RE: dapsone and plaquenil

[Guest guest]

Hello MihaelaI did have very nasty side effects on the Plaquenil also and had to cease treatment.  I have been on prednisone every day for six years, and the dose has to be increased with every flare up, the slowly weaned back down.  The lowest does I can get to is 5mg per day and that only just holds the EN under the surface.  Every time I try to wean to a lower dose or withdraw the EN flares, and each time the flare gets worse and harder to bring under control.  There are side effects to prednisone, obviously and over the years I have developed many other conditions as a result of it.  I have had three stomach surgeries, and the result of the last scope is that it is too dangerous to operate again, so this has to be managed with Nexium (omeprazole?) and other medications and is being monitored closely.  I also have Reynauds, which results in constant infections in my toes, and in the last two years have suffered quite nasty urinary tract/kidney infections.  I am now awaiting an appointment with a Urologist, as my Immunologist feels the EN/panniculitis may be in the urinary tract also.  My immune system is severely compromised and I no longer have the ability to fight infection and I am told this is a direct result of long term use of steroids.  So, I would certainly not recommend prednisone as a long term treatment to anyone, years ago they were great for me, a short high dose, weaning down and then off them within a couple of weeks and it would stop the EN flares.  But when the EN started to occur in my lungs, stomach/oesophagus/bowel as well, and became more frequent, the only drug to bring it under control was the prednisone.  I do have an as yet undiagnosed (13 years) sero-negative, multi system inflammatory auto immune disorder, and all biopsies have been ‘non specific’ that is panniculitis/EN.  Long term use of steroids has resulted in failure of my adrenal glands to produce natural steroids (’s disease).  So, while you are young, and your body still has fight, I would really read up on this forum and the notes to try and find a ‘natural’ way for your to control you EN sweetie, I know quite a few on here use ice and support stockings, elevate the legs and rest.  I am told rest, rest, rest is the key!!  I live in Australia and when I got my first flare of EN, no-one knew what it was and most doctors haven’t heard of it.  I have a specialist immunologist four hours south of here, and they were not afraid to try me on many, many drug therapies, I trusted them thinking I had no other choice…………how wrong I was L  Never feel bad asking questions love, had I been more informed earlier on, I would not be in this situation now.  Never be afraid to question treatment either, it is your body, and your future.  Trudi From: erythema_nodosum_Group [mailto:erythema_nodosum_Group ] On Behalf Of Mihaela PetreSent: Saturday, 28 January 2012 5:05 AMTo: erythema_nodosum_Group Subject: Re: dapsone and plaquenil Hi,Trudi, Thank you so much for your reply.I have seen my doc today.She told me to stop dapsone but keep the plaquenil for the 5th month.Did you have problems with plaquenil as well? What I know is that I should check my eyes every 6 months.And Im also worried about hais loss... How often do you get the erithema? And have you taken the prednisone every day for 6 years?Im afraid to take it because I had a digestive hemorrhage in the past(most probably because of taking augmentin without a stomach protector) . Please forgive me im bothering you with all these questions, but I feel a bit lost and I trust the people in the group much more than any doctor... All the best to you, Mihaela To: erythema_nodosum_Group Sent: Friday, January 27, 2012 1:02 AMSubject: RE: dapsone and plaquenil Hi Mihaela,Unfortunately I have also tried the Plaquenil and Dapsone, the Dapsone causing dangerous side effects, sudden and severe neutropenia. I have been unable to have any of the ‘auto immune’ type drugs without severe side effects. I am only able to tolerate prednisone (steroids) which I have been on for six years. Not the best option, but the only one available to me. It keeps the EN under control though. Wish I had better answers for all of you,Trudi From: erythema_nodosum_Group [mailto:erythema_nodosum_Group ] On Behalf Of Mihaela PetreSent: Friday, 27 January 2012 6:21 AMTo: erythema_nodosum_Group Subject: dapsone and plaquenil Hello to you all, I have had idiopathic EN since April 2011.They come and go in an unusual way-they last about a week,not more, but then reappear very soon.I have already taken plaqueni(hydroxichloroquine)l for 4 months and dapsone for 3 months. I know these meds have loads of side effects and my latest blood tests weren't so good because of the dapsone intake.I am wondering if any one else has taken this medication and for how long...In my case it seems to help, the lumps are getting less scary, but they still appear and im afraid to continue the treatment.Doctors should know better when to stop it, but I don't really trust them anymore... I really wish all of us could find a magic cure and get rid if this EN....Good luck to everybody! Mihaela To: " erythema_nodosum_Group " <erythema_nodosum_Group > Sent: Thursday, January 26, 2012 10:05 PMSubject: Re: Hello Hi Carmen sorry to hear this disease has infected another person. I am new to this too. I found out I had EN a year ago. Has a zillion tests done and when all was said the dr said " well 50% of people don't know why they get this " . Well you could have told me that BEFORE I spent all this time and money!! either way I found out what I don't have!! My bout has last this entire last year. Somethings help but it never really goes away. Good luck to you!! Barb To: erythema_nodosum_Group Sent: Wednesday, January 25, 2012 10:06 PMSubject: Hello My name is Carmen. I am new to this group but not to EN. I had my first bout with EN at the end of 2008 and into 09. It lasted a full six weeks and I had lingering pain for longer. It was by far the most painful thing I have ever experienced! It was two years before I got it again which was last year in november. Again lasting six weeks but far less painful that time. And finally I just got it for the third time last week and am in the begining stages as we speak.I have never met anyone else with EN and have been curious about other peoples experiences. After reading some of the messages on here I guess my fist question would be : Do I need to ask my Doc to do testing for underlying causes. I am 25 and in otherwise good health and have thus far trusted the doc to decide if testing was necessary. I have read all the many different causes and have always thought my triger was getting sick. which has happened about a week before each outbreak. I can't help but wonder if there is something else going on.