tmjtrans
10-23-2006, 01:48 AM
I have been on 80 mg of prednisone for dermatomyositis and have recently been reduced to 40 mg. At what point do some of the side effects (sleeping difficulty, facial swelling, excessive hair growth, etc.) go away? Do you have to be on a lower dose for them to decrease?
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kiwi girl
10-25-2006, 09:28 PM
Hi, sorry I can't help with your meds and I'm sorry to here of your condition. Please can you help me. 18months ago my child became seriously ill and we were basically told she had dermtomo.....
Exteme high ck over the 18 months, rash, muscle pain etc. Had EMG that show no doubt that the muscle are dying. Recently had biopsy which did show some eveidence that is connected with Dermo, but they are now saying due to high level of eveidence in her other tests, that the biospy should show more. Plus they found something else so said it is inconclusive. But are spending thousands to send the biopsy to another country to be tested. At the same time they have basically given her the brush off. i don't know what to make of it. she is still very unwell, but told them she feels good as neither of us new what to say. Can you please tell me what your tests were if you dont mind. Thanks so much. Good luck to you.
Exteme high ck over the 18 months, rash, muscle pain etc. Had EMG that show no doubt that the muscle are dying. Recently had biopsy which did show some eveidence that is connected with Dermo, but they are now saying due to high level of eveidence in her other tests, that the biospy should show more. Plus they found something else so said it is inconclusive. But are spending thousands to send the biopsy to another country to be tested. At the same time they have basically given her the brush off. i don't know what to make of it. she is still very unwell, but told them she feels good as neither of us new what to say. Can you please tell me what your tests were if you dont mind. Thanks so much. Good luck to you.
tmjtrans
10-26-2006, 12:21 AM
Sorry to hear about your child. I had EMG testing which also showed the muscles were deteriorating, confirming the diagnosis of dermatomyositis. I did not have muscle testing. I have been on the prednisone and have recently started taking Methotrexate for my condition. They were going to start IVIG injections, but I had a miracle and my CPK went from 4200 to 178 (normal!!!), so they started the Methotrexate instead of the IVIG. I am SO thankful.
Unfortunately, I don't know anything about juvenile DM...SORRY! I do see a rheumatologist. If it were my child and I was getting the brush off I would definitely seek a second (or third) opinion.
I hope you find answers soon!
Unfortunately, I don't know anything about juvenile DM...SORRY! I do see a rheumatologist. If it were my child and I was getting the brush off I would definitely seek a second (or third) opinion.
I hope you find answers soon!
kiwi girl
10-26-2006, 01:51 AM
Hey, Thank you. I was pretty sure that people were being diagnosed without muscle biopsy. Her CK was 16000 and so on. After having the EMG I would of thought they would have started treatment. Because it is so rear and we live in small country, no one really new what to do. She has had Consultant, who made the Diagnose in the first place. Rhuematologist, who said she wanted to pass my girl onto a Child Specialist as she did not know what to do. And then he did same thing, so she ended up with a Child Neurologist. So have had alot of different people. Was the treatment you were talking about, the Intravenous Blood product treatment? I was told about it and it is meant to be much kinder on the body than steroids. The body recovers quicker and does not have the same side effects. Keep in touch.:wave:
twinB
11-22-2006, 12:50 PM
80 mg. is a lot of prednisone...so is 40 mg. I think it will be hard to notice too much change until you are on a lower dose. At least, that has been my experience. I gained a lot of weight on 80 mg. Kept it at 40 mg. Also, had some mood changes, sleeplessness, round face, etc. It wasn't until I was off that the weight fell off. But, I had to really count the calories. It was hard in the beginning, but after awhile it became easy and I got down to my original weight. Somewhere I read that the body wants to retain water, but that drinking a lot of water would satisfy and help cleanse out toxins, etc. So, I drank a lot of water. It helped me. I wasn't as hungry. Hang in there.
twinB
11-22-2006, 12:52 PM
80 mg. is a lot of prednisone...so is 40 mg. I think it will be hard to notice too much change until you are on a lower dose. At least, that has been my experience. I gained a lot of weight on 80 mg. Kept it at 40 mg. Also, had some mood changes, sleeplessness, round face, etc. It wasn't until I was off that the weight fell off. But, I had to really count the calories. It was hard in the beginning, but after awhile it became easy and I got down to my original weight. Somewhere I read that the body wants to retain water, but that drinking a lot of water would satisfy and help cleanse out toxins, etc. So, I drank a lot of water. It helped me. I wasn't as hungry. Hang in there.
tmjtrans
11-26-2006, 12:34 AM
Thanks for that info! I am now down to 20 mg of prednisone and have lost a little puffiness in the face, but not much. Fortunately, I have not gained any weight (couldn't have afforded for that to happen:) ) and actually lost some. The bad thing is that my skin symptoms starting flaring when I hit the 40 mg dose and they have only gotten worse as I have continued tapering - this even though I am on methotrexate and plaquenil. My muscles are better, but I have traded for inflamed skin. Now I don't know what they are going to do.