Experience with rheumatoid arthritis
- Thread starter Shari
- Start date
house of cards
New Member
I'm awaiting the replies with you...I suspect I have it as well.
F
flutterbee
Guest
I've been waiting for responses because I know you're looking for real life experiences. I haven't been diagnosis'd with RA, so I don't have any personal experience, but I can tell you that they have made huge strides with medications and treatment. A patient my mom has is severely disabled with RA and his wife said if they had had the treatments 20 years ago that they have now, he wouldn't be in a wheelchair.
There is tons of info on the internet. I believe the biologics (also called TNF inhibitors), such as remicade, humira, etc, are supposed to be pretty helpful.
You can go to the Mayo Clinics website, click on Publications and read studies on RA.
I do want to point out that anyone with RA should also have cardiac monitoring. There is a statistically significant increase in cardiovascular disease with patients with RA vs the rest of the population and it tends to present with atypical or no symptoms (often the first sympton is heart attack or worse, sudden cardiac death) and more severe disease...meaning more blockages and more severe blockages. Not trying to scare anyone, but this disocvery is relatively new (last 5 or 10 years) and has been duplicated in many studies. You can find those at the Mayo Clinic website, too. So, the important thing is to get the inflammatory process under control (cardiovascular disease is itself an inflammatory process).
I'm not trying to send you into a panic. But, it's definitely something you and your doctor should remain cognizant of. If you haven't had an echocardiogram, I would recommend one. Especially if your CRP (C-Reactive Protein - an inflammation marker) is higher than a certain number...I think 3.1, but not sure.
Again, not trying to panic. It's been my experience, though, that so much new information comes out and it's hard for the doctors to keep on top of it all. I believe in being informed.
I hope you're able to get some more real life experience help here. There are probably websites/message boards dedicated to RA.
There is tons of info on the internet. I believe the biologics (also called TNF inhibitors), such as remicade, humira, etc, are supposed to be pretty helpful.
You can go to the Mayo Clinics website, click on Publications and read studies on RA.
I do want to point out that anyone with RA should also have cardiac monitoring. There is a statistically significant increase in cardiovascular disease with patients with RA vs the rest of the population and it tends to present with atypical or no symptoms (often the first sympton is heart attack or worse, sudden cardiac death) and more severe disease...meaning more blockages and more severe blockages. Not trying to scare anyone, but this disocvery is relatively new (last 5 or 10 years) and has been duplicated in many studies. You can find those at the Mayo Clinic website, too. So, the important thing is to get the inflammatory process under control (cardiovascular disease is itself an inflammatory process).
I'm not trying to send you into a panic. But, it's definitely something you and your doctor should remain cognizant of. If you haven't had an echocardiogram, I would recommend one. Especially if your CRP (C-Reactive Protein - an inflammation marker) is higher than a certain number...I think 3.1, but not sure.
Again, not trying to panic. It's been my experience, though, that so much new information comes out and it's hard for the doctors to keep on top of it all. I believe in being informed.
I hope you're able to get some more real life experience help here. There are probably websites/message boards dedicated to RA.
dreamer
New Member
I have RA. It was a long process to get a definite diagnosis..took several years, it began with irregular, atypical symptoms for me. It began on the 14th day after I got typical vaccine boosters for college. I had very mild symptoms before that, but no doctor ever mentioned it before.and even after it flared hard fast and extreme, it still took a few more years before the diagnosis was concrete.
My original rheumetologist strongly believes the vaccines triggered mine, but my newer rheumetologist thinks it is motly genetic.
For a few years I was completely and totally dependant for all my activities of daily living. I could not comb my own hair, brush my teeth, dress or bathe myself walk or anything. Immediately prior to being stricken with this, I was working as a nurses aide in a skilled care nurseing facility full time plus and also in nurseing school, and also lobbying and advocateing for disabled military veterans AND mentally ill children at all levels- local, county state and federal level.
I had several tendons rupture spontaeously due to the intensity of my symptoms. I almost required a feeding tube when it hit my hyoid cartlige in my neck.
