Guest guest Posted January 26, 2004 Report Share Posted January 26, 2004 Tree:I hope that you have excellent results from the remicade. Sorry about the multiple sticks! How often do you have to have labs done when you are on that mix of meds? I go back to Stern on thursday...we'll see what he thinks about this right hand and wrist. I am in no way in need of the TNF drugs, in my opinion, but I do believe that joint damage is happening in a couple of my fingers. I'm on 25mgs of mtx, and liver enzymes are perfect. So I am unsure of what he'll think or suggest. I don't have a dishwasher and for once in my life don't mind..that hot water is the best therapy there is along with the exercise of washing the dishes!Poor Matt...hope he heals quickly and gets back to that wrestling lol...he is a tough guy just like his momma! I'll have to get to that planning for our get-together...right now we are saying pitch in dinner and bonfire. Seeing as how by then it won't be getting dark till 8:30 or 9, we can have dinner and then save room for weinie roast, marshmallows, s'mores and our favorite, campfire cobbler (a boy scout tradition). We'll have to come up with some sort of plan for the menu. 2 months to go! Tree, I'll keep you in my prayers that the remicade is your answer and that no adverse effects occur. Keep us posted on the results! and Rob 14 Spondy On Sun, 25 Jan 2004 13:17:15 -0500 "Tree Sap" <treesap61@...> writes: Hi , Small world isn't it ! LOL I was so upset that Dr. Wheeler only practices for the rich now. I can understand why..just feel really let down and still do. Thank heavens we still have Ceil. I almost never see Stern lol in fact I ask for ceil and then only take Stern when she's not available LOL. Stern is so dry ..but I did learn that he is more of a cut up in the mornings and I had been seeing him in the late afternoons. Mornings make a big difference with him. As for me well I'm starting Remicade Monday afternoon, that is if all this ice melts so I can get there LOL. Things haven't been horrible but they have been chronic and worst than anything I've got so much darned fatigue again. I hardly even answer emails anymore because I get home from work and fix dinner and then just go to bed. FACES is talking about what we will do for fund raisers this year and all I can think of is the down side of everything. that's not my usual self I'm usually much more positive but I just haven't the energy to keep that up. Even on my days off I don't do anything but hover at home pacing myself with laundry and naps and cooking. Thinking I'll catch up with some extra energy reserve and things will be better next week, but it's just not happening. I was very strongly opposed to trying anymore DMARD's after my liver damage from the mix of Embrel, Metho and Celebrex and especially no more Methotrexate....but you can't have one without the other and so I'm going to stay on the ARAVA with the Remicade to prevent the antibodies from building up too much . I can't wait until April either!!!! it'll be great fun. Did I tell you that Matt injured his shoulder just before Christmas? he dislocated and torn the cartilage away from the bone during a wrestling match. He had surgery on the 14th of Jan and is stuck in a huge brace type sling that holds his arm in a certain position for a whole month. They did Arthroscopic surgery and he got his stitches out Thursday. Dr. Tillett that did both my hips did his shoulder as well. Matt claims he's going back to wrestling come summer and I'm cringing every time he says it lol. These boys, it just has to be something in the blood lol they take all these risk and don't think a thing about it LOL. matt will need allot of rehab after all this to get his ROM back lol he might think twice before going back after all that lol. The thing is is I have to live with him through all that and believe me he is not a very patient patient lol Mind you Matt is 16 yrs old and on the way home from the hospital after his surgery he was stomping in the back seat of the car because his arm and hand felt ice cold but his hand was very warm to the touch...lol hence the obvious need for a temper fit lol makes sense to me lol NOTTTTT ! lol oh well enough about my woes lol Like I said we all are looking forward to April and please let me know more what kind of affair you are planning so I can decide what to bring!!!!! Love ya Tree:):):) Re: Patty:: Patty:I was officially diagnosed with RA January 2003, although I have hadfinger and wrist joint pain for probably 5 years or more. My symptomsworsened in October 2002 (Rob's symptoms came on March 2002), so I dowonder if the stress of Rob's illness had something to do with theworsening of my own RA. My mother was diagnosed with RA at about the sameage I am now. I remember she was on aspirin therapy and it seemed she wasalways getting joint injections. No, we don't see the same rheumy..Rob goes to a pediatricrheumatologist, I