Guest guest Posted January 9, 2001 Report Share Posted January 9, 2001 Hi , I am 54 and will be hitting 55 next month. I had P surface in 1976 and was diagnosed 6 years ago with Psoriatic Arthritis. I think it was always PA, but misdiagnosed. Well, I was very active until a few years ago. I use to ride horse, mortorcycles, bowl, skate, basketball, softball, etc. But now I can do none of it. Do you ride in competition or just for pleasure? I just rode for pleasure at my girlfriends. We couldn't afford a horse. Anyway, do what you feel like doing. Don't quit unless the pain is unbearable. You will begin to slow up in doing things. The fatigue is one of the things that got to me. I just couldn't keep on doing the things I loved. Ahhh rainy days make me hurt like thunder. Snowy days too. Depression plays havoc with me on dark days. I love a rain storm, but my mood is getting worse each year...depression is hard to fight. I am on Naproxen right now for the PA. I also take Evening Primrose Oil. It took two months to kick in...but when it did my pain was less and less. Most days I notice very little pain now. I can tell when I haven't had the EPO. As to staying on the meds...well, if you don't and your joints flare up...it will be like starting over and will take longer to relieve the pain. My advice is to keep taking them as long as the doc. recommends it. Where are you located? We are in Mich...on 40 acres in the middle of an Amish community.... That is my opinion for what it's worth. Donna in Michigan Virginia <vgriff@...> wrote: Hi, to introduce myself, let me say that I am a 57 year old gal who woke up the day after Thanksgiving 2000 with a severely swollen, hot and hurting left ankle. Went to GP two days later, had bone scan and blood work in the next two weeks (during which time I ran a fever around 100 degrees and had both elbows, knees and ankles and my poor aching neck go balistic, a new joint about every two days!). GP put me on Celebrex which didn't do much for the severe pain. I staggered around the farm feeding and carrying water to horses and goats and to work where I teach school. After three weeks I saw an internist who after seeing my bloodwork (no RA factor, elevated sedrate) and my various spots of creeping crud and some new pustular looking things dxed me with psoriatic arthritis. He put me on indocin which really helped with the pain and inflamation but got my stomach about two weeks later. Then put me on Vioxx. My question is this. I seem to be getting better. I hate to take medicine (like have an phobia about it.) Can I just take anti-inflammatories when I need them and see if I get better. Or do I have to stay on the dang things indefinitely. They make me depressed. My bad days for pain and swelling are the rainy ones. Other days I just tire easily and have nagging but bearable pain. Other question is about lifestyle. I have been very physically active (have a farm, ride horses.) Lately I haven't been able to ride, just struggling to survive and am having some trouble seeing how all this is going to play out. Riding is a contact sport. Lots of jarring and quick reflexes needed. How much have you had to give up in the way of a physical life. Just wondering. Took a lot of courage to ask this! Any insight into the course of this disease will be much appreciated. Down but not for the count, Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2001 Report Share Posted January 10, 2001 Hi , It's probably all over the map, and depends on individual circumstances, not only with regard to the severeness of the disease itself, but also on what you like to do physically. For something as physical as riding a horse, I would assume you need good healthy feet, ankles, legs, and spine. Unfortunately, that covers a lot of the areas that frequently get hit by PA as you've already found out. If you really enjoy riding, you should probably pursue very aggressive treatment for the PA, and be willing to take proportionately greater risks with your treatment (ie; higher doses than normal, experimental or more dangerous drugs, etc). In my case, I've always led a pretty sedentary life in my adult years. About the only thing I miss is going on day hikes in the mountains, and being able to ride a bicycle, but I never was particularly addicted to either of them, so don't feel like I've had to give up a lot. What *would* cause me concern, is if my fingers or eyes started to go. I've been programming computers most of my life, and if I couldn't use a computer keyboard, I would not only be out of a job, but wouldn't be able to participate in my favorite hobby which also involves computers. I'd be in much the same boat as the professional guitarist who posted earlier, that is liable to loose his livelyhood if something can't be done about his fingers. So far, I've had one or two flare up, but they never became deformed to the point where I can't use them, and the soreness eventually goes away. I could do my job even if I were in a wheelchair, and I know of at least one programmer who is. So you see, it all depends on your perspective. These are only my opinions, and I'm sure you'll get different ones for every person who replies. Good Luck, and (unfortunately) welcome to the club... -- Ron > Hi, to introduce myself, let me say that I am a 57 year old gal who > woke up the day after Thanksgiving 2000 with a severely swollen, hot > and hurting left ankle. Went to GP two days later, had bone scan and > blood work in the next two weeks (during which time I ran a fever > around 100 degrees and had both elbows, knees and ankles and my poor > aching neck go balistic, a new joint about every two days!). GP put > me on Celebrex which didn't do much for the severe pain. I staggered > around the farm feeding and carrying water to horses and goats and to > work where I teach school. After three weeks I saw an internist who > after seeing my bloodwork (no RA factor, elevated sedrate) and my > various spots of creeping crud and some new pustular looking things > dxed me with psoriatic arthritis. He put me on indocin which really > helped with the pain and inflamation but got my stomach about two > weeks later. Then put me on Vioxx. > > My question is this. I seem to be getting better. I hate to take > medicine (like have an phobia about it.) Can I just take anti- > inflammatories when I need them and see if I get better. Or do I have > to stay on the dang things indefinitely. They make me depressed. My > bad days for pain and swelling are the rainy ones. Other days I just > tire easily and have nagging but bearable pain. Other question is > about lifestyle. I have been very physically active (have a farm, > ride horses.) Lately I haven't been able to ride, just struggling to > survive and am having some trouble seeing how all this is going to > play out. Riding is a contact sport. Lots of jarring and quick > reflexes needed. How much have you had to give up in the way of a > physical life. Just wondering. Took a lot of courage to ask this! Any > insight into the course of this disease will be much appreciated. > > Down but not for the count, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2001 