Thanks Marlene. I'm working on getting this information together. I know I don't drink enough fluid. That is something I've worked on yesterday and today. But it's just so hard to drink enough when the water bottle is in the other end of the house. No excuse I know. I really should put me a glass or water bottle in both ends every morning.

off subject: I've got this little dog. She's afraid of buzzing insects (must have been bitten) and she's also afraid of thunderstorms. Yesterday a small buzzer got in the house when my husband took the trash out. I held her all day until we were able to kill the insect. She will not let you put her down. Claws at your leg and trys to get up. Today we are having a thunderstorm. Same thing. I've just now been able to put her down covered with a towel on the stool beside me. I've created a monster.

So I'm not making much headway getting these records researched and typed. I do appreciate all the inputs. They give me more ideas of what I can do to help myself and to also hopefully educate the doctor. I also appreciate all the PM's I've received.

Billye

Billye, i do hope you can get to the bottom of this, it does sound awfull.
When i first read your post i wondered about your water intake, but thought this
is complicated and should be left for the likes of Mrs D to answer.
I just wanted to mention that when i take any medication, if i don't drink a full glass of water for each pill i feel that toxic like feeling and just feel totally rotten , but once i have enough fluid i come good again, and seeing it's hot in your country now drinking plenty of fluids is pretty important, if your tap water isn't to flash to taste, then if you boil the water first , let it cool down and wack it in the fridge, with some lemon slices in it, defiantly changes the taste.
all the best
Brian

my first thought is this---- a painless bleed. Indocin is the worst offender for this. Nsaids also affect the kidneys..I'd get a renal panel done.

2nd thought--are you taking folic acid with that methotrexate?

I am sorry you are having issues. I hope this clears up soon for you Billye!

Billye--I do not like how swollen you are. Being swollen can cause the blood counts to look lower, because, if you are retaining water, the red blood cells get diluted.

It is urgently important that your internist tease out the various things which can cause this much edema:

congestive heart failure: physical exam, looking at the distribution of the swelling, looking at the veins in your legs and neck and seeing how they are doing, listening to your lungs and heart, and getting a chest xray, at a minimum. Maybe more things, I don't know. Pericarditis---chest pain? Shortness of breath

liver disease: It does not seem as likely, as your liver numbers are normal.

kidney failure: blood tests like BUN and Cr show this

hormone problems: too much cortisol being made by the adrenal glands, too much being taken as medicine.

Drug side effects: Can the methotrexate or humira do this? How?

I'm worried. I think your problems are urgent, and that your internist needs to treat you as if you are urgently ill.

Is your rheumatologist your internist? I know he's the guy who is giving you calcitonin for your osteoporosis, when my bone guy here in NY, when I told him about you, said that that's nuts; it's too ineffective, and anyone with fractures from osteoporosis should be on Forteo. I hope he's up to this and is taking it very seriously.

Billye, you sound more ill than you've been, in a different way. I dont know enough about sjogren's or your medications to say anything sensible about what is happening to you, but please, make a fuss about being treated as if you are very ill.

Ok?

Billye,
LizaJane gave some great info in the above post.....maybe you should print it off and take it to your dr. and insist that more be done for you.....or change dr.s Some times these dr.s can drive ya nuts! I'm worried about you.......

Hi Billye,

I know Curious asked but I did not see it in your replies. What is your sodium level?

Also have you had your iron checked lately specifically your % saturation?

One thing to think about is also to have your ADH hormone checked as well as your Osmoloity. It controls fluid volume and balance I believe.

I will try to get all the test results gathered in hopefully tomorrow. I've got a bone scan being done on the ankle that is really painful. But I honestly don't think it is necessary. I think this is systemic. I will have to wait to see the doctor again until after the results are in on the ankle scan. This one had to be done at our local hospital so I am hoping I'll have it in 3-4 days.

I'm watching my blood pressure and it is staying steady so I don't think I'm dying yet, but I do know that whatever is going on is serious. It was too sudden. Getting anything done medically in a hurry is totally impossible. Cathie can testify to that. Around here, we wait and wait. I'm increasing my fluids Brian. And I do appreciate the lemon tip. I absolutely hate the taste of our water, so I'm not drinking as much as I should. I'll try the lemon.

Liza Jane, The CBC with differential/platelets looks o.k. except for the differences I pointed out. The Complete Metabolic Panel looks o.k. except for the glucose level. We'll be watching that. It may have been a fluke. It's the first time it has happened. All of the Urinalysis looks o.k. except for the mucus threads. And the Sed rate isn't too far off. All in all, my bloodwork looks o.k. I'll be looking to see if all the tests are there that you mentioned. I won't sit on this problem any longer. There is something wrong with me. (Well....we all KNEW that, didn't we?! ) I'll be getting more test results soon. We don't get anything done labwise fast here because all the blood draws have to be sent off to read. Yes, my Internist is my Rheumatologist. And he has to be educated about the bone fractures. I've printed everything you gave me. I'm just waiting on the bloodwork from the Endocrinologist to try to get things straightened out there. He will conference with her and with me. It is so hard to get anything done in a small rural town.

Mrs. D....I haven't been real good about remembering to take my Nexium before each dose of the Indomethacin. I promise to take it like I'm supposed to from now on. I am taking Folic Acid with the methotrexate. As for a bleed, if I take the Nexium like I'm supposed to, will that take care of the bleed?

I honestly don't know what I'd do without all of you.

Billye

Hi Billye,

Lemon with water really helped me to alkaline by body. For a while I was too acidic in terms of my ph and they recommended a half of lemon with a glass of water in the morning and night. I thought wait...lemons seem acidic but they actually turn alkaline in your body. Plus it helped the borning water go down.

What exactly does half a lemon in a glass of water do for one's body??

Thanks,
Melody

so you are still using the Indocin?

I really would look to that first.
The use of proton pump inhibitors reduce but do not 100% prevent bleeds.
And Indocin is very aggressive in this regard.

The slight anemia is a warning sign IMO. Use Ocam's Razor in cases like this
first. The most obvious.

Also to consider for the anemia is the failure of iron absorption. Removing acid
from the stomach seriously impairs iron absorption leading to anemia. I have seen this in otherwise healthy males using long term Nexium/Prilosec.

NSAIDs can cause renal damage/failure:
http://www.pdrhealth.com/patient_edu...HG01NP02.shtml
You know I have brought this up many times with you, and I know you need the help the Indocin provides, but its "price" may be too high now for you.
In the private sector and long term sector this drug is only used as a last chance thing. Certain severe headache patients, short term acute gout, etc.
As a matter of fact some companies have stopped making it, and a shortage was in place when I left for vacation.

This just feels toxic to me what you describe, and given what Indocin is and does it should head the list of causative agents.