Guest guest Posted January 31, 2003 Report Share Posted January 31, 2003 just wondering if anyone has been diagnosed with pulmonary hypertension? (if so how are they doing) thanks for your help holly in new hampshire Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2003 Report Share Posted January 31, 2003 Holly, I was diagnosed with that in the 90's and was put on medication. My GP said I would always have to take the medication but somehow last year it got very bad for a while and then better and better and the doctors took me off the medication and I haven't had any problems since. I don't know why, but I am very happy and the side affects of the medication weren't too bad after getting used to them. I wish you all the luck. Chat was real good last night, thank you for sharing. Till soon, Melt Re: pulmonary hypertension > just wondering if anyone has been diagnosed with pulmonary hypertension? > (if so how are they doing) > thanks for your help > holly > in new hampshire Quote Link to comment Share on other sites More sharing options...
Guest guest Posted January 31, 2003 Report Share Posted January 31, 2003 Melt, I found your post about pulmonary hypertension interesting as I don't think it's ever been discussed here before. I was told last spring that I had it also but that was as far as it went (like it was no big deal). I didn't realize it could be treated with medication. Were you told it was Stills related? I was led to believe I had it because I also high blood pressure. Did you see a lung specialist and what symptoms did it cause for you? Is it tied in with the fatigue many of us have? Thanks for your help. Love, Barb Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2003 Report Share Posted February 1, 2003 i will rty to answer your questions on the symptoms that have happend this last 5 or 6 weeks i have severe chest pain i can not breath and feel like i can (and sometimes do )pass out my oxygen levels are low at times and my heart will race so fast that you can not count it and then my face gets so rred and i just can not stop sweating my tests on the lung were not good and the test on my heart showed that no matter what they do exercise or chemical my heart rate jumps up and my holter moniter that i had on for 24 hours showed that i have extra beets just before all the fun starts i hope that this helps the sad part is it all started about 5 or 6 weeks ago and i have gotten so much worse so quick for the last two days my arms and legs will turn a pink purple coller from bad circulation i guess the doc saw this on friday and did not like it i was told by this doctor that our type of aarthrits does cause this good old dragon it just seems to give us such a good time take care holly Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 1, 2003 Report Share Posted February 1, 2003 Barb and Holly I am so very sorry. I misread the illness and mine was just the regular hypertension and not the pulmonary. I am so very very sorry. I hope I didn't hurt anyone with my misunderstanding. Sincere apologies, Melt Re: Re: pulmonary hypertension > Melt, > I found your post about pulmonary hypertension interesting as I don't think > it's ever been discussed here before. I was told last spring that I had it > also but that was as far as it went (like it was no big deal). I didn't > realize it could be treated with medication. Were you told it was Stills > related? I was led to believe I had it because I also high blood pressure. > Did you see a lung specialist and what symptoms did it cause for you? Is it > tied in with the fatigue many of us have? Thanks for your help. Love, Barb > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 16, 2005 Report Share Posted March 16, 2005 > Has any one been dx with pulmonary hypertension? <snip> > Priscilla > Tucson, AZ Priscilla, Hello! I wish I had better news for you, but if I have this, no one has told me. I understand your frustration ... I discovered last year that there are several masses on my duodenum and the beginning of my small intestines that showed up in a CAT scan in 2001 in preparation for my hysterectomy, but nobody told me. Also, a umbilical hernia, which hurts like you can't believe, was diagnosed at the same time but they didn't bother to fix it. I really do NOT understand them not fixing the hernia since they'd sliced right through that area anyway with that surgery. I'll put you and in your prayers ... and say hello to Mike. Love, Mesquite, Texas Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2010 Report Share Posted July 23, 2010 There is a medication that was on...Tracleer and I believe Dr. W put her on what is that mans erectile dysfunction medicine? I cannot think of it now but I remember did well on it and h ad no more progression of her numbers...keep us posted. Debbie rheumatic Inflammation? > > rheumatic > > Date: Thursday, July 22, 2010, 2:39 AM > > > > > > > > Hi