Guest guest Posted May 21, 2008 Report Share Posted May 21, 2008 Oh Joyce, I don't know what to say but OUCHHH OOOOIIEEE. I am so sorry. I think some rebuking is in order here. Peggy, ipf 6/04 Florida  ♡Happy moments, praise God.Difficult moments, seek God.Quiet moments, worship God.Painful moments, trust God.Every moment, thank God. I saw the dermatologist today. He is a University doctor and I was impressed. He took pictures of the "rash" that now covers about 70% of my torso, is on my arms and legs and even on my scalp. It itches and peels and looks gross. He took two biopsies from my back and I have stitches which are a little hurty tonight. I do now have oral and topical medication. He put a rush on the biopsy, so I should know something soon. He believes that it is a Lupus Rash, but I think it is a reaction to the increased dosage of Flolan. I have never had a rash with my Lupus because rash is not an issue with systemic Lupus, usually. His rationale is that my Rheumatologist stopped Cellcept without good cause and my body is getting an agressive assault from my immune system. When I got home the Flolan nurse called to see how I was doing and I asked her. She said the rash was not uncommon to Flolan use. So, it could be either. I just want it to go away. Enough already. Just another exciting day spent in a wheelchair seeing yet another doc. Just wears us out. Hugs, Joyce D.Pulmonary Fibrosis 1997   Bronchiectasis 2004   Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 21, 2008 Report Share Posted May 21, 2008 Joyce, Well at least you should have some answers soon. How long do they think it will take the meds to start making a difference? I can't imagine how miserable you are feeling with this. UGH! I'm still praying my friend! Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Ouch!!! I saw the dermatologist today. He is a University doctor and I was impressed. He took pictures of the "rash" that now covers about 70% of my torso, is on my arms and legs and even on my scalp. It itches and peels and looks gross. He took two biopsies from my back and I have stitches which are a little hurty tonight. I do now have oral and topical medication. He put a rush on the biopsy, so I should know something soon. He believes that it is a Lupus Rash, but I think it is a reaction to the increased dosage of Flolan. I have never had a rash with my Lupus because rash is not an issue with systemic Lupus, usually. His rationale is that my Rheumatologist stopped Cellcept without good cause and my body is getting an agressive assault from my immune system. When I got home the Flolan nurse called to see how I was doing and I asked her. She said the rash was not uncommon to Flolan use. So, it could be either. I just want it to go away. Enough already. Just another exciting day spent in a wheelchair seeing yet another doc. Just wears us out. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2008 Report Share Posted May 22, 2008 Hi Joyce, I am so glad you finally got to see someone. You have been waiting so long it is unreal. Hopefully you will hear from the biopsy soon. At least he put a rush on it for you and that is a good thing. You are in my thoughts and prayers and I so wish you a wonderful day soon. Hugs from me --CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi Subject: Ouch!!!To: Breathe-Support Date: Wednesday, May 21, 2008, 7:42 PM I saw the dermatologist today. He is a University doctor and I was impressed. He took pictures of the "rash" that now covers about 70% of my torso, is on my arms and legs and even on my scalp. It itches and peels and looks gross. He took two biopsies from my back and I have stitches which are a little hurty tonight. I do now have oral and topical medication. He put a rush on the biopsy, so I should know something soon. He believes that it is a Lupus Rash, but I think it is a reaction to the increased dosage of Flolan. I have never had a rash with my Lupus because rash is not an issue with systemic Lupus, usually. His rationale is that my Rheumatologist stopped Cellcept without good cause and my body is getting an agressive assault from my immune system. When I got home the Flolan nurse called to see how I was doing and I asked her. She said the rash was not uncommon to Flolan use. So, it could be either. I just want it to go away. Enough already. Just another exciting day spent in a wheelchair seeing yet another doc. Just wears us out. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2008 Report Share Posted May 22, 2008 Caro, Thanks for your well wishes. I am sore today from the biopsies. They are just a couple of holes about the size of pencil erasers. But, if I lean back against them or stretch they sting like fire. I am itching so badly on my back which is almost totally covered. It hurts to scratch and I can't reach back there anyway. I now have splotches everywhere except my face and hands. I can still get out in public if I dress like an Amish girl. Lots of those in my neck of the woods, so I fit right in. When you deal with autoimmune diseases, it is always something. I know there are people who think that I am a hypochondriac. My health history is so complicated. There are others on this board who are in the same boat. Thanks again, Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2008 Report Share Posted May 22, 2008 Joyce....bless your little heart. At least you are waiting for a result now....my grandmother and her sister both had lupus. And my mother. GM had rashes when she got too much sun.....she walked around town with an umbrella in the hot Central Oregon summers. The kids teased her something awful. "Old lady with the umbrellas sort of thing". Could you have gotten too much sun? She also had the systemic. Which is worse? Lupus or Flolan? I hope you