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upsetmom

upsetmom

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We saw the GI today. A lot of things in the blood test were wrong.
Her ESR and CRP were still climbing since the last test. Her iron levels were low. There were a few more things wrong but i can't remember exactly what.

Shes on Pentasa at the moment and now we are adding Imuran and flagyl .
Does this combination sound right ...to me it seems like too many tablets...:yfaint:

We discussed puberty and the DR thinks she wont get her periods or start developing till we get this disease under control.

I don't like the thought of giving her so many tablets...:(...but hopefully they work.
 
(((((((hugs))))) I'm sorry the appt wasn't better.
I don't know about the combination. I'm sure somebody will though.
I don't like giving Devynn pills either :(
 
At one point ds was on 6-mp , allopurinol, asacol, Prevacid, and Zyrtec as far as pills.

We ave found over the years different drugs do different things so as long as the doc is aware of all the different drugs and the pharmacist ;)
Then your ok .

Hope it helps
 
Jack was on Apriso and Imuran. Apriso is same class of drugs as Pentasa 5-ASA and no issues with him.
Hope the combo gets it all under control and she is developing as she should soon
 
Upsetmom

The most important thing is they do the TPMT test before starting AZA and the do regular bloods tests at the start. Sarah had weekly blood tests at the beginning.
 
Last edited:
Catherine
What is a TPMT test? ....no one mentioned anything ...i'm supposed to give her her 1st tablet tonight
 
Click on the highlighted word to my previous post. Sarah didnot have the test until after starting aza either as it was not ordered.

Please don't be overly concerned, I don't think it standard practice to order it Australia but it is available, and there is a small group of people who shouldn't take aza.

Sarah has now had this test. Were you given forms for blood tests?

I have also sent you a PM as I am not to disclose private information (as per Sarah) on here anymore. As people we know can see what we post.
 
Thanks Catherine

This was never mentioned to us.

We do have the forms for blood tests
Weekly for 2 weeks..... then every 2 weeks .....then monthly
 
Good luck with the new tablets, hope they work soon. My son is on 6mp and we have been told if his fistula flares up then he has to take Flagyl asap.
 
Thanks everyone.

Last night she was terrified to take her tablets because they warned us that they might cause nausea....she eventually took them right before bed..This morning she had a sore throat but apart from that she was good.
Her inflammatory markers have never gone down so i hope these meds work.
 
Hi upsetmom,

The combination of meds is not unusual but in view of your daughters continued rise in inflammatory markers I thought they may pull Pred in to hit it hard and fast.

As mlp said, Imuran will take at least 3 months to become fully therapeutic so it vital to have the faster acting meds kick butt in the meantime. The Pentasa is an anti-inflammatory and the Flagyl should treat any infection that is present due to inflammation breaching the mucosa and it is also thought to have anti-inflammatory properties.

Chronic inflammation can and does delay puberty but once remission is achieved the process will begin in earnest!

Good luck Mum, I hope the meds do the trick for your girl. :hug:

Dusty. xxx
 
Just an update

Nausea and fatigue started straight after the first tablet...today lots of vomiting couldn't keep anything down..:(..We saw the GP and he gave her nausea tablets...shes now feeling a bit better....Dusty suggested we try giving it with food (Thank you Dusty..:) )....Hopefully that helps.
 
Glad the nausea meds are helping. Have to say I always give my son his 6mp about 15 minutes after dinner (I wanted it to be the biggest meal of the day). So far no nausea thankfully.
 
She woke and was ready to be sick so she took the nausea tablets...i tried to phone the nurse but she wasn't working today.

I might try giving it to her after dinner like sascot does.
 
I thought i'd give an update.

After a feeling sick from the imuran things have finally settled down. Now on Thursday shes going from 50mg to 125mg.....I'm just wondering will the side effects come back on a higher dose.
 
upsetmom said:
I thought i'd give an update.

After a feeling sick from the imuran things have finally settled down. Now on Thursday shes going from 50mg to 125mg.....I'm just wondering will the side effects come back on a higher dose.
Click to expand...

When my son was on 6mp, it started at 50mg and stayed there. I would think the build-up to 125mg on Imuran is intended to allow the body to adjust with less side effects. I hope so! Good luck!
 
Well things have been going down hill since starting 125mg..i don't know if its from the imuran it might just be a coincidence.