I started on NSAIDS only, and they did nothing positive. My pain was intense irretractable and unbearable. Morphne and demerol did not tuch the pain. My joints were so sensitive, as was my skin, it was similar to gout, but far more widespread. Room air current sent me in agony, and I often screamed involuntarily for hours. I barely remember that time, my mind disassociated due to the intensity and long time of such pain.
Sadly my first rheumy was not aggressive with treatment, and I also lost medical insurance when I became too ill to work. Ironically ibuprofen helped me far more than narcotics.
My old rheumy retired and I wound up haveing to find another, my new one is 2+ hours away.but he is VERY aggressive with treatment.
I am now on methotrexate, prednisone, Humira, ibuprofen, folic acid, Omega 3, calcium and vit D. Yes, I now have Cushings. No, I am not being successfully weaned off pred. Yes, the medications contributed to liver problems and also to Metabolic Syndrome-prediabetes.
Yes, I was aware of the risks and possible side effects of the medications before I began the medications. I agreed to the medications anyway. Without the medications, I lived 3 + years unable to walk, move, use my hands or arms, feet or legs AT ALL.....often could not move my head, my hips were usually also involved..as were my shoulders. Becuz my husband is so ill and 2 of my 3 kids are also special needs, they really did not do much to help me or to keep house or anything......and most of the time I spent in my room, in the dark, quiet, going without food, water or being cleaned etc. They stayed far away from me becuz screams would escape involuntarily from me.
Eventually I did begin to regain function, and I used a mobility scooter for awhile-and then a walker, and numerous braces and splints etc. My husband and kids floundered and sunk lower while I was so very ill. For me, the potential side effects of these medications was still a no brainer. I was not alive before these medications.
I was just at my rheumetologist last week. It simply amazes me how I function now. I treasure every single minute of every single day ---the illness has changed me dramatically. ALl my priorities are vastly different than before my illness struck me down.
I have bone loss in all my toes, and in my shoulders. and in some fingers. My fingers have gnarled and twisted some......BUT my joints and tendons have all been functional since I began the coctail I am on now.
Yes, cardiac issues are common, and RA is a systemic illness and can affect any joint or organ in your body.....it can be very serious, when I was at Ronald McDonald House with my son, there was a teen girl there with very serious juvenile RA........her life was in danger.
My mother had RA, but hers did not manifest as young as mine, nor as severe. My difficult child is now already showing signs of it.
I used to go to an online support group at yahoo.....yahoo groups-----there is one for RA. THe people there who moderate are extremely knowledgeable and the people there were all very kind. I would send you a link, but recently my poor ole WebTV is not working with Yahoo at all, so I cannot get there to grab the url to send it to you.
When I was at my rheumy this week....I comented to him that his waiting room surprises me becuz noone in the waiting room looks like there is anything going on with them.......noone seems to be in pain, noone uses braces or splints etc.....this doctor is very aggressive. and you can see it in the waiting room.
I would love to get off the pred.....BUT.....there is no way I could ever ever go back to living daily in the intense pain I was in before. And I do not understand why my original rheumtologist let me become THAT ill and let it continue for so long.
It devestated us financially.....(I was the sole financial support) and it created a horrible mess of our home, becuz I culd not do anythng and could not even make the kids do anything, so the house became so trashed and it went on so long, I still have not caught up....not even close, tho I work hard at it every single day.
BUT it taught me a lot, too. ANd what I learned was helpful in how I view my difficult child.
I'm not quite sure just what it is you want to know? I hope I did not bore you or make you nervous. I do not think most docs let patients reach the level I was at. There simply is no reason for most people to get THAT bad and have it go on THAT long. Altho, the side effects of the medications ARE bad, really bad......but RA itself is also really nasty. The way I look at things now? I was not living before. ANY day that I have had since then has been a gift. Any day I have had with no pain- and I seldom have pain now----has been an extraordinary treasure. So much so I even enjoy all my chores now. LOL, go figure.
I HAPPILY run up and down the stairs to do laundry every day. I LOVE mowing the lawn.
Even when I could talk my kids into combing my hair back then.....even when I could tolerate the brush on my head? They never did it to my satisfaction, and there was nothing I could do about it. Inever thought a person could be so happy to simply comb their own hair. HA! and.....yeesh, before I got sick, all those thigns were part of my job every day....I did all those things for other people. LOL.
