming and a bit scary. Any words of wisdom would be > greatly appreciated. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 11, 2002 Report Share Posted May 11, 2002 Hi , This is a very informed and compassionate group. You've come to the right place for information! When I was diagosed with RA in late January, I was prescribed methotrexate, folic acid and prednisone. Since I was so fearful of taking the methotrexate, I started the folic acid and prednisone 5 days before taking my first dose of methotrexate. My experiences were: the prednisone was a wonder drug. In 4 hours I felt like a different person. I could move, sit, lay down and sleep, no pain! On the other hand, I had very unpleasant sweats and flushing, sometimes hot, sometimes cold. I also lost the abilitity to tell when I was full after eating a meal. Everyone here warned me of weight gain while taking prednisone. It definitely increased my appetite! I took the prednisone from the end of January through April. Towards the end I began having very unpleasant headaches and my eyes began bothering me. I'm glad to say my appetite has returned to normal, my headaches have disappeared and my eyes are back to normal too. I was so concerned I made an appointment with my eye doctor. My eyes were fine, but now he is watching me for glaucoma and cataracts, both possible side effects from these potent medicines so many of us take. I've never suffered the nausea from the methotrexate so many here have complained of. I do take it at night, with a meal, then basically " sleep it off " . And I never miss taking the folic acid. Like you, I am RH negative. My SED rate is also normal as have been my x-rays. The only tests that revealed problems were the C-Reactive protein test (which indicates inflammation) and a bone scan. The bone scan revealed inflammation in my feet, ankles, knees, hands, wrists, and shoulders. My C-Reactive protein was at 32 when first tested. It's gone done to 13 since I started treatment. I don't have any experience with plaquenil. What dosages are you taking of each medicine, and when are you taking them? Hope you are having the wonderful success I have taking the prednisone! Suzanne [ ] Also a new member > Hi! I'm also new to the group. This is the first time I've ever joined a support group but it seemed like a really good idea. I started on Placquenil, Prednisone and Celebrex about 2 months ago. I was actually referred by my eye doctor to a family practice doctor who then referred me to a Rheumatologist (Rheumy, I think I've seen in some postings ). I have had chronic eye inflammation for some time and after 3 eye doctors who treated it like an infection, only to have it return in a few weeks, this doctor started asking some questions, such as, was I frequently tired, did my joints hurt, etc. I'm really grateful to her for not brushing me off. > > I had been having pain in my hands, wrists and ankles but really started having trouble with my hips and could barely walk if I sat too long at work. My RH factor was negative but sed rate was 50. I'm not really sure what all that means. The rheumy office ran the tests and the doctor just called me back with the results and called in the meds so I haven't gotten too much information. She never said for sure it was RA, really didn't say much of anything. From what I've been able to read, the drugs she's prescribed are for RA but I wasn't sure since the RH factor was neg. I go back to her in another month. > > The meds have made a HUGE difference already. My biggest problems with them are the difficulty sleeping, night sweats and upset stomach. Nothing I can't deal with but since I went on all 3 at once, I'm not sure which is causing what. Any ideas? Is anyone else on Placquenil? I'm hoping the Prednisone is the culprit because from what the dr said, I'm just going to be on it short term. > > I'm still trying to get used to all of this and sometimes it's a little overwhelming and a bit scary. Any words of wisdom would be greatly appreciated. > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2002 Report Share Posted May 14, 2002 Hi Suzanne, Thanks for sharing your experience with Prednisone. I'm having the very same problems you had - sometimes hot, sometimes cold. I have a little fan on my desk at work and I'm constantly turning it on and off, in between putting on my sweater! The people around me must think I'm crazy!!!! (I've only shared with a couple of people what's going on). My appetite has also increased. It's very frustrating. I've been assured that will disappear when I quit taking the Predisone. I just hope it's in time to fit into my summer clothes! But it's definitely a small price to pay for taking away the pain. I told my husband it was amazing - I feel like my old self again. It scares me a little to think I'll be going off of it. What if the pain comes back. The plaquenil supposedly takes up to 12 weeks to get into your system so hopefully it will do the trick by the time I come off the prednisone. Did you notice the pain come back when you went off? I'm on Celebrex, 200 mg twice a day and placquenil, 200 mg twice a day and the prednisone 5mg. I was taking the prednisone at night but was having such trouble sleeping, I switched to morning as of today. Hopefully, that will help. I'm not familiar with C-Reactive protein. What is exactly is that and what does that tell the doctor? It's good you aren't having nausea with the methotrexate. It sounds like a lot of people are taking that particular drug. Is it just a matter of personal preference on the doctor's part, or do certain drugs work better for certain symptoms? Thanks again for sharing. Hope you're having a nice, pain-free day! in Omaha Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2002 Report Share Posted May 14, 2002 , At what point did your doctor start you on plaquenil? My doctor is slowly reducing my Prednisone (I started on 40mg and am now on 30mg) but has not started me on Plaquenil yet. I'm not sure how low he wants the Prednisone before he starts the Plaquenil, but I am worried because I keep hearing how long it takes for the Plaquenil to work. I worry that my pain will return before the Plaquenil has a chance to kick in. I don't go back to see him until June 12th. Deb (my diagnosis is Undifferentiated Connective Tissue Disease) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 14, 2002 Report Share Posted May 14, 2002 Deb, My doctor started me on the plaquenil right away, at the