I'm not nearly as educated as the others here, so I might not have any really useful info. But I do have Sjogren's like you, so I wanted to mention some of the symptoms I've had that were similar.

In May 2003, I woke up one day to find my left foot swollen. I thought it was odd but just went to work as usual. The next day, though, both feet were swollen, and the swelling on the left side spread all the way to the knee in just a few hours.

I went to the emergency room, which is something I almost never do. My bloodwork was normal, as was a lung x-ray, and an ultrasound of my left leg. I was told it was the Sjogren's and was put on prednisone for a week, which helped until the the med wore off.

I have had problems with edema ever since. It is worse in the heat, but I get it in the winter too if I go too long without elevating my feet. I'm thinking it may be caused by mild vasculitis as I have petechia on my lower legs, face and upper arms.

It could be something other than the Sjogren's that's causing your swelling, of course, but I thought I'd mention it just in case your tests don't give you any answers.

What I do about the water: I got a half-gallon water bottle, one that has a long strap so I can carry it on my shoulder. I cart that from room to room with me and never leave the house without it. I try to make sure I drink the entire contents each day, refilling it at bedtime so when I wake up in the middle of the night with my tongue all cracked and dry, I can take a swig and go back to sleep.

Please let us know what you find out. I'm most curious if your symptoms are caused by autoimmune disease or something else.

fanfaire

I have what is probably Sjogren's too and am on Prednisone. My Internist calls this swelling "pitting edema," but I cannot recall him saying what he thought was causing it... I cannot see my ankle bones clearly, it probably is not bad. I know steroids cause fluid retention, but I don't think Billye is on them. The swelling improves if I up the dose. So does my BP, which I thought had settled down... Go figure...

I have slight anemia and hematuria (microscopic amount of blood in urine) and some vasculitis in my legs, according to biopsy... Do either of you have these? I was wondering if this could be the cause of it all...

Billye is right. You can't get anything done in a hurry anywhere around here. A lot of times, you cannot even get a return call the same day... It is upsetting when these things happen and you don't know what is wrong and no one even acts concerned (except you guys.) Thank goodness we have you.

Cathie

fanfaire,
Don't ever put yourself down. The idea about the strap and the waterbottle is wonderful. So many times, I think when I'm in the front of the house, "I need a drink of water." but the water is far enough that I won't walk for it. Especially when my feet and legs are like this. Every step is so painful. I have one of those water bottles and had forgotten about it. Thank you for the idea and refreshing my memory. I don't have any petechia. I do have lots of capillaries breaking now due to the swelling in the ankles. But I can distinctly tell they are capillaries.

Cathie, I once showed the slight amt of microscopic blood in my urine and at that time the doctor started me on a very low dose of lisinopril. He said it would help protect my kidneys.

I can't see my anklebones at all. In fact it looks like I have a grapefruit for my ankle area. You are correct, I can't use steriods because of the bone problem. And you are right about the return call from your doctor's office. Never the same day and usually about three days. And sometimes I have to call the office repeatedly. One time, I had to go to the office and tell them that I needed to speak to that particular nurse immediately. But if you make the nurse mad, or say anything to the doctor and they get unhappy with you, what are you going to do...it's the only horse in town. We have no other rheumatolgist without making at least a 50 mile drive and waiting for months.

Billye

Broken capillaries?

ARe both ankles equally swollen?

Are they swollen even when elevated? Do you have shortness of breath?
Any swelling in the hands? Eyelids? or only in the legs?

A kidney problem would appear all over...there would be facial puffiness.

A blood clot in a vein, will cause swelling below the point of the clot.

I think you should persist calling the doctor. Today is Monday, and you should get some response today.

Thyroid issues create edema, but that is not typically sudden. It would progress. Since you have
autoimmune issues, thyroid should be considered too.

It's just all the small capillaries seem to be breaking. Like tiny varicos veins in my ankle area. Both ankles are swollen. The left more so than the right and both legs are swollen up to and including the knees. My face and eyes are swelling some too. Eyes have that heavy hooded look. Eyelids falling over eye area. I haven't elevated the legs much. I hate sitting. I walk constantly thru the house. I can sit only for a short while. Today I'm having shortness of breath. Walking just thru my house leaves me winded.

I had the bone scan this morning. Even an untrained eye could see the "hot spots". Both feet have the "glow" in various bones, both ankles too. I think the inflammatory disease is active again. Whether it is broken or not I don't know. I'll have to wait on the results and call the dippy nurse about them.

While I was gone, my husband called the doctor because I'm so short of breath. He was told the doctor is out of the office until Weds. So I have an appointment on Weds. afternoon. This is the first day I've felt this bad. I've canceled the pt until I see the doctor. Just feel as if I cannot do it.

I'm trying to get the results of the thyroid issues. If you can believe it, I was told to call their office in 10 days and "remind" the doctor that she needed to look at the results and call me about them. You gotta love this slow country living.

Billye

If you are swelling up like that, it could be

1) kidney failure

2) allergic reaction (and if this it could deteriorate rapidly)

Since you are on anti-inflammatory drugs, they may mask this reaction somewhat.

Can you go to the ER? If you have fluid in the lungs, hard to breathe, this can go South quickly.

3) there is also heart failure, as a possiblility.

So I think an ER may be necessary. If you choose not to go, do NOT lie down flat, but stay propped up...this will help with breathing.

Here is a link showing heart failure can occur with Humira...
http://64.233.167.104/search?q=cache...lnk&cd=1&gl=us

http://www.mayoclinic.com/health/dru...ation/DR500449

Since your edema is staying, it becomes more serious as each day passes, IMO.

Billye:

Would you happen to have a good Urgent Care Center close by? Ours is good. I think sometimes the one by us does as good a job evaluating/treating me as my Internist does, even better in an emergency...

Thyroid problems. Do you know if they think you might be hypo or hyper thyroid? I did get some reasonably fast action from the Endocrinologist, although it took 2 calls. Is she in your area? Surely someone could evaluate this swelling, even if it is not your regular doc....

Is hubby able to drive, or is his back still bad?

Cathie

Hi Billye - just wanted to second what Cathie said - urgent care's usually have much less wait time then ER - and I've gotten good docs at them... and, if they feel you are urgent - will send you directly to the hospital... I hope you are getting help....

Just a quick note.

Cathie, we have no urgent care here and I've experienced the emergency room here with very unpleasant results. I only consented to it the last time when I was unable to get out of the bed. I called the Endo's office today. I expect to hear from her at any time. I'll wait a couple of days and call again if no results.

Mrs. D, I just have no clue. I did notice when I took the one hydrocodone I've allowed myself today, I did experience more labored breathing. I'm hoping I'll go to sleep and it will be gone. I will not lie down flat tonight. I'm propping myself on two pillows. I still can reason and make sense of things but this one is beyond me. I just think the inflammation is really kicked up a notch.

If it is worse tonight or tomorrow, I'll go straight to the emergency room.

Good nite all and thanks so much for caring so much.
Billye

get labored breathing? That is scary!
I can only relate my own ankle/foot swelling experience?
6 months after my 'onset', I'd been holding and maybe improving but not lots...and then [on a HOLIDAY WEEKEND -always on such things] late Friday morning to afternoon my feet started to swell! Edema? YEP! My normally petite feet swelled up to 3-4 times their normal size [could barely get a shoe on?]! I called my GP who said go to an ER [well after my last 16 hour ER wait-no way!] I decided to go to one of those 'emergency sites' [It was in the 'Plan Book'] rushed there just before they closed the doors for the nite...Doc took one look at my feet, said...get blood drawn! Blood was drawn..told to go home and ELEVATE feet and ice...Yeah right.

Turns out my hypo-thryroid[now Hashi's] had gone totally bonkers! My Synthroid dose was changed up .020 mgs which is a LOT. It took me about 3 months before the swelling decreased to 'almost' normal. And, when I overdo stuff or do a lot of PT...those ankles are my 'barometers'! The only other thing that's helped it was in my last PT when the Therapist 'massaged' my ankles so to push up excess fluids up further on the leg? It's a gentle push/grasp that mushes stuff up the leg to get the circulation going. That's IF you can stand the touches.

Not lying flat to sleep is NOT fun, but for many of us, sort of essential, I think [Sleeping this way tho, head above heart, legs above or at heart gets DULL really fast tho]. Please do be careful! I think this is one of those times to NOT FEAR Fear ITSELF! Even tho you will. Dear Lady, I am crossing my fingers here. Keep us all up to date - we care! - j