Guest guest Posted July 21, 2008 Report Share Posted July 21, 2008 , Everything I have read states that the earliest RA is treated aggressively, the better the outcome is. Just my 2 cents. in PA [ ] Is this how it works? Hey gang! Hope everyone is doing good. I have got some questions for you all. First, both of my wrists hurt. Then a few months ago my left elbow started hurting. Not all the time but just enough to let me know something was up. Now my right elbow is starting to hurt. Is this how RA progresses? Second question, back to the wrists. I have had pain in them for about five years is this when the RA started? As I had elevated SED rates back then. Lastly, my mom called a few days ago and started asking about the plaquenil I was taking. She said that that is pretty heavy duty stuff (she read up on the side effects online) if it's only in my wrists. Seeings that I don't have it bad yet maybe I should just wrap them up. Hahaha! She thinks that because I have this diagnosis, I don't know, maybe I'll start believing I am sicker than I am. I know when she said it that it was nonsense, but as the day wore on it made me start second guessing myself. I started thinking maybe she is right and I was making it worse by treating it too early. What do you guys think? Should I just smile and nod next time she brings it up or what? Thanks everyone for all of your input on everything. This really means a lot to me having someone to talk to. And I am learning more and more by reading all of the posts every day. Soft and squishy hugs. wendy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2008 Report Share Posted July 21, 2008 Thanks . wendy > > , Everything I have read states that the earliest RA is treated aggressively, the better the outcome is. Just my 2 cents. in PA > [ ] Is this how it works? > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2008 Report Share Posted July 21, 2008 Hi ,.....You should start treating RA early to help stop the progression of the disease. I was diagnosed with RA about five years ago, but I've had it a long time. I am now 45yrs old, and now disabled. I can't do much of anything, I'm at home most of the time. I have been on a lot of the RA meds, and not having any luck to get relief. But, I know if I don't take them, I will be much worse. Most meds have some side effects, but you just have to weigh out what's best for you. I do what's best for me, no one knows how you feel. People that don't have a chronic disease, have no idea what your going through. You should get some info for your family on the disease. A good site is www.arthritis.org, they will send you some info in the mail, or you can have them check it out online. There are some pics online too, they might look at them. This disease can cripple, and its not pretty. I know what you go through, I just kind of ignore people now, and do what's best for me. Hope things go well, Tawny Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 21, 2008 Report Share Posted July 21, 2008 That's what I've always read, too. You need to try to nip it in the bud. Sue On Monday, July 21, 2008, at 10:48 PM, McNally wrote: > , Everything I have read states that the earliest RA is treated > aggressively, the better the outcome is. Just my 2 cents. in PA Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2008 Report Share Posted July 22, 2008 > > That's what I've always read, too. You need to try to nip it in the bud. > > Sue Not only that, but Plaquinel is NOT a heavy hitter. It's the lightest hitter in the RA arsenal, and is almost always used in conjunction with something else. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2008 Report Share Posted July 22, 2008 RA has to be treated aggressive from the beginning as others have already said. Put it off and you will see signs of damage to the joints. Now, we would not want that. We want to appear and act normal as long as we can, right? The only reason mom suggested just wrap them, is she is HOPE-ing it's not really RA, she's in denial about your problem. ---- I don't know if one can really know when exactly the RA began, sorry. > > > Hey gang! Hope everyone is doing good. I have got some questions for you > all. First, both of my wrists hurt. Then a few months ago my left elbow > started hurting. Not all the time but just enough to let me know > something was up. Now my right elbow is starting to hurt. Is this how RA > progresses? Second question, back to the wrists. I have had pain in them > for about five years is this when the RA started? As I had elevated SED > rates back then. Lastly, my mom called a few days ago and started asking > about the plaquenil I was taking. She said that that is pretty heavy > duty stuff (she read up on the side effects online) if it's only in my > wrists. Seeings that I don't have it bad yet maybe I should just wrap > them up. Hahaha! She thinks that because