All > > > > Can anyone identify with the experience I am about to describe while on Methotrexate? > > > > For months, I have had a dry, hacking cough and during the last two months, a pain whenever I swallowed food or burped. This may be a possible ulcer or hernia. These symptoms were accompanied by fatigue. My GP put me on Rinitidine an anti-ulcer tablet but the symptoms worsened over a month. I then stopped the Methotrexate and took Arthrotec, declofenic(?) and my wheezy chest became much less wheezy and I can swallow food and burp with 5% of the pain. > > > > Where my symptoms caused by MTX and/or inflammation? Has anyone been similarly affected by their RA/medication in the past? > > > > Please feel free to comment and share? > > > > Ken. > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2010 Report Share Posted July 23, 2010 Did you see this Kate?? On Fri, Jul 23, 2010 at 11:43 AM, Carol Esposito <myscarol@...>wrote: > > > My cousin has recently been dx with this and is suffering badly. She has > the idiopathic type as she has no autoimmune diseases. Anyone out here who > has had success treating this with antibiotics or any treatments? Please let > me know! > Thanks, > > Carol E from NY > > Sent from my iPad > > On Jul 23, 2010, at 8:30 AM, DEBBIE GIBSON <Debbullwinkle@...<Debbullwinkle%40fuse.net>> > wrote: > > > Hi Carol, > > Yes, I still see Dr. Whitman in NJ...just saw him in early May...I > remember hearing that he saw patients in NYC but I have never seen him > there....here is his NJ phone number so you can call and get the info you > need. If you ever need to look him up online...you can look up Summit > Medical Group in NJ and then just click on rheum...or his name...I think I > remember you used to see him along with at his NJ office. I miss > . Hugs, D > > Dr. Hendriks H. Whitman > > Summit Medical Group > > PH 908-277-8640 > > > > He is in the Bensley Bldg in Berkeley Heights, NJ > > Hope this is what you were looking for, Debbie in Ohio > > > > rheumatic Inflammation? > > > rheumatic <rheumatic%40> > > > Date: Thursday, July 22, 2010, 2:39 AM > > > > > > > > > > > > Hi All > > > > > > Can anyone identify with the experience I am about to describe while on > Methotrexate? > > > > > > For months, I have had a dry, hacking cough and during the last two > months, a pain whenever I swallowed food or burped. This may be a possible > ulcer or hernia. These symptoms were accompanied by fatigue. My GP put me on > Rinitidine an anti-ulcer tablet but the symptoms worsened over a month. I > then stopped the Methotrexate and took Arthrotec, declofenic(?) and my > wheezy chest became much less wheezy and I can swallow food and burp with 5% > of the pain. > > > > > > Where my symptoms caused by MTX and/or inflammation? Has anyone been > similarly affected by their RA/medication in the past? > > > > > > Please feel free to comment and share? > > > > > > Ken. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2010 Report Share Posted July 23, 2010 The second medication you are tlaking about is Viagra, AKA Revatio. Did she have to take these for life? > > > > > > From: Ken maputo95@... > > > Subject: rheumatic Inflammation? > > > rheumatic > > > Date: Thursday, July 22, 2010, 2:39 AM > > > > > > > > > > > > Hi All > > > > > > Can anyone identify with the experience I am about to describe while on Methotrexate? > > > > > > For months, I have had a dry, hacking cough and during the last two months, a pain whenever I swallowed food or burped. This may be a possible ulcer or hernia. These symptoms were accompanied by fatigue. My GP put me on Rinitidine an anti-ulcer tablet but the symptoms worsened over a month. I then stopped the Methotrexate and took Arthrotec, declofenic(?) and my wheezy chest became much less wheezy and I can swallow food and burp with 5% of the pain. > > > > > > Where my symptoms caused by MTX and/or inflammation? Has anyone been similarly affected by their RA/medication in the past? > > > > > > Please feel free to comment and share? > > > > > > Ken. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2010 Report Share Posted July 23, 2010 Dr Whitman sees patients at the Hopital for Special Surgery in the Clinic area. For A/P patients he would rather see patients in N.J. Sohelia sees him in N.Y. Ask her for the specific address & phone number of the NY Clinic. Dolores From: marlaprendergast <kws11@...