Just Diagnosed with IgG4 Sclerosing Disease
Posted , 2 users are following.
Hi Everyone
I was just diagnosed about 5 weeks ago and my case is so complicated that it has taken more than 6 years to finally find this diagnosis. I am type 1 diabetic on an insulin pump and have many complications just as a result of that and can not take any type of steroids so my rheumatologist has put me on Methotrexate and that is really causing me to have really bad leg pain, it's like deep in my bones. I take 3 pills every Monday and the pain will last for about 4-5 days so my question is if anyone knows if this is normal ? If anyone knows of something I can try to minimize the pain I would greatly appreciate it.
0 likes, 2 replies
steve88741 GinaMarie510
Posted
Hi Gina,
?I have had similar problems but without the insulin dependence. I was able to take steroids but they affected my day to day life badly, after a bit of experimentation with steroid spareres we started using methotrexate and found that injecting worked best as you got a better 'fix' from a smaller dose and the aftereffects lasted a shorter period of time. I inject on a Thursday afternoon knowing that I will wake up with the aches, just as you describe them on Friday morning but it would all be over by Friday evening. I know that's not a very scientific solution, but it does work.
GinaMarie510 steve88741
Posted
Hi Steve
Thank you so much ! I have my next appointment with my rheumatologist next month and I am going to ask her if I can try it that way because wow this is the worst pain to have to deal with on a daily basis with all my other complications, I have severe spine degeneration and neuropathy plus a host of other issues. I can't take the steroids because for 1. They brings my blood sugars above 700 and right now they can't even get them under control as it is and 2. I get a skin reaction from the steriods but I'm not sure why they just said I was allergic to them. I don't know if there is another treatment option for this disease and my doctor did not really explain much about it to me other than it was rare . Thank you again for responding it's nice to be able to talk to other people about it, I'm glade to hear that the injections are working better for you and I will let you know what my doctor says. Hope your having a nice week !