My original rheumetologist strongly believes the vaccines triggered mine, but my newer rheumetologist thinks it is motly genetic.
For a few years I was completely and totally dependant for all my activities of daily living. I could not comb my own hair, brush my teeth, dress or bathe myself walk or anything. Immediately prior to being stricken with this, I was working as a nurses aide in a skilled care nurseing facility full time plus and also in nurseing school, and also lobbying and advocateing for disabled military veterans AND mentally ill children at all levels- local, county state and federal level.
I had several tendons rupture spontaeously due to the intensity of my symptoms. I almost required a feeding tube when it hit my hyoid cartlige in my neck.
I started on NSAIDS only, and they did nothing positive. My pain was intense irretractable and unbearable. Morphne and demerol did not tuch the pain. My joints were so sensitive, as was my skin, it was similar to gout, but far more widespread. Room air current sent me in agony, and I often screamed involuntarily for hours. I barely remember that time, my mind disassociated due to the intensity and long time of such pain.
Sadly my first rheumy was not aggressive with treatment, and I also lost medical insurance when I became too ill to work. Ironically ibuprofen helped me far more than narcotics.
My old rheumy retired and I wound up haveing to find another, my new one is 2+ hours away.but he is VERY aggressive with treatment.
I am now on methotrexate, prednisone, Humira, ibuprofen, folic acid, Omega 3, calcium and vit D. Yes, I now have Cushings. No, I am not being successfully weaned off pred. Yes, the medications contributed to liver problems and also to Metabolic Syndrome-prediabetes.
Yes, I was aware of the risks and possible side effects of the medications before I began the medications. I agreed to the medications anyway. Without the medications, I lived 3 + years unable to walk, move, use my hands or arms, feet or legs AT ALL.....often could not move my head, my hips were usually also involved..as were my shoulders. Becuz my husband is so ill and 2 of my 3 kids are also special needs, they really did not do much to help me or to keep house or anything......and most of the time I spent in my room, in the dark, quiet, going without food, water or being cleaned etc. They stayed far away from me becuz screams would escape involuntarily from me.
Eventually I did begin to regain function, and I used a mobility scooter for awhile-and then a walker, and numerous braces and splints etc. My husband and kids floundered and sunk lower while I was so very ill. For me, the potential side effects of these medications was still a no brainer. I was not alive before these medications.
I was just at my rheumetologist last week. It simply amazes me how I function now. I treasure every single minute of every single day ---the illness has changed me dramatically. ALl my priorities are vastly different than before my illness struck me down.
I have bone loss in all my toes, and in my shoulders. and in some fingers. My fingers have gnarled and twisted some......BUT my joints and tendons have all been functional since I began the coctail I am on now.
Yes, cardiac issues are common, and RA is a systemic illness and can affect any joint or organ in your body.....it can be very serious, when I was at Ronald McDonald House with my son, there was a teen girl there with very serious juvenile RA........her life was in danger.
My mother had RA, but hers did not manifest as young as mine, nor as severe. My difficult child is now already showing signs of it.
I used to go to an online support group at yahoo.....yahoo groups-----there is one for RA. THe people there who moderate are extremely knowledgeable and the people there were all very kind. I would send you a link, but recently my poor ole WebTV is not working with Yahoo at all, so I cannot get there to grab the url to send it to you.
When I was at my rheumy this week....I comented to him that his waiting room surprises me becuz noone in the waiting room looks like there is anything going on with them.......noone seems to be in pain, noone uses braces or splints etc.....this doctor is very aggressive. and you can see it in the waiting room.
I would love to get off the pred.....BUT.....there is no way I could ever ever go back to living daily in the intense pain I was in before. And I do not understand why my original rheumtologist let me become THAT ill and let it continue for so long.
It devestated us financially.....(I was the sole financial support) and it created a horrible mess of our home, becuz I culd not do anythng and could not even make the kids do anything, so the house became so trashed and it went on so long, I still have not caught up....not even close, tho I work hard at it every single day.
BUT it taught me a lot, too. ANd what I learned was helpful in how I view my difficult child.