I have this diagnosis, I don't > know, maybe I'll start believing I am sicker than I am. I know when she > said it that it was nonsense, but as the day wore on it made me start > second guessing myself. I started thinking maybe she is right and I was > making it worse by treating it too early. What do you guys think? Should > I just smile and nod next time she brings it up or what? > > Thanks everyone for all of your input on everything. This really means a > lot to me having someone to talk to. And I am learning more and more by > reading all of the posts every day. > > Soft and squishy hugs. > > wendy > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2008 Report Share Posted July 22, 2008 Hi and group, yes please push the doctors into testing and treating you for this ASAP. i started with symptons last year this time. it took them till feb to dx me with RA bc they thought it was carpal tunnel. they knew it wasnt but kept on that track until i finally pleaded for blood work. that is when they found something wrong. i am still in pain everyday and still trying to find a solution - i cant help but think if i would have got treatment sooner maybe i would be getting help sooner. hind sight is 20/20. good luck with all this and this group is helpful so dont be afraid to lean on it. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2008 Report Share Posted July 22, 2008 Hi , Well it doesn't seem clear which exact auto immune inflammatory proccess you may have , but certainly getting in treatment to control the inflammation /avoid damage early sounds right. Wishful thinking (and its close cousin denial) NEVER help, although family /friends might  use it in an attempt to  support, thinking it will help to avoid pain for you comes from fear /denial of the unknown mostly. The harder honest 'facing up' road is the best road in the long term. because ' you know where you are.'......you would like people to travel /share with you on that struggle.. Bury wishfull thinking , it does not help!!! best wishes Chris (I speak from experience of a retired doc, friend of RA sufferer UK)  [ ] Is this how it works? Hey gang! Hope everyone is doing good. I have got some questions for you all. First, both of my wrists hurt. Then a few months ago my left elbow started hurting. Not all the time but just enough to let me know something was up. Now my right elbow is starting to hurt. Is this how RA progresses? Second question, back to the wrists. I have had pain in them for about five years is this when the RA started? As I had elevated SED rates back then. Lastly, my mom called a few days ago and started asking about the plaquenil I was taking. She said that that is pretty heavy duty stuff (she read up on the side effects online) if it's only in my wrists. Seeings that I don't have it bad yet maybe I should just wrap them up. Hahaha! She thinks that because I have this diagnosis, I don't know, maybe I'll start believing I am sicker than I am. I know when she said it that it was nonsense, but as the day wore on it made me start second guessing myself. I started thinking maybe she is right and I was making it worse by treating it too early. What do you guys think? Should I just smile and nod next time she brings it up or what? Thanks everyone for all of your input on everything. This really means a lot to me having someone to talk to. And I am learning more and more by reading all of the posts every day. Soft and squishy hugs. wendy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2008 Report Share Posted July 22, 2008 Thanks and group. Good advice as always. My rheumatologist told me I have sero negative RA. I have all of the symptoms but not the positive ra factor to back it up. And yeah, I guess I was trying to talk myself out of having ra! Like that would work! :-) I think we all would be doing it! wendy --- In , Petheram <chris65peth@...> wrote: > > Hi , > Well it doesn't seem clear which exact auto immune inflammatory proccess you may have , but certainly getting in treatment to control the inflammation /avoid damage early sounds right. Wishful thinking (and its close cousin denial) NEVER help, although family /friends might  use it in an attempt to  support, thinking it will help to avoid pain for you comes from fear /denial of the unknown mostly. The harder honest 'facing up' road is the best road in the long term. because ' you know where you are.'......you would like people to travel /share with you on that struggle.. > Bury wishfull thinking , it does not help!!! > best wishes > Chris > (I speak from experience of a retired doc, friend of RA sufferer UK) >  > > > __________________________________________________________ > Not happy with your email address?. > Get the one you really want - millions of new email addresses available now at http://uk.docs./ymail/new.html > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2008 Report Share Posted July 22, 2008 Hi , I am MTX and Humera. IT seems to help my knees and back pain but so far there has been nothing to help my wrist and hands. The Rhu has injected the tendon as well as the joint space, no help. I keep my left wrist wrapped all the time, its the only way I can use it. Still hurs like **** but thats the name of the game I suppose Heidi M On Tue, Jul 22, 2008 at 11:35 AM, Petheram < chris65peth@...