see an adult one. I like my rheumy ok, but I reallylike his nurse practicioner! We just click really well. They pretty muchlet me call the shots in my treatment.I began MTX April 2003 when I had a bout with eye inflammation. Theydidn't give me a choice on that one!Rob and I have different diseases. His is juvenile ankylosingspondylitis. It affects the joints and tendons. Notorious for affectingthe hips and spine. Rob presented with bilateral hip effusions. He islikely to have lifelong problems with the disease, and likely to need hipreplacements at an early age. You can control the disease with meds, butthere doesn't appear to be any 'growing out of it'. The good news is thatall the arthritis meds have calmed the inflammation in his lungs, and hisasthma is soooo much better!It sounds like Caitlin is making headway with the MTX, with the predtapering going on and the joints doing ok. How much MTX is she on? Theymay raise the MTX as the pred tapers to get her better control.We have similar problems with our endocrinologist. They are so rare, andso darned hard to get an appointment We were supposed to have a recheckin December, and I try to schedule appts so Rob doesn't have to miss somuch school. The last appt they take is 2 pm. And, they were closed theentire 2 week period he was off school for Christmas break. I have totake him out of school early on Tuesday to go for his recheck. What isirritating about that, the last time I took him out early, and we were inthe waiting room so long that by the time he got called back, he couldhave left school at the usual time and still made his appointment. Iasked them if I could call ahead and see how they were doing on timebefore I took him out of school, and they said they wouldn't do that. Notvery user friendly, to say the least. I told them if they were the onlydoctor Rob had to see, I wouldn't mind as much. But he sees nephrology,rheumy, eye doctor, orthodontist, allergist, pediatrician for 6 month ADDcheckups, and infectious disease doctors. He misses so much schoolbecause of all that! I feel sorry for the endocrinologist's patients whoare diabetic, because those kids have to be seen so much more often. Ithink it is shameful that they have such ridiculous office hours.Back off my soapbox. Hope Caitlin is doing well tonight and I'll lookforward to your post about on the HGH list! and Rob 14 Spondy>Sorry to hear you are having a flare yourself. I > knew your son had > JRA, but I wasn't aware you had RA. When did your RA show? Is it > the same > as Rob's? Do you both see the same rheumy?> > How long have you taken MTX? So far Caitlin hasn't had any nausea, > but she > really hasn't been on it that long She just took her 3rd dose > yesterday. I > will keep the splitting in mind just in case. > Caitlin has been having great days - a huge relief I know you all > understand:) However, every night the spots are back on her hands. > Last night she had > the spots and a little bit of the rash on her one hand and the back > of one > thigh. Joints aren't swelling though and her pain is in one hand, a > couple of > oints and minimal. She kept saying her muscles hurt so I had to > explain the > difference between what's a muscle and a joint. Something most > children don't > have to be concerned with, but Caitlin now has to be aware of. She > frequently > has a slight fever in the early morning hours and then it's down by > late > morning. Go figure. She is nothing what she was at the very > beginning of this > illness thank God.> > goes Wednesday to her endo. We are expecting snow and the > last time > we had it they (whimps) canceled. I was so upset. She had waited 6 > months > to get that appointment and with the cancellation she had to wait 2 > more damn > months:( Hopefully, they don't cancel. I am just like you: I, > too, have > wanted to measure her so many times, but stopped myself (don't want > to disappoint > her if it's not a lot). So I havne't measured her a single time - > good mommy > LOL. I am anxious to see if and how much she has grown. There was > a two > week period that she stopped treatment because of the dingy's at the > insurance > company and pharmaceutical company couldn't get in agreeance, so > hopefully, that > won't affect her to much, we'll see. We still have years to grow:) > I am > just so thankful she was identified, approved and started treatment > and has not > had any side effects (the two big ones). I do know her feet have > grown and we > have to go today and get new shoes WHOHOOO:) Her muscle tone (she's > > hypotonic) has improved too. > > Have a good one.> > Take care.