mcquillen

Close Sarcoidosis

i,ve been sick for over six years now. docs finally figured it out to be sarcoids over a year ago and in November 2007 was diagnosed with neurosarcoids. been on many meds and have been through many doctors. nothing seems to help the pain or symptoms, they told me i have a very resistant strain, that usual meds are not working, it has remained highly active and destructive, and that it will take many years until i will have relief!

Treatments

Feldene Not Working

inflammation drug didn't work--neither did cataflam

Acetazolamide Somewhat Helpful

helped reduce headache from increased spinal pressure but made my numb hands and feet actually burn with pain

Aciphex Working / Worked

for heartburn

Calcium Too Soon to Tell

extra for what the steroids deplete from my system

Folic Acid Working / Worked

taken everyday except the day i take methotrexate

Hydroxychloroquine Somewhat Helpful

did help joint pain, but for me they had me on too many meds after this drug that i discontinued them all myself

Ibuprofen Working / Worked

pain

Lamictal Not Working

for headaches-just caused more dry mouth!

Medrol Somewhat Helpful

another steroid!!!!!

Methotrexate Not Working

extremely tired, sarcoids progressed to neuro while on treatment

Mobic Somewhat Helpful

for arthritis

Neurontin Not Working

makes you so tired that you cant even hold your head up with this drug at the doses i used i wasnt awake enough to know how i felt

Oxycodone Working / Worked

pain med

Pamelor Not Working

docs said it made neurontin work better and just make me all around feel better. did nothing but make my dry mouth worse and i think it depressed me even more

Pepcid Working / Worked

sorta works

Prednisone Working / Worked

it's just a quick fix, with many side effects, joints, swelling, and breathing improve, but i wish to be off of them but the pain without them is unbearable

Remicade Not Working

started in April with infusions every 2 weeks, moved to every 4 weeks--was on it until my daughter was born stillborn probably from medications I take--never got off steroids--So in the 6 months I recieved this medication I showed no improvement and lost a baby! They said it was safe in pregnancy--they were wrong--hope this doesn't happen to anyone else on this drug!

Synthroid Working / Worked

for hypothyroidism

Topamax Not Working

was for migraines--just caused nose bleeds

Xopenex Working / Worked

breathe without the shakes of albuterol

Wrist Splint Not Working

I wear for carpal tunnel and neuropathy, I do not like to wear them and feel my hands are still numb--no matter what!

Iron Too Soon to Tell

taking for loss of blood--find out this week if it's been working--on it 6 weeks now

Lyrica Somewhat Helpful

Just increased my dose again, it is helping but not keeping pain at bay from dose to dose, i currently take this med for nerve pain from neuropathy

Lidoderm Too Soon to Tell

Daypro Somewhat Helpful

started this med about 3 weeks ago, take it twice a day for arthritis, it is reducing the pain but not taking it completely away

Triamcinolone Topical Too Soon to Tell

using on sarcoid lesions, time will tell if it is working

Ultram Not Working

Was on this early 2 years ago and the doctors wanted to give it another round

Duragesic Patch Too Soon to Tell

Starting this patch--hoping the pain will go away

Close Bereavement
Type: Loss of a Child

I lost my daughter 6 weeks ago. She was born- stillborn. I delivered her and held her, even had her baptised. I was only allotted 4 hours with her. I miss her terribly and need someone to talk to who has lost a child. I miscarried a child 5 years ago, but that was not even close to the pain I feel now. All I have are a few pictures and her footprints. I miss her so much, please someone help to deal with this.