same time as the prednisone and celebrex. I've only seen her once so far. I have to go back again on June 7th. I'm on a much lower dose of Prednisone, though. Maybe that's why your doctor hasn't started you on anything else yet. I'm amazed at all the different kinds of treatments and medications everyone seems to be on. I don't know what my exact diagnosis is at this point. Hopefully, I'll find out more when I go in June. Hope you're having a good day. -Omaha From: dtoms Sent: Tuesday, May 14, 2002 11:15 AM Subject: Re: [ ] Also a new member , At what point did your doctor start you on plaquenil? My doctor is slowly reducing my Prednisone (I started on 40mg and am now on 30mg) but has not started me on Plaquenil yet. I'm not sure how low he wants the Prednisone before he starts the Plaquenil, but I am worried because I keep hearing how long it takes for the Plaquenil to work. I worry that my pain will return before the Plaquenil has a chance to kick in. I don't go back to see him until June 12th. Deb (my diagnosis is Undifferentiated Connective Tissue Disease) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 15, 2002 Report Share Posted May 15, 2002 Hi , I work in a small HR Dept. One girl coordinates the hiring process, one girl does benefits, and I do most of the rest. Between us, one is still taking tamoxifen for cancer and has been treated for high blood pressure for years, the other one has very high blood pressure and various stress and irritable bowel problems. When I was diagnosed with RA, it didn't seem like too big a deal in the scheme of things! We do everything by committee (vbg). When I had thyroid surgery, I had made arrangements to go to a certain hospital. When I got back to the office and we discussed it, I ended up calling my doctor and changing hospitals, mainly because of the anesthesiologists each hospital used. A little knowledge is a dangerous thing! So between all our various ailments and our ages, no one ever knows what to expect when they come into our offices, heat, fans, air-conditioning, you name it!! > Thanks for sharing your experience with Prednisone. I'm having the very same problems you had - sometimes hot, sometimes cold. I have a little fan on my desk at work and I'm constantly turning it on and off, in between putting on my sweater! The people around me must think I'm crazy!!!! (I've only shared with a couple of people what's going on). The appetite increase does go away. For me almost immediately. Now if the weight would go as easily. I shared all your same fears and concerns. Didn't want to go off the prednisone, didn't want to take the methotrexate, would the pain come back? For more than 8 weeks, probably closer to 10 or 11 weeks, the prednisone was the main reason I felt better. Then one day, it was almost like an epiphany. I had this amazing sense of well being. I can almost say I " felt " the methotrexate " kick in " . I knew at that point I could start decreasing the prednisone. I started at 15 mg. Dropped to 10 mg. and got stuck there for a number of months. My doctor changed our strategy and I started dropping down 1 mg. at a time. I was ready to stop taking it, I developed miserable headaches the last month I was taking prednisone, and I was tired of wanting to eat everything is sight. After stopping the prednisone, I added back 12.5 mg. of Vioxx, and for the most part, I feel just fine. I have occasional stiffness, some pain, once in a while, just last night my shoulders were painful while trying to sleep. Seem okay now though. It's so much better than before, I don't pay it much attention. But I know what you mean, those first days on prednisone were like a miracle!! > My appetite has also increased. It's very frustrating. I've been assured that will disappear when I quit taking the Predisone. I just hope it's in time to fit into my summer clothes! But it's definitely a small price to pay for taking away the pain. I told my husband it was amazing - I feel like my old self again. It scares me a little to think I'll be going off of it. What if the pain comes back. The plaquenil supposedly takes up to 12 weeks to get into your system so hopefully it will do the trick by the time I come off the prednisone. Did you notice the pain come back when you went off? Good point about taking prednisone in the morning. I, too, took it at night and had a devil of a time sleeping. My doctor laughed when he realized what I had done. He told me it was a diurnal drug, take it in the morning. And, you know, he was right. I did just fine after I changed when I took it! > I'm on Celebrex, 200 mg twice a day and placquenil, 200 mg twice a day and the prednisone 5mg. I was taking the prednisone at night but was having such trouble sleeping, I switched to morning as of today. Hopefully, that will help. C-reactive protein is just another test to gauge whether inflammation is present. It has been the only test I've been given, other than the bone scan, that showed I had something abnormal going on. From what I've heard here, and read in books and on the internet, methotrexate is an " old " drug that is well-tolerated by most and effective against the pain and damage caused by RA. If it doesn't work, then I think physicians move on to other drugs looking for the right combination. > I'm not familiar with C-Reactive protein. What is exactly is that and >what does that tell the doctor? It's good you aren't having nausea with >the methotrexate. It sounds like a lot of people are taking that >particular drug. Is it just a matter of personal preference on the >doctor's part, or do certain drugs work better for certain symptoms? Almost time to head for the gym. Have a good day! Suzanne (in somewhat cooler NW FL) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 4, 2002 Report Share Posted September 4, 2002 In a message dated 9/4/02 5:17:23 AM Eastern Daylight Time, miss_april@... writes: > I also went and joined s site. > I am from TN, I am 33, and while I stay at home, I do some WAHM. > I homeschool the kids and we all could stand to eat better. > April, Welcome to our family...I am sure you will find great support here. Also let me welcome you to the Clubhouse...in the chatroom I am reducingred. When you come into the RS chatroom you will find other folks from Tenn...hope to see you soon. Rae 260/165/140-150??? If it is to be...it is up to me. Quote Link to comment Share on other sites More sharing options...
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