Guest guest Posted February 28, 2010 Report Share Posted February 28, 2010 I have never known how to tell whether something is working. PG seems to go in and out of remission no matter what. I have had somne apparent success with topical steroids. I have tried both clobetasol and solumedrol this way. I finally have an underlying diagnosis, discovered after five years of PG (on and off). I have a non-Hodgkins lymphoma called Waldenstroms. I had suspected a lymphoma for a few years when I read about PG and knew I had Hodgkins in the mid 90s. I could not get my oncologist to do a bone marrow biopsy until my nephrologist insisted on it for determining the cause of my kidney failure. All of the things I have are extremely rare so I don't want to scare anyone into fearing that you might have cancer. Believe me, as you well know, PG is bad enough. But unfortunately, I do believe that it probably has an underlying cause even if that often goes undetermined. I don't know how broad a bone marrow finding can go to diagnose immune disorders, but they are virtually painless and safe. I don't know why it was so hard for me to get one, but I sure wish I could have before my kidneys were damaged.Please keep me in your prayers as my life is challenged with a constant stream of treatments and other appointments, I am not allowed to drive, and I am single. I have wonderful support from friends and church members.Blessings to you all,TinaPG 2004Subject: cyclosporin and pgTo: erythema_nodosum_Group Date: Saturday, February 27, 2010, 11:19 PM Luke or Jeff or anyone who has pg. cyclosporin didn't work for you. but is this usually the first line of defense. I have been on prednisone (doesn't work), plaquenil (didn't work), so now cyclosporine. It's all hit or miss isn't it? I haven't been on dapsone. Tried potassium iodide didn't work either. I really am in a bad way, mentally and physically. Quote Link to comment Share on other sites More sharing options...
Guest guest Posted February 28, 2010 Report Share Posted February 28, 2010 Tina, I am really sorry to hear all of this. I know you are a fighter, so keep at it. I think about all my friends here, especially the ones that suffer so, and that includes you, quite often. I know it is not easy. Sometimes when I think I have it bad, I think of you and others I know and remind myself to be more thankful. Possibly one " good " thing is that they found your underlying cause. Various forms of cancer can certainly be the cause of PG. I am not familar with Waldenstroms, but hopefully there are treatments for you and this in turn resolves your PG. jeff, pg, cd, imed > > I have never known how to tell whether something is working. PG seems to go in and out of remission no matter what. I have had somne apparent success with topical steroids. I have tried both clobetasol and solumedrol this way. > I finally have an underlying diagnosis, discovered after five years of PG (on and off). I have a non-Hodgkins lymphoma called Waldenstroms. I had suspected a lymphoma for a few years when I read about PG and knew I had Hodgkins in the mid 90s. I could not get my oncologist to do a bone marrow biopsy until my nephrologist insisted on it for determining the cause of my kidney failure. > Â All of the things I have are extremely rare so I don't want to scare anyone into fearing that you might have cancer. Believe me, as you well know, PG is bad enough. But unfortunately, I do believe that it probably has an underlying cause even if that often goes undetermined. I don't know how broad a bone marrow finding can go to diagnose immune disorders, but they are virtually painless and safe. I don't know why it was so hard for me to get one, but I sure wish I could have before my kidneys were damaged. > Please keep me in your prayers as my life is challenged with a constant stream of treatments and other appointments, I am not allowed to drive, and I am single. I have wonderful support from friends and church members. > Blessings to you all, > Tina > PG 2004 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2010 Report Share Posted March 5, 2010  Thank you Tina for replying to my message. Indeed this PG certainly is mystery. I am to start cyclosporin next week and am hoping that will help, but with PG it's all hit and miss isn't it. I am now on morphine for the pain which is at least an 8 on a scale of one to ten. Let's keep in touch. I too am single and feel very much alone in all of this. I am so sorry to hear about your troubles. How did your kidney failure occur? I don't quite understand that part. I will keep you in my thoughts. cyclosporin and pgTo: erythema_nodosum_Group Date: Saturday, February 27, 2010, 11:19 PM Luke or Jeff or anyone who has pg. cyclosporin didn't work for you. but is this usually the first line of defense. I have been on prednisone (doesn't work), plaquenil (didn't work), so now cyclosporine. It's all hit or miss isn't it? I haven't been on dapsone. Tried potassium iodide didn't work either. I really am in a bad way, mentally and physically. No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.733 / Virus Database: 271.1.1/2712 - Release Date: 02/26/10 11:39:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 5, 2010 Report Share Posted March 5, 2010 Tina and , I too have endured multiple PG outbreaks.. but was successfully treated with Cyclosporine, steroid injections, and topical Tacrolimus. The Cyclosporine regimen required close monitoring of kidney and liver functions and I encourage you to be vigilant about that!! Over a period of a year or so after the Cyclosporine treatments stopped, all of my ulcers healed and no new ones emerged :-) I consider myself very lucky :-) While I have developed other autoimmune diseases, I enjoy a good quality of life and am blessed!! My best wishes to you both -- and remain optimistic! Kathy PG since 2001 Psoriasis Nodular Episcleritis AutoImmune Ear Disease > > > > Subject: cyclosporin and pg > To: erythema_nodosum_Group > Date: Saturday, February 27, 2010, 11:19 PM > > > > Luke or Jeff or anyone who has pg. cyclosporin didn't work for you. but is this usually the first line of defense. I have been on prednisone (doesn't work), plaquenil (didn't work), so now cyclosporine. It's all hit or miss isn't it? I haven't been on dapsone. Tried potassium iodide didn't work either. I