Clickable: LUPUS INFORMATION & LUPUS RESOURCES.
Co-Moderator: Lupus and CFS Forums
In His Grip
AlwaysRosie "We can't control the waves, but we can learn how to surf!!"
Co-Moderator - Lupus Forum
UCTD, Hashimotos, Inflammatory Bowel, Inflammatory Arthritis
Clickable Links: Lupus Resources Lupous.Org Lupus Criteria (4 of 11) Lupus Chapter Locator
UCTD, Inflammatory Arthritis, Crohns, Diverticulosis, Sjogrens
Welcome. I will say something I am not sure anyone else did- moon face depends on the person. I get it at 5mg. Actually I gain 10lbs the first week I am on 5mg of prednisone. But I have been an abnormal case all along. I will never live like I did before I became ill. Of course I can't recall what I lived like since I was so young. What I can do is do things that make me happy and give me a chance to be part of the world. I am in grad school and doing well. I may not take many in person classes, but I manage. I am having a baby any day now, some people thought it would not be possible. I may not work, but I do things that help people whenever I can. I have the hope of working someday, but have accepted I am not likely to ever be able to handle a full-time job. You figure out what you can do without making yourself worse and you run with it. You sleep more, rest when you need to, and follow your doctor's orders. We all do the best we can. I may be miserable some days, but I am alive. That is more than I can say for a couple of my family members. So long as I do what my doctor recommends I have a chance to have a normal life span and will be able to enjoy almost anything I want to do. You cannot go on as if you are not ill, but there are so many ways to adapt.
I want to give you hope and encouragement rather than telling you the bad. A few people around me try to remove all my hope and if I listened to them I would give up. (Family members) This place is wonderful because someone on here will understand what you are going through and we all will offer support and a place to vent when it gets to be too much. Never let someone tell you that you can't do this or you can't do that unless they are saying that because doing it would endanger your life or health and they are an expert with enough knowledge to KNOW what they are talking about. I had many tell me I couldn't do college but in 3 1/2 years I had a bachelors with high honors and had been accepted at EVERY SINGLE grad program I applied to. People tried to tell me I couldn't possibly have a baby safely, yet after careful research into the issue and doctors I am 35 weeks and the biggest problem is water retention and high blood pressure- problems perfectly healthy women have. My baby is doing fine. The people saying these things were not experts, they were people who had not a clue what they were talking about but who assumed they knew enough from a few paragraphs of outdated info.
Make sure you get a bone density scan soon and one in a year if you stay on pred long term. I say this because if you have the bone density loss side effect the faster they catch it the more they can do to prevent it from becoming serious by giving you bone builders and more calcium.
Congrats on the weight loss, I will be trying to lose weight after the baby comes.
Post Edited (redrose77) : 4/26/2008 1:42:45 PM (GMT-6)
thanks for the encouragement and advice, jules and redrose.
I am currently down to 9 mg of pred, maintaining my weight loss (it bottomed out at 14 pounds). My husband and my mom think I shouldn't lose any more or I'll look sickly. I'm just holding my breath knowing that it might not last. I wasn't really overweight before, but now I feel better about how I look. (I'm 43, so being 5'4" and 127 lbs feels really good for someone my age.)
jules, my raynauds is really bad, too. I'm curious how much warmer weather will affect it. I'm not encouraged by how my fingers blanch when I enter a heavily air-conditioned room lately.
I, too, have a space heater at work, in my classroom (I'm a teacher.) My headmaster recently gave me permission to wear gloves while teaching. It was funny. I hadn't asked him for permission. I just did it so I could cope. I guess he knew I could reference a disability law if he didn't.
My biggest challenge now is getting back on the treadmill. I was walking for 15 min (it's not much but it's all I could manage) every morning, but lately I've been SO TIRED and cranky. I sleep as late as possible these days. I'm looking forward to summer break like never before.
Post Edited (Heartsong) : 4/25/2008 3:53:45 PM (GMT-6)
I'm fromm SOUTH AFRICA and recently moved from our countryside GREYTOWN (KZN MIDLANDS) to Durban (JANUARY 2008) and was healthy as a horse. In February 2008 I found swelling in my finger joints, pain in my knees and ankle. It was painful BUT not excruciating were i was not mobile. I kept on taking anti biotics, but the relief only lasted a few weeks.
On the 23 August 2008 I visited the GP and she forced me to have a blood sample drawn. My ANEs were of and my EPK was 1280. I was in shock not knowing what it was. I thought it was RA. I was refered by a friend to a RHEUMATOLOGIST on the 06 September 2008 (42 in our country to help a population of 45 million). In 10 mins she diagnosed me with MCTD (RA, LUPUS and Scleradxerma). At 37 in peak health, a fitness freak, playing league soccer and riding a quad bike weekly, I was devastated.
She put me on 30mg PREDS daily. A week earlier I started fasting (me being MUSLIM). At 3 am I took the PREDS and started feeling well. Next meal at 17:30. I developed a wheeze in my lower right lung which I laughed of. darn..... by the 20 September 2008 I had no more strength to even climb into bed. I phoned the DOC and she told me I had POLYMYOSITIS. On the 23 September I was admitted to hospital and given IV SOLU MEDROL. On the 25 September at 14:00 I was discharged and given a dose of METHA TREXATE 2.5mg
That night while playing with my daughter I felt my chest getting heavy. I started struggling to breathe and then started coughing up blood. At 23:30 that night I back in hospital. I WAS IN PANIC MODE THINKING I'M DYING. The DOC suspected a LUNG EMBOLISM. In the morning, lung scans, x rays and CT scan and more.....BLOOD TESTS. I was released on the 24 September , taken of the METHA TREXATE and put on to IMURAN (AZAPRESS) 50mg and PREDS 30mg.
One month later at my next check up I'm mobile, able to drive, walk a bit but nothing strenuous. I walk on the beach with my kids and appreciate all that GOD has given me. My IMURAN is up to 75mg and my PREDS dose is lowered by 5mg every second week. Physically I am a bit weak, I have an OFF and ON pain above my shoulders, can't handle spicy food, got he shakes, get tired easliy BUT MOBILE>
To all out there, I argue with my creator daily......LOL. But as someone said there are pepple out there WORSE OFF, and remember GOD only gives diseases to the STRONG. The weak won't handle it!
UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)