Got diagnosis last week and upped my Methotrexate+
I went in to see my Rheumatologist last Tuesday. She said based on all my labs and every other test I've had done (seems like I've had so many!) that I have SLE (which my dermatologist said back in july when she biopsied the indented nodule on my now wasting left hip) and my rheum said she suspects I still have RA and Reynauld's Syndrome along with the lupus. IS that possible??
She upped my Methotrexate dose to 6 tablets per week, which I started Sunday. I had taken 6 treatments at 3 pills a week. She kept my other treatments the same, I'm also taking Plaquinil 100 two times a day, mobic, gabapentin (at bed time only) and prednisone twice a day. I feel like a pharmacy but have begun to notice small improvements in my level of fatigue and some of my pain. After being on the methotrexate 6 pills therapy for 3 weeks I get to begin tapering off the prednisone. Prednisone was the first med I started taking that actually began to help me but it has wrecked my complexion!
The MRI of my lumbar spine was normal. I still have to see the spine specialist because he said if the MRI was normal I would need some nerve conduction test to help diagnose the cause of the muscle waste which has really gotten bad in my left hip- he thinks this is due to nerve damage. The terrible burning pain in my back and hips isn't as bad as it was before my treatments began but I cannot believe the lumbar spine mri didnt show anything. I thought the back pain might be due to all the kidney stones a fairly recent catscan found but the urologist insists that they dont hurt unless you are passing them and none of mine at that time were obstructing or out of the kidneys. Honestly though the pain gets so bad at times I don't even know if I will know if when I pass a stone because I'm so ued to it burning and stabbing in my lover back and abdomen as it is. There is a huge inflamed area right above my tailbone. Been there for a few years now! My entire torso (abdomen and back) hurt all the time, my joints hurt and are stiff. All my joints pop and crack like crazy, fingers and wrists being the worst. In fact it feels like all over me things are constricting. odd spasms, such as in ankles before they get cold and go numb.
Anyway, I guess I'm just posting here because I needed someone to tell these things to. It seems like people dont get how awful I feel because I dont necessarily look sick. The fatigue is so bad. Last Feb09 I had pneumonia and didnt even go to the doctor for forever bacause I feel so fatigued and so much pain constantly I didnt even realize how sick I was.
I now have less days when it is so severe as i did before my treatments began but even now it seems the bad days feel really bad. This has been quite a tedious process for diagnosis. Besides the obvious pain I'm telling you about here, I think the worst thing is the fatigue. It really has had a major impact on my quality of life. Some days I cant even help my 6yo with her homework by the end of the day or read to her at bedtime. (for the record I've been extremely active my entire life-used to run 5-7 miles a day, did roller derby, lifted weights, coached cheer, work full time teaching,etc, didnt eat fast food for years, whole foods organic etc) now getting dressed is a chore some days.
How long did you take plaquinil before you noticed marked improvements? I think I've only been on that one for about 4 weeks.
I do apologize for this post being so lengthy. I feel like my girlfriend is sick and tired of hearing me complain. I'm a single mom, but share custody with her father. As much as I want to have her all the time, I cant imagine how I would make it. Again, I apologize if my post sounds pathetic. I feel pretty pathetic a lot of the times. People seem like they think I can just snap out of this. And truth of the matter is that if I could have snapped out of this I would have two years ago when it all seemed to really start going downhill for me health wise.
I'm loosing weight even on the sterroids. Co workers joke saying why cant they get an auto immune process to loose weight. It's not a funny joke at all. I dont like feeling like I'm withering away and I doubt the whole in my hip where my muscle is now gone will ever look remotely normal. For the record I'm a 35 year old female at 103 pounds.
Okay, enough of my rambling on about how bad I feel. On another note, even the small improvements I'm having are giving me hope.
Re: Got diagnosis last week and upped my Methotrexate+
I hope you feel better....we all need to vent now and then. Are you sure you are taking 100mg of plaquenil? Most lupies take 200mg twice a day. Plaquenil can take up to 6 months to work. I know some find great relief when it kicks in. I didn't see much difference. I used to think it helped keep my skin under control but the last few months I've had nothing but skin issues. I've had 3 biopsies in 3 weeks....2 on Friday.
The fatigue is the worst part of lupus for me too. I could deal with the pain but the fatigue really impacts on my quality of life. In addition to lupus I have FMS, raynaud's, scleraderma, sjorgren's.....autoimmune diseases tend to travel in packs. Three years ago I was diagnosed with non-Hodgkins lymphoma. I spend much of my life going from doc to doc and test to test. I'm lucky to have a very supportive husband.
I try to take it day by day. I rest when I can and put off what I can do today until tomorrow (when I might feel better). My house isn't spotless and we eat a lot of take out. I try to save energy for my grandchildren.
So take care of yourself and let me know how you are doing.
Last edited by heidiclouser; 01-26-2010 at 06:19 PM.
Re: Got diagnosis last week and upped my Methotrexate+
Originally Posted by heidiclouser
I hope you feel better....we all need to vent now and then. Are you sure you are taking 100mg of plaquenil? Most lupies take 200mg twice a day. Plaquenil can take up to 6 months to work. I know some find great relief when it kicks in. I didn't see much difference.
You are correct. I am on plaquilil 200 twice a day. I just took it an noticed- don't know why I thought it was less. So many pills. Thank you for taking time to reply. I almost deleted the post because I felt greedy for takin up so much board space. You sound like you've really been throught it! I'm sending you vibes! I'm woth you on saving energy for things in life that really matter and I'm trying to learn to stop sweating the small things (house etc). Time w my daughter is most important. Thank you again for sharing your experience and taking time to answer my post.I started plaquinil in december so sounds like I have a way to go to see results. I'm holding onto hope it'll help. Have a blessed day!