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shadow
06-11-2011, 04:33 AM
i Have been ont oral ctxn fro 3 1/2 months, prednisone 4mg from 15 (4 1/2 hyears) and am now haveing major problems with swelling I have put on 16 lbs and am not eating much. has anyone had this problem? Went to ER last night bladder ultra sound normal, chest xray normal blood work only thing potassium low.
Any ideas?
Shadow

Sangye
06-11-2011, 04:55 AM
Why did they do a bladder ultrasound?

Psyborg
06-11-2011, 05:14 AM
i Have been ont oral ctxn fro 3 1/2 months, prednisone 4mg from 15 (4 1/2 hyears) and am now haveing major problems with swelling I have put on 16 lbs and am not eating much. has anyone had this problem? Went to ER last night bladder ultra sound normal, chest xray normal blood work only thing potassium low.
Any ideas?
Shadow

where is the swelling occurring? If it is torso I'd suspect the Prednisone over the CTX.

Jack
06-11-2011, 05:29 AM
Weight gain is strongly associated with Prednisolone use, but if you are retaining fluid and have swollen feet you should get this investigated. CTX does not usually cause this sort of problem.

shadow
06-11-2011, 08:06 AM
The swelling is all over but mainly leg and feet. The ultrasound was done to see if blockage due to high intake low output.
Shadow

norcalian
06-11-2011, 11:35 AM
I have swelling in my feet and ankles (no pain)...I just assumed it was the prednisone.

shadow
06-11-2011, 12:34 PM
I never was this bad on 15mg but have been decreasing since March have been at 4mg for almost 4 weeks droping to 3 Monday. I hate this as it makes it hard to work no comfort standing or sitting.
Shadow

Sangye
06-11-2011, 01:01 PM
I suspect you've dropped the pred dose too low for your adrenals to kick in. That happened to me, and my already swollen lower extremities got much worse. Are you tired, especially in the afternoon? Do you feel tearful later in the day? Those are 2 signs of too-low pred. There are others, but those are usually very noticeable.

How long were you on 15 mg before you began tapering, and how fast have you tapered?

shadow
06-11-2011, 01:29 PM
I would rather sleep then eat lunch. Can be very tearfull. I was on I have been up and down for R4 and a half years the lowest had been 7.5 then I would flair. Had been on mtx then cellcept, in Janurary this year at 7.5mg with cell cept and major flair. New doc stated never in remission and start ctx with 15mg pred droped by 2.5mg till at tmg now only 1mg every month.

Sangye
06-12-2011, 12:28 AM
I would rather sleep then eat lunch. Can be very tearfull.
The swelling, sleepiness, tearfulness-- all are my indicators that the pred is too low. Dr Seo is able to tell with one look at me, and sometimes just by my descriptions via email.

You've dropped at a good pace (1mg per month). However, sometimes when you've been on higher doses for a while (ie anything above 5mg) you need to taper even slower. It also could be that you won't be able to get below 5mg or so. Being on pred for 4.5 years can make that very difficult. When is the last time you were below 5mg and how did you feel?

pberggren1
06-12-2011, 04:11 AM
I have been on pred since November of 2007. I am afraid that the taper will be very slow and that I may never get off pred again. :sad:

shadow
06-12-2011, 06:00 AM
I have never been below 7.5mg before I did increase today swelling seems less but now have wounderful back pain and visiting the heating pad.
Shadow

Sangye
06-12-2011, 08:37 AM
I have never been below 7.5mg before I did increase today swelling seems less but now have wounderful back pain and visiting the heating pad.
Shadow
Is the back pain a recurring issue? Which part of your back? The blood work you did would have included kidney function tests since it identified low potassium.

Otherwise it does sound like a pred taper issue. How much did you increase the pred? You need to contact your doc and find out what to do. It's important to act quickly so that you don't wind up restarting the entire taper.

shadow
06-12-2011, 09:37 AM
I will I only went up to 6mg. The back pain comes and goes I have siatic nerve inflamation had pred shopt in back last Monday an due for another this Monday but put off for now.

Sangye
06-12-2011, 10:01 AM
Okay, good to know it's not potentially a kidney thing.

I don't know if they told you, but back injections should be a last resort. They don't fix the problem and they do cause damage. Sciatica can be resolved by a chiropractor.

pberggren1
06-12-2011, 11:17 AM
Ditto to what Sangye just said!!!!! :thumbsup::smile1::wink1:

jola57
06-12-2011, 11:44 AM
This is one of those times that I am in total agreement about chiropractor. Injections should be the absolute last resort (my husband is an anesthesiologist). I would much rather have my back stretched and pulled as many times as necessary, than have the injections ruin my back forever.
Shadow, I have been on pred also for almost 5 years, cyclo for 1.5 and mtx for the rest. I started at 55 pred and am now down to 4. I gained a whopping 40lb, all due to the crazy eating evening monster.:ohmy: The swelling was unbelievable, my face felt like I had stuffed it and stretched it to the limit and beyond. I can't blame my weight on pred anymore and getting back to normal is worse than I could ever imagine. Breaking that 90kg seems like an impossible task. So take heart, the swelling and weight at just the little bit you gained will be a breeze. Heres to you getting better quickly:biggrin1:

pberggren1
06-12-2011, 12:19 PM
This is one of those times that I am in total agreement about chiropractor. Injections should be the absolute last resort (my husband is an anesthesiologist). I would much rather have my back stretched and pulled as many times as necessary, than have the injections ruin my back forever.
Shadow, I have been on pred also for almost 5 years, cyclo for 1.5 and mtx for the rest. I started at 55 pred and am now down to 4. I gained a whopping 40lb, all due to the crazy eating evening monster.:ohmy: The swelling was unbelievable, my face felt like I had stuffed it and stretched it to the limit and beyond. I can't blame my weight on pred anymore and getting back to normal is worse than I could ever imagine. Breaking that 90kg seems like an impossible task. So take heart, the swelling and weight at just the little bit you gained will be a breeze. Heres to you getting better quickly:biggrin1:

