Guest guest Posted June 21, 2008 Report Share Posted June 21, 2008 Aha!! I didn't even think of Raynaud's!! You are absolutely right!! Gosh, I feel like an idiot, being that I do medical transcription!! Thank you so much!! I will be sure and mention that when I go back for my follow up appointment whenever that may be. I am supposed to call back Tuesday for the test results. Hopefully they will be back by then. I am so anxious to get the results back. I would rather know than not know, ya know? I never thought about gangrene, but sometimes when it doesn't heal for months, it looks really nasty. I wear Band-Aids just to cover it up when I go out in public but try and keep them off when I am home alone. Makes you really dread the winter!! Thanks again so much. I will be sure and let everyone know what I find out. I am really leaning toward going with the clinical trials for the PF when I go back, cuz he said Imuran and prednisone are really the only drugs they know to give for PF, but they know it does not cure the disease and they are not even sure it helps at all, it is just all they know. I have already been on both of those for the last 6 months and all it did was make me shaky, moody, and FAT!! I think I would rather go with the clinical trials and take my chances. I have almost 90% made my mind up. Hopefully, things will go well. What kind of treatment do they give for scleroderma? Thanks again, Babs!! CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi Subject: Re: Caro/sclerodermaTo: Breathe-Support Date: Saturday, June 21, 2008, 4:54 PM Caro, what you're describing on your fingers could be Raynauds,another lovely AI issue. It usually goes right along with lupus andscleroderma. It's very important to keep your hands warm, especiallyin the winter. The tips can actually develop gangrene and that is NOTa good thing. I've lost small bits off the tips of a few fingers fromhaving them bust open and then not heal. Also beware of extreme hotwater. I've been dealing with the raynauds for a great many years too, andyou should see the lovely colors my hands can turn...I was once askedif I had dipped my hands in ink, they were so dark blue/purple. It's a circulation issue, so always keep your hands and feet warm. And yes, scleroderma can attack any organ in your body. Your skin isof course your largest organ and the one most associated withscleroderma, but it can cause serious problems with kidneys, lungs,heart, etc.My Mom died from complications of scleroderma after having mitralvalve repair surgery. The scleroderma had attacked her heart. Wedidn't have a clue that she had scleroderma until they found the heartproblem.So, best advice is to go see the Rheumy regularly, eat healthy, drinklots of water, and get proper rest. Keep your hands and feet warm, andmaybe have a circulation test done. I'm told I have "incompetent"veins...and I said to the lady who did the test "that's not the onlyincompetent thing about me"! LOL! I also blame my memory loss andanything that goes wrong in my day on "brain fog" caused by thelupus/scleroderma. Yes, it's an actual term they use for that foggyfeeling that can come over you. Happens to me quite frequently.The good news is that the older you get with these AI diseases thebetter your chance of fewer flares and a longer life.I'm here if you need me! :)Hugs!Babs in Texas> > > >> > > > Hi All,> > > >> > > > Sorry I haven't posted in a few days again, but I am back from> > > > Birmingham. Still don't know anything definite other than the> > > > diagnosis I already have of UIP. First when I got there, they did> > > > ABGs (OMG!! It hurt so bad!! I had it done once before and Ididn't> > > > even feel it, but not this time. She had to pry (her words)). Then> > > > I had to do PFTs, which showed 57% lung function, compared to the> > 68%> > > > I had in December. Next, I visited with the doc. Actually there> > > > were 2 docs. The first one was a fellow of Dr. de Andrade (who was> > > > the Assistant Professor). His name was Dr. , very nice guy.> > > > He took down all my history and said he thinks I may havepulmonary> > > > hypertension (which would explain the rapid heart rate). Hedid exam> > > > and then goes to discuss with Dr. de Andrade, who comes backin and> > > > again, very nice guy. He explains that it is very rare in a woman> > > > under the age of 50 to have pulmonary fibrosis and since Ihave been> > > > sick for 6 years already, even more rare, not unheard of, justrare.> > > > So I am a model case!! Anyhoo, due to this fact that I AM so rare,> > > > he thinks there is an underlying disease causing the PF, so I get> > > > blood work (10 tubes of blood) for various autoimmune diseases. He> > > > is leaning towards Sjogren's or scleroderma (mostlyscleroderma for> > > > which also there is no cure). Dr.. did a heart exam and> looked> > > > at the veins in my neck before talking to Dr. de Andrade whodecided> > > > I needed another chest CT (my last one was in February 2008), so I> > > > had that done (without contrast thank God!!) and also that Ineeded> > > > an ultrasound of my heart to check for blood flow to the heart and> > > > for any blockages to the valves. All in all, he said if Idon't hear> > > > from them in a week, to call them to get the results. Other than> > > > that, he didn't change any of my medications, except todecrease the> > > > prednisone even further to 10 mg a day. He said he wants me to get> > > > off the prednisone completely, so NO MORE STEROIDS!! YEAH!!!! I> > > > told him I had gained 20 pounds since being on them starting in> > > > January, and told him I have moon faces and he agreed.. Hesaid they> > > > want me lean and healthy and I did not need to be on that forsure.