Reply
Sat 31 May, 2008 06:48 am
As some of you may know I was recently diagnosed with Crohn's Disease. On May 8th, I was put on Pentasa, eight large blue capsules to be taken two by two, four times a day.
On Friday, May 23 I did an unusual amount of walking--unusual for me, nothing exceptional for a fit person. On Saturday and Sunday, May 24 and 25, the calves on both legs felt stiff and sore. On Sunday I noticed that my feet and ankles were quite swollen. By Monday feet, ankles and calves were quite swollen.
On Tuesday, May 27, my Gastric Doctor switched my meds from Pentasa to Balsalazide and confidently waited for the swelling to go down. The swelling did not go down. The swelling has increased.
Yesterday I saw my Internist who agrees that Pentasa was "probably" responsible--although edema is a very uncommon side effect . He wrote scripts for lots and lots of blood work and the lab gave me an enormous orange bottle to collect twenty-four hours worth of urine.
This morning I when I push my thumb into my lower thighs, I leave a dent in the muscle. The fingers on both hands are tingling and my hands seem to be swelling.
Questions:
I stopped Pentasa on Tuesday. If Pentasa were responsible, wouldn't the swelling have started to abate? Edema is not a common side effect of Balsalazide, either.
Walking isn't comfortable. My shoes pinch and my feet feel miserable. (I have one leg considerably shorter than the other and without shoes and the lift in my shoes I'm dangerously off balance.) Do I walk anyway to stimulate my lymph system to greater effort?
Are there other exercises I could do?
What about pedaling to nowhere on my stationary exercycle?
The question that I really want answered ASAP is whether or not the edema is ever going to go away or am I looking at a summer and a winter and a summer and a winter of support stockings?
I'm tired of Character Building Experiences.
Hi Noddy - I'm logged in under Set's name right now.
Found this ...
http://www.aafp.org/afp/20050601/2111.html
Quote:Major causes of edema include venous obstruction, increased capillary permeability, and increased plasma volume secondary to sodium and water retention. A systematic approach is warranted to determine the underlying diagnosis. Treatment includes sodium restriction, diuretic use, and appropriate management of the underlying disorder. Leg elevation may be helpful in some patients.
Quote:in some patients, sufficient sodium restriction (i.e., less than the amount excreted by the kidneys) and elevation of the lower extremities above the level of the left atrium are effective.
Quote:Diuretic resistance is a failure to create a negative sodium balance despite the use of high dosages of diuretics (e.g., furosemide at a dosage of 240 mg per day). Resistance should be suspected in patients with persistent edema who are receiving appropriate diuretic treatment and restricting physical activity and sodium intake (i.e., less than 2 g per day).8
bottom line looks like no salami, no pickles, no savouries and legs up for a while
(trying to remember what herbs/foods are helpful to kidneys)
Beth eh
http://www.nlm.nih.gov/medlineplus/ency/article/003104.htm
Quote:Home Care Return to top
* Elevate your legs above your heart while lying down.
* Exercise your legs. This helps pump fluid from your legs back to your heart.
* Wear support stockings (sold at most drug and medical supply stores).
* Try to follow a low-salt diet, which may reduce fluid retention and swelling.
When to Contact a Medical Professional Return to top
Call 911 if:
* You feel short of breath.
* You have chest pain, especially if it feels like pressure or tightness.
Call your doctor right away if:
* You have decreased urine output.
* You have a history of liver disease and now have swelling in your legs or abdomen.
* Your swollen foot or leg is red or warm to the touch.
* You have a fever.
* You are pregnant and have more than just mild swelling or have a sudden increase in swelling.
Also call your doctor if self care measures do not help or swelling worsens.
hands swelling ... to me would suggest time to call the doctor
~~~~
still Beth eh
It sounds more than awful.
I know nothing about edema, and hope someone who does comes along soon, but in addition to what Beth found, when I googled medication induced edema and quickly browsed, I took it that you should not be exercising at this point, and that diuretics won't be effective.
Quote:Because medication-induced edema is caused by capillary hypertension, diuretics are not an effective treatment. However, angiotensin-converting enzyme inhibitors and angiotensin-receptor blockers seem to be effective.
http://www.aafp.org/afp/20050601/2111.html
A quick call to the doctor's office?!
(Just commiserating. Hope to hell this clears up soon)
Oh Noddy..
I am sorry to hear all of this. I don't know a thing about it ...but I do hope you find some relief soon.