Report Share Posted January 10, 2001 Dont give up the stuff you enjoy as long as there is any way to keep it going. I enjoy sport flying but it requires me to swivel my head all around in order to keep track of where the ground is and PS in my neck severly restricted its range of motion. My doctors told me that there was nothing that could be done. Surprisingly, I went to a Chiropractor who busted my neck loose and solved the problem. The problem I have now is the lack of energy and the drain from constant pain but I still fly as often as I can. Hang in there!! > Hi, to introduce myself, let me say that I am a 57 year old gal who > woke up the day after Thanksgiving 2000 with a severely swollen, hot > and hurting left ankle. Went to GP two days later, had bone scan and > blood work in the next two weeks (during which time I ran a fever > around 100 degrees and had both elbows, knees and ankles and my poor > aching neck go balistic, a new joint about every two days!). GP put > me on Celebrex which didn't do much for the severe pain. I staggered > around the farm feeding and carrying water to horses and goats and to > work where I teach school. After three weeks I saw an internist who > after seeing my bloodwork (no RA factor, elevated sedrate) and my > various spots of creeping crud and some new pustular looking things > dxed me with psoriatic arthritis. He put me on indocin which really > helped with the pain and inflamation but got my stomach about two > weeks later. Then put me on Vioxx. > > My question is this. I seem to be getting better. I hate to take > medicine (like have an phobia about it.) Can I just take anti- > inflammatories when I need them and see if I get better. Or do I have > to stay on the dang things indefinitely. They make me depressed. My > bad days for pain and swelling are the rainy ones. Other days I just > tire easily and have nagging but bearable pain. Other question is > about lifestyle. I have been very physically active (have a farm, > ride horses.) Lately I haven't been able to ride, just struggling to > survive and am having some trouble seeing how all this is going to > play out. Riding is a contact sport. Lots of jarring and quick > reflexes needed. How much have you had to give up in the way of a > physical life. Just wondering. Took a lot of courage to ask this! Any > insight into the course of this disease will be much appreciated. > > Down but not for the count, > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2001 Report Share Posted January 11, 2001 Try being 25 years old and having this... All you older folks should be proud you atleast had a time in your life that you probably enjoyed... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2001 Report Share Posted January 11, 2001 : I have similar issues - am a 54 yr. old Mom to 9 yr. old boy, very active and begrudge all that has become difficult to do. Note, I say difficult but not impossible. I had special grips made for my golf clubs and bike so that I could hold on. I use a walking stick when I back pack with my family (very fashionable). Worst for me is fatigue and pain. Sometimes both kick me down, but not for long. I gave in to the medicine (MTX and Indocin) when I saw how bad I was without. Does help some. I do not ride horses, just watch hubby and son. I just do not have a strong enough grip any more. Choose your battles. And Take Care. Signed. Toadessa Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2001 Report Share Posted January 11, 2001 I sympathize your pain....I am young also with this disease(not as young as you)but we all no matter our age need to live our lives the best we can. You may not realize it now but later it is going to make you a stronger person. We need to remain with a good positive attitude. I know we all have our days and that is ok. It isn't the end of the world....we just have to adjust to a new one. Take care. a [ ] Re: new and overwhelmed > Try being 25 years old and having this... All you older folks should be > proud you atleast had a time in your life that you probably enjoyed... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2001 Report Share Posted January 11, 2001 > Try being 25 years old and having this... All you older folks > should be proud you atleast had a time in your life that you > probably enjoyed... Ease up New Jersey. I don't think any of us should presume we have the saddest story. No matter how rough things seem, there's always someone younger, sadder and worse off than you. I'm only 34 and I've had PA since my late 20s. There are lots of people with PA who are younger than you and some who are just kids. I'm not saying you you aren't in pain or that your life doesn't suck. You have every right to complain and vent all you want and this is a good forum to do it in but please don't step on anyone else's right to complain in the process. You have my sympathy. You're obviously in pain and probably depressed too. That seems to be a common link between all of us. I happen to be emotionally okay at the moment and I'm praying it'll last. Up until a couple of weeks ago, my first waking thought every morning was that I wished I was dead. Every morning I'd say that to myself and then I'd feel guilty and promise myself that I'd stop being so negative but I couldn't help it. The next day the alarm clock would buzz and I turn it off and wish I was dead. I'm still in a lot of pain but sometimes I feel like the depression and feelings of hopelessness that come with this disease are worse than the pain itself (not that I'd wish the pain on anyone). There's nothing wrong with a little self-pity now and then. The important thing is not to let self-pity keep you from making progress. Large or small, there's progress to be made and lots of things left to try. If you don't like your doctor, try to find a better one. If you don't like the drugs you're getting, ask for different ones. Try yoga. Try swimming. Try osteopathy or accupuncture. Try hot baths. Try singing or yelling. Find anything that makes you feel better and do it. Don't give up until you find something that makes you happy Jersey. Hang in there, Gayle " Everything works out in the end. If it hasn't worked out, it isn't the end. " Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 11, 2001 Report Share Posted January 11, 2001 a, you make so much sense. I think when we have a flare up or our meds are just not working, we feel so frustrated. When we see even the slightest improvement ( for me it was when my right knee wasn't hurting) we rejoice. Maybe I still have joints that make me cringe, but say " oh, and ah' " then move a little at a time. Just a thought,---------- a gratitude journal. Each day write down just two things that made you feel good about LIFE. Yesterday it was when my class (2nd graders) were enjoying a math game on geometry, and when I bumped into an old friend who didn't know about my PA but said I looked good:) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2001 Report Share Posted January 12, 2001 In a message dated 01/11/01 1:57:35 PM Eastern Standard Time, newjersey23@... writes: << Try being 25 years old and having this... All you older folks should be proud you atleast had a time in your life that you probably enjoyed... >> Hiya NewJersey - you sound like you need a good rant - so spout off. We are all here to read and relate. Hope you're feeling better soon. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 12, 2001 Report Share Posted January 12, 2001 New Jersey, I have a 10 year old daughter with this horrible disease and her life haven't really started yet. So there is someone younger than you dealing with PA and JRA(juvenile rheumatoid arthritis) too. She's constantly in pain 24/7, but she doesn't let it get the best of her. She's a cheerleader and getting ready to play soccer too. What I'm trying to say is you got to fight for what you want and not let PA get the best of you. I think it gets me down more than it does her and I'm just five years older than you. Ywellen Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 7, 2008 Report Share Posted June 7, 2008 ,I am so sorry about 's diagnosis. I'll be honest I was about 's age at diagnosis and perhaps if they had treated aggressively things would be a little different for me. The new thought process amongst pediatric rheumatologist's is if they treat aggressively in the beginning it may be possible to get kids into remission faster and then taper off the medication, instead of doing the titrate up thing which could take years to get to the level the child actually needs to be treated on while in the meantime destruction occurs. As a JA vet I would say yes I would go for it, but of course I come from a stand point where I have lost twenty five percent of my lung capacity, went through years of pain and suffering, lost range of motion, and have dealt with the various parts of this disease, no two people with juvenile arthritis follow the same path. In the end its your daughter and your choice. I have done all of those drugs and they hugely improved my life. Maybe it would help to sit down with the doctor in charge of the clinical trial to discuss the pros and cons. Either way I am sorry that she is having to battle this and that as a mom you have to watch her go through it. Love and hugs, (JAS, 23)From: russellj35 <jrussell74@...>Subject: New and overwhelmed Date: Saturday, June 7, 2008, 12:18 PM Hello there! I have been reading posts for the last few months. Our daughter (7) was diagnosed with poly JRA this Thursday. Her first symptoms showed up March 15th where she woke up with swollen knuckles on both hands (the three middle fingers on each hand). She didn't complain of any pain. However, she went through a severely anxious period in February before the swelling was apparant. We think her body wasn't feeling right as she was freaking out about every little thing on her body and has been going to counseling for that. I kept thinking it wasn't going (was hoping) to be a JRA diagnosis because I have read so many stories of all that you have all been though and was thinking she doesn't seem to be too bad as she doesn't complain much about her fingers, she just says they tingle and is walking "normal" and isn't to a "severe" pain level even though many joints are involved. Her main compliant was about her neck. The doctor who examined her said it appears to be in her hips and some toes as well as the neck and fingers. I partly don't believe it and feel like the diagnosis is wrong (am I in denial). I guess I was thinking for all I knew her fingers were swollen and she had started to complain of her neck. Her first round of bloodwork came back with an elevated ANA. She was given Naproxen back on March 15th and has been on it since. Her fingers have not gone back to normal. Her second round of bloodwork didn't show an elevated ANA. Is this normal? Now we have to figure out what to do for treatment as Naproxen hasn't done the job although they are uping her dose some. Of course with all the information I was receiving in the office they had to bring up the option of a clincial trial. Has anyone out there tried any clincial trials? The trial would include the drugs methotrexate, ebrel and prednisolone. Of course there are two groups where one would receive the three med's I mentioned and the second group would receive methotrexate and a placebo of enbrel and a placebo of prednisolone for 4 months then she would be evaluated. She would recieve whichever group for four months and depending on how she responds...if there is 70% improvment she would continue with treatment. However, if there was less than 70% improvement. ..they would open label and give her the three med's unblinded. As I mentioned I don't feel like 's "quality" of life has been affected like some of your children (whom are in my thoughts and prayers).... but would anyone do this trial? I feel like it is a lot of medication to subject her poor little body too, but of course do not want her to get "worse." The study is for 12 months (but we could drop out at anytime). It is a trial of early aggressive treatment in JIA (TREAT)...I am scared and don't know if I should just let my doctor do what he thinks is best or give it a shot. I would like to do the clinical trial to be helpful for the future of the children who are diagnosed with this disease. They are obviously trying to figure out if aggressive treatment is best or the wait and see approach. I am at a lost and overwhelmed by the side effects of the mentioned medications. Is anyone out there that can give me info. regarding the med's and their use in their children who might have similar symptoms. I know there are so many different variations to this disease. I appreciate that you are all out there and am thankful someone formed this group. Any input in any way would be more than appreciated. Thank you for listening and sorry if I got lengthy and am scattered. I feel like my mind is going so many directions. Thanks again, (mom to (7) poly) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 Hello , I am new here also. I cant give you any advice, since i too am just learning about JRA. My daughter is on naproxen but we do not give it to her as the dose tells us to. It causes a lot of bruising and over time it causes blood in the urine. I try and only give it to her when she is having a flare-up. We do however, giver her Tylenol every night for the pain. I am sorry your little one has JRA. I hope that you get help here...the group seems very promising :)Love,MiaMia is cute Ian 9 years old Sashi 5 From: russellj35 <jrussell74@...