are getting some relief from the stuff the dr gave you. You're right, another exciting day. You must be getting used to 'excitement' and life would be dull without it! Kidding of course. Keep on keepin' dear heart! Mama-Sher, age 69.IPF 3/06, NSIP 4/08 OR. Don't fret about tomorrow, God is already there! Ouch!!! I saw the dermatologist today. He is a University doctor and I was impressed. He took pictures of the "rash" that now covers about 70% of my torso, is on my arms and legs and even on my scalp. It itches and peels and looks gross. He took two biopsies from my back and I have stitches which are a little hurty tonight. I do now have oral and topical medication. He put a rush on the biopsy, so I should know something soon. He believes that it is a Lupus Rash, but I think it is a reaction to the increased dosage of Flolan. I have never had a rash with my Lupus because rash is not an issue with systemic Lupus, usually. His rationale is that my Rheumatologist stopped Cellcept without good cause and my body is getting an agressive assault from my immune system. When I got home the Flolan nurse called to see how I was doing and I asked her. She said the rash was not uncommon to Flolan use. So, it could be either. I just want it to go away. Enough already. Just another exciting day spent in a wheelchair seeing yet another doc. Just wears us out. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2008 Report Share Posted May 22, 2008 Joyce, OUCH is right....Oh Joyce where is my magic wand when I need it. One wave and it would all go away. I can't imagine anyone thinking you are a hypochondriac and if there is such a person that is just ignorance not to mention lack of compassion. Do they think you'll get some relief from the medications they gave you? I know I always say this but you remain in my prayers every single day. And you are always in my heart. Love, Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Re: Ouch!!! Caro, Thanks for your well wishes. I am sore today from the biopsies. They are just a couple of holes about the size of pencil erasers. But, if I lean back against them or stretch they sting like fire. I am itching so badly on my back which is almost totally covered. It hurts to scratch and I can't reach back there anyway. I now have splotches everywhere except my face and hands. I can still get out in public if I dress like an Amish girl. Lots of those in my neck of the woods, so I fit right in. When you deal with autoimmune diseases, it is always something. I know there are people who think that I am a hypochondriac. My health history is so complicated. There are others on this board who are in the same boat. Thanks again, Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2008 Report Share Posted May 22, 2008 I agree with Beth, Joyce. No way anyone could think you are a hypochondriac. You are one of the bravest people I know and I am proud to know you. I wish I could take all your pain away. Please hang in there and hopefully things will get better soon. I am glad to see you still have your sense of humor and that means a lot. I know it is hard but we are all hear behind you 100%CaroASTHMA 1976,OSTEOARTHRITIS 2002, COPD 02/06, IPF 08/07, UIP 01/08, RHEUMATOID ARTHRITIS 03/08Mississippi Subject: Re: Re: Ouch!!!To: Breathe-Support Date: Thursday, May 22, 2008, 5:12 PM Joyce, OUCH is right....Oh Joyce where is my magic wand when I need it. One wave and it would all go away. I can't imagine anyone thinking you are a hypochondriac and if there is such a person that is just ignorance not to mention lack of compassion. Do they think you'll get some relief from the medications they gave you? I know I always say this but you remain in my prayers every single day. And you are always in my heart. Love, Beth Age 48 Fibrotic NSIP 06/06 Change everything. Love and Forgive Re: Ouch!!! Caro, Thanks for your well wishes. I am sore today from the biopsies. They are just a couple of holes about the size of pencil erasers. But, if I lean back against them or stretch they sting like fire. I am itching so badly on my back which is almost totally covered. It hurts to scratch and I can't reach back there anyway. I now have splotches everywhere except my face and hands. I can still get out in public if I dress like an Amish girl. Lots of those in my neck of the woods, so I fit right in. When you deal with autoimmune diseases, it is always something. I know there are people who think that I am a hypochondriac. My health history is so complicated. There are others on this board who are in the same boat. Thanks again, Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2008 Report Share Posted May 22, 2008 MB, He gave me prescription strength antihistimine. Well, we all know what that does to most of us. I am supposed to take one in the morning and two at night. I took one last night and I was not awake to take the second. I could barely get out of bed this morning. I hurried to get all my morning bath, etc. so that I could take another pill and black out. I finally took it after lunch and had an afternoon of unconsiousness. I just took my first night one.....so I may fade away here shortly! The steroid cream stops the incessant itching, at least for awhile. I will just wait for answers. Thanks for prayers and thanks for thinking of me. I need all the "poor babies" that I can get. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 >> Joyce,> OUCH is right....Oh Joyce where is my magic wand when I need it. One wave and it would all go away. I can't imagine anyone thinking you are a hypochondriac and if there is such a person that is just ignorance not to mention lack of compassion. Do they think you'll get some relief from the medications they gave you? I know I always say this but you remain in my prayers every single day. And you are always in my heart.