I’m just really happy today. I saw my rheumy today and I can continue along with my tapering of Prednisone. I will be starting 10 mgs next week. I am coming down from 70mg. This is probably the best news I’ve had in a little while. Prednisone is awful and I hope I can taper completely off of it.
She recommended I get an iron infusion also for my iron deficiency. Has anyone had an iron infusion? Any issues/ side effects with it?
Another question is after tapering from Prednisone were you able to lose the excess weight? I also have really awful stretch marks from the Prednisone, do these marks go away as the dosage gets smaller.
Any answers or suggests to help get rid of the marks would be greatly appreciated. Thank you
I too am on prednisone, and hate its side effects but love what it does. I have had several Venefor (check that spelling) infusions. I found that I wasn't really even aware of how my low iron level was effecting me but the iron infusions made me feel like I had more energy. Not a vast improvement, but unfortunately I received the protocol during one of my sickest times ever. I hope you have great success with it. It was almost a year ago, so I don't remember everything,, but I don't remember having any negative side effects. Congrats on lowering you prednisone dose.! I've been trying that for years. I can't seem to do it, Im not giving up though.
That's great you will be tapering. I tapered down from 60 mg, but I did it only 5 mg at a time every two weeks. I had been on it for 2-1/2 yrs and previous attempts were really difficult. I have more pain when I'm not on prednisone, but I just didn't want that in my body. As for weight loss, I lost the puffiness, but not necessarily any weight...I was really bummed about that. Don't know about stretch marks. Best of luck to you and be patient! It will be worth it.
Thank you all for your responses. I’ve been having trouble getting my iron up. I’ve tried the oral, IV and still not much improvement. So infusion was recommended. I’m glad there weren’t any major side effects. Maybe I’ll just suck it up and do it.
I am on my way down on prednisone as well. I was at 10mg and I have to go down 1 mg every month. My doctor told me that our bodies naturally make about 5mg, so when I get to the 5mg mark I would be at the point my body would naturally make. So I really only have about 2 months to go! :D I to got horrible stretch marks and they are still there. I also cant tell if the weight loss is from other things or the prednisone, I for sure loss alot of the puffiness.
I got stretch marks, but they eventually faded away. th only remnant I have is that my neck skin is all floppy. my face looks like I'm 40 and my neck looks like I'm 70. from the big moon face. I sometimes daydream about getting plastic surgery...
As a bit of encouragement, I am completely off prednisone and have been since 2007. I was very very sick with SLE. congestive heart failure, kidney failure, anemia, pleurisy, menstrual problems, joint problems, fever, hair loss, unable to eat (this happens with every flare. I've had 3 flares). I taper down REALLY slowly. If the doc says go from 40 to 30, I go from 40 to 39 for a few days, then to 38 for a few days, then 37, etc. I've done the big leap down as suggested once or twice, and the withdrawal was so awful, I felt like I had the flu. So I taper down really really slowly so my body has time to adjust. Yes you can lose the weight. I am at my normal weight. I'd like to lose 10 pounds, but so would just about every person on the street. I tap dance (had to work my way up to that! I started by just walking to the stop sign and back. and bounced gently on a mini trampoline- feet not even leaving trampoline- to clear my lymphatic system out. then I swam, then did richard simmons videos, starting with just one song, then adding on slowly. Now I tap dance!).
they key for me was diet change. I eliminated gluten, dairy, eggs, shellfish, and artificial sweeteners. I eat leafy greens every day, and take 2 high quality non-synthetic fish oil caps every day.
BTW for anemia, I got shots of procrit for 6-8 weeks. that helped me a lot.
oh i also do chi gung. it's very easy. you have to do healing chi gung, not "warrior" chi gung. it builds up your life force. it's a lot like tai chi. you can learn a simple short routine in a few lessons then do it at home for free.
I never lost the steroid weight, and unfortunately I have been on and off them so much in the past 20 years. I was a amazing 130 lbs, now I’m way over 300
Good luck with that and I wish you all the besth ,it is hard to loose weight dealing with trying to loose weight ,we have enough to deal with lupus the weight and the predisone ,
Great to hear, you are starting on the titration down from Prednisone. I hear ya Sista! on the weight. I was diagnosed last weekend Brachial plexus neuropathy of my left arm. I have decreased sensation and strength of my left arm. Neurology and Rheum agree that it is lupus related. I started on 60mg Prednisone, and I am distressed about the weight I have gained thus far since before the increased dose of Prednisone. I am praying the weight will come off once the prednisone is stopped.
I work as an ER nurse, if you have concerns or questions about medications, speak to your pharmacist or physician information that you have read about Iron IV infusion. The other, there is a great website called Micromedex we use this site a lot in the hospitals.
As for the stretch marks, if you find out let me know. :-)