>Subject: New and overwhelmedTo: Date: Saturday, June 7, 2008, 11:18 AM Hello there! I have been reading posts for the last few months. Our daughter (7) was diagnosed with poly JRA this Thursday. Her first symptoms showed up March 15th where she woke up with swollen knuckles on both hands (the three middle fingers on each hand). She didn't complain of any pain. However, she went through a severely anxious period in February before the swelling was apparant. We think her body wasn't feeling right as she was freaking out about every little thing on her body and has been going to counseling for that. I kept thinking it wasn't going (was hoping) to be a JRA diagnosis because I have read so many stories of all that you have all been though and was thinking she doesn't seem to be too bad as she doesn't complain much about her fingers, she just says they tingle and is walking "normal" and isn't to a "severe" pain level even though many joints are involved. Her main compliant was about her neck. The doctor who examined her said it appears to be in her hips and some toes as well as the neck and fingers. I partly don't believe it and feel like the diagnosis is wrong (am I in denial). I guess I was thinking for all I knew her fingers were swollen and she had started to complain of her neck. Her first round of bloodwork came back with an elevated ANA. She was given Naproxen back on March 15th and has been on it since. Her fingers have not gone back to normal. Her second round of bloodwork didn't show an elevated ANA. Is this normal? Now we have to figure out what to do for treatment as Naproxen hasn't done the job although they are uping her dose some. Of course with all the information I was receiving in the office they had to bring up the option of a clincial trial. Has anyone out there tried any clincial trials? The trial would include the drugs methotrexate, ebrel and prednisolone. Of course there are two groups where one would receive the three med's I mentioned and the second group would receive methotrexate and a placebo of enbrel and a placebo of prednisolone for 4 months then she would be evaluated. She would recieve whichever group for four months and depending on how she responds...if there is 70% improvment she would continue with treatment. However, if there was less than 70% improvement. ..they would open label and give her the three med's unblinded. As I mentioned I don't feel like 's "quality" of life has been affected like some of your children (whom are in my thoughts and prayers).... but would anyone do this trial? I feel like it is a lot of medication to subject her poor little body too, but of course do not want her to get "worse." The study is for 12 months (but we could drop out at anytime). It is a trial of early aggressive treatment in JIA (TREAT)...I am scared and don't know if I should just let my doctor do what he thinks is best or give it a shot. I would like to do the clinical trial to be helpful for the future of the children who are diagnosed with this disease. They are obviously trying to figure out if aggressive treatment is best or the wait and see approach. I am at a lost and overwhelmed by the side effects of the mentioned medications. Is anyone out there that can give me info. regarding the med's and their use in their children who might have similar symptoms. I know there are so many different variations to this disease. I appreciate that you are all out there and am thankful someone formed this group. Any input in any way would be more than appreciated. Thank you for listening and sorry if I got lengthy and am scattered. I feel like my mind is going so many directions. Thanks again, (mom to (7) poly) Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 Hello - I'm sure it has to be incredibly hard to make decisions about treatment for your child especialy when it comes down to clinical trials! Oh one thing I was going to comment on is that having a positve and than negative ANA can happen. It could have been a lab fluke or change in the disease. I'm wondering about her other labs... like does she have a lot of inflammation showing through the ESR C-reactive Protein, is she RF positive or negaitve and some of the other disease predictors that help doctors decide on treatment..... Like said, the general more helpful direction is treating aggressively early on to try and throw the disease into remission is more the norm and often the best however having caution is always good. The one thing that kinda stands out to me as a worry in your post is that it seems like your daughter has only been on antiinflamatories and still has swelling yet they haven't tried Methotrexate which is one of the most common next steps. Than they present this study which would add the MTX but also potentialy Embrel and prednisone! Now maybe it's just me, but it seem's like a huge leap to go from NSAIDS to MTX,. Pred And Enbrel when it's quite possible that methotrexate alone could do wonders for her. Esp because while Enbrel can be a miraculous drug, it's another injection, and potential for more side effects and Prednisone can really have damaging effects in short amount of times on mood, appearence, etc The fact that your daughter already has body image issues and adding prednisone is a really difficult thing because prednisone is known ti increase appetite, give you the 'moon face' chipmunk cheeks and can increase anxiety, depression or general irritability for many people. Sometimes the drug is absolutely necessary and does wonders but when it's not.... it's a lot to consider putting someone on I would think. Also, it def. has a habit of lowering immune system resistance adn than if you get sick, than you can't take your Enbrel and it just get's messy. Enbrel and Methotrexate both can suppress the immune system because it's trying to suppress inflammation but in the mean time, it also can effect positive things from the immune system as well. On the other hand. it would definately BE an aggressive approach to treatment and if it worked out well for her, could really make her feel loads better in a short ammount of time. But again, the thing that most concerns me is that she hasn't been on MTX already. I think if she were and still having inflammation, a study like this would be really ideal but being that she hasn't, it seems like a really huge leap. Thats why I asked about the labs because maybe her doctor see's some of the blood markers that predict more aggressive disease and that is why they think this study is a good idea but anyways, thats my 5 cents... Issadora (JRA, FMS/MPS age 30) On Sat, Jun 7, 2008 at 10:00 PM, mia league <miaisadorable@...> wrote: Hello , I am new here also. I cant give you any advice, since i too am just learning about JRA. My daughter is on naproxen but we do not give it to her as the dose tells us to. It causes a lot of bruising and over time it causes blood in the urine. I try and only give it to her when she is having a flare-up. We do however, giver her Tylenol every night for the pain. I am sorry your little one has JRA. I hope that you get help here...the group seems very promising :)Love,MiaMia is cute Ian 9 years old Sashi 5 From: russellj35 <jrussell74@...