> > > > Any weight gain is out of the question, he said. He told me I have> > > > to keep moving. He told me to eat lean proteins, fruits, andveggies> > > > and no snacks. He PROMISED me the weight will come off. He said he> > > > expects me to lose 10 pounds rather quickly. I sure hope he is> > > > right, because I am miserable and I told him so, too!! He saidthere> > > > are no real medications to treat PF, and I knew that, but he said> > > > when I come back, I can decide either to go with the Imuran and N-> > > > Acetyl-Cysteine (NAC), which is all the best they know at thispoint> > > > to give patients with PF, or I can try an experimental drug> > (clinical> > > > trial), which I don't know what the side effects will be, but I am> > > > kinda leaning towards doing anyway, because I feel like even if it> > > > doesn't help me, it may help some other person with this stupid> > > > disease on down the road and it would be worth it. As for lung> > > > transplant, I don't yet qualify because my sats are not low enough> > > > and I am not on oxygen yet. Note that I said "YET." He saidthe key> > > > to prolonging oxygen use as long as possible is to stay as active> > and> > > > healthy as possible and that is what I am going to try and do.> > > > (my grandson) is here with me this summer, and he really> > > > helps to keep me motivated and I think I need that right now. Also> > > > the docs were really glad to know that I am in pulmonary rehab and> > > > that I am going to stay in the Wellness Program when I getdone with> > > > the rehab program. All in all, even though I did get some not so> > > > good news, I feel like I got some good news, also, so until next> > week> > > > or whenever I get the results, I am just trying to keep my self in> > > > exercise and health mode the best I can and keep going.> > > >> > > > So that was my Birmingham visit. My parents went with me and we> > > > really had a nice trip. I don't know what I would do without them.> > > > They have been my rock through all of this. Thank God for my Mama> > > > and Daddy!!> > > >> > > > I hope you all have a great week and now that I am back I hopeto be> > > > able to keep up with posts better and write more than I havebeen. I> > > > do reads all the posts and think of each and every one of you> > > > everyday. You are my air family and you are my rock, as well.Don't> > > > know what I would do without you guys, either!! I love you all!!> > > >> > > > Have a great day!!> > > >> > > > Caro> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted June 22, 2008 Report Share Posted June 22, 2008 I am tending to agree with you on the clinical trials. I talked to my oldest son about it tonight and he said whatever I decide he will back me up. At least I can talk to him about it. My daughter changes the subject every time I try and even bring up the disease. I finally asked her last night why she never wants to talk about it and she said cuz every time we do, I alway say something about dying and she doesn't want to think about it. I don't say something about "dying" literally, though I have said the docs said it is terminal and there is no cure. I told her that is just the way it is and she needs to accept it and she said she would rather not think about it. So much for support there. At least I have you guys to listen when I need an ear!! I think this group is my only sanity most days!! Without you guys, I would go BERZERKO!! CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi Subject: Re: Caro/sclerodermaTo: Breathe-Support Date: Saturday, June 21, 2008, 6:29 PM Caro, be sure and put a triple antibiotic ointment over the fingerswhen they open. Also, soak them in epsom salts in very warm water (nothot, it will hurt) and then let them air for a while before applyingthe antibiotic. This helped mine tremendously. Oh yes, it stings atfirst but really feels good afterwards.They treat scleroderma with immunosuppressants also. Prednisone,plaquenil, etc. Same old, same old. I use Aleve for my arthritis, and also take darvocet for pain. Thoseare the only western meds I use. I take fish oil, serrapeptase andprobiotics. I'm going to see a naturopath/MD soon. Chaz has beenseeing him and is very pleased with his results. I know my hormonesare wacky from the premature menopause and this Doc is well-known forhis alternative therapies.I think the clinical trials are your best bet. I've also taken all thestandards, i.e. prednisone, imuran and cytoxan. They did nothing tohelp me and caused so many more problems. I'm not an advocate of thosedrugs though there are some people who do well or ok with them.I'll be watching your posts for test results and what you decide onthe trials. I'm wishing you lots of luck and saying big prayers!Oh, and you're NOT an idiot! We can't know everything abouteverything.. ..I only know a little something about some things.... :)Hugs at ya!Babs in Texas> > > > >> > > > > Hi All,> > > > >> > > > > Sorry I haven't posted in a few days again, but I am back from> > > > > Birmingham. Still don't know anything definite other than the> > > > > diagnosis I already have of UIP. First when I got there,they did> > > > > ABGs (OMG!! It hurt so bad!! I had it done once before and I> didn't> > > > > even feel it, but not this time. She had to pry (herwords)). Then> > > > > I had to do PFTs, which showed 57% lung function, comparedto the> > > 68%> > > > > I had in December. Next, I visited with the doc. Actually there> > > > > were 2 docs. The first one was a fellow of Dr. de Andrade(who was> > > > > the Assistant Professor). His name was Dr. , very niceguy.