> Subject: rheumatic Re: Pulmonary hypertension rheumatic Date: Friday, July 23, 2010, 9:04 PM  The second medication you are tlaking about is Viagra, AKA Revatio. Did she have to take these for life? > > > > > > From: Ken maputo95@... > > > Subject: rheumatic Inflammation? > > > rheumatic > > > Date: Thursday, July 22, 2010, 2:39 AM > > > > > > > > > > > > Hi All > > > > > > Can anyone identify with the experience I am about to describe while on Methotrexate? > > > > > > For months, I have had a dry, hacking cough and during the last two months, a pain whenever I swallowed food or burped. This may be a possible ulcer or hernia. These symptoms were accompanied by fatigue. My GP put me on Rinitidine an anti-ulcer tablet but the symptoms worsened over a month. I then stopped the Methotrexate and took Arthrotec, declofenic(?) and my wheezy chest became much less wheezy and I can swallow food and burp with 5% of the pain. > > > > > > Where my symptoms caused by MTX and/or inflammation? Has anyone been similarly affected by their RA/medication in the past? > > > > > > Please feel free to comment and share? > > > > > > Ken. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 23, 2010 Report Share Posted July 23, 2010 Yes, when was dx with Pulm Hypertension...she was put on the Tracleer and the Viagra...her numbers never progressed any further from what I remember rheumatic Inflammation? > > > rheumatic > > > Date: Thursday, July 22, 2010, 2:39 AM > > > > > > > > > > > > Hi All > > > > > > Can anyone identify with the experience I am about to describe while on Methotrexate? > > > > > > For months, I have had a dry, hacking cough and during the last two months, a pain whenever I swallowed food or burped. This may be a possible ulcer or hernia. These symptoms were accompanied by fatigue. My GP put me on Rinitidine an anti-ulcer tablet but the symptoms worsened over a month. I then stopped the Methotrexate and took Arthrotec, declofenic(?) and my wheezy chest became much less wheezy and I can swallow food and burp with 5% of the pain. > > > > > > Where my symptoms caused by MTX and/or inflammation? Has anyone been similarly affected by their RA/medication in the past? > > > > > > Please feel free to comment and share? > > > > > > Ken. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2010 Report Share Posted July 24, 2010  Are we talking about Bleckman? Not sure if I spelled that right? I remember her e:mailing me. I didn't know she passed? Sorry to hear that!  My friend had pulmonary hypertension (idiopathic type) The doctors had told her it was a disease unto itself and had nothing to do with immune diseases. Her only hope was a double lung transplant which she got last year and is now doing well with her new lungs. She is on high doses of steroids to stop the body from rejecting them. Her new lungs had CMV and she had to be treated with antibiotics for that, but it was only short term and apparently they got all the virus. I think she was on the transplant list for 6 years or more. We were all getting worried that she wasn't going to make it.  We were so relieved when we heard, they found lungs for her that matched. Of course, we always feel sorry for the family of the person who had to die to become a donor. Hope your friend can get on that list real fast. From what I understand there is no cure. I had pulmonary fibrosis from the micoplasma pneumonae, which caused the scleroderma. By taking the antibiotics for 5 years I went into remission. My fibrosis has stopped advancing and now is in the healing stages. My lastest chest x-ray showed normal findings. That is all I know about Pulmonary Fibrosis. In my personal opinion, I think she got it when the buildings fell down during 9-11. She was working in an office across the street and had to flee. She ran for blocks with the debris gaining momentum on her. She wound up at my place. I was on the roof, watching the events unfold and breathed in a lot of that crap myself. At first I thought my lungs were damaged from 9-11. Not so, but it surely didn't help the situation. Later on, we found out that the fibrosis was caused by Scleroderma. Either way, it is a devastating disease. Dolores From: DEBBIE GIBSON <Debbullwinkle@...> Subject: Re: rheumatic Re: Pulmonary hypertension rheumatic Date: Friday, July 23, 2010, 11:19 PM  Yes, when was dx with Pulm Hypertension...she was put on the Tracleer and the Viagra...her numbers never progressed any further from what I remember rheumatic Inflammation? > > > rheumatic > > > Date: Thursday, July 22, 2010, 2:39 AM > > > > > > > > > > > > Hi All > > > > > > Can anyone identify with the experience I am about to describe while on Methotrexate? > > > > > > For months, I have had a dry, hacking cough and during the last two months, a pain whenever I swallowed food or burped. This may be a possible ulcer or hernia. These symptoms were accompanied by fatigue. My GP put me on Rinitidine an anti-ulcer tablet but the symptoms worsened over a month. I then stopped the Methotrexate and took Arthrotec, declofenic(?) and my wheezy chest became much less wheezy and I can swallow food and burp with 5% of the pain. > > > > > > Where my symptoms caused by MTX and/or inflammation? Has anyone been similarly affected by their RA/medication in the past? > > > > > > Please feel free to comment and share? > > > > > > Ken. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2010 Report Share Posted July 24, 2010 No Delores, we are talking about the death of Trepel-Cantor...she went to DR W and, at one point, was veryyyy active on this board...she is the that turned me on to Dr W...thank goodness... rheumatic Inflammation? > > > rheumatic > > > Date: Thursday, July 22, 2010, 2:39 AM > > > > > > > > > > > > Hi All > > > > > > Can anyone identify with the experience I am about to describe while on Methotrexate? > > > > > > For months, I have had a dry, hacking cough and during the last two months, a pain whenever I swallowed food or burped. This may be a possible ulcer or hernia. These symptoms were accompanied by fatigue. My GP put me on Rinitidine an anti-ulcer tablet but the symptoms worsened over a month. I then stopped the Methotrexate and took Arthrotec, declofenic(?) and my wheezy chest became much less wheezy and I can swallow food and burp with 5% of the pain. > > > > > > Where my symptoms caused by MTX and/or inflammation? Has anyone been similarly affected by their RA/medication in the past? > > > > > > Please feel free to comment and share? > > > > > > Ken. > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2010 Report Share Posted July 24, 2010 No, it was Treppel-Cantor that died. It still seems unreal to me. I went with her to NJ to see dr w for years. She died from lung cancer. Thanks for the info on the pulmonary hypertension. I passed it along to my cousin. Carol Sent from my iPad On Jul 24, 2010, at 2:53 PM, mike rosner <martysfolks2004@...> wrote: > > Are we talking about Bleckman? Not sure if I spelled that right? I remember her e:mailing me. I didn't know she passed? Sorry to hear that! > > My friend had pulmonary hypertension (idiopathic type) The doctors had told her it was a disease unto itself and had nothing to do with immune diseases. Her only hope was a double lung transplant which she got last year and is now doing well with her new lungs. She is on high doses of steroids to stop the body from rejecting them. Her new lungs had CMV and she had to be treated with antibiotics for that, but it she died from lung was only short term and apparently they got all the virus. I think she was on the transplant list for 6 years or more. We were all getting worried that she wasn't going to make it. We were so relieved when we heard, they found lungs for her that matched. Of course, we always feel sorry for the family of the person who had to die to become a donor. Hope your friend can get on that list real fast. From what I understand there is no cure. I had pulmonary fibrosis from the micoplasma pneumonae, which caused the scleroderma. By > taking the antibiotics for 5 years I went into remission. My fibrosis has stopped advancing and now is in the healing stages. My lastest chest x-ray showed normal findings. That is all I know about Pulmonary Fibrosis. In my personal opinion, I think she got it when the buildings fell down during 9-11. She was working in an office across the street and had to flee. She ran for blocks with the debris gaining momentum on her. She wound up at my place. I was on the roof, watching the events unfold and breathed in a lot of that crap myself. At first I thought my lungs were damaged from 9-11. Not so, but it surely didn't help the situation. Later on, we found out that the fibrosis was caused by Scleroderma. Either way, it is a devastating disease. Dolores > > > > From: DEBBIE GIBSON <Debbullwinkle@...> > Subject: Re: rheumatic Re: Pulmonary hypertension > rheumatic > Date: Friday, July 23, 2010, 11:19 PM > > > > Yes, when was dx with Pulm Hypertension...she was put on the Tracleer and the Viagra...her numbers never progressed any further from what I remember > rheumatic Inflammation? > > > > rheumatic > > > > Date: Thursday, July 22, 2010, 2:39 AM > > > > > > > > > > > > > > > > Hi All > > > > > > > > Can anyone identify with the experience I am about to describe while on Methotrexate? > > > > > > > > For months, I have had a dry, hacking cough and during the last two months, a pain whenever I swallowed food or burped. This may be a possible ulcer or hernia. These symptoms were accompanied by fatigue. My GP put me on Rinitidine an anti-ulcer tablet but the symptoms worsened over a month. I then stopped the Methotrexate and took Arthrotec, declofenic(?) and my wheezy chest became much less wheezy and I can swallow food and burp with 5% of the pain. > > > > > > > > Where my symptoms caused by MTX and/or inflammation? Has anyone been similarly affected by their RA/medication in the past? > > > > > > > > Please feel free to comment and share? > > > > > > > > Ken. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 24, 2010 Report Share Posted July 24, 2010 Thanks Delores! Sohelia, can you e-mail me Dr Whitman's address and phone no at the Hospital for Special Surgery! Thanks! Carol Sent from my iPad On Jul 23, 2010, at 10:40 PM, mike rosner <martysfolks2004@...