Jolanta, even though you may not be on pred any more its effects are still lingering. So don't be too hard on yourself about trying to loose that fat that the pred gave you. It is easier said than done. It takes a very concentrated effort of proper diet and exercise. For some it is easier because that is just the way they are. Everyone is totally different when it comes to diet and med side effects.

jola57
06-12-2011, 12:22 PM
That's just it I could always eat like a hors and not gain a pound, my metabolism has either taken a long vacation or has left the building permenantly.:sad:

jola57
06-12-2011, 12:23 PM
How are you doing Phil?, i have not been on for a while.

pberggren1
06-12-2011, 12:26 PM
How are you doing Phil?, i have not been on for a while.

I'm doing not too bad. Still have lung infection but it is slowly getting better. Still on amikacin, prob til July, and on clarithromycin until Sept.

Will start rtx infusions next tues. It will cost me about 800, but at least I don't have to foot the whole bill of close to 16 grand.

jola57
06-12-2011, 12:38 PM
Ah thats good so you were approved for it. Did you have to apply to provincial or federal government for the subsidy?

pberggren1
06-12-2011, 12:55 PM
Ah thats good so you were approved for it. Did you have to apply to provincial or federal government for the subsidy?

I was approved through the provincial drug plan. I already get 96% coverage on the plan because of my low income, less than 8 grand a year. But if I were to make about 15 grand a year then I would only get about 70% coverage.

jola57
06-12-2011, 01:03 PM
That is a good provincial plan.

pberggren1
06-12-2011, 01:08 PM
Not too bad, but if I was grossing 40 grand a year then I would have no coverage at all and would have to pay the 16 grand.

shadow
07-22-2011, 06:22 AM
Update had blood clot in lung 7/5 in hosp. For 5 days then home. Unable to get blood level for coumadin. Home 15 days back in due to breathing and new clot found superfical in leg. Feet still swollen. One month put on 14lbs then one week put on 13lbs. Talkled to rhumy if ctxn could be causing swelling deceided to stop it. Backk in hasp with breathing issures again. Had a doctor talk about gastric bypass. Any comments?
Shari

drz
07-22-2011, 07:38 AM
Update had blood clot in lung 7/5 in hosp. For 5 days then home. Unable to get blood level for coumadin. Home 15 days back in due to breathing and new clot found superfical in leg. Feet still swollen. One month put on 14lbs then one week put on 13lbs. Talkled to rhumy if ctxn could be causing swelling deceided to stop it. Backk in hasp with breathing issures again. Had a doctor talk about gastric bypass. Any comments?
Shari

Sorry to hear about the difficulty. I don't see how they could consider any such surgery after being on CTX until you are in a good remission for several months.

In my experience breathing is most important factor. When you can't breathe, nothing else seems to matter much. Swelling in my feet seemed to come and go for reasons they often didn't understand. Sometimes it was fluid build up, sometimes lack of exercise from being in bed.

Sangye
07-22-2011, 08:53 AM
Wow, so sorry Shari. Something is causing that swelling. I don't think you could eat so much that you could gain 13 lbs in one week. Whichever doc suggested gastric bypass should be ashamed of himself. Do they know what's causing the breathing difficulties?

Psyborg
07-23-2011, 12:39 AM
Update had blood clot in lung 7/5 in hosp. For 5 days then home. Unable to get blood level for coumadin. Home 15 days back in due to breathing and new clot found superfical in leg. Feet still swollen. One month put on 14lbs then one week put on 13lbs. Talkled to rhumy if ctxn could be causing swelling deceided to stop it. Backk in hasp with breathing issures again. Had a doctor talk about gastric bypass. Any comments?
Shari

Clearly that much weight gain in such a short time is a warning flag. How is your liver doing? Liver issues can cause swelling (I had this issue pre-wegs), it can also lead to rapid weight gain due to not producing it's chemicals correctly. I'm sure they probably check the liver enzymes regularly though, but thought I'd ask.

If you have any interest in Gastric Bypass let me know, I did have that done (before I was ill). There are good and bad aspects. If you were fairly fit before getting ill then I'd venture to guess a bypass would never be a need for you.

shadow
07-23-2011, 06:30 AM
Down 32lbs I started showing liver problems. I feel so muck better.. now just to get the coumadin level right.
Shari

elephant
07-24-2011, 10:10 PM
Gaining even 5 pounds in a week is concerning. Rapid weight gain is caused by may factors: heart,liver, kidney,medications and electrolyte/protien abnormalities...