Been feeling a little down as I went into the clinic with worsened pain and fatigue. The doc put me in over night and put me on high dose steroids and IV pain meds to try and get the pain down and nothing worked. My labs are all normal as well so can I still be in a flare even though my labs are normal? I have been on treatment now for almost 4 months and there has been very little change or I start seeing change and I get set back....I have had a headache now for 12 days straight and its starting to wear on me. Its hard as I am sorta doctoring in two places as our town is so small it doesnt have the up to date stuff as the bigger hospitals so we have to go back and forth. Thankfully my local doc is starting to get the ball rolling as my other doctors didnt want to see me for a while. The next step they are talking about is cell cept.... anxiously awaiting to figure out what they are going to do. I would love to have a day with little to no pain!
I’m so sorry you’re in pain. Sometimes I think there’s nothing worse. I, too, have been on high dose steroids and it doesn’t always work. Perhaps, unfortunately, you need more momentarily. I’ve been on Cellcept, but it had an adverse effect on me. I hope it helps you. I wonder why you’ve been experiencing a headache for twelve days. Be sure to tell the doctors. Again, I’m sorry you’re in so much pain. I’ve been there and I know how terrible and hopeless it can feel. Try to hang in there and keep us updated as to how you’re doing. Be well, Kim
Some pain meds will have headaches as a side effect your Dr may need to change it be sure to tell him. This time it took 4 days before the prednisone started working for me. I hope you are better soon
Hi Louters,
Sorry to hear you feeling like this and in so much pain but sometimes medications don't always help some Lupus suffers and i'm one of those besides a few more on the site.
Fingers crossed there's something to help you.
((Hugs Terri)) xxx
I am so sorry about your pain and the headache! Your doc should look at your brain to be sure there’s no inflammation going on there. I have headaches that are like migraines but they burn. These are a vascular migraine and do not respond to pain meds. My doc does a phenergan drip IV. Sometimes he will put Toradol with it as its an anti-inflammatory. You may want him to try that. Also, blood work is not a guarantee. I have been flaring really bad with obvious visible symptoms with negative test results and have felt good at times with awful labs. So… just lusten to your body and jerp pushing your physicians. I hope you get some relief soon! Hugs-Tina
I have talked to my doctor about these headaches, as I would only have them on and off but after a week of the same one and it never letting up. I went in to check everything out. They have done more than enough CTs and MRIs and nothing has showed up. SIGH! They tried everything they could without any results in the hospital so he is going to see if Physical therapy will help as he waits to hear from my neurologist. Thanks for all the encouraging words it nice to hear from people who are going through the same thing!
Hi Louters,
Sorry nothing showed for you regarding the headaches but in another way it's still good news.
If you have any form of Arthritis that can also cause pain to the head, then there's migraines which Lupus causes.
This bit of info may help you but seeing a neuro also will hopefully get things confirmed. :)
Lupus Headache
People with lupus experience headaches which are unrelated to their lupus, i.e., sinus headache, tension headache and bone spurs from osteoarthritis. Approximately 20 percent of patients with SLE experience severe headaches which are related to the disease and known as lupus headache.
- The lupus headache phenomenon is similar to migraine and may be seen more often in people who also have Raynaud's phenomenon.
- SPECT scans indicate abnormalities in blood vessel tone or the ability of a vessel to dilate or constrict.
- Lupus headache is treated like tension headaches or migraine, although corticosteroids are occasionally useful.
http://www.lupus.org/webmodules/webarticlesnet/templates/new_aboutaffects.aspx?a=102&z=0&page=2
Louters said:
I have talked to my doctor about these headaches, as I would only have them on and off but after a week of the same one and it never letting up. I went in to check everything out. They have done more than enough CTs and MRIs and nothing has showed up. SIGH! They tried everything they could without any results in the hospital so he is going to see if Physical therapy will help as he waits to hear from my neurologist. Thanks for all the encouraging words it nice to hear from people who are going through the same thing!
Please watch high doses of steroids and don't stay on them too long. My cousin had Lupus and was on steroids and it killed her immune system which left her volunable to cancer and she died from it two years ago.
Oh no! I am so sorry to hear of your loss!
My doctor is very good about watching how much steroids they give me. After the high dose steroids I got over night he said it was only causing my sugars to rise and there was no need to continue them and put me back on the 20mg. I have a local doctor and I see specialty doctors at Mayo Clinic. I believe if my local doctor had his way I wouldn't be on them at all as it doesn't help me in any way......