> wrote: > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2008 Report Share Posted July 22, 2008 Thanks Heidi. I am glad that you get some relief for your knees and back pain. But I am sad that nothing helps your wrists and hands. This disease really s***s. One good side effect with the plaquenil, with the loss of appetite I have lost 5 pounds! I'll take whatever positive I can get. lol wendy --- In , " Heidi Mendelsohn " <hmendelsohn@...> wrote: > > Hi , > I am MTX and Humera. IT seems to help my knees and back pain but so far > there has been nothing to help my wrist and hands. > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2008 Report Share Posted July 22, 2008 and Group; I kept my hands wrapped up for ten years cause they hurt. I used one of them hand devises for carpal tunnel and it really made it feel better. I don't have carpal tunnel the doctors checked. But it worked .  They hurt now. I feel for you. I am working with my rheumy for the best treatment. Haven't found one yet but I am sure I will. I was diagnosed with RA and Fibro about 5 years ago. I am sure I had Fibro all my adult life. Yes I been dealing with pain my entire adult life.  I don't know how it's suppose to work. But I am hoping something will eventually work. Group owners I was about to leave the Group cause of my talkative personality. I am always getting in trouble for it. But you guys are so kind and the doctor who wrote was so nice. I hope you will still keep me around. It has taken me a long time to learn how the group works and how to put everything in order. But I promise you this I wont mention anything about cancer again. WE have enough to deal with, without worrying about side effects that's not established yet. Everyone feel better Clora Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2008 Report Share Posted July 22, 2008 Hi guys- I have done Embrel, Remicade, Orencia and am now on Rituxan and MTX. I always have my right wrist wrapped- and now have found out that the RA has progressed enough that I need my wrist replaced. I have had RA in ankles, knees hips, hands and wrists but the worst pain was always in the wrist. And now I know why. Tell your mom that you can go into remission- have her pray for that but you need to treat RA as aggressively as possible as soon as possible. good luck with both the RA and your family! Jill On 7/22/08, Heidi Mendelsohn <hmendelsohn@...> wrote: > > Hi , > I am MTX and Humera. IT seems to help my knees and back pain but so far > there has been nothing to help my wrist and hands. The Rhu has injected the > tendon as well as the joint space, no help. I keep my left wrist wrapped > all > the time, its the only way I can use it. Still hurs like **** but thats the > name of the game I suppose > Heidi M > > On Tue, Jul 22, 2008 at 11:35 AM, Petheram < > chris65peth@... <chris65peth%40.co.uk>> wrote: > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2008 Report Share Posted July 22, 2008 Hi Clora: I am happy you are still writing these posts. It is good for you to express yourself, and I know you are hurting like H--- right now. It always feels good to share our ups and downs with this wonderful group. I too, have learned so much about these terrible diseases, and what everyone is going through. It has been an education for me, and I am glad I am not alone fighting this daily battle to be pain free. Sharing does lighten the burden, and everyone here cares, so very much. That is what makes this group of people so amazing. Wishing everyone a better, pain free day. Hugs, Barbara From: Clora <clora4jesus@...> Subject: Re: [ ] Is this how it works? Date: Tuesday, July 22, 2008, 12:21 PM and Group; I kept my hands wrapped up for ten years cause they hurt. I used one of them hand devises for carpal tunnel and it really made it feel better. I don't have carpal tunnel the doctors checked. But it worked .  They hurt now. I feel for you. I am working with my rheumy for the best treatment. Haven't found one yet but I am sure I will. I was diagnosed with RA and Fibro about 5 years ago. I am sure I had Fibro all my adult life. Yes I been dealing with pain my entire adult life.  