GI agrees to stop mesalamine drugs, b/c of kidney

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Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 9/10/2007 7:59 AM (GMT -7)   
Just got off the phone w/my GI, says he agrees I should stop the mesalamine drugs and b/c of my kidneys says may not be good idea to ever start them up again.  He says w/the prednisone, will likely put me in remission for a while and then says only thing right now he would recommend would be immuran and that I need to call him next mo. after my appt w/my Nephrologist, which he knows the Dr. so says he will try to call him.
 
Says b/c of the prednisone, not to start any other drugs for my colitis now but will begin discussions next month. (still have 6 mos to go on the pred.)
 
Also, GI says he did not rountinely do urinalysis but did one for me (which I thanked him for helping to find my kidney disease) and says that he will likely do them for all his patients on mesalamine drugs. 
 
Thanks everyone for listening and for all your support.  Next month will begin looking more into immuran and/or non-prescription things I can do.  Right now, need to concentrate on my kidneys and then will begin working on that.
 
Hopefully if he does the urinalysis he can help others!
 
Beth
Beth, 31
UC Diagnosed March 2000
Lialda 2.4mg 1xday since 8/24/07 (prev. Asacol 4800mg day),Calcium and Vit D 500mg 2xday.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60mg 1xday, Simvastatin 20 mg 1xday
Diovan 80mg 1xday. Fosomax 1xweek 70mg. MCD may be from hypersensitivty to 5ASA drugs.


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5136
   Posted 9/10/2007 10:00 AM (GMT -7)   
Patients on 5-ASA meds SHOULD have urinalysis done at least annually!!!!!! Dunno why this is suddenly such a problem for doctors to do. When I went to internist for annual physical 4 mo. ago, staff there said they had stopped doing urinalysis tests as part of annual. I told my gastro, who subspecializes in IBD, & gastro immediately replied: "Well, then I'LL do it!" I mean, REALLY. The package inserts that come with 5-ASA meds mention possibility of kidney complications-- so why aren't these jerk-doctors testing regularly? The best thing you can do for yourself, Beth, is to question any/all Rx recommendations that your doctors put forth. Do not let them throw the whole medicine cabinet at you. I read in another of your threads that they want to put you on Fosamax because of the Pred-- Fosamax can cause kidney problems, too. I know a female patient who got stones while on it. Try to eat the healthiest possible diet & keep your calcium/vit D intake up thru good nutrition as much as possible & only take the absolutely necessary meds. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 X 3 Colazal daily for July flare in descending colon; should be back in remission soon)

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 9/10/2007 10:25 AM (GMT -7)   
thanks Old Hat! It makes me angry now, too, if they should be doing these tests annually, then why are they not? I had been telling my GI and each of my Docs about my edema at every visit.

Also, what ticks me off too is that in the side effects, it lists renal dysfunction but it does not list the symptoms of MCD such as edema, I could have maybe connected the dots 6 years ago??? I had no idea that renal dysfuntion could cause edema and when I researched it, there was so much stuff on the internet about edema, I didn't know how to process it.

Now I want to put a list together for all the side effects and hypersensitivities side effects on a spreadsheet and I can look them up at my convenience. It is going to be a big project but worth it I suspect.

I did have a long discussion about the fosomax w/the kidney specialist and he believes that the benefit outweighs the risk in my situation w/the MCD, that if it were a different type of kidney disease I had, may have done differently.

Also, it was I, who realized that about mesalmine being most likely the cause of my MCD and contacting the Doc's about it.......not them researching it and coming back to me. Though GI did not know about the MCD until I called him (day after diagnosis).

Yes, will be eating a low sodium, low carb, low sugar diet, also watching fats as well.
Beth, 31
UC Diagnosed March 2000
Lialda 2.4mg 1xday since 8/24/07 (prev. Asacol 4800mg day),Calcium and Vit D 500mg 2xday.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60mg 1xday, Simvastatin 20 mg 1xday
Diovan 80mg 1xday. Fosomax 1xweek 70mg. MCD may be from hypersensitivty to 5ASA drugs.


quincy
Elite Member


Date Joined May 2003
Total Posts : 29860
   Posted 9/10/2007 11:34 AM (GMT -7)   
Beth..sounds like the best plan for you. In the future, regarding UC, you should look into the Entocort and steroid enemas..less side effects. That's the way I would go, anyway. I'm puzzled about the GI's non-response regarding your symptoms and the probability it's the 5ASA. Good thing you're proactive. The research, unfortunately is our responsibility sometimes..but your GI should have at least that insight.

