well im home from school for the wekend and went to my rheumy. she said the rash is most likely from the humira and im not taking at ever again, it didnt help anyway havnt been on it for a month and im no worse off. she also didnt have any new drugs for me to try she said she hasnt had succes with her patients on orencia and that she doesnt want to try rituxan on her younger patients until there is more info on it. SO im back to enbrel. it didnt help much before, but i think it did do somthing. im also taking mobic, and hopefully will be tapering off the prednisone, im at 10 now and she wants me down to 5 when i next see her the week of thanksgiving. i told her about my wierd hair pain and she has NO clue what it is, she was like maybe its an infected hair follicle or a sore neck, but its for sure not. She didnt mention anything lupus related, but i think at some point it will come up again as a possibility but who knows, i have a bumpy rash on my face, interstitial cystitis, stomach issues, hair pain, headaches, mouth sores, nausea, wierd pains that arent always my joints, extreme fatigue, all sorts of things, im convinced they will come up with a new disease for me to have at some point its just a matter of time lol whatever ill wait no hurry i dont want it anyhow lol
so yea not a very helpfull visit, but she did what she could she just didnt have much else to try on me at least she believes me and saw inflamationSorry to hear that in any case I hope the enbrel works better this time. best wishes.Oh and enjoy your weekend from school and hopefully it's a pain free weekend.Mermaid, I've been doing some reading and a tender scalp or painful hair can be a sign of Giant Cell Arteritis. Usually only found in older people. I think it would be worth bring up to someone.
Have you ever thought of getting a second opinion?
Great advice so far, all I can do is wish you better luck on the embrel this time around. How long were you on it the first time?
Try to enjoy your weekend and get plenty of rest Hi L'ilMermaid! Since you've exhausted all other possibilities, maybe now is
a good time to take a serious look at Antibiotic Protocol Therapy (AP). You
can stay on the Enbrel while you start it and it just might work. It works for a
lot of people. What do you have to lose?
http://www.roadback.org
The Road Back...I have hair pain on occasion. Normally when i wake up, It feels as if the roots are tender and the pain is quite intense if I touch it. Not sure what the cause is though.I dont know if i did exactly AP stuff. But years ago i did go on antibiotics for close to a year cause my mom realized that whenever i was sick and on antibiotics ai felt bettter. so she told the doc and he let me try it. it did help me for a while
ugh i just woke up andmy joints are AWFULL
Mermaid -
AP works long time but you need to stay with it. There are things you can do to help it along so it doesn't fail. Like for me, I really needed probiotics. Big Time. So that means I proabably had an underlying systemic yeast infection. If you weren't on large doses of probiotics the antibiotic would have appeared to start to fail.
Please lurk on the Roadback for a different perspective.
And hope.
Hugs,
Pip
i did use probiotics, i dont remember how much but without my stomach was so screwed up. they took me off though they were worried about me being on the antibiotics for so long and it wasnt working the same as it used to ill look around there and see what i think, im on antiobiotics so much though from sinus infections and stuff. Once when i was about 10 i did them for 6 months cause my sinus infection would not go away, did tons of diff kinds it was not fun.AP can take a long time to work. Depends on what myco's you have, how long you've been ill, how long your immune system was suppressed. You were on once for 6 month and once for a year - but not continually. I'm not trying to push you into it...it's just you're older now and and read and evaluate studies etc. I was saying that I agreed with GoGo - go lurk on the Roadback and learn. If you think Enbrel is not going to work as well as before - maybe it can buy you time until AP kicks in.
Does that make sense?
Just want you to feel better.
Pip
Little Mermaid - you and I could be siblings separated at birth. I too suffered from chronic sinus problems, then noticed I always felt incredibly better after antibiotics (10-14 day courses). I would then go a couple of years, build up to another huge sinus infection, take antibiotics, feel better, ad nauseum.
Two years ago I started suggesting to my doctors that perhaps I was suffering from an infection, but my blood work didn't support this, so they would not go down this road with me.
Then I developed a fungal infection in my mouth (diagnosed by a Haitian MD in the "bad part" of town, I was that desparate), and I slowly starting thinking I was suffering from an infection with a fungal component.
This was after my MCTD/RA/lupus/rhupus/scleroderma/polymysitis ad nauseum dx depending on what differential rheumatic doctor I presented myself to a little over a year ago.
Now, after six weeks on AP minocin antibiotic therapy prescribed by a medical family practitioner with an open mind, and reading about mycoplasmas and the "fungal fluid" found in the linings of joints, I am almost 100% convinced that all this bizarreness of symptoms is infection, fungal based, and might finally be on the right combo of drugs for my condition. And I had scarlet fever (strep) when I was 3 years old and probably was given penicillin (1959). Scarlet fever used to end in death of rheumatic heart disease before antibiotics were discovered.
This systemic disease blew up for me approximately seven years ago after a major neck injury - I just truly fell apart, healthwise. It took me six years of doctors, testing, studying, and personal objective observation of my own physicial self to begin to figure this out.
Good luck and never give up, because the patient is the best doctor when it comes to knowing that something is terribly wrong, even if the "tests" don't add up to the right medical coding box.
PS I am now reading that mycoplasmas are the basis transportation unit for germ warfare. If I disappear from posting, the MIB came knocking.
You have been given a lot of great advice...think about it. I just want you to be able to live as a young person. Hope it all settles down for you.
Oh hun I'm sorry that appt. didn't turn out better. :( I'm not gonna preach again about how much you sound like a Lupus patient.Mermaid,
I am with Pip and GoGo. Give AP another try. But, you really need to do your homework for it to work for you. Taking milk thistle helps with the liver issues as well.
Also, what is your diet like? I know how I ate in college!
Please don't forget the importance of rest either. I know you have alot on your plate right now with classes but you aren't doing yourself any favors if you burn the candle at both ends!