I'm not quite sure just what it is you want to know? I hope I did not bore you or make you nervous. I do not think most docs let patients reach the level I was at. There simply is no reason for most people to get THAT bad and have it go on THAT long. Altho, the side effects of the medications ARE bad, really bad......but RA itself is also really nasty. The way I look at things now? I was not living before. ANY day that I have had since then has been a gift. Any day I have had with no pain- and I seldom have pain now----has been an extraordinary treasure. So much so I even enjoy all my chores now. LOL, go figure.
I HAPPILY run up and down the stairs to do laundry every day. I LOVE mowing the lawn.
Even when I could talk my kids into combing my hair back then.....even when I could tolerate the brush on my head? They never did it to my satisfaction, and there was nothing I could do about it. Inever thought a person could be so happy to simply comb their own hair. HA! and.....yeesh, before I got sick, all those thigns were part of my job every day....I did all those things for other people. LOL.
RA can be a tough diagnosis to live with. there are a LOT more things to help us than there were to help our parents.
NSAIDS (aleve, ibuprofen, orudis are OTC, there are rx ones also) are very helpful because they target the swelling that is causing the pain.
It is important to find a DMARD (disease modifying anti-rheumatic drug) because these actually change the progression of the disease. Plaquenil and methotrexate have been around for a long time. The newer ones are TNF (tumor necrosis factor) inhibitors. These target a certain special protein that causes a lot of the problems. TNF medications can be self-injected (Enbrel, Humira), IV medications - remicade and maybe one more (you go and the medication is given through an IV with saline, or that is how my mom was first given remicade. (PLEASE try as MANY of teh other DMARD medications as poss before trying remicade. Lupus is often caused as a "side effect" of remicade. I know MANY people who have had this happen. NOT all lupus is caused by remicade, but if you take remicade and it causes Lupus, stopping the remicade does NOT stop the lupus - you will have lupus for life, which stinks.)
There are oral medications that I THINK are TNF medications, but they may not be. they are the NEWEST medications to treat RA. Arava, Orencia, and I am sure I am forgetting some. My experiences with Arava are atypical, but my arthritis is atypical also. Please do not assume that you will have the problems that I had 2 weeks ago. That is very rare.
My mom has taken Arava for several years with no problems. Her hands were mis-shapen and incredibly painful and with the arava the major lumps went away and stayed away.
prednisone is often given for RA. I forget what kind of medication (DMARD or not) it is. It is often helpful with the pain.
There are other medications, But that is all I can remember right now.
I am sorry you are diagnosed with RA. There is a LOT of info, including things to print and take to the doctor to help you talk to the doctor about your symptoms, online. A simple google of RA or RA help will get a lot of great info.
NSAIDS (aleve, ibuprofen, orudis are OTC, there are rx ones also) are very helpful because they target the swelling that is causing the pain.
It is important to find a DMARD (disease modifying anti-rheumatic drug) because these actually change the progression of the disease. Plaquenil and methotrexate have been around for a long time. The newer ones are TNF (tumor necrosis factor) inhibitors. These target a certain special protein that causes a lot of the problems. TNF medications can be self-injected (Enbrel, Humira), IV medications - remicade and maybe one more (you go and the medication is given through an IV with saline, or that is how my mom was first given remicade. (PLEASE try as MANY of teh other DMARD medications as poss before trying remicade. Lupus is often caused as a "side effect" of remicade. I know MANY people who have had this happen. NOT all lupus is caused by remicade, but if you take remicade and it causes Lupus, stopping the remicade does NOT stop the lupus - you will have lupus for life, which stinks.)
There are oral medications that I THINK are TNF medications, but they may not be. they are the NEWEST medications to treat RA. Arava, Orencia, and I am sure I am forgetting some. My experiences with Arava are atypical, but my arthritis is atypical also. Please do not assume that you will have the problems that I had 2 weeks ago. That is very rare.
My mom has taken Arava for several years with no problems. Her hands were mis-shapen and incredibly painful and with the arava the major lumps went away and stayed away.
prednisone is often given for RA. I forget what kind of medication (DMARD or not) it is. It is often helpful with the pain.
There are other medications, But that is all I can remember right now.