My doc does creatinine levels..would that not be one way to check as well as the urinalysis? I have urine checks by my GP, the creatinine b the GI.

q
*Heather*Status:mini flare June 23* 6asacol daily+ Salofalk (tapered every 3rd night)
~diagnosed January 1989 UC (proctosigmoiditis)
~5ASA: Asacol + Salofalk enemas (increase for flares tapered to maintenance)
~Bentylol (dicyclomine) 20mg as needed
~vitamins/minerals 
~Probiotic 2 (Natural Factors Protec) + 1 (Primadophilus Reuteri) at bedtime
~Natural Factors Multi Digestive Enzymes with supper
~Ranitidine,Pariet (reflux) Effexor XR 75mg;  Pulmicort/Airomir (asthma)
~URSO for PSC (or PBC) 500mg X 2 daily (LFTs back to NORMAL!!)
My doc's logic.. "TREAT (FROM)BOTH ENDS"  worth it !!!


Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 9/10/2007 1:05 PM (GMT -7)   
Quincy, I will definitely be looking into entocourt and the enema's and thank you for your suggestion, just the few posts about immuran make it sound pretty scary and GI said about 15-20% of those people get side effect on it.

I don't know why any of my doctor's did not put this together because of my edema. Having the edema has been stressful in iteself.

Nephrologist said after I go into remission, I can do at home tests for protein levels but I also want yearly tests at the Dr's. to make sure. I think Neph said that would be the case and that my primary would do that. Hard to remember everything. I will bring a notebook to my next visit.

Also, my healthcare blue cross blue shield, who I also called about my edema (they have a nurse hotline you can call anytime to ask questions) and they did not pick up on it either. I had told them some time ago it was in their best interest to figure it out b/c I was just going to keep on racking up medical bills trying to figure it out.

They have recently contacted me to be part of some program to provide information for me about UC and also to follow my treatment, I was a little hestitant. But now I think it is a good thing and will most definitely discuss this whole thing with them and gather info from them as well.

Shouldn't there be some type of database that can cross reference all this stuff and if there is......why is it not being used?? I mean I cannot be the only one???
Beth, 31
UC Diagnosed March 2000
Lialda 2.4mg 1xday since 8/24/07 (prev. Asacol 4800mg day),Calcium and Vit D 500mg 2xday.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60mg 1xday, Simvastatin 20 mg 1xday
Diovan 80mg 1xday. Fosomax 1xweek 70mg. MCD may be from hypersensitivty to 5ASA drugs.


Old Hat
Veteran Member


Date Joined Feb 2007
Total Posts : 5136
   Posted 9/10/2007 4:50 PM (GMT -7)   
You may have grounds to sue for medical negligence. I recall that a Texas UC patient wrote to this site ca. March that he intended to contact the state attorney general's office re bad practices in his GI's office. It sounds like you could use an ombudsman's advice, at least. Good luck & sorry that this happened to you. / Old Hat (nearly 30 yrs with left-sided UC; currently on 3 X 3 Colazal daily for July flare in descending colon; should be back in remission soon)

nhmas
Regular Member


Date Joined Feb 2005
Total Posts : 44
   Posted 9/11/2007 7:12 AM (GMT -7)   
Hi Beth,
 
I remember reading in another thread that you went the same GI as I do.  I have been going there for almost 3 years and they have never done a Urinalysis on me and I have been on 5-ASA's the whole time.  He seems very bad at addressing issues that come up that are medication related.  I'm probably going to change GI's as I've had other issues with him as well.  I wish you the best in getting through your MCD. 
 

