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Regular Member

Date Joined Aug 2005
Total Posts : 289
   Posted Yesterday 10:11 PM (GMT -6)   
I guess I have had just a bit more time to process things and am wondering now what I need to know overall.  I actually don't have a definitive diagnosis but just Autoimmune Inflammatory Arthritis.  They say at some point the bloodwork will vere one direction or another.  Basically, I am told either Lupus or RA or even both because of the butterfly rash.  Here is my question, I have had problems for nearly 15 years maybe even more.  I already have significant destruction in the bones of my feet.  I am only 31.  The prednisone doesn't work like it used to but it is definitely still considered significant improvement in my eyes and makes life bearable.  I was talking to the doctor yesterday about how in 15 years I don't think I will be walking and she said that I was being optimistic.  I kinda felt and knew this but now it feels so real, but it is still possible even with significant damage that I can walk 15 years from now right?  They didn't elaborate, they just said they were sorry.  Are they just going on stats of people who start with problems so young and progress so quickly.  They did call this progressive are there other levels?  What can I expect with Methotrexate can it stop the progress or only slow it down?  Since I am one that can withstand a significant amount of pain (still went to work even when I could only take 1/4 inch steps at a time) does that mean anything?  Are there any tips, suggestions, ideas?  Is there surgery for the feet?  The affected joints are feet, ankles, knees, hips, wrists, and starting in the hands?  How do I tell if my jaw is affected it hurts and feels tight but when I hurt I bite down hard all the time, not really grinding but I think enough to bother the jaw.  I told them nothing was wrong with my jaw but I think I might have been mistaken.  Does my case sound severe?  Severe enough for them to say I was being optimistic about walking in 15 years?  Can anyone tell me about clubbing of the fingers and toes?  They said my finger tips are clubbing which indicates pulmonary disease.  I do smoke and am going to quit, but they said it could be from the inflammatory disease aswell?  Anyone else have this?  Can someone help me with this, it seems to have actually hit me and now I am a bit scared.
Thank you all for responding to my last post too.
Thank you
dx: Systemic Juvenile Rheumatoid Arthritis: otherwise known as Adult onset Still's Disease. Asthma, hypertension, hypothyroid
Meds: Indomethacin TID, Neurontin 600mg, Maxair, Advair 250/50, Diovan HCT 160mg/25mg QD, Synthroid .1mg QD, Women's One a Day,  Ultram PRN.

Veteran Member

Date Joined May 2006
Total Posts : 1179
   Posted Today 6:33 AM (GMT -6)   
hi thersa, i am no expert and really cant answer your questions. hopefully someone will come around soon that can. i just felt your fear, concern, and confussion in your post and i just want to give you a big (((((((HUG)))))))).

funny i just visited my friend with RA the other day and she is in a wheelchair or uses double crouches and she was telling me where to go to get these supplies etc. and i nicely told her i dont see myself needing them....... ever. she was very pesimistic about my future and i optimistic. i think optimism is good.

well my daughter needs the computer so i g2g but hopefully someone will come along with advice. yalinda

Veteran Member

Date Joined Mar 2005
Total Posts : 1884
   Posted Today 10:37 AM (GMT -6)   

Hi Theresa, I"m sorry to hear this, but doctors have been wrong before. I know Erin or someone with more medical background will be along but I wanted to offer some suggestions. First off, don't get sad, get informed. Get some other opinions. Ask about TNF/biological medications - they help slow and sometimes stop the progression of arthritis. DMARDS (another medication) can slow the progression as well. You can find a list of all arthritis medications at the doctors office, maybe even here on HW or on the arthritis foundation website.  Prednisone as a main medication, I feel, is bad news and you need to find something else to be on. Prednisone is great for a flare when you need fast relief, but if you can find something else to be on regularly - that is better since prednisone can brittle the bones. Sometimes, you have no choice to be on it, though.

See your dentinst about your jaw. Possibly you just have TMJ and that jaw stiffness can be helped by getting a night guard or bite plate. See an podietrist about your feet......when you are pain, you adjust your walking thusly ruining your feet mechanics. A good orthodic can help your feet, knees, hips...etc. They are worth the money!

Stretch daily, eat well, and take your vitamins (make sure you get enough calcium - foods like chicken actually deplete the calcium in your body.)

I don't know if ANY of this will do anything - but it certainly can't hurt, it may help you feel better in the long run, and at least you know you did your best to prove those doctors wrong and help yourself from being in excessive pain. <<<<BIG HUGS>>>> Take care. ***


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