I am sorry you are diagnosed with RA. There is a LOT of info, including things to print and take to the doctor to help you talk to the doctor about your symptoms, online. A simple google of RA or RA help will get a lot of great info.
Shari
IsItFridayYet?
Thank you all.
I was just looking for real live people living with this, because I know its not always as dire as a lot of the stories you read on the net. lol
I am fairly lucky because we stumbled onto mine. After dad died last year and my sinus surgery this year and the failure after that to recoup, I went back to my old immunologist and he put lots of little pieces together, ran some blood work, and walla Metabolic syndrome and RA. I have been helped A LOT by the diabetic diet, I went from taking 12-16 ibuprofen a day to rarely any, and I have more energy again, so I'm hopeful that the progression will be slow, but as for right now, I'm not otherwise "treating" the RA, and with what research I've had time to do, I think I may be needing to.
My c-reactive protein is high, but waiting on further testing until my next appointment - after I've done a good 6 months on the "diabetic" diet to see what it is then. My dad probably had this, too, and him passing suddenly is what made thing "click" with my doctor. My brother hurts all the time, too, like I did, but his was worse (he's also a lot older). I'm going to call him and tell him about this. Maybe something will "click" with his doctor, too, from this.
It makes sense. All my life, like Dreamer, I've torn tendons and struggled with various forms on fasciatis, and once I get an injury, it takes FOREVER for it to truly heal and stop swelling - at one point they thought I may have RSD (where your body THINKS you are still injured but aren't - more of a nerve malfunction). Its never been debilitating, but since I've been lucky enough to find this before its truly a problem, I hope to be proactive enough to prevent that from happening.
I think my next appointment with my doctor isn't until January, but I'll be discussing treatments with him at that time.
Thanks.
I was just looking for real live people living with this, because I know its not always as dire as a lot of the stories you read on the net. lol
I am fairly lucky because we stumbled onto mine. After dad died last year and my sinus surgery this year and the failure after that to recoup, I went back to my old immunologist and he put lots of little pieces together, ran some blood work, and walla Metabolic syndrome and RA. I have been helped A LOT by the diabetic diet, I went from taking 12-16 ibuprofen a day to rarely any, and I have more energy again, so I'm hopeful that the progression will be slow, but as for right now, I'm not otherwise "treating" the RA, and with what research I've had time to do, I think I may be needing to.
My c-reactive protein is high, but waiting on further testing until my next appointment - after I've done a good 6 months on the "diabetic" diet to see what it is then. My dad probably had this, too, and him passing suddenly is what made thing "click" with my doctor. My brother hurts all the time, too, like I did, but his was worse (he's also a lot older). I'm going to call him and tell him about this. Maybe something will "click" with his doctor, too, from this.
It makes sense. All my life, like Dreamer, I've torn tendons and struggled with various forms on fasciatis, and once I get an injury, it takes FOREVER for it to truly heal and stop swelling - at one point they thought I may have RSD (where your body THINKS you are still injured but aren't - more of a nerve malfunction). Its never been debilitating, but since I've been lucky enough to find this before its truly a problem, I hope to be proactive enough to prevent that from happening.
I think my next appointment with my doctor isn't until January, but I'll be discussing treatments with him at that time.
Thanks.
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Shari,
This is the PERFECT time to be diagnosis'd. It is not terribly bad, diet can help a lot, so can exercise. You have plenty of time to really LOOK into medications and all the new things. I really recommend looking around the Arthritis Foundation Website, they are very helpful.
This is the PERFECT time to be diagnosis'd. It is not terribly bad, diet can help a lot, so can exercise. You have plenty of time to really LOOK into medications and all the new things. I really recommend looking around the Arthritis Foundation Website, they are very helpful.
K
Kjs
Guest
I do not personally have RA, but my mother did. I remember her limping. I remember her hands all swollen up. She would get cortisone shots in her joints.
She liked the whirlpool and swimming (floating around) in a warm pool.
When I was 14 she was in a wheel chair. She had her hips replaced. Within one week we walked around the block.
She was taking asprin, like 16 a day at one point. Then she developed bleeding ulcers. Then she took motrin / upset stomach. She took ascriptin (sp?) do they still sell that? Eventually she had a prescription for tylenol #4.