>Subject: New and overwhelmed Date: Saturday, June 7, 2008, 11:18 AM Hello there! I have been reading posts for the last few months. Our daughter (7) was diagnosed with poly JRA this Thursday. Her first symptoms showed up March 15th where she woke up with swollen knuckles on both hands (the three middle fingers on each hand). She didn't complain of any pain. However, she went through a severely anxious period in February before the swelling was apparant. We think her body wasn't feeling right as she was freaking out about every little thing on her body and has been going to counseling for that. I kept thinking it wasn't going (was hoping) to be a JRA diagnosis because I have read so many stories of all that you have all been though and was thinking she doesn't seem to be too bad as she doesn't complain much about her fingers, she just says they tingle and is walking " normal " and isn't to a " severe " pain level even though many joints are involved. Her main compliant was about her neck. The doctor who examined her said it appears to be in her hips and some toes as well as the neck and fingers. I partly don't believe it and feel like the diagnosis is wrong (am I in denial). I guess I was thinking for all I knew her fingers were swollen and she had started to complain of her neck. Her first round of bloodwork came back with an elevated ANA. She was given Naproxen back on March 15th and has been on it since. Her fingers have not gone back to normal. Her second round of bloodwork didn't show an elevated ANA. Is this normal? Now we have to figure out what to do for treatment as Naproxen hasn't done the job although they are uping her dose some. Of course with all the information I was receiving in the office they had to bring up the option of a clincial trial. Has anyone out there tried any clincial trials? The trial would include the drugs methotrexate, ebrel and prednisolone. Of course there are two groups where one would receive the three med's I mentioned and the second group would receive methotrexate and a placebo of enbrel and a placebo of prednisolone for 4 months then she would be evaluated. She would recieve whichever group for four months and depending on how she responds...if there is 70% improvment she would continue with treatment. However, if there was less than 70% improvement. ..they would open label and give her the three med's unblinded. As I mentioned I don't feel like 's " quality " of life has been affected like some of your children (whom are in my thoughts and prayers).... but would anyone do this trial? I feel like it is a lot of medication to subject her poor little body too, but of course do not want her to get " worse. " The study is for 12 months (but we could drop out at anytime). It is a trial of early aggressive treatment in JIA (TREAT)...I am scared and don't know if I should just let my doctor do what he thinks is best or give it a shot. I would like to do the clinical trial to be helpful for the future of the children who are diagnosed with this disease. They are obviously trying to figure out if aggressive treatment is best or the wait and see approach. I am at a lost and overwhelmed by the side effects of the mentioned medications. Is anyone out there that can give me info. regarding the med's and their use in their children who might have similar symptoms. I know there are so many different variations to this disease. I appreciate that you are all out there and am thankful someone formed this group. Any input in any way would be more than appreciated. Thank you for listening and sorry if I got lengthy and am scattered. I feel like my mind is going so many directions.Thanks again, (mom to (7) poly) -- " Life- Like the flutter of wings... feel your hollow wings rushing... " (AFI- Silver and Cold). my Flight in life is a metamorphosis of growth and this flutter of wings is within me awaiting to find a space to find it's flow... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 8, 2008 Report Share Posted June 8, 2008 Thank you all for your responses...it definitely makes me think and helps me to feel more informed and gives me more questions to ask. Issadora, I will ask more about her bloodwork at our next visit. I think that has been my concern as well that all she has had is Naproxen and to now give her all these others is alot in my mind. The reason she has only been on Naproxen is that it was actually prescribed by our pediatrician back in March. Our pediatrician had talked to the rhumy at Children's on what bloodwork to take and what to start with due to the inflammation. They kept an eye on and followed up with the bloodwork again after 6 weeks of inflamation and then of course we got the referral to the rhumy when the swelling persisted. Our first meeting with the rhumy was Thursday and all this info. was presented to me. Of course, my hubby was out of town so I had to take it all in. I did ask the doctor what medication he would use if we didn't do the clinical trial and I know he mentioned MTX as one of them. I will definitely spend some more time talking to him about it. , thank you for the information you provided from your own standpoint it helps out more than works can say! Thank you! Mia, I too wish you the best with your daughters new diagnois as well. Best wishes! You are all such wonderful people and what a blessing to be able to throw my thoughts off people who are informed and who have dealt wit this disease. Words can't explain how appreciative I am. Hugs to you all! (mom to (7, poly) New and overwhelmed Date: Saturday, June 7, 2008, 11:18 AM Hello there! I have been reading posts for the last few months. Our daughter (7) was diagnosed with poly JRA this Thursday. Her first symptoms showed up March 15th where she woke up with swollen knuckles on both hands (the three middle fingers on each hand). She didn't complain of any pain. However, she went through a severely anxious period in February before the swelling was apparant. We think her body wasn't feeling right as she was freaking out about every little thing on her body and has been going to counseling for that. I kept thinking it wasn't going (was hoping) to be a JRA diagnosis because I have read so many stories of all that you have all been though and was thinking she doesn't seem to be too bad as she doesn't complain much about her fingers, she just says they tingle and is walking "normal" and isn't to a "severe" pain level even though many joints are involved. Her main compliant was about her neck. The doctor who examined her said it appears to be in her hips and some toes as well as the neck and fingers. I partly don't believe it and feel like the diagnosis is wrong (am I in denial). I guess I was thinking for all I knew her fingers were swollen and she had started to complain of her neck. Her first round of bloodwork came back with an elevated ANA. She was given Naproxen back on March 15th and has been on it since. Her fingers have not gone back to normal. Her second round of bloodwork didn't show an elevated ANA. Is this normal? Now we have to figure out what to do for treatment as Naproxen hasn't done the job although they are uping her dose some. Of course with all the information I was receiving in the office they had to bring up the option of a clincial trial. Has anyone out there tried any clincial trials? The trial would include the drugs methotrexate, ebrel and prednisolone. Of course there are two groups where one would receive the three med's I mentioned and the second group would receive methotrexate and a placebo of enbrel and a placebo of prednisolone for 4 months then she would be evaluated. She would recieve whichever group for four months and depending on how she responds...if there is 70% improvment she