Kotas Meds have been changed.. Whats your inputs :)

[LittlebitsMommy]

Kotas Meds have been changed.. Whats your inputs updated

Okay here goes. The last few weeks his ALT and AST have been above normal. They rechecked his TMPT enzymes and and we got the results back today. Not good said it showed he wasnt able to metabolize the 6mp. Afraid of it attacking his liver. So they lowered his 6mp to 25 mg a day. Then added 100 Allopurinol daily. After reading now it says Allopurinol is processed through the kidneys. So is this going to effect his kidney disease? Gotta call both GI and Nephro first thing in the morning.

Then I let GI nurse know something had to be done about his heart rate. You know he has went from one extreme of bradycardia his whole life to now having tachicardia. I said to start with GI thought it was elavil that Nuero had given him so we stopped for 2 weeks. Then Nuero said there was no change to start it back. I said Allergy doctor changed his inhaler although he had been on the same one for 8 years just in case that was what was causing heart rate. Still no change. Then I thought maybe steriod but he has been off it 2 weeks today and still no change. Last night he finally thought he felt like trying to ride his bike. So after sun went down we went outside. It wasnt to warm out. He rode his bike maybe 150ft and had to stop. Checked his heart rate and it was 200. Ko said he was afraid he was going to fall off if he didnt stop. Said his heart was beating so fast GI nurse said let me call ya back in a minute after I told her that. She called me back and said Dr wants to stop his Pentasa for 2 weeks becasue that can cause high heart rate Uh okay but why couldnt you admit it might have been something you put him on months ago.. Ko was scared to stop Pentasa afraid he will start hurting worse and have to go back to the hospital. Possitive thing about not taking Pentasa its cuts out 42 pills a week

Has anyone ever taken these 2 meds together. Thanks everyone for all the help you always give me

 

[AZMOM]

I know the allopurinol/6mp combo is successful for many. It was not for Claire. Please be sure they are doing frequent labs in the beginning.

Hugs -

J.

 

[kimmidwife]

I had never heard about pentasa causing your Heart Rate to elevate like that. I hope that is what it is and hope this fixes it. Hopefully the 6mp/allopurinol works for him. Caitlyn was allergic to imuran which is a form of 6mp so we never really tried it.

 

[my little penguin]

DS is currently on both 12.5 mg of 6mp and 50 mg of allopurinol .
He wasn't at therapeutic levels so they upped his 6 mp to 25 mg. That was too much for his liver. 6 mp by itself at 50 mg was too much for his liver.

So for us it did not work but we are looking into other options at this point .
Still have no decision being made yet.

 

[LittlebitsMommy]

We are back to weekly labs? Only went one week without it being weekly that was this week but had them twice last week Is there a certain lab test they should be doing weekly? Said we would have TMPT done again in 6 weeks.

Thanks

 

[LittlebitsMommy]

Just got this online

Mesalamine can cause a severe reaction that is easily confused with a flare-up of ulcerative colitis. Symptoms include abdominal pain, cramping and bloody diarrhea. Fever, headache and rash also might occur.


Uncommon Side Effects



Many other side effects are possible but uncommon. These include acne, back pain, joint pain, muscle pain, fatigue, dry mouth, sore throat, coughing, nasal congestion, runny nose, earache and unusual perspiration. He has all of these but the cough


Serious Side Effects



More serious but infrequent side effects include chest pain, shortness of breath, blood disorders, increased heart rate, kidney dysfunction and pancreatitis. Increased bleeding also can occur, with symptoms of coughing or vomiting blood, and blood in urine or stools. Most of these besodes blood in vomit and stool.

I pray stopping this will help..

 

[Sascot]

Sorry I have no idea about the medications, just wanted to say I hope he feels better soon and his heart rate comes down. It must be making him really tired. Sending healing thoughts!!

 

[kimmidwife]

"More serious but infrequent side effects include chest pain, shortness of breath, blood disorders, increased heart rate, kidney dysfunction and pancreatitis. Increased bleeding also can occur, with symptoms of coughing or vomiting blood, and blood in urine or stools. Most of these besodes blood in vomit and stool."

