Guest guest Posted August 14, 2005 Report Share Posted August 14, 2005 Shirley, I'm so sorry for all that you're going through. I will surely keep you in my prayers. I have several articles on rheumatoid lung on my site: http://rheumatoid.arthritis.freehosting.net/Rheumatoid Arthritis.html Are you still taking the Enbrel 3 times a week? Has your doctor considered switching you to something else? I hope you can find something to give you relief and get the RA under control. a On Aug 13, 2005, at 4:03 PM, Edmis3@... wrote: > Dear Friends in the RA group: > > Just a note to all of you as I need your prayers, the ole RA is > affecting my > heart and lungs and has been for over a year now. I just had the > pleural > space of my left lung drained while in a CT scanner and a CT of my > heart > yesterday at the hospital. I have pericarditis and rheumatoid lung. > The fluid gives > me pain in my upper back and I cough and am short of air and the > pericarditis > gives me chest pains and I have had it for several months now. I > know this > to will pass as it hasn't been continuous. I had sepsis infection in > January > and was in the Poudre Valley hospital in Ft. Colorado for > nine days in > ICU, I almost didn't make it my blood pressure was 53/32 and they > told my > family if I had waited until morning I would not have made it. > Please pray for me > and my problems. Also my RA is out of control and I have really been > hurting > as I have been on high doses of prednisone because of the fluid and > heart > problem and they are now bumping me down and when I dropped to 30 on > Monday I got > really bad.  I would appreciate hearing from anyone in the group > about these > current problems I am having. I love this group and I don't get to > post to > often but I read most all of the posts daily. > > Hoping to hear from anyone in the group. > > Love and Prayers > Shirley > Edmis3@... > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2005 Report Share Posted September 7, 2005 I live a couple hours away in St ph Missouri.My doctor is in springfield. Hyland Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2005 Report Share Posted September 7, 2005 Corinne, I had to stop mtx a few times because of the high enzymes. The last time I went to the rheumy, did my lab work, the enzymes came back high. I had to go back again for lab work, and haven't heard back. The first time I was on mtx, I went off it for about six months. So, it probably depends on the doctor, and how your enzymes are. The mtx really works for me, and it's really sad when something works, and causes so much problems too. Tawny > How many people on here have had to stop taking methotrexate due to high > liver enzynes and for how long.. > > Corinne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted September 7, 2005 Report Share Posted September 7, 2005 I was taken off it 15 years ago due to high liver enzymes. However, I have started taking it again 7.5mg once a week to see if I can now tolerate it. I take Enbrel and it would seem this combination works better than Enbrel by itself. I get my labs done every 3 weeks so if something is wrong it will be caught in time. Hugs June [ ] (no subject) How many people on here have had to stop taking methotrexate due to high liver enzynes and for how long.. Corinne Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 so do you think i should call my rheumi? kathy in il Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 he really didn't say what kind of pneumonia it was. just told me i could work if i felt up to it kathy in il Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 So sorry to hear that, Kathy. I'm assuming that your doctor doesn't believe it's MTX pneumonitis. Not an MD I'll tell you where to go! Mayo Clinic in Rochester http://www.mayoclinic.org/rochester s Hopkins Medicine http://www.hopkinsmedicine.org [ ] (no subject) > > y'know i just can't catch a break here lately. i went back to the dr this > morning and after his exam he said he wanted a chest x-ray. i have > pneumonia!! > i got a shot of antibiotics right in the butt, he says i can work as long > as > i feel well enough too. so i guess i am not contagious. i am staying home > today to let this shot work it's magic. last week it was a sinus > infection, ear > infection and bronchitis. skipped mtx injection last Friday and now this > one > too > > kathy in il Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 only certain infections. most times they tell me to take it. i didn't last week just because i didn't feel right about it with all the added drugs. i will call my rtheumi kathy in il Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 Here's hoping you're soon on the mend, Kathy. Just curious, have you had a pneumonia shot? I know that you can still get pneumonia even if you have. Sue On Tuesday, January 10, 2006, at 12:17 PM, kringlemom@... wrote: > > y'know i just can't catch a break here lately. i went back to the dr > this > morning and after his exam he said he wanted a chest x-ray. i have > pneumonia!! > i got a shot of antibiotics right in the butt, he says i can work as > long as > i feel well enough too. so i guess i am not contagious. i am staying > home > today to let this shot work it's magic. last week it was a sinus > infection, ear > infection and bronchitis. skipped mtx injection last Friday and now > this one > too Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 Hi Kathy, you sure are having a run of things, I hope you are feeling much better soon. Is it the norm to not take your mtx when youre sick??? I've never been told this one and have taken when I had the flu etc Take care kringlemom@... wrote: y'know i just can't catch a break here lately. i went back to the dr this morning and after his exam he said he wanted a chest x-ray. i have pneumonia!! i got a shot of antibiotics right in the butt, he says i can work as long as i feel well enough too. so i guess i am not contagious. i am staying home today to let this shot work it's magic. last week it was a sinus infection, ear infection and