would continue with treatment. However, if there was less than 70% improvement. ..they would open label and give her the three med's unblinded. As I mentioned I don't feel like 's "quality" of life has been affected like some of your children (whom are in my thoughts and prayers).... but would anyone do this trial? I feel like it is a lot of medication to subject her poor little body too, but of course do not want her to get "worse." The study is for 12 months (but we could drop out at anytime). It is a trial of early aggressive treatment in JIA (TREAT)...I am scared and don't know if I should just let my doctor do what he thinks is best or give it a shot. I would like to do the clinical trial to be helpful for the future of the children who are diagnosed with this disease. They are obviously trying to figure out if aggressive treatment is best or the wait and see approach. I am at a lost and overwhelmed by the side effects of the mentioned medications. Is anyone out there that can give me info. regarding the med's and their use in their children who might have similar symptoms. I know there are so many different variations to this disease. I appreciate that you are all out there and am thankful someone formed this group. Any input in any way would be more than appreciated. Thank you for listening and sorry if I got lengthy and am scattered. I feel like my mind is going so many directions.Thanks again, (mom to (7) poly)-- "Life- Like the flutter of wings... feel your hollow wings rushing..." (AFI- Silver and Cold).my Flight in life is a metamorphosis of growth and this flutter of wings is within me awaiting to find a space to find it's flow... Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 - Welcome to the group! There are kids who don't have pain with this. The only reason Grant was dx was because he had uveitis first and we were told we should see a rheumy to see if something is going on systemically. As we thought this was going to be a big waste of time appt., sure enough - the rheumy found inflammation in 3 joints. It was still there 6 weeks later and that is when we were diagnosed. It has been a year now and he still really doesn't have any pain in his joints. He is on naproxen and MTX. I think that my rheumy said that about 60% of kids don't have pain with their arthritis. But some also just don't realize they feel bad until they start taking medication and suddenly realize how good they feel. Hope this helps & Grant (11, PsA/Uveitis) > > From: russellj35 <jrussell74@...> > Subject: New and overwhelmed > > > Date: Saturday, June 7, 2008, 11:18 AM > > > > Hello there! I have been reading posts for the last few months. Our > daughter (7) was diagnosed with poly JRA this Thursday. Her > first symptoms showed up March 15th where she woke up with swollen > knuckles on both hands (the three middle fingers on each hand). She > didn't complain of any pain. However, she went through a severely > anxious period in February before the swelling was apparant. We > think her body wasn't feeling right as she was freaking out about > every little thing on her body and has been going to counseling for > that. I kept thinking it wasn't going (was hoping) to be a JRA > diagnosis because I have read so many stories of all that you have > all been though and was thinking she doesn't seem to be too bad as > she doesn't complain much about her fingers, she just says they > tingle and is walking " normal " and isn't to a " severe " pain level > even though many joints are involved. Her main compliant was about > her neck. The doctor who examined her said it appears to be in her > hips and some toes as well as the neck and fingers. I partly don't > believe it and feel like the diagnosis is wrong (am I in denial). I > guess I was thinking for all I knew her fingers were swollen and she > had started to complain of her neck. Her first round of bloodwork > came back with an elevated ANA. She was given Naproxen back on March > 15th and has been on it since. Her fingers have not gone back to > normal. Her second round of bloodwork didn't show an elevated ANA. > Is this normal? Now we have to figure out what to do for treatment > as Naproxen hasn't done the job although they are uping her dose > some. Of course with all the information I was receiving in the > office they had to bring up the option of a clincial trial. Has > anyone out there tried any clincial trials? The trial would include > the drugs methotrexate, ebrel and prednisolone. Of course there are > two groups where one would receive the three med's I mentioned and > the second group would receive methotrexate and a placebo of enbrel > and a placebo of prednisolone for 4 months then she would be > evaluated. She would recieve whichever group for four months and > depending on how she responds...if there is 70% improvment she would > continue with treatment. However, if there was less than 70% > improvement. ..they would open label and give her the three med's > unblinded. As I mentioned I don't feel like 's " quality " of > life has been affected like some of your children (whom are in my > thoughts and prayers).... but would anyone do this trial? I feel like > it is a lot of medication to subject her poor little body too, but of > course do not want her to get " worse. " The study is for 12 months > (but we could drop out at anytime). It is a trial of early > aggressive treatment in JIA (TREAT)...I am scared and don't know if I > should just let my doctor do what he thinks is best or give it a > shot. I would like to do the clinical trial to be helpful for the > future of the children who are diagnosed with this disease. They are > obviously trying to figure out if aggressive treatment is best or the > wait and see approach. I am at a lost and overwhelmed by the side > effects of the mentioned medications. Is anyone out there that can > give me info. regarding the med's and their use in their children who > might have similar symptoms. I know there are so many different > variations to this disease. I appreciate that you are all out there > and am thankful someone formed this group. Any input in any way > would be more than appreciated. Thank you for listening and sorry if > I got lengthy and am scattered. I feel like my mind is going so many > directions. > > Thanks again, > (mom to (7) poly) > > > > > > > > > > -- > " Life- Like the flutter of wings... feel your hollow wings rushing... " (AFI- Silver and Cold). > > my Flight in life is a metamorphosis of growth and this flutter of wings is within me awaiting to find a space to find it's flow... > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 9, 2008 Report Share Posted June 9, 2008 , Thanks a bunch....we have 's appt to get check for uveitis tomorrow. I wish you the best. & 7, poly New and overwhelmed> > > Date: Saturday, June 7, 2008, 11:18 AM > > > > Hello there! I have been reading posts for the last few months. Our > daughter (7) was diagnosed with poly JRA this Thursday. Her > first symptoms showed up March 15th where she woke up with swollen > knuckles on both hands (the three middle fingers on each hand). She > didn't complain of any