Missy
I tried to edit out the exercise comment. I browsed a bit more and just don't know.
I don't know a thing to be helpful. Just throwing in my concern and good wishes.
BBB
If you don't have a recliner chair, I suggest you get one and use it to keep your legs elevated. When people come to my home, they can sit anywhere they want except in my recliner chair.
During the recent A2K gathering, my leg swelling got worse because of sitting in regular chairs in homes and in restaurants. No recliner chair available. It really helps.
BBB
Absolutely call the doctor, Saturday or not.
I can't tell if you're on a diuretic, and you might need one (then again, maybe that would be contraindicated, I'm sure not a doctor.).
Hey Noddy
I don't know how long the Pentasa would stay in your system.... however, the obvious concern is kidneys - which is why 24hr-p is a must!!!! (Know it well! - oooof!)
BUT GIRL - if you have a tingling sensation in your fingers and your hands are swelling - you need to call the doc. Sorry - no mucking about - put the call in! Please.
It is possible the edema will abate after they have found out what is causing this and can come up with a plan or change in meds. Until the labs are back - I really think if the swelling is increasing - then make a call. Please again.
Oh.... no no no salt intake! But you must still drink plenty.
Right, continued progression of the swelling is a problem. It's not that you still have swelling that's alarming, it's that the swelling is increasing further up your legs, your fingers are tingling meaning, yes, your hands are beginning to swell, and you're becoming increasingly uncomfortable.
The fact that you are collecting a 24-hour urinary output is a good thing. It can be measured and analyzed but even more helpful right now is that it allows you to focus on your kidney functions. How does your output seem to you in comparison to what's normal for you prior to this swelling episode? Is it reduced? Did they ask you to measure intake as well as collect the output? Sometimes a 24-hour urinary output coincides with a prescribed intake -- say, 500 ml of water every 6 hours (and nothing else for liquids during the test). Did you receive any guidelines on what to drink over the 24-hour period?
I don't think your immediate concern is July and August, I'm more concerned about June 1st. Please let your doctor know that the swelling has increased as has your discomfort.
Hell's bells!
Call doctor/go to ER!
Yikes!
Attention Noddy's body: she has plenty of character, behave yourself.
Sorry to hear this news and this complication. You're always on my think-about list but I'm moving you to the tip top until we hear you have some relief. I'm with the others -- time to call the doctor.
Well ****.
I agree with seeing the doctor but you are sort of out in the boonies aren't you. This seems worthy of Emergency, even tho I don't know a thing about these complications.
All I know is though I haven't seen your face yet, you've become precious to me.
Let's get those hands settled down so you can take some shots at the punching bag. If anyone ever deserved a chance to take out her frustration, it's you.
Echoing the others... elevate your feet and call your doctor. Oh, yes...and hold your dominion.
I can't offer any advice but I can wish you relief and comfort...
Dear People--
Many thanks for your concern--and your research. I posted in a bit of a dither. One of the problems of being a Caretaker as well as a Patient--you have no one under your own roof to dither to.
I found it particularly comforting that drug reaction edema isn't receptive to diuretics.
I took some measurements of my hands and lower thighs and swelling is not increasing, if anything, it is receding. I wish it would recede faster, but....
I talked to my Doctor's practice--after all, this is a Summer Saturday and was told not to worry. While only 3% to 5% of patients react to Pentasa with edema, edema is not unheard of.
My Blue Shield coverage includes access to a 24-hour Hot Line, Blues on Call. The nurse on the other end of the line assured me that I am not in a state of emergency.
Thank you all so much for the research and the sympathy.
I'm now switching my focus to worrying about Mr. Noddy and the car. Being the center of attention for a bit of time was very ego-soothing. Again, many thanks.
A smilie for you..
Letting you off the hook now, as long as you promise to keep up the attention to yourself..
I'm so glad to hear at least the swelling is going down and some crisis is being avoided.
One thing after a damn other eh.
Beth, thank ye!
Ok, no one is probably going to believe me, but when I saw that I was thinking "F off! No way!" and laughed out loud.
I **** you not, Noddy looks a hell of a lot like the woman who 'adopted' me (for a time I was a nanny to her son, and am still real close with the family).
Don't ask me why, that is just so hilarious and has me grinning ear to ear. That these women would have similiar physical characteristics ...
Stumble It!
Tweet This
Bookmark on Delicious
Share on Facebook
Share on MySpace