Guest guest Posted June 16, 2005 Report Share Posted June 16, 2005 > Message: 15 > Date: Thu, 16 Jun 2005 05:54:51 -0000 > > Subject: 8 months and getting worse > Hi All I have been reading a lot of your posts trying to figure things out. I am now going on 8 months with EN, and I am just wondering how long some of your cases have been lasting. I have been taking Prednisone, however I stopped it two days ago, and over 10 new bumps have appeared in the last two days. I read about the and bandages and tomorrow I am going to purchase some of those. Just looking to speak with someone who might be in the same boat as myself. > Take Care > Eryne > OK - Hi Eryne! I can understand your frustration. I have had EN for around 30 yrs now, and was told there was nothing but bedrest to prescribe. In '83 or '84 I finally found a DR who treated it - with gout meds, but they worked! That was tolectin and colchicine, and they worked great - then they were dropped from the market - even for gout sufferers. So - in comes prednisone - now, understand, under NON chronic conditions, this is very good drug, helps things heal faster. But EN is a CHRONIC disease - hence the problems. Long term use of steriods can lead to many problems, including the one where your natural recovery system stops, because the pred has taken care of it for so long. Includes: sagging and thinning skin (called " steriod skin " by nursing staffs), weight gain is also common. I gained over 30 pounds during this last course of pred. The longest lasting lump I have ever had ended about mid May of 05, it had started in April of 04! Problem was that when I would start to taper down the prednisone, it would move over slightly (about 1/4 inch) and flare right back up. The Dr was frustrated as was I! nothing would stop it - I was up to 20 mg of pred 3 times a day at the end and finally it was gone (well almost, there's still a small hard lump under the skin of my left arch). Over a year for just one! It was finally decided that prednisone was no longer doing the job Do hang in there! there are other meds - just started on Salsilate 1500 mg twice a day now, then, if that doesn't work, we'll try the Saturated Salts of Potassium Iodide. It's all just a matter of elimination - keep trying until you find what works, but first - get a good Rhuematologist! Blessings to all, Kay Quote Link to comment Share on other sites More sharing options...
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