pain. However, she went through a severely > anxious period in February before the swelling was apparant. We > think her body wasn't feeling right as she was freaking out about > every little thing on her body and has been going to counseling for > that. I kept thinking it wasn't going (was hoping) to be a JRA > diagnosis because I have read so many stories of all that you have > all been though and was thinking she doesn't seem to be too bad as > she doesn't complain much about her fingers, she just says they > tingle and is walking "normal" and isn't to a "severe" pain level > even though many joints are involved. Her main compliant was about > her neck. The doctor who examined her said it appears to be in her > hips and some toes as well as the neck and fingers. I partly don't > believe it and feel like the diagnosis is wrong (am I in denial). I > guess I was thinking for all I knew her fingers were swollen and she > had started to complain of her neck. Her first round of bloodwork > came back with an elevated ANA. She was given Naproxen back on March > 15th and has been on it since. Her fingers have not gone back to > normal. Her second round of bloodwork didn't show an elevated ANA. > Is this normal? Now we have to figure out what to do for treatment > as Naproxen hasn't done the job although they are uping her dose > some. Of course with all the information I was receiving in the > office they had to bring up the option of a clincial trial. Has > anyone out there tried any clincial trials? The trial would include > the drugs methotrexate, ebrel and prednisolone. Of course there are > two groups where one would receive the three med's I mentioned and > the second group would receive methotrexate and a placebo of enbrel > and a placebo of prednisolone for 4 months then she would be > evaluated. She would recieve whichever group for four months and > depending on how she responds...if there is 70% improvment she would > continue with treatment. However, if there was less than 70% > improvement. ..they would open label and give her the three med's > unblinded. As I mentioned I don't feel like 's "quality" of > life has been affected like some of your children (whom are in my > thoughts and prayers).... but would anyone do this trial? I feel like > it is a lot of medication to subject her poor little body too, but of > course do not want her to get "worse." The study is for 12 months > (but we could drop out at anytime). It is a trial of early > aggressive treatment in JIA (TREAT)...I am scared and don't know if I > should just let my doctor do what he thinks is best or give it a > shot. I would like to do the clinical trial to be helpful for the > future of the children who are diagnosed with this disease. They are > obviously trying to figure out if aggressive treatment is best or the > wait and see approach. I am at a lost and overwhelmed by the side > effects of the mentioned medications. Is anyone out there that can > give me info. regarding the med's and their use in their children who > might have similar symptoms. I know there are so many different > variations to this disease. I appreciate that you are all out there > and am thankful someone formed this group. Any input in any way > would be more than appreciated. Thank you for listening and sorry if > I got lengthy and am scattered. I feel like my mind is going so many > directions.> > Thanks again,> (mom to (7) poly)> > > > > > > > > > -- > "Life- Like the flutter of wings... feel your hollow wings rushing..." (AFI- Silver and Cold).> > my Flight in life is a metamorphosis of growth and this flutter of wings is within me awaiting to find a space to find it's flow...> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 14, 2010 Report Share Posted April 14, 2010 My almost 6 year old DS was diagnosed with Asperger's last month. I've been reading as much as possible and trying to better understand him, but am still at a loss. I just don't know what to do for him. Up until he turned five he was so easy going. Since he hit five he's like a different child. He's unhappy most of the time, defiant 99% of the time, mischievious.... He yells at me constantly, shakes his fist at me (hitting has finally stopped), threatens me.... I miss my sweet little boy. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2010 Report Share Posted April 15, 2010 We have read The Explosive Child by Ross Greene and found it very helpful. It explains what is happening with our kids, how to identify triggers that set them off, and how to collaboratively problem solve. I really like his operating belief: Children do well when they can. When our kids are not doing well, there is generally something that can be changed in their environment or our relationship to them that can help.Good luck. We have struggled too. And the good & bad times come and go. Enjoy the good while it lasts and know the bad will eventually pass.From: trberry5 <Ree@...> Sent: Wed, April 14, 2010 12:17:57 PMSubject: ( ) New and overwhelmed My almost 6 year old DS was diagnosed with Asperger's last month. I've been reading as much as possible and trying to better understand him, but am still at a loss. I just don't know what to do for him. Up until he turned five he was so easy going. Since he hit five he's like a different child. He's unhappy most of the time, defiant 99% of the time, mischievious. ... He yells at me constantly, shakes his fist at me (hitting has finally stopped), threatens me.... I miss my sweet little boy. __________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2010 Report Share Posted April 15, 2010 I wish I had some insight, but all I have is empathy. My 5 year old also seems like a different person - she is so withdrawn at school, doesn't want to go anymore, etc. I'm finally realizing, with the help of this group actually, that her difficult moments follow a pattern - anxiety is bigger than I thought it was, and what she is anxious about is not what I tended to expect. Take care and good luck. Debbie > > My almost 6 year old DS was diagnosed with Asperger's last month. I've been reading as much as possible and trying to better understand him, but am still at a loss. > > I just don't know what to do for him. Up until he turned five he was so easy going. Since he hit five he's like a different child. He's unhappy most of the time, defiant 99% of the time, mischievious.... > > He yells at me constantly, shakes his fist at me (hitting has finally stopped), threatens me.... > > I miss my sweet little boy. > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 15, 2010 Report Share Posted April 15, 2010  I have to agree about this book...it was recommended to me by the Children's Hospital who diagnosed my daughter. After reading it, at least it clicked with me that my child is DOING THE BEST SHE CAN WITH WHAT SHE HAS TO DEAL WITH. I think that once you, as the parent, grasp this, things do become much easier. ( ) New and overwhelmed My almost 6 year old DS was diagnosed with Asperger's last month. I've been reading as much as possible and trying to better understand him, but am still at a loss. I just don't know what to do for him. Up until he turned five he was so easy going. Since he hit five he's like a different child. He's unhappy most of the time, defiant 99% of the time, mischievious. ...He yells at me constantly, shakes his fist at me (hitting has finally stopped), threatens me.... I miss my sweet little boy.