New member with a few questions

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lmhawk
New Member


Date Joined Aug 2006
Total Posts : 3
   Posted 8/30/2006 2:20 PM (GMT -7)   
I'm 27 (f) and in Aug. 05 (3 months after my 1st child was born) I had to go to the doctor about swelling that started in my feet.  Swelling and pain that was so bad I couldn't walk.  My primary doctor was at a loss for words about what was wrong.  My blood tested negative for RA and lupus markers.  The swelling and pain moved to my knees, knuckles&hands, elbows.  Once, my tongue even swelled and I had raised red and painful swelling areas all over my torso.  I was started on about 30mg of prednisone and vicodin for pain which helped immediately.  I wasn't able to see a RH doctor for 4 months.  So we know what the prednisone had done to me by then.  Of course once I went to the RH, all of my blood work said that RA and lupus were negative but there was unexplainable inflammation.  I was put on methotrexate (6 pills per week).  Moved to another state, picked up with another RH that I am currently seeing.  The 6 pills per week still had me on about 10mg of prednisone every other day and the goal was to wean completely off.  I'm currently completely off of prednisone and taking 7 pills of methotrexate per week.  My flare ups of swelling happen on average about once per week and they are manageable.  RH and I have been talking about using plaquenil as I would like to have another child someday.  I was just wondering anybody's experience that might be similar to mine.  I'm just reading through the board so forgive me if this might have already been addressed.

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 8/30/2006 5:24 PM (GMT -7)   

Dear Imhawk,

First let me give you a huge welcome to HEALINGWELL.  It's a great community here with people from all walks of life & all different arthritic, rheumatic & autoimmune diseases.

So wow, whatever is going on...is responding positively to steroids. That's a good thing because many physicians will ultimatley make a diagnoses by what medications this inflammatory process responds to.  With that...write down every medication that has worked to decrease these flare up; write down what hasn't worked; keep track of the days it happens and what goes on in that day.

Physical objective symptoms are key in finding the right diagnoses. Blood labs are soooo variable and can change, and since you're on steroids...they could have been positive, but showed negative due to the prednisone (steroids mask problems in the blood some times).

For me for example...it took several years to get a definitive diagnoses because many symptoms didn't match up w/ RA alltogether. But after a lot of trial and error...I got there eventually.  And this is common because AI diseases are so complicated....hang in there.

Based on symptoms alone, sometimes could be enough to make a DX. Many RA pts have sero negative RF. Lupus patients sometimes have Lupus but negative ANA!

I don't have the symptoms you describe, but I hope you'll find someone more similar to share.

Keep a real tight journal on your body & swelling & pain to show the doc. The more specific the better for the doc.

When do you see your doc again?

Sincerely,

Erin  


Active/Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Prednisone 20mg; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 60mg; Reglan; Antivert 25mg tid; LidoDerm; MiraLax & too many others.


lmhawk
New Member


Date Joined Aug 2006
Total Posts : 3
   Posted 8/30/2006 5:39 PM (GMT -7)   
Thanks for the reply erin...My doctor has encouraged a journal and I'm so bad about doing it, maybe I can start on online.  Someone else suggested that I take pictures of my skin flare ups so that my doctor can see (that's a great idea).  My RH appt. is tomorrow (31st) and I'm happy about it.  All this weight gain form the prednisone has not helped matters.  I imagine that being lighter might help a little.  I try to get as much help as I can and learn as much as I can.  Right now my heels are inflammed and in pain and they have been since Friday...I've been trying to endure, but walking is difficult.  I just try to keep hydrated to keep from retaining extra fluid.  But thanks again for your helpgul info.

Post Edited (lmhawk) : 8/30/2006 6:44:33 PM (GMT-6)


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 8/30/2006 6:09 PM (GMT -7)   
awe, anytime. i give as much as i know.
ugh...i too hate steroids & the water retention. my legs & feet & hands swell bigtime. i reduce my salt intake to nearly zero (well, adding no salt to anything and buying no salt foods). i find that if i have a diuretic the swelling isn't too bad.
ouch! ankles & heels! i have to keep my heels elevated when in bed...up on a pillow. too painful to have them touch solid.
i use ice & elevation every nite for ankle and foot pain.
it is a rough go of things every day when in pain.
you know...you could always print out your posts you write as a journal to give to the doc! many people have done this because here...ya kinda get everything off of your chest and doctors REALLY REALLY like and appreciate a journal. something they can study & see for themselves. it really is a great help.
take good care.
erin
Active/Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Prednisone 20mg; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 60mg; Reglan; Antivert 25mg tid; LidoDerm; MiraLax & too many others.


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 8/30/2006 6:12 PM (GMT -7)   
has any doc ever mentioned sarcoidosis? i bring this up because of the manifestations of symptoms you had shortly after pregnancy.
but...RA, Lupus and all the AI conditions are typical to hit a woman in the 20 to 40 age range.
ciao!
Active/Severe Rheumatory Arthritis. Crohns. AS. Chiari Malformation & Right Brain venous anomoly. Partial complex seizures. Emphysema. Rheumatic Lung & Heart. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg Q 4 days; Prednisone 20mg; Pentasa 4G daily; Imuran 50mg; Dilaudid 4mg; Diazepam 5mg; Avinza 60mg; Reglan; Antivert 25mg tid; LidoDerm; MiraLax & too many others.

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