My daughters fingers have been peeling and its spreading. Today she has a red itchy rash on her thighs, the skin in her mouth looks like its peeling, her lips are very dry and her feet have also started peeling. She still has nausea. Our GP said it's an allergic reaction. He suggested i speak with the nurse and see if they can lower the imuran as all these problems started when she started 125mg.

She was going to get a blood test for streptococcus tomorrow but after i sent the nurse an e-mail with the photos from the rash on her thighs she rang me and they want to see her tomorrow...A dermatologist will see her as well.

I just hope this is all caused by the imuran....and not another problem.
 
Poor girl!! It definitely sounds like an allergic reaction to the Imuran. That's really good they are seeing her so soon.
 
I'm glad you're seeing GI and dermatologist tomorrow! Hope they can give you an easy solution! :ghug:
 
I'm sorry yet another symptom that she has to deal with. This one sounds serious. I'm glad they are going to see her tomorrow.
 
They have no clue what this is. The GI said the skin peeling and rash are not from the imuran. He stopped the flagyl because he thinks that might be causing the nausea.

The dermatologist had a look as well and said it's probably from the flu she had 2 weeks ago. She said all her skin on her hands and feet will peel off.

They did a blood test for streptococcus and we will find out the results on Friday. So we are no closer to an answer.
 
upsetmom, I hope she feels better soon. They have never figured out what caused Devynn's skin to peel off either. Is your daughter in pain? Devynn's feet get so sore when they peel.
 
Devynnsmom said:
upsetmom, I hope she feels better soon. They have never figured out what caused Devynn's skin to peel off either. Is your daughter in pain? Devynn's feet get so sore when they peel.
Click to expand...

Devynnsmom
Didn't your girl have the flu before the peeling?
Sorry I forget!:ghug:
 
Her fingers are quite sore ...the rash on her thighs is a lot better after putting on steroid cream. Shes been trying to avoid having showers because her skin peels even more.
She still woke up with a lot of nausea even though we stopped the antibiotics. I'll be talking to the nurse tomorrow.
 
Skin peels with the flu? Really? The dermatologist had no other thoughts?

I hope she feels better soon. Poor thing...
 
How many days has she been off the antibiotic? One? It can stay in your system for a couple/few days. My son reacted badly to flagyl. I hated that medication.

No shower. Would a bath with mineral oil help? Can the skin get rehydrated, or is it like a chemical burn?

I hope the nurse has a good suggestion. Good luck.

Kimberly
 
She kept telling me that when the hands swell and they go back to normal the skin peels...BUT there was no swelling to begin with.:yfaint:
 
Last edited:
Kimberly27 said:
How many days has she been off the antibiotic? One? It can stay in your system for a couple/few days. My son reacted badly to flagyl. I hated that medication.

No shower. Would a bath with mineral oil help? Can the skin get rehydrated, or is it like a chemical burn?

I hope the nurse has a good suggestion. Good luck.

Kimberly
Click to expand...

Shes only stopped the antibiotics last night..but shes been on these before without this problem.

The skin stays very dry.

We just put gloves on and plastic bags on top so she can have a shower.
 
What about those special gloves that some women wear at night to hydrate their hands? I might be afraid of infection, but if you lather her in antibiotic gel, coconut oil, or the steroid cream, and then put the gloves on, maybe that would provide some relief? The gloves sell in our local store near the wrinkle creams. I don't know what make the gloves "special". Maybe it's just a gimmick?

Good luck! Here's to a speedy recovery!

Kimberly
 
I put on vitamin E oil and then gloves...I hope it helps.
Her thumb has peeled that many times that it was bleeding tonight..:(
 
An increase from 50mg to 125mg seems pretty big. No wonder she is feeling a bit nauseated. My son was started on 50mg and then put on 75mg which made him nauseated, then his white blood cell count dropped and they realized it was way too high a dose for him. There is a period of adjustment with the nausea that will go away but our GI said if you are feeling the side effects, the dose is probably too high for you.
My son now takes 50 mg per day and is 5'9" and 128lbs. It's a pretty low dose but it is right for him, maybe your daughter will just need a lower dose??

Also, our new GI said it was okay to eat before the 6mp (our old GI said no) but it is not suppose to be taken with milk products as it can inhibit the absorption. My son takes it at night right before bed to sleep through any mild nausea.

It took us a while to find the right dose, so hang in there. Once we got it right, 6mp has been a wonderful drug for us. :)
 
My GP recommended that her dose gets lowered but the GI said there's no way they're lowering the dose....they said they need to give the right amount for