__________________________________________________ Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2010 Report Share Posted April 16, 2010 We've known about our dd for two years and I still feel new and overwhelmed, despite all my research and any help we have been able to receive. It hurts to see her suffer with the difficulties she faces daily, and it's hard to know whether or not I'm making the right decisions all the time. But I love her dearly and I'm trying... just like you! Take care! -Kari > > I have to agree about this book...it was recommended to me by the Children's Hospital who diagnosed my daughter. After reading it, at least it clicked with me that my child is DOING THE BEST SHE CAN WITH WHAT SHE HAS TO DEAL WITH. I think that once you, as the parent, grasp this, things do become much easier. > > > ( ) New and overwhelmed > > > My almost 6 year old DS was diagnosed with Asperger's last month. I've been reading as much as possible and trying to better understand him, but am still at a loss. > > I just don't know what to do for him. Up until he turned five he was so easy going. Since he hit five he's like a different child. He's unhappy most of the time, defiant 99% of the time, mischievious. ... > > He yells at me constantly, shakes his fist at me (hitting has finally stopped), threatens me.... > > I miss my sweet little boy. > > > > > __________________________________________________ > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2010 Report Share Posted April 16, 2010 It is overwhelming, and so heartbreaking to see your child change like that. He's probably so stressed at school and explodes because he can't take it anymore. There is a tremendous amount of anxiety that comes with being an Aspie - not fitting in, not knowing how, not being able to handle the transitions, not being able to use a scissors as well as other kids, the noise, the lights, the scratchy tags, etc. Also, he may be upset if he doesn't have any friends (not sure if that's the situation). Once he gets his diagnosis, get right to work and set up an IEP meeting so he can have some modifications at school. Our son gets a few minutes notice before a transition, instead of it being sprung upon him. The teacher has him repeat back instructions to ensure he understands what he needs to do, he gets extra time to complete assignments if necessary, etc. It varies kid to kid, but there are things that could be done to make his life at school easier. Also, the social skills classes he'll get through school, coupled with pragmatic speech will help him learn to overcome some of those typical Aspie issues. Also pick up " Aspergers Syndrome " by Tony Atwood. Very comprehensive guide to all things Aspergers. Not every one has every symptom, but I found it very helpful to know what I was dealing with. Hey, we've all been there and are happy to help guide you through! Good luck. > > > > I have to agree about this book...it was recommended to me by the Children's Hospital who diagnosed my daughter. After reading it, at least it clicked with me that my child is DOING THE BEST SHE CAN WITH WHAT SHE HAS TO DEAL WITH. I think that once you, as the parent, grasp this, things do become much easier. > > > > > > ( ) New and overwhelmed > > > > > > My almost 6 year old DS was diagnosed with Asperger's last month. I've been reading as much as possible and trying to better understand him, but am still at a loss. > > > > I just don't know what to do for him. Up until he turned five he was so easy going. Since he hit five he's like a different child. He's unhappy most of the time, defiant 99% of the time, mischievious. ... > > > > He yells at me constantly, shakes his fist at me (hitting has finally stopped), threatens me.... > > > > I miss my sweet little boy. > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted April 16, 2010 Report Share Posted April 16, 2010 I agree about reading the "explosive child" book I've read it and it help me understand my son's outbursts and now that I've changed the way I look at him and act when he does it we have had a peaceful existence. I do feel bad for him though other children have trouble understanding him because of the low muscle tone and he has no friends that come to the house etc... I have problems personally socially and so does he...with no family its pretty much him and I...and his aids. Marcia Re: ( ) New and overwhelmed It is overwhelming, and so heartbreaking to see your child change like that. He's probably so stressed at school and explodes because he can't take it anymore. There is a tremendous amount of anxiety that comes with being an Aspie - not fitting in, not knowing how, not being able to handle the transitions, not being able to use a scissors as well as other kids, the noise, the lights, the scratchy tags, etc. Also, he may be upset if he doesn't have any friends (not sure if that's the situation). Once he gets his diagnosis, get right to work and set up an IEP meeting so he can have some modifications at school. Our son gets a few minutes notice before a transition, instead of it being sprung upon him. The teacher has him repeat back instructions to ensure he understands what he needs to do, he gets extra time to complete assignments if necessary, etc. It varies kid to kid, but there are things that could be done to make his life at school easier. Also, the social skills classes he'll get through school, coupled with pragmatic speech will help him learn to overcome some of those typical Aspie issues. Also pick up "Aspergers Syndrome" by Tony Atwood. Very comprehensive guide to all things Aspergers. Not every one has every symptom, but I found it very helpful to know what I was dealing with. Hey, we've all been there and are happy to help guide you through! Good luck. > > > > I have to agree about this book...it was recommended to me by the Children's Hospital who diagnosed my daughter. After reading it, at least it clicked with me that my child is DOING THE BEST SHE CAN WITH WHAT SHE HAS TO DEAL WITH. I think that once you, as the parent, grasp this, things do become much easier. > > > > > > ( ) New and overwhelmed > > > > > > My almost 6 year old DS was diagnosed with Asperger's last month. I've been reading as much as possible and trying to better understand him, but am still at a loss. > > > > I just don't know what to do for him. Up until he turned five he was so easy going. Since he hit five he's like a different child. He's unhappy most of the time, defiant 99% of the time, mischievious. ... > > > > He yells at me constantly, shakes his fist at me (hitting has finally stopped), threatens me.... > > > > I miss my sweet little boy. > > > > > > > > > > __________________________________________________ > > Quote Link to comment Share on other sites More sharing options...
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