really am in a bad way, mentally and physically. > > > > > > > > > > > ------------------------------------------------------------------------------ > > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 9.0.733 / Virus Database: 271.1.1/2712 - Release Date: 02/26/10 11:39:00 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 6, 2010 Report Share Posted March 6, 2010 Dear Kathy,As we all certainly know, there are more mysteries than answers in all of this. But as best as I can figure, the kidney failure is because of the damage which occurs from an abnormal protein of Waldenstroms, and because of the after effects of the very strong chemo (and then radiation) I had for Hodgkin's, which had me on death's door back in the mid 90's . I feel very blessed to have had the wonderful extra years that I did have since 1996 til I got pg in 2004. and even 2004 til now has had plenty of quality (and still does). Thank you for your prayers and replies,Tinapg since 2004Waldenstrom's, macroglobulinemia, Hodgkin'sJust curious: What diagnostic code and description do any of you have for pg? Mine is 692.9, for Skin Inflamation. Is that all ther is my friend?Subject: Re: pg TinaTo: erythema_nodosum_Group Date: Friday, March 5, 2010, 3:20 PM Tina and , I too have endured multiple PG outbreaks.. but was successfully treated with Cyclosporine, steroid injections, and topical Tacrolimus. The Cyclosporine regimen required close monitoring of kidney and liver functions and I encourage you to be vigilant about that!! Over a period of a year or so after the Cyclosporine treatments stopped, all of my ulcers healed and no new ones emerged :-) I consider myself very lucky :-) While I have developed other autoimmune diseases, I enjoy a good quality of life and am blessed!! My best wishes to you both -- and remain optimistic! Kathy PG since 2001 Psoriasis Nodular Episcleritis AutoImmune Ear Disease > > > From: lochnersonia <slochner@.. .> > Subject: [erythema_nodosum_ Group] cyclosporin and pg > To: erythema_nodosum_ Group@yahoogroup s.com > Date: Saturday, February 27, 2010, 11:19 PM > > > > Luke or Jeff or anyone who has pg. cyclosporin didn't work for you. but is this usually the first line of defense. I have been on prednisone (doesn't work), plaquenil (didn't work), so now cyclosporine. It's all hit or miss isn't it? I haven't been on dapsone. Tried potassium iodide didn't work either. I really am in a bad way, mentally and physically. > > > > > > > > > > > ------------ --------- --------- --------- --------- --------- - > > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 9.0.733 / Virus Database: 271.1.1/2712 - Release Date: 02/26/10 11:39:00 > Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 7, 2010 Report Share Posted March 7, 2010 Thank you so much Kathy for your encouraging words of help re cyclosporine. I am happy for you that that it worked and it gives me some hope. If all goes well meaning that my bloodwork is good I will start the cyclosporine on Wednes. I know everyone is different but how long did it take for you to notice that the drug was working. I know the lesions can take a long time to heal, but I am hoping the cyclo will stop new lesions from forming and stop the growing of the ones I already have. On my legs and arms I have about seven ulcerating and growing lesions ranging in size from 2 X 3 inches to 3 X 4 inches. I am a great curiosity to the wound care nurses at the clinic who come in to dress these wounds. Thanks again, . cyclosporin and pg> To: erythema_nodosum_Group > Date: Saturday, February 27, 2010, 11:19 PM> > > > Luke or Jeff or anyone who has pg. cyclosporin didn't work for you. but is this usually the first line of defense. I have been on prednisone (doesn't work), plaquenil (didn't work), so now cyclosporine. It's all hit or miss isn't it? I haven't been on dapsone. Tried potassium iodide didn't work either. I really am in a bad way, mentally and physically. > > > > > > > > > > > ----------------------------------------------------------> > > > No virus found in this incoming message.> Checked by AVG - www.avg.com > Version: 9.0.733 / Virus Database: 271.1.1/2712 - Release Date: 02/26/10 11:39:00> No virus found in this incoming message.Checked by AVG - www.avg.com Version: 9.0.733 / Virus Database: 271.1.1/2724 - Release Date: 03/05/10 05:26:00 Quote Link to comment Share on other sites More sharing options...
Guest guest Posted March 8, 2010 Report Share Posted March 8, 2010 , I was on Cyclosporine for several months... and initially the only thing I noticed was that no additional ulcers formed. You need to be patient :-) It is not a quick cure.. but I believe it calmed down my immune system greatly!! Some of my ulcers took a year to fully heal - and they all left serious scars, which are becoming less noticeable over time!! I continued to get steroids shots around the edges of the ulcers and applied the tacrolimus cream while on Cyclosporine. I also used a topical antibiotic as I had developed a secondary infection in one ulcer .. My very best wishes to you and others suffering from this terrible disease - there is hope however!! Regards, Kathy > > > > > > From: lochnersonia <slochner@> > > Subject: cyclosporin and pg > > To: erythema_nodosum_Group > > Date: Saturday, February 27, 2010, 11:19 PM > > > > > > > > Luke or Jeff or anyone who has pg. cyclosporin didn't work for you. but is this usually the first line of defense. I have been on prednisone (doesn't work), plaquenil (didn't work), so now cyclosporine. It's all hit or miss isn't it? I haven't been on dapsone. Tried potassium iodide didn't work either. I really am in a bad way, mentally and physically. > > > > > > > > > > > > > > > > > > > > > > ---------------------------------------------------------- > > > > > > > > No virus found in this incoming message. > > Checked by AVG - www.avg.com > > Version: 9.0.733 / Virus Database: 271.1.1/2712 - Release Date: 02/26/10 11:39:00 > > > > > > > > > ------------------------------------------------------------------------------ > > > > No virus found in this incoming message. > Checked by AVG - www.avg.com > Version: 9.0.733 / Virus Database: 271.1.1/2724 - Release Date: 03/05/10 05:26:00 > Quote Link to comment Share on other sites More sharing options...
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