> Love,> Beth > Age 48 Fibrotic NSIP 06/06> > Change everything. Love and Forgive > > > > > > Re: Ouch!!!> > > Caro, > Thanks for your well wishes. I am sore today from the biopsies. They are just a couple of holes about the size of pencil erasers. But, if I lean back against them or stretch they sting like fire. I am itching so badly on my back which is almost totally covered. It hurts to scratch and I can't reach back there anyway. > I now have splotches everywhere except my face and hands. I can still get out in public if I dress like an Amish girl. Lots of those in my neck of the woods, so I fit right in. > When you deal with autoimmune diseases, it is always something. I know there are people who think that I am a hypochondriac. My health history is so complicated. There are others on this board who are in the same boat. > Thanks again, > Hugs, Joyce D.> > Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 > Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 > .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 22, 2008 Report Share Posted May 22, 2008 Joyce, whether it is flolan or lupus i hope you know soon and get reief from this itching, I think it is worse than pain, you should know you have experienced evrything, I will be praying for you Love Geeta - In Breathe-Support , " Joyce " wrote: > > > Caro, > > Thanks for your well wishes. I am sore today from the biopsies. They > are just a couple of holes about the size of pencil erasers. But, if I > lean back against them or stretch they sting like fire. I am itching so > badly on my back which is almost totally covered. It hurts to scratch > and I can't reach back there anyway. > > I now have splotches everywhere except my face and hands. I can still > get out in public if I dress like an Amish girl. Lots of those in my > neck of the woods, so I fit right in. > > When you deal with autoimmune diseases, it is always something. I know > there are people who think that I am a hypochondriac. My health history > is so complicated. There are others on this board who are in the same > boat. > > Thanks again, > > Hugs, Joyce D. > > Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension > 2008 > Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected > for Transplant 2006 > .....I will not forget you. Behold, I have engraved you on the palm of > my hands. Isaiah 49: 15-16 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2008 Report Share Posted May 23, 2008 Thank you Geeta, Hopefully, there will be a biopsy report today. I am not getting much relief from the steroid cream or the antihistimine oral med. I am so afraid that it will get into my eyes, etc. So far, it is not on my face or hands. So, I can cover the rest up. Aaaaargh !!!! Hugs, Joyce D. > >> > > > Caro,> > > > Thanks for your well wishes. I am sore today from the biopsies. > They> > are just a couple of holes about the size of pencil erasers. But, > if I> > lean back against them or stretch they sting like fire. I am > itching so> > badly on my back which is almost totally covered. It hurts to > scratch> > and I can't reach back there anyway.> > > > I now have splotches everywhere except my face and hands. I can > still> > get out in public if I dress like an Amish girl. Lots of those in > my> > neck of the woods, so I fit right in.> > > > When you deal with autoimmune diseases, it is always something. I > know> > there are people who think that I am a hypochondriac. My health > history> > is so complicated. There are others on this board who are in the > same> > boat.> > > > Thanks again,> > > > Hugs, Joyce D.> > > > Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary > Hypertension> > 2008> > Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) > Rejected> > for Transplant 2006> > .....I will not forget you. Behold, I have engraved you on the > palm of> > my hands. Isaiah 49: 15-16> >> Quote Link to comment Share on other sites More sharing options...
Guest guest Posted May 23, 2008 Report Share Posted May 23, 2008 Joyce, I think you could do with a little less "excitement " in your life! I am itching just reading about your ordeal. I am glad you liked the dermatologist and hope he comes up with some answers for you. Can you take the cellcept with the Flolan? God bless you- Sarcoid/PF 3/2006 California Ouch!!! I saw the dermatologist today. He is a University doctor and I was impressed. He took pictures of the "rash" that now covers about 70% of my torso, is on my arms and legs and even on my scalp. It itches and peels and looks gross. He took two biopsies from my back and I have stitches which are a little hurty tonight. I do now have oral and topical medication. He put a rush on the biopsy, so I should know something soon. He believes that it is a Lupus Rash, but I think it is a reaction to the increased dosage of Flolan. I have never had a rash with my Lupus because rash is not an issue with systemic Lupus, usually. His rationale is that my Rheumatologist stopped Cellcept without good cause and my body is getting an agressive assault from my immune system. When I got home the Flolan nurse called to see how I was doing and I asked her. She said the rash was not uncommon to Flolan use. So, it could be either. I just want it to go away. Enough already. Just another exciting day spent in a wheelchair seeing yet another doc. Just wears us out. Hugs, Joyce D.Pulmonary Fibrosis 1997 Bronchiectasis 2004 Pulmonary Hypertension 2008 Mixed Connective Tissue Disease (Lupus, RA, Sjogren's, etc) Rejected for Transplant 2006 .....I will not forget you. Behold, I have engraved you on the palm of my hands. Isaiah 49: 15-16 Quote Link to comment Share on other sites More sharing options...
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