> > > > > He took down all my history and said he thinks I may have> pulmonary> > > > > hypertension (which would explain the rapid heart rate). He> did exam> > > > > and then goes to discuss with Dr. de Andrade, who comes back> in and> > > > > again, very nice guy. He explains that it is very rare in awoman> > > > > under the age of 50 to have pulmonary fibrosis and since I> have been> > > > > sick for 6 years already, even more rare, not unheard of, just> rare.> > > > > So I am a model case!! Anyhoo, due to this fact that I AM sorare,> > > > > he thinks there is an underlying disease causing the PF, soI get> > > > > blood work (10 tubes of blood) for various autoimmunediseases. He> > > > > is leaning towards Sjogren's or scleroderma (mostly> scleroderma for> > > > > which also there is no cure). Dr.. did a heart exam and> > looked> > > > > at the veins in my neck before talking to Dr. de Andrade who> decided> > > > > I needed another chest CT (my last one was in February2008), so I> > > > > had that done (without contrast thank God!!) and also that I> needed> > > > > an ultrasound of my heart to check for blood flow to theheart and> > > > > for any blockages to the valves. All in all, he said if I> don't hear> > > > > from them in a week, to call them to get the results. Other than> > > > > that, he didn't change any of my medications, except to> decrease the> > > > > prednisone even further to 10 mg a day. He said he wants meto get> > > > > off the prednisone completely, so NO MORE STEROIDS!! YEAH!!!! I> > > > > told him I had gained 20 pounds since being on them starting in> > > > > January, and told him I have moon faces and he agreed.. He> said they> > > > > want me lean and healthy and I did not need to be on that for> sure.> > > > > Any weight gain is out of the question, he said. He told meI have> > > > > to keep moving. He told me to eat lean proteins, fruits, and> veggies> > > > > and no snacks. He PROMISED me the weight will come off. Hesaid he> > > > > expects me to lose 10 pounds rather quickly. I sure hope he is> > > > > right, because I am miserable and I told him so, too!! He said> there> > > > > are no real medications to treat PF, and I knew that, but hesaid> > > > > when I come back, I can decide either to go with the Imuranand N-> > > > > Acetyl-Cysteine (NAC), which is all the best they know at this> point> > > > > to give patients with PF, or I can try an experimental drug> > > (clinical> > > > > trial), which I don't know what the side effects will be,but I am> > > > > kinda leaning towards doing anyway, because I feel like evenif it> > > > > doesn't help me, it may help some other person with this stupid> > > > > disease on down the road and it would be worth it. As for lung> > > > > transplant, I don't yet qualify because my sats are not lowenough> > > > > and I am not on oxygen yet. Note that I said "YET." He said> the key> > > > > to prolonging oxygen use as long as possible is to stay asactive> > > and> > > > > healthy as possible and that is what I am going to try and do.> > > > > (my grandson) is here with me this summer, and he really> > > > > helps to keep me motivated and I think I need that rightnow. Also> > > > > the docs were really glad to know that I am in pulmonaryrehab and> > > > > that I am going to stay in the Wellness Program when I get> done with> > > > > the rehab program. All in all, even though I did get some not so> > > > > good news, I feel like I got some good news, also, so until next> > > week> > > > > or whenever I get the results, I am just trying to keep myself in> > > > > exercise and health mode the best I can and keep going.> > > > >> > > > > So that was my Birmingham visit. My parents went with me and we> > > > > really had a nice trip. I don't know what I would do withoutthem.> > > > > They have been my rock through all of this. Thank God for myMama> > > > > and Daddy!!> > > > >> > > > > I hope you all have a great week and now that I am back I hope> to be> > > > > able to keep up with posts better and write more than I have> been. I> > > > > do reads all the posts and think of each and every one of you> > > > > everyday. You are my air family and you are my rock, as well.> Don't> > > > > know what I would do without you guys, either!! I love you all!!> > > > >> > > > > Have a great day!!> > > > >> > > > > Caro> > > > >> > > >> > >> >> Quote Link to comment Share on other sites More sharing options...
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