In her younger years the cortisone shots seemed to really help her. When I say younger years - I mean when i was a teen ager. She was 40 when she had me. Wasn't until late 60's or early 70's when she had more difficulty.
Hot packs (the ones you put in the microwave), whirlpool, heating pad. She liked all of that.
I hope you feel better.
She liked the whirlpool and swimming (floating around) in a warm pool.
When I was 14 she was in a wheel chair. She had her hips replaced. Within one week we walked around the block.
She was taking asprin, like 16 a day at one point. Then she developed bleeding ulcers. Then she took motrin / upset stomach. She took ascriptin (sp?) do they still sell that? Eventually she had a prescription for tylenol #4.
In her younger years the cortisone shots seemed to really help her. When I say younger years - I mean when i was a teen ager. She was 40 when she had me. Wasn't until late 60's or early 70's when she had more difficulty.
Hot packs (the ones you put in the microwave), whirlpool, heating pad. She liked all of that.
I hope you feel better.
dreamer
New Member
Fresh ginger. It is a nice antiinflammatory. Since March I have been trying to ue some everyday in some way or another.
I gave up wheat for 6 weeks, I wish I could say it helped. Dairy seems to aggravate mine more than wheat. Yes, niteshades do make some people worse. So does red meat.
I also seem to notice worsening of symptoms in spring and autumn. And dureing stormy type weather. Maybe there is a barometric pressure issue related.....and I keep wondering if maybe I do have seasonal allergies that manifest in worsening of my RA. (I never had typical allergy problems with anything)
The thing about it is that even if you have no pain, you might still have the internal deterioratin going on. And yes the c-reactive level indicate that. Other times, I have had the pain and swelling but not necessarily any damage progressing. Even more strange, I can have massive swelling and very little pain, or major pain with no outwardly visible swelling.
I also kept hearing before my diagnosis that it is symmetrical, afflicts the same joints on both sides of the body. Mine is not symmetrical at all, never has been, and one day my right wrist might be a swollen unuseable mess, and 2 days later it might move to my left ankle. Or one day it might be in my right big toe and my right elbow.
Before the medications I am now on, I also had 2 nodules. They faded away on medications, and no new ones have come up.
I have been lucky, the methotrexate did make my hair fall out, but.I had none of the other side effects many people complain about. My prednisone does is now low, but, while we keep trying to further reduce it, we have had no luck doing so for over a year now, no matter how slow we try to do it. I expected to pick up every bug-virus etc the kids brought home, but, to my surprise, I don't. Altho the medications do make healing be very slow. If I nick my leg dureing shaving, it can take months to heal.
I gave up wheat for 6 weeks, I wish I could say it helped. Dairy seems to aggravate mine more than wheat. Yes, niteshades do make some people worse. So does red meat.
I also seem to notice worsening of symptoms in spring and autumn. And dureing stormy type weather. Maybe there is a barometric pressure issue related.....and I keep wondering if maybe I do have seasonal allergies that manifest in worsening of my RA. (I never had typical allergy problems with anything)
The thing about it is that even if you have no pain, you might still have the internal deterioratin going on. And yes the c-reactive level indicate that. Other times, I have had the pain and swelling but not necessarily any damage progressing. Even more strange, I can have massive swelling and very little pain, or major pain with no outwardly visible swelling.
I also kept hearing before my diagnosis that it is symmetrical, afflicts the same joints on both sides of the body. Mine is not symmetrical at all, never has been, and one day my right wrist might be a swollen unuseable mess, and 2 days later it might move to my left ankle. Or one day it might be in my right big toe and my right elbow.
Before the medications I am now on, I also had 2 nodules. They faded away on medications, and no new ones have come up.
I have been lucky, the methotrexate did make my hair fall out, but.I had none of the other side effects many people complain about. My prednisone does is now low, but, while we keep trying to further reduce it, we have had no luck doing so for over a year now, no matter how slow we try to do it. I expected to pick up every bug-virus etc the kids brought home, but, to my surprise, I don't. Altho the medications do make healing be very slow. If I nick my leg dureing shaving, it can take months to heal.