I don't know how it's suppose to work. But I am hoping something will eventually work. Group owners I was about to leave the Group cause of my talkative personality. I am always getting in trouble for it. But you guys are so kind and the doctor who wrote was so nice. I hope you will still keep me around. It has taken me a long time to learn how the group works and how to put everything in order. But I promise you this I wont mention anything about cancer again. WE have enough to deal with, without worrying about side effects that's not established yet. Everyone feel better Clora Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 22, 2008 Report Share Posted July 22, 2008 Barbara and Group. Thanks Barbara. I agree with you. Learing so much from the group. I am so happy to hear all the different meds and injections we can get for RA.  Talking about it really helps me a lot.  I deleted the rest of the old message. Is this what you want us to do? I am going to finish up my e-mail and than get ready for bed. Today has not been to bad. The loretabs help some. They are for my headaches I get. But they help some of th RA pain. I also talke MTX and Sulfa. Pain free days to everyone Clora  Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2008 Report Share Posted July 24, 2008 Plaquenil is one of the more milder DMARDS I believe. I was on it for three years and didn't have any problems with it. I have more issues with the Sulfasalazine. Plaquenil is usually the first line of defense used for medications. I had to have an eye exam to get a baseline of the retinas before my doctor would allow me to take it, and then had to go every six months. My eyes are still fine. On the Sulfasalazine, it lowers my immune system and I get sick with respiratory infections constantly. I'm on my ninth antibiotic since September now. With the Sulfasalazine, I have to make sure it doesnt lower my blood counts; so I have to get CBC with differentials done constantly. I found the Plaquenil worked fairly well for me, yet I know we are all different:) From: <wendymp@...> Subject: [ ] Is this how it works? Date: Monday, July 21, 2008, 10:42 PM Hey gang! Hope everyone is doing good. I have got some questions for you all. First, both of my wrists hurt. Then a few months ago my left elbow started hurting. Not all the time but just enough to let me know something was up. Now my right elbow is starting to hurt. Is this how RA progresses? Second question, back to the wrists. I have had pain in them for about five years is this when the RA started? As I had elevated SED rates back then. Lastly, my mom called a few days ago and started asking about the plaquenil I was taking. She said that that is pretty heavy duty stuff (she read up on the side effects online) if it's only in my wrists. Seeings that I don't have it bad yet maybe I should just wrap them up. Hahaha! She thinks that because I have this diagnosis, I don't know, maybe I'll start believing I am sicker than I am. I know when she said it that it was nonsense, but as the day wore on it made me start second guessing myself. I started thinking maybe she is right and I was making it worse by treating it too early. What do you guys think? Should I just smile and nod next time she brings it up or what? Thanks everyone for all of your input on everything. This really means a lot to me having someone to talk to. And I am learning more and more by reading all of the posts every day. Soft and squishy hugs. wendy Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2009 Report Share Posted September 15, 2009 My husband`s MS has not progressed in the (almost) five years he`s been on LDN. Apart from being older he`s exactly the same as he was before he started which is good enough for us! He still has fatigue and slight balance and cognitive problems, but nothing new. I think you should give LDN at least 6 months before you worry that it`s not working for you. If you didnt have much disability to begin with then it`s the perfect time to start LDN - hopefully it will protect you from getting any worse. Dont worry! Bev -- In low dose naltrexone , " msilva_3 " <msilva_3@...> wrote: > > Hello again everyone, > > I'm sorry if you may have been asked these questions like a million times before, you'll have to excuse my ignorance since I am still very much a newbie here:) I know that many times you start to feel worse before you may start to feel better but does it range from feeling worse for a few days or can it be as long as a few weeks? Also, does it tend to make the symptoms reoccur in the reverse order that they appeared? Maybe its just me, who knows. I'm probably one of the worlds biggest worriers so I may be back with more questions, but bear with me please. Another thing I wanted to ask was how can I tell if its working for me if I didn't have many symptoms when I started (only 2 wks. ago)? I have this nagging fear that of all the people in the world, I'm going to be one of the few people that LDN is not effective for. A little dramatic I know but I told you I was a worrier. Oh and one more thing and then I'm done for today, I promise. How many here have experienced an actual stop in the progression