Finally asking for some help
 

For several months now, I've had some serious problems that are not being resolved. So I thought I'd post and see if anyone has any suggestions for what I might do. You may remember that I developed stress fractures, multiples including one in my left ankle, foot, thoracic spine and finally two in my sacrum. The culmination of the fractures was that I wound up in the hospital for two weeks.

The rheumatologist and otho told me I'd need 10-12 weeks to recover from the initial effect of the fractures and then they would put me in physical therapy. About two weeks before the physical therapy, my ankles started swelling. They were intermittant at first, some days more swollen than other days. Now for almost a week they remain swollen all the time. The left more so than the right. Now my ankles, feet, legs up thru the knees, hands, and today my eyes are swollen. I cannot exercise for very long in the physical therapy before I have this feeling of needing to urinate. And I am finding that I need to stay close to a bathroom because of this reason. I just feel toxic. Odd way to describe it, but it is the way I feel. I'm falling sleep sitting up sometimes too.

The rheumatologist looked at my general bloodwork and says it is just the hot summer. But hot summers haven't affected me this way before. I'm vibrating more than usual too. And I constantly have this feeling of the world sorta swimming around. Also I have periods of confusion. I am shaking violently after exercise. I can't hold on to a glass without using both hands and am afraid of missing my mouth when trying to put anything to it.

I am also losing the toenails on both big toes. The podiatrist said I had a trauma to them. I haven't dropped anything on my toes, run them into anything and wear sandals around the house. No trauma that I know of.

On my last blood work, the RF factor was out of range at 36,
the Microscopic Exam of urine had mucus threads present which was considered out of range,
my serum glucose was out of range at 115
And on the CBC the RBC was out of range at 3.45, Hemoglobin was out of range at 10.9, Hematocrit was out of range at 31.6, and the RDW was out of range at 15.7%

And if you are still with me at this point, I thank you so much. I know this is long, but I've waited a long time to post it and wanted to try not to leave out anything that might help someone who might be able to help me.

Anyone have any suggestions about what is going on? I seem to have a doctor who doesn't seem to have a clue. Thanks in advance for any answers.

Billye

:hug: sent you a pm billye. i hope it helps.

do you know what the rest of your blood test showed? sodium levels, potassium, calcium? liver enzymes?

i'm toxic and have edema right now too. working on it. today much better than during the week. staying out of the heat today must be helping.

Tks
 

Hi Curious,
I got your PM and answered you.

The postassium looks normal at 4.0 in a ratio of 3.5-5.5

The calcium looks a little on the low side at 9.0 on a ratio of 8.5-10.6

I'm not sure what the liver enzymes are called.

Billye

What are normal levels of AST and ALT?

The normal range of values for AST (SGOT) is from 5 to 40 units per liter of serum (the liquid part of the blood).
The normal range of values for ALT (SGPT) is from 7 to 56 units per liter of serum.
What do elevated AST and ALT mean?

AST (SGOT) and ALT (SGPT) are sensitive indicators of liver damage from different types of disease. But it must be emphasized that higher-than-normal levels of these liver enzymes should not be automatically equated with liver disease. They may mean liver problems or they may not. The interpretation of elevated AST and ALT levels depends upon the whole clinical picture and so it is best done by doctors experienced in evaluating liver disease.

http://www.medicinenet.com/liver_blood_tests/page2.htm


does this help? the link has a lot more infomation.

i had an abdominal injury years ago. then my liver messed up during an emergancy c-section with my son.

yes, found it
 

It looks like I'm still in range altho a little on the high side.

The AST (SGOT) is 37 in a range of 0-40
and the ALT (SGPT) is 30 in a range of 0-40

I expected high because of the Humira and methotrexate. I do know the doctor watches this number.

Billye

It does seem--
 

-as if you are at least somewhat anemic, especially with that red blood cell count. That alone may be a major contributing factor for fatigue. (I see you've been researching that in your other post.)

I also wonder how much this may have to do with drug effects and interaction.

Remember, too, that Sjogren's is still a vasculitic autoimmune disease, as well as one of the moisture/mucuous membranes, and you may be having effects in that realm. That could certainly account for the edema/swelling through vascular insufficiency. There are also associations with hypothyroidism and adrenal insufficiency--a whole other battery of tests to have.

I know you and Chemar have communicated, and that Mrs. D will likely respond here too--do you feel like listing more test results from your most recent batteries?

Lost it
 

Somehow I lost the message I posted last night to answer Glenn. I will be having more bloodwork in about two weeks that can be compared to the bloodwork I just posted here. And I've got bloodwork that was done by the endocrinologist last week that still is to come in. I'll wait to post until then. I have been remiss in not using Liza Jane's charts. I'll start those and then post them and see if you and I can see a trend.

