I'm a newbie and not feeling so great!! Any advice would be greatly appreciated!

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slm6
Regular Member


Date Joined Aug 2010
Total Posts : 50
   Posted 11/24/2010 5:46 AM (GMT -6)   
Well I was diagnosed with SLE about 6 months ago after my third spinal surgery didn't improve. Now it's believed the surgery wasn't necessary it was possibly a Lupus flare up that was making an already damaged area worse. I have about 3 okay days out of 7 now. Flare up's are often. Photosensitive as well. I'm taking Medrol 4mg 2 to 5 times a day. Depending. I take Vicodin for the pain, but very limited. I work in a high stess physical job and it seems to really be doing a number on me. Probably the reasons for all the flair ups!! I was also told I have Myositis in my neck area. The typical pains in joints and muscles. I get a butterfly rash often. I go in usually once a month for a shot to get the flare under control but it only works for so long. Wondering about a different medicine that will control things better without the crazy side effects. I also have Epilepsy so I have to somewhat be careful with what I take there. Thanks for any advice!!

Lupus, Spinal Stenosis, Epilepsy, Myositis

Medrol, Kepra, Ambien, Vicodin, Vitamin D

aimsgirl16
Veteran Member


Date Joined Jun 2008
Total Posts : 1470
   Posted 11/24/2010 5:52 PM (GMT -6)   
Welcome to the forum! You have found a great place to ask all the questions you want :)! I am sorry you are feeling so bad! Did i miss something or are you not taking any "lupus" medication. Such as Cellcept, Imuran, plaquenil, or methotrexate to name a few? Is it because of the epilepsy? If you can take one of those, you probably should. They lower your immune system so that it stops fighting the good organs in your body!! Is the shot you go for once a month prednisone or a diffent medicine??
Amy
Kidney Diseases & Disorders and Lupus Moderater
Cyclosporine, Prednisone, Lisinopril, Integra Plus, Vitamin D 50,000 units
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram, Darvocet, Zofran

If God brings you to it, he will get you through it!!

slm6
Regular Member


Date Joined Aug 2010
Total Posts : 50
   Posted 11/25/2010 8:51 AM (GMT -6)   
Thanks Amy! I was in the understanding that the Medrol was for the Lupus. Yes the shot is a form of prednisone. It gives a little boost and the Medrol gets it back to bearable. I'm not sure if my RA wants to give it a while and see if the Medrol can control it or what. From what I understand it is where you start at. Medrol is used to treat inflammation from Lupus or RA. I'm ready to try something else and start feeling better. I haven't had a day without pain from this in over a year. Some days are much worse and others are okay. Thanks for the advice. That was what I was looking for. Have a great Thanksgiving!!

aimsgirl16
Veteran Member


Date Joined Jun 2008
Total Posts : 1470
   Posted 11/25/2010 9:42 AM (GMT -6)   
Medrol is used to treat inflamation but is generally prescribed with something else and with hopes of being able to come off the medrol completly. What dose of medrol do they have you taking? I know in the US, most of the time, people are started on plaquenil. Can you ask about that? It generally has low side effects and will take a few months to feel some benefit from but a lot of times helps people tremendously! Sometimes while waiting for the plaqunil to kick in, prednisone (or medrol) is used to keep things bearable!!!

Are you seeing a rhuematologist??
Amy
Kidney Diseases & Disorders and Lupus Moderater
Cyclosporine, Prednisone, Lisinopril, Integra Plus, Vitamin D 50,000 units
PRN: Imitrex, hydrocodone, Ambien, Flexeril, Ultram, Darvocet, Zofran

If God brings you to it, he will get you through it!!

slm6
Regular Member


Date Joined Aug 2010
Total Posts : 50
   Posted 11/26/2010 7:16 PM (GMT -6)   
Yes I am seeing a rhuematologist. I'm taking 4mg 2 to 6 times per day. Depending on the flareup. It only helps moderately. I will definitely have to ask about the Paquenil. Something needs to change to make things a little more bearable. I'm no stranger to pain with my spinal problems but this is getting stupid!! I appreciate your time and advice, it helps to read about other people going through similar problems. I have a great family but don't like to complain about my "issues". It sounds like you have your fair share of health issues. Thanks so much for sharing!!

slm6
Regular Member


Date Joined Aug 2010
Total Posts : 50
   Posted 11/28/2010 7:51 PM (GMT -6)   
Thanks for the advice Possi. I'm sorry you are so "lucky". I will definitely talk to my RA about another type of med. I have also heard those type of horror stories about steroids and definitely don't want to become another statistic. I will keep you in my prayers tonight.
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