of their MS? Thanks in advance to you all. Have a great day and God bless! > > Mia > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2009 Report Share Posted September 15, 2009 My husband`s MS has not progressed in the (almost) five years he`s been on LDN. Apart from being older he`s exactly the same as he was before he started which is good enough for us! He still has fatigue and slight balance and cognitive problems, but nothing new. I think you should give LDN at least 6 months before you worry that it`s not working for you. If you didnt have much disability to begin with then it`s the perfect time to start LDN - hopefully it will protect you from getting any worse. Dont worry! Bev -- In low dose naltrexone , " msilva_3 " <msilva_3@...> wrote: > > Hello again everyone, > > I'm sorry if you may have been asked these questions like a million times before, you'll have to excuse my ignorance since I am still very much a newbie here:) I know that many times you start to feel worse before you may start to feel better but does it range from feeling worse for a few days or can it be as long as a few weeks? Also, does it tend to make the symptoms reoccur in the reverse order that they appeared? Maybe its just me, who knows. I'm probably one of the worlds biggest worriers so I may be back with more questions, but bear with me please. Another thing I wanted to ask was how can I tell if its working for me if I didn't have many symptoms when I started (only 2 wks. ago)? I have this nagging fear that of all the people in the world, I'm going to be one of the few people that LDN is not effective for. A little dramatic I know but I told you I was a worrier. Oh and one more thing and then I'm done for today, I promise. How many here have experienced an actual stop in the progression of their MS? Thanks in advance to you all. Have a great day and God bless! > > Mia > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 15, 2009 Report Share Posted September 15, 2009 Hi Mia I don't think you can claim this title of the " world's biggest worrier " for yourself, you will get quite a lot of competition. A lot of us (and our families,no doubt) have had that feeling of being " the worlds biggest worrier " and " hypochondriac " only to be proven that actually there was something wrong with us in the first place, hence we are in this group. I've been on LDN for 8 months now. Has it stopped the progression? Completely? With hindsight this will be answered. At this time I believe it has done. I have occasionally compared diary entries from early on and from a couple of months ago and the way I am feeling today. I have had bouts of doubt, when I had a bad day or week, asking myself, whether I am kidding myself? But no, I am now certain that I'm no worse off, so it's stopped the progression. And with some symptoms I hadn't actually realised that some of my problems were problems and were due to my disease until after a few weeks on LDN those problems had disappeared. But some of that knowledge only came a few weeks into the journey. You say you didn't have many symptoms, great, keep it that way. It's not doing you any harm, take it and don't have huge expectations. The results might be more surprising than you anticipate at the moment. I told myself, why should it not work for me? I am no more extra ordinary than the crowd and LDN works for most. If I was different I might have won the lottery, but I never did. So I'm one of the masses. Good! Lucretia > > Hello again everyone, > > I'm sorry if you may have been asked these questions like a million times before, you'll have to excuse my ignorance since I am still very much a newbie here:) I know that many times you start to feel worse before you may start to feel better but does it range from feeling worse for a few days or can it be as long as a few weeks? Also, does it tend to make the symptoms reoccur in the reverse order that they appeared? Maybe its just me, who knows. I'm probably one of the worlds biggest worriers so I may be back with more questions, but bear with me please. Another thing I wanted to ask was how can I tell if its working for me if I didn't have many symptoms when I started (only 2 wks. ago)? I have this nagging fear that of all the people in the world, I'm going to be one of the few people that LDN is not effective for. A little dramatic I know but I told you I was a worrier. Oh and one more thing and then I'm done for today, I promise. How many here have experienced an actual stop in the progression of their MS? Thanks in advance to you all. Have a great day and God bless! > > Mia > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 16, 2009 Report Share Posted September 16, 2009 Amen! Staying the same is way ahead of the game for me. Larry Quote Link to comment Share on other sites More sharing options...
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