bronchitis. skipped mtx injection last Friday and now this one too kathy in il Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 10, 2006 Report Share Posted January 10, 2006 Kathe, Sorry to hear you have pneumonia:( I hope you feel better soon, your in my prayers, Tawny > > > y'know i just can't catch a break here lately. i went back to the dr this > morning and after his exam he said he wanted a chest x-ray. i have pneumonia!! > i got a shot of antibiotics right in the butt, he says i can work as long as > i feel well enough too. so i guess i am not contagious. i am staying home > today to let this shot work it's magic. last week it was a sinus infection, ear > infection and bronchitis. skipped mtx injection last Friday and now this one > too > > kathy in il > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2006 Report Share Posted February 27, 2006 Becky, I know there are several out there, but could not give you the specifics,lol. I think that is a great idea, it also means that you could get together with lots of babies in the same age range and that would be fun too. You can always ask CT if they mind if you put up a flyer about it at the clinic. CAROLG > > I am just curious.....does anyone live in a town/city/state in which there > are live support groups in them? I was curious cause I was thinking of > starting one up here in CT > > Becky > Katelyn 5 months > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2006 Report Share Posted February 27, 2006 Becky, I know there are several out there, but could not give you the specifics,lol. I think that is a great idea, it also means that you could get together with lots of babies in the same age range and that would be fun too. You can always ask CT if they mind if you put up a flyer about it at the clinic. CAROLG > > I am just curious.....does anyone live in a town/city/state in which there > are live support groups in them? I was curious cause I was thinking of > starting one up here in CT > > Becky > Katelyn 5 months > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2006 Report Share Posted February 27, 2006 Hi there Becky, I did searching locally (MN) and couldn't find a live support group here. With my first son I was really wanting one, but everyone here helped me through that.. he's now 2.5 With my newest lil guy, I really wanted a local one as well. So, I called the hospitals and found out if anything existed, or how it could. I am now in the process of forming one, and WOW, it takes a ton of work and research. Another mom that I met via this site is helping, she created all our flyers. The hospital is also doing a tremendous amount of work and are giving us the room to hold the group. Call around to the clincs/hospitals in your area and ask them, and then talk to a ped coordinator through a clinic. I went through the place where Eli (my 7 mo old) is getting PT, and got the ball rolling. Be prepared for a big job -- it's a big committment but well worth it. Kim > > I am just curious.....does anyone live in a town/city/state in which there > are live support groups in them? I was curious cause I was thinking of > starting one up here in CT > > Becky > Katelyn 5 months > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2006 Report Share Posted February 27, 2006 Hi there Becky, I did searching locally (MN) and couldn't find a live support group here. With my first son I was really wanting one, but everyone here helped me through that.. he's now 2.5 With my newest lil guy, I really wanted a local one as well. So, I called the hospitals and found out if anything existed, or how it could. I am now in the process of forming one, and WOW, it takes a ton of work and research. Another mom that I met via this site is helping, she created all our flyers. The hospital is also doing a tremendous amount of work and are giving us the room to hold the group. Call around to the clincs/hospitals in your area and ask them, and then talk to a ped coordinator through a clinic. I went through the place where Eli (my 7 mo old) is getting PT, and got the ball rolling. Be prepared for a big job -- it's a big committment but well worth it. Kim > > I am just curious.....does anyone live in a town/city/state in which there > are live support groups in them? I was curious cause I was thinking of > starting one up here in CT > > Becky > Katelyn 5 months > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2006 Report Share Posted February 27, 2006 I feel for ya Becky!! When Kaitlyn was 4 1/2 months is when the whole thing started, it took almost 3 months, yes 3 months just to get the OK for her to see the plastic surgeon/cranial facial specialist to see if she needed a helmet (we knew she did but our insurance required us to see one first) so by the time things were said and done Kaitlyn was almost 8 months when she got her helmet. You never really know how long each child will wear the helmet really, it just all depends on how fast their heads grow. Kaitlyn has been in hers since 12-15 and is doing really well with it, I'm hoping and praying it's not much longer!! Sorry I'm not much help just wanted to let you know that you aren't alone!! Good luck and big hugs! Bobbi from Michigan Mommy to Kaitlyn , tort (resolved), plag, banded on 12-15-05JetergirlBP@... wrote: Damn insurance! The woman from CT called my insurance and the nurse in charge of our case at the insurance co. was out of the office for three days last week so our case is still PENDING! I am jus tmad cause the longer we wait the older she getsWill this have an effect on how long she will have to wear this? At 4 1/2 months they said by the looks of her head she would have to wear it for 3 months....she is 5 months 1 week today, I am afraid that by the time they get the damn band on her she will be 6 months already if not later! Becky Use Photomail to share photos without annoying attachments. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 27, 2006 Report Share Posted February 27, 2006 I feel for ya Becky!! When Kaitlyn was 4 1/2 months is when the whole thing started, it took almost 3 months, yes 3 months just to get the OK for her to see the plastic surgeon/cranial facial specialist to see if she needed a helmet (we knew she did but our insurance required us to see one first) so by the time things were said and done Kaitlyn was almost 8 months when she got her helmet. You never really know how long each child will wear the helmet really, it just all depends on how fast their heads grow. Kaitlyn has been in hers since 12-15 and is doing really well with it, I'm hoping and praying it's not much longer!! Sorry I'm not much help just wanted to let you know that you aren't alone!! Good luck and big hugs! Bobbi from Michigan Mommy to Kaitlyn , tort (resolved), plag, banded on 12-15-05JetergirlBP@... wrote: Damn insurance! The woman from CT called my insurance and the nurse in charge of our case at the insurance co. was out of the office for three days last week so our case is still PENDING! I am jus tmad cause the longer we wait the older she getsWill this have an effect on how long she will have to wear this? At 4 1/2 months they said by the looks of her head she would have to wear it for 3 months....she is 5 months 1 week today, I am afraid that by the time they get the damn band on her she will be 6 months already if not later! Becky Use Photomail to share photos without annoying attachments. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 Becky, waiting is the hardest part of this process. Do wait though because some companies will not pay if you start before they approve or deny. The wait should not affect wear time very much. CAROLG > > Damn insurance! The woman from CT called my insurance and the nurse in > charge of our case at the insurance co. was out of the office for three days last > week so our case is still PENDING! I am jus tmad cause the longer we wait the > older she gets > > Will this have an effect on how long she will have to wear this? At 4 1/2 > months they said by the looks of her head she would have to wear it for 3 > months....she is 5 months 1 week today, I am afraid that by the time they get the > damn band on her she will be 6 months already if not later! > > Becky > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2006 Report Share Posted February 28, 2006 Becky, waiting is the hardest part of this process. Do wait though because some companies will not pay if you start before they approve or deny. The wait should not affect wear time very much. CAROLG > > Damn insurance! The woman from CT called my insurance and the nurse in > charge of our case at the insurance co. was out of the office for three days last > week so our case is still PENDING! I am jus tmad cause the longer we wait the > older she gets > > Will this have an effect on how long she will have to wear this? At 4 1/2 > months they said by the looks of her head she would have to wear it for 3 > months....she is 5 months 1 week today, I am afraid that by the time they get the > damn band on her she will be 6 months already if not later! > > Becky > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2006 Report Share Posted March 16, 2006 Becky, Now she is all ready for the spring,lol. Great job, it looks awesome! CAROLG > > I just posted two more pics of katelyn in the " K " albums..its her new > decorated ladybug bands > > Becky > Katelyn-DOC band since 3/14/06 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2006 Report Share Posted March 16, 2006 Becky, Now she is all ready for the spring,lol. Great job, it looks awesome! CAROLG > > I just posted two more pics of katelyn in the " K " albums..its her new > decorated ladybug bands > > Becky > Katelyn-DOC band since 3/14/06 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2006 Report Share Posted March 16, 2006 Becky, I LOVE the lady bug theme on Katelyn's band. It's soooo cute. She's a doll too, she has such gorgeous eyes. Thanks for sharing. > > I posted some pics of Katelyn in her band (undecorated) > > They can be found in plagio babies K...... > Day 1 in her band > day2 > Katelyn day 2 > > > Thanks for looking! > Becky > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2006 Report Share Posted March 16, 2006 Becky, I LOVE the lady bug theme on Katelyn's band. It's soooo cute. She's a doll too, she has such gorgeous eyes. Thanks for sharing. > > I posted some pics of Katelyn in her band (undecorated) > > They can be found in plagio babies K...... > Day 1 in her band > day2 > Katelyn day 2 > > > Thanks for looking! > Becky > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 26, 2006 Report Share Posted June 26, 2006 > > Hi all, Was asked what dose of LDN I take...I'm currently at 2.0 but I did > start on 4.5 (prescribed by Dr Bihari)...which I took for probably 1 > year.....I've experimented with just about every dose since. Anyway, the stiffness at > this point is still with me along with everything else. I went from walking > without difficulty to being pretty housebound in the last 2 to 2 1/2 years. Had a > fever, about that long ago, which might have precipitated all of this. ..... > ========== Try getting the transdermal(TD) LDN made with Emu oil that Dr. Jaquelyn McCandless is using with her Autistic patients. You can avoid the extra stiffness by the TD LDN as it bypasses the liver. Your pharmacist must contact the pharmacy Dr. McCandless uses for the LDN-Emu oil mixture recipe. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted October 7, 2006 Report Share Posted October 7, 2006 Cookie, Dr S is experienmenting with Alinia an ABX from Europe and it has the properties of flagyl..no side effects. Can be pricey but it is covered by Insurance and available here.He as wellas Vanderbuilt believe these issues are gut related..thats why this is an important key he said. Dose is 500 mg 2x aday for 2 weeks a month or 1 a day . We have posted some info on the other site.( www.rheumaticsupport.net) He should be back again soon as we all want to hear more about the new findings he is getting. Marge Marge Quote Link to comment Share on other sites More sharing options...
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