> wrote: > Dr Whitman sees patients at the Hopital for Special Surgery in the Clinic area. For A/P patients he would rather see patients in N.J. Sohelia sees him in N.Y. Ask her for the specific address & phone number of the NY Clinic. Dolores > > > From: marlaprendergast <kws11@...> > Subject: rheumatic Re: Pulmonary hypertension > rheumatic > Date: Friday, July 23, 2010, 9:04 PM > > > > The second medication you are tlaking about is Viagra, AKA Revatio. Did she have to take these for life? > > > > > > > > > > From: Ken maputo95@... > > > > Subject: rheumatic Inflammation? > > > > rheumatic > > > > Date: Thursday, July 22, 2010, 2:39 AM > > > > > > > > > > > > > > > > Hi All > > > > > > > > Can anyone identify with the experience I am about to describe while on Methotrexate? > > > > > > > > For months, I have had a dry, hacking cough and during the last two months, a pain whenever I swallowed food or burped. This may be a possible ulcer or hernia. These symptoms were accompanied by fatigue. My GP put me on Rinitidine an anti-ulcer tablet but the symptoms worsened over a month. I then stopped the Methotrexate and took Arthrotec, declofenic(?) and my wheezy chest became much less wheezy and I can swallow food and burp with 5% of the pain. > > > > > > > > Where my symptoms caused by MTX and/or inflammation? Has anyone been similarly affected by their RA/medication in the past? > > > > > > > > Please feel free to comment and share? > > > > > > > > Ken. > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted July 25, 2010 Report Share Posted July 25, 2010 Hi Carol. If you try calling the NJ number of Dr. Whitman, they may be able to give you the information on how to reach Dr. Whtiman at the NY # of the clinic at Special Surgery in N.Y. Sohelia may be on vacation. She is a sweetheart and is always ready to help. I'm sure we will hear from her soon.Dolores > > > > > > From: marlaprendergast <kws11@...> > > > Subject: rheumatic Re: Pulmonary hypertension > > > rheumatic > > > Date: Friday, July 23, 2010, 9:04 PM > > > > > > > > > > > > The second medication you are tlaking about is Viagra, > AKA Revatio. Did she have to take these for life? > > > > > > > > > > > > > > > > > > From: Ken maputo95@... > > > > > > Subject: rheumatic Inflammation? > > > > > > rheumatic > > > > > > Date: Thursday, July 22, 2010, 2:39 AM > > > > > > > > > > > > > > > > > > > > > > > > Hi All > > > > > > > > > > > > Can anyone identify with the experience > I am about to describe while on Methotrexate? > > > > > > > > > > > > For months, I have had a dry, hacking > cough and during the last two months, a pain whenever I > swallowed food or burped. This may be a possible ulcer or > hernia. These symptoms were accompanied by fatigue. My GP > put me on Rinitidine an anti-ulcer tablet but the symptoms > worsened over a month. I then stopped the Methotrexate and > took Arthrotec, declofenic(?) and my wheezy chest became > much less wheezy and I can swallow food and burp with 5% of > the pain. > > > > > > > > > > > > Where my symptoms caused by MTX and/or > inflammation? Has anyone been similarly affected by their > RA/medication in the past? > > > > > > > > > > > > Please feel free to comment and share? > > > > > > > > > > > > Ken. > > > > > > > > > > > > [Non-text portions of this message have > been removed] > > > > > > > > > > > > [Non-text portions of this message have > been removed] > > > > > > > > > > > > [Non-text portions of this message have > been removed] > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > removed] > > > > > > > > > > [Non-text portions of this message have been > removed] > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > removed] > > > > > > > > > > > > > > > > > > > > > > > > [Non-text portions of this message have been > removed] > > > > > > > > > > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2011 Report Share Posted March 23, 2011 Is anyone in this group who has SD been diagnosed with pulmonary hypertension? Also, I am trying to remember who had posted about seeing a Dr. in Texas. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 23, 2011 Report Share Posted March 23, 2011 Thank you Ethel, Debra  <font color= " #0000ff " face= " comic sans ms " ></font><em><font color= " #0000ff " size= " 3 " face= " comic sans ms " >Debra </font></em> ________________________________ From: Ethel Snooks <emsnooks@...> rheumatic Sent: Wed, March 23, 2011 9:50:58 PM Subject: Re: rheumatic Pulmonary Hypertension  ?Dr. has retired. rheumatic Pulmonary Hypertension > Is anyone in this group who has SD been diagnosed with pulmonary > hypertension? Also, I am trying to remember who had posted about seeing a > Dr. in Texas. > > > > ------------------------------------ > > To unsubscribe, email: rheumatic-unsubscribe@...! Groups > Links > > > Quote Link to comment Share on other sites More sharing options...
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