Beth75
Veteran Member


Date Joined Jul 2007
Total Posts : 2148
   Posted 9/11/2007 9:23 AM (GMT -7)   
thanks nhmas, I am getting that feeling myself and he did not recommend entocourt and I wonder why? I have mild colitis and don't really think at this point immuran would be the best course for me. I am now really worried about side effects that cause diseases. I would recommend asking for a urinalysis to check the proteins.

Old Hat - I definitely want to review my medical records and not sure if I can get copies of them, but would like to put the whole experience into a timeline to figure out when I first went for the edema and number of times and see if they actually wrote it down each time I went. Then I would like to bring this to the appropriate person's attention and hopefully get them to make some changes. (not sure how to go about doing that yet).

In continuing to think about this, there really should be a database where you can cross reference prescriptions with symptoms and diseases to find out this kind of stuff yourself. I mean, how do you check every single symptom for renal disease.......that could take a very long time...not that it's not worth it but i'm sure most would get frusterated and give up long before finding all the info. Plus if you are not educated for it, you may miss things that a trained professional could see.

Also, before getting pregant all GI's should be doing a urine analysis for their patients to check for this. If I had gotten pregnant, I could have lost the baby, had pre-eclampsia and other possible conditions and may have had problems even conceiving.

The more I think about this the angrier I get that no one took my edema seriously.....it's a warning sign for kidney problems. Sounds like medicine 101 to me.

My goal right now is to get better, educate myself and also to bring this to the attention of my Dr's, the place where I see all of them and also my insurance company. I want them to know that I know and that in the future, they need to listen and take better action.

I had a friend in high school and she had heart problems and she was supposed to go for surgery in March 92, then they told her they had a more urgent case and pushed her off until May 92......she died in April 92, she never made it. I had forgotten the full meaning of an important lesson I took away from that, being your own advocate, I have said it hundreds of times since then but only when I was first dx'd w/UC when they wanted me to wait 3 mos to come in and I explained that I had toilet bowls full of blood and did not think I would survive (they got me in the next day) did I really stand up for myself up until recently.

I recommend everyone on 5ASA ask for a urinalysis......doesn't hurt to pee in a cup!
Beth, 31
UC Diagnosed March 2000
Lialda 2.4mg 1xday since 8/24/07 (prev. Asacol 4800mg day),Calcium and Vit D 500mg 2xday.
Minimal Change Disease (Kidney Disorder) Diagnosed Sept 2007
Prednisone 60mg 1xday, Simvastatin 20 mg 1xday
Diovan 80mg 1xday. Fosomax 1xweek 70mg. MCD may be from hypersensitivty to 5ASA drugs.


nhmas
Regular Member


Date Joined Feb 2005
Total Posts : 44
   Posted 9/11/2007 10:18 AM (GMT -7)   
He put me on Immuran once.  After 3 weeks I had high fevers and chills.  I went to my PCP because I didn't know what was going on and he took me off Immuran after running tests. These tests showed that I was anemic and had low lipase? values.  I was told to call the GI.  The PA there said after reading my PCP's note "Well, it could be a virus".  I was too sick to react at the time, but the more I thought about it the angrier I got.  They recommended a second opinion after that as I refused going back on Prednisone, Remicade or a change to Lialda (I'm very compliant and have no issues taking pills twice a day and didn't want to get any worse).  The reason I refused prednisone is it wasn't that affective anymore and they weren't addressing any of the side affects I was having.  I didn't trust them enough to have them give me Remicade infusions.
 
I asked for a Bone Scan because it had been 2 1/2 years since my last and I had been on prednisone several times in that time, 1 time over 3 months.  They scheduled it, but the comment I got from the PA was "Well, you take calcium, don't you? It shouldn't be an issue". 
 
I could go on.....I have an appt there on Thursday.  It will probably be my last.
 
Good luck to you.

nhmas
Regular Member


Date Joined Feb 2005
Total Posts : 44
   Posted 9/11/2007 11:02 AM (GMT -7)   
Regarding this comment "Well, you take calcium, don't you? It shouldn't be an issue". 
 
What she meant by that was bone loss shouldn't be an issue
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