This is interesting. Caitlyn has been having nose bleeds. Her doctor keeps saying it is not from her meds but this sounds like pentasa can cause this. I just googled it and it seems other people have had nose bleeds on pentasa as well. I tried calling her doctor but no answer. I am going to take her off it over the weekend and speak to him on Monday.

 

[imaboveitall]

Hey Marcia,
Just checking on Ko.
So sorry he still feels lousy!
Have they mentioned a cardio consult? V as you may have read has dysautonomia, which causes high HR and is more common in those with other disorders such as IBD.
This may bear investigating in Ko's case. V has exercise intolerance, HR jumps way up with just positional change. She had to stop dance as she couldn't tolerate the arms above her head positions.
The diagnostic key in Ko's case will be if his HR is normal at REST. May be worth a cardio consult.

 

[LittlebitsMommy]

Well we finally got okay from Nephro to start Allopurinol. I asked GI about this medicine because I was told it went through the kidneys. Gi said not to give it until I got okay from Nephro since Ko does have kidney disease. So we will start that today.

We are still off of the Pentasa. Heart rate is down a little. Still well above 100. I know it may take a longer to get out of his system and everything.

Cardio called and said they thought it would be a good idea to get a CBC on Ko. So today was lab day so Gi had already ordered that to be done. Cardio also said they would like Nephro to order a Catecholamines urine test. We got container today when we went and had labs.

Cardio said that Ko has a steady heart rate. His heart beats at a steady pace but it is just to fast. So they dont see it being a true heart condition. She says there has to be another medical reason for the high heart rate. Said of course she could put him on something to lower the heart rate but all that would do was mask the real trouble or reason behind it. Said it could be medication, pain, anxiety, hormone imbalance, dehydration and caffine. Just to name a few. Said they could tell I stay on top of things and most of all to follow my mothering instinct. If I feel something is off to take him to the ER and let them figure out what it is.

I did get result today of the blood test that were done last week. AST was 27 Normal ALT was 62 normal is 8-30.

This is what it said about the Thiopurine Metabolites
Test Results

Metabolites Results (units: pmole/8x10^8 RBC)
6-TGN 316
Reference range 230-400
Result Assesment: Higher likelihood of Response

Metabolite: Results (units: pmole/8x10^8 RBC)
6-MMPN 18478
Reference Range <5700
Result Assement: Higher Risk of Hepatotoxicity

Proprietary and patented technology by Prometheus Laboratories Inc. The therapeutic range and toxic thresholds were established in an IBD patient population recieving azathiopurine or 6-meraptopurine. Metabolite testing should not replace laboratory monitoring for toxicity.

So this is what we know now. I dont really feel like we know much more . He seems to be feeling a little better. Still super tired and not eatting much. He wants to try and do more things so I am not sure if this is him feeling better or he is just so tired of sitting and watching all the neighborhood kids play and him not get to. He says he is going to hurt weither he is sitting still or up playing so hehad rather play. He played for a little while yesterday went to bed earlier and has slept most of today besides when we were at hospital getting labs.

Hope everyone is having a good day.

 

[my little penguin]

:hug: Glad his liver numbers are slightly better.
Hope they trend downward.

OUR 6_MMPN was over 10,000 4 weeks ago
and alt/AST in the 300.
The lab messed up two weeks ago and only drew DS's allergy panel and not his GI labs.
SO we are also in the waiting game like you- hoping the new med combo lowers things enough the second time around. ( We ere at the lower dose once before- labs were ok but symptoms were not:yfrown:

 

[LittlebitsMommy]

It seems like its just a waiting game with everything. He has been up and around more today. Which means he will probably sleep all day tomorrow.
I have asked him if his tummy feels any different since we have cut back on the 6mp and cut out the Pentasa. He says no it doesnt feel any different. I know it will take a while for his body to adjust but I guess in the back of mind I wonder if there is no difference if he is on or off it then why does he have to take it. No I would never take him off it. So I dont want people to think I am saying that. I wouldnt do anything without talking to Dr but it just makes me think. As if I dont do enough thinking as it is.

Thanks everyone for always listening to me.