> Patty> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2004 Report Share Posted January 27, 2004 Hi , I know what you mean about the dishwashing I've always had a dishwasher while married but as a kid I had to do the dishes and boy did I fight to get to wash instead of dry lol nowadays I'm glad to have the dishwasher because standing in one spot for a long time is the issue lol I have a parafin bath for the hands issues lol much more relaxing than the dishwashing even lol Good Luck Thursday..is your appointment with Stern or Ceil because as of yesterday she was stuck in Phoenix AZ. Apparently a bunch of staff went to Phoenix for a conference and Stern came back early and was OK but the others had later flights and all this bad weather got them stuck there lol I could handle being stuck in Phoenix but I bet the weather is bad or they wouldn't be stuck lol Nothings worse than being packed for 80 degrees and it's below freezing. So if you get to see Ceil tell her I was thinking about her in stuck in Phoenix. I'm not sure how often they will be doing my labs but I know the nurse Shirlene said that in two weeks when I come back for the next infusion she will do blood work then and that sounded great to me lol no extra sticks lol So far so good with any problems other than I had a headache that lasted a good while. Which is odd for me because I don't usually get much in the way of headaches. Sorry to hear your joints may be to the point of damage, truthfully I really think that once they are in damage mode well you may be able to slow the progress but eventually the joint will have to be dealt with in other ways. Sometimes it fuses itself and you'll have no more pain after that but generally speaking the damage process is like a slippery slope. Damage is hard to undo once its started. I Donna, for instance , For years was in remission with sed rates of 12 and 18 will the rest of us in group were over a hundred or just happy to be under a hundred. yet it seems she has the most joint damage which progressively and aggressively gets worse. Right now she really should be considering replacement of knees , both shoulders, at least one ankle and sundry finger joints. I really don't know what keeps her standing. Sheer determination, will and stubborness lol Well I better get off here and get something done here on my day off lol Laundry beckons me from afar lol.Take care and good luck thursday and hugs to you all !! Tree:):) Re: Patty:: Patty:I was officially diagnosed with RA January 2003, although I have hadfinger and wrist joint pain for probably 5 years or more. My symptomsworsened in October 2002 (Rob's symptoms came on March 2002), so I dowonder if the stress of Rob's illness had something to do with theworsening of my own RA. My mother was diagnosed with RA at about the sameage I am now. I remember she was on aspirin therapy and it seemed she wasalways getting joint injections. No, we don't see the same rheumy..Rob goes to a pediatricrheumatologist, I see an adult one. I like my rheumy ok, but I reallylike his nurse practicioner! We just click really well. They pretty muchlet me call the shots in my treatment.I began MTX April 2003 when I had a bout with eye inflammation. Theydidn't give me a choice on that one!Rob and I have different diseases. His is juvenile ankylosingspondylitis. It affects the joints and tendons. Notorious for affectingthe hips and spine. Rob presented with bilateral hip effusions. He islikely to have lifelong problems with the disease, and likely to need hipreplacements at an early age. You can control the disease with meds, butthere doesn't appear to be any 'growing out of it'. The good news is thatall the arthritis meds have calmed the inflammation in his lungs, and hisasthma is soooo much better!It sounds like Caitlin is making headway with the MTX, with the predtapering going on and the joints doing ok. How much MTX is she on? Theymay raise the MTX as the pred tapers to get her better control.We have similar problems with our endocrinologist. They are so rare, andso darned hard to get an appointment We were supposed to have a recheckin December, and I try to schedule appts so Rob doesn't have to miss somuch school. The last appt they take is 2 pm. And, they were closed theentire 2 week period he was off school for Christmas break. I have totake him out of school early on Tuesday to go for his recheck. What isirritating about that, the last time I took him out early, and we were inthe waiting room so long that by the time he got called back, he couldhave left school at the usual time and still made his appointment. Iasked them if I could call ahead and see how they were doing on timebefore I took him out of school, and they said they wouldn't do that. Notvery user friendly, to say the least. I told them if they were the onlydoctor Rob had to see, I wouldn't mind as much. But he sees nephrology,rheumy, eye doctor, orthodontist, allergist, pediatrician for 6 month ADDcheckups, and infectious disease doctors. He misses so much schoolbecause of all that! I feel sorry for the endocrinologist's patients whoare diabetic, because those kids have to be seen so much more often. Ithink it is shameful that they have such ridiculous office hours.Back off my soapbox. Hope Caitlin is doing well tonight and I'll lookforward to your post about on the HGH list! and Rob 14 Spondy>Sorry to hear you are having a flare yourself. I > knew your son had > JRA, but I wasn't aware you had RA. When did your RA show? Is it > the same > as Rob's? Do you both see the same rheumy?> > How long have you taken MTX? So far Caitlin hasn't had any nausea, > but she > really hasn't been on it that long She just took her 3rd dose > yesterday. I > will keep the splitting in mind just in case. > Caitlin has been having great days - a huge relief I know you all > understand:) However, every night the spots are back on her hands. > Last night she had > the spots and a little bit of the rash on her one hand and the back > of one > thigh. Joints aren't swelling though and her pain is in one hand, a > couple of > oints and minimal. She kept saying her muscles hurt so I had to > explain the > difference between what's a muscle and a joint. Something most > children don't > have to be concerned with, but Caitlin now has to be aware of. She > frequently > has a slight fever in the early morning hours and then it's down by > late > morning. Go figure. She is nothing what she was at the very > beginning of this > illness thank God.> > goes Wednesday to her endo. We are expecting snow and the > last time > we had it they (whimps) canceled. I was so upset. She had waited 6 > months > to get that appointment and with the cancellation she had to wait 2 > more damn > months:( Hopefully, they don't cancel. I am just like you: I, > too, have > wanted to measure her so many times, but stopped myself (don't want > to disappoint > her if it's not a lot). So I havne't measured her a single time - > good mommy > LOL. I am anxious to see if and how much she has grown. There was > a two > week period that she stopped treatment because of the dingy's at the > insurance > company and pharmaceutical company couldn't get in agreeance, so > hopefully, that > won't affect her to much, we'll see. We still have years to grow:) > I am > just so thankful she was identified, approved and started treatment > and has not > had any side effects (the two big ones). I do know her feet have > grown and we > have to go today and get new shoes WHOHOOO:) Her muscle tone (she's > > hypotonic) has improved too. > > Have a good one.> > Take care.> Patty> > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2004 Report Share Posted January 27, 2004 In a message dated 1/27/04 11:22:33 AM Eastern Standard Time, treesap61@... writes: << or years was in remission with sed rates of 12 and 18 will the rest of us in group were over a hundred or just happy to be under a hundred. yet it seems she has the most joint damage which progressively and aggressively gets worse. Right now she re >> Hi Tree: Have you known a lot of people with sed rates of over 100? Caitlin's is now just under 100 (highest being 120) at 93. Take care. Patty Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 27, 2004 Report Share Posted January 27, 2004 Hi , I've tried to convince of the very same thing, that washing the dishes is a very therapeutic activity that just may bring some extra relief when his wrists are feeling very sore. But, never-the-less, he still doesn't want to take over that chore on a full-time basis. So, as it stands now, we continue to rotate the shifts! Good luck at your upcoming appt. Let us know what the doctor thinks. Send our best wishes to Robbie, too. Aloha, Georgina snooksmama@... wrote: > Tree: > I hope that you have excellent results from the remicade. Sorry about > the multiple sticks! How often do you have to have labs done when you > are on that mix of meds? I go back to Stern on thursday...we'll see what > he thinks about this right hand and wrist. I am in no way in need of the > TNF drugs, in my opinion, but I do believe that joint damage is > happening in a couple of my fingers. I'm on 25mgs of mtx, and liver > enzymes are perfect. So I am unsure of what he'll think or suggest. I > don't have a dishwasher and for once in my life don't mind..that hot > water is the best therapy there is along with the exercise of washing > the dishes! > Poor Matt...hope he heals quickly and gets back to that wrestling > lol...he is a tough guy just like his momma! > I'll have to get to that planning for our get-together...right now we > are saying pitch in dinner and bonfire. Seeing as how by then it won't > be getting dark till 8:30 or 9, we can have dinner and then save room > for weinie roast, marshmallows, s'mores and our favorite, campfire > cobbler (a boy scout tradition). We'll have to come up with some sort of > plan for the menu. 2 months to go! > Tree, I'll keep you in my prayers that the remicade is your answer and > that no adverse effects occur. Keep us posted on the results! > and Rob 14 Spondy Quote Link to comment Share on other sites More sharing options...
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