I've not changed any medication since I went to Mayo. They made a slight change in my Lyrica right after I got back and nothing has been changed since.

I'm slightly anemic I know as Glenn has noted. But the rheumatologist ran additional bloodwork to check on that and I don't have my copy yet. (I forgot that had been done.) His dippy nurse told me that it was just the anemia that goes along with chronic illness and he wasn't going to do anything about it yet.

I'll end this thread here for the time being with many thanks to all my good friends. And I'll refresh it when I have the new bloodwork.

Billye

HI Billye!
OMG you have been going through the mill! I'm SO sorry to hear you are having such problems.
It sure does sound like you are toxic or having some medication reaction. I hope they get it figured out soon! We all have such rotten issues to deal with!

Edema & low blood volume
 

Hi Billye,

I haven't posted in a couple of years and saw your post regarding low HGB. I do check this site from time to time though. My husband John is the one who ended up with PN from his treatment for Severe Aplastic Anemia. One of the side effects from having low red cells/hemaglobin is that your body likes to maintain a certain level of fluid volume in your circulatory system. So when you're down a couple of pints like you are, your body compensates by holding on to more fluids to fill the void. This can result in water retention throughout your system. John's HGB is at 10.9 also and he too is carrying extra fluid.

If you have your CBC records, look for where you're counts were when you did not present with the fatigue and fluid retention. This will give you an indication as to what level your body would like to be at. So if you normally had a HGB of 14, then dropping to 10.9, you will feel it even though the docs say it's mild anemia.

There are a couple of thing we keep an eye on. We focus on trends...looking at the CBC over time. The key components we track are White Blood count, Absolute Neutrophil count (also known as granulocytes), Hemaglobin, Hematocrit and platelets. You want to monitor all of these to see if other lines, that are still in a normal range, are trending down/up. When it comes to your red cell line, you should ask them what your Absolute Reticulocyte count is. This is the actual number of new red blood cell circulating in your blood. It's not unusual for the RWD to be high when you are anemic. Large red blood cells are usually a result of many new red blood cells being produced to make for the deficit.

There is a hormone, EPO, ((erythopoein (sp)) produced by the kidneys which stimulates the production of red cells. You may want to ask them to check your EPO levels at some time.

This about all that comes to mind right now. Hope it's helpful. I will look for a link that explains blood production and post it later. I think it will be helpful in understanding how blood is produced.

Wishing you the best,
Marlene

Info on Blood
 

Here's link on blood. I hope you find it useful...Marlene

http://users.rcn.com/jkimball.ma.ult...s/B/Blood.html

Great info
 

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.:rolleyes:

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 :)

Indocin....
 

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!:hug:

some thoughts
 

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.......:hug:

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.


:hug:

All the tests
 

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?!:D ) 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.

:hug::hug:

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

Thanks,
Melody

so...
 

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.

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
:cool:

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 and Yorkiemom
 

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

you are "bruising"?
 

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.

Mrs. D..no not bruising
 

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. :rolleyes:

Billye

not good...
 

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

Urgent Care
 

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....

quick note
 

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

Billye? Taking a pill and
 

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

One more thing to add to the mix. It is possible to develope an allergy to an anti-inflammatory drug even if you have been taking it all along with no problem. This happened to my Dad. One day his face and lips started swelling. That was the culprit. You might want to ask your doc if he thinks this could be an allergic reaction to the one you are taking.

Just Brief note
 

I'm feeling better this morning. Some of the fluid seems to be gone. (Bathroom a lot last night)

Have an early appt. so must go.
Thanks all,
Billye

Hi. I'm sorry for all your going through. I know I say this but have no clue but want to offer a few things. In the past I had severe edema in my ankles not from this though anyhow. I think part was because of my liver/pancreas not working correctly. So I was wondering how your liver enzymes are? I had to be placed on meds at one time and a certain diet. For edema though and ankle swelling support hose,proper fluid and elevation. The elevation when sleeping and even when sitting is very important. Good luck at the apt.

I am so glad...
 

... to read you are feeling somewhat better. I have been following this thread and have been very concerned about you. I do hope the doctor can find something to give you that will reduce the fluid retention you seem to have. Take care.:hug:

HI Billye!
That's great that you were able to get rid of some of that fluid last night......tho I'm sure it wasn't fun getting up all night! I hope you have a good dr. appt!

Billye
 

Very good to hear you are a bit better today - and hope that the doc today maybe can shed some light..... sending some strength for the car ride:hug:

Good news... I hope this will help take care of the problem, Billye.

Cathie

I hope your next post gives even better news Billye.

My thoughts are with you. :)

Tony

What he said.
 

Do give us an update when you get back and are able--any test results, etc.

OK, I'm assuming...
 

you are now home...totally wiped out and probably waiting for new blood test results...But...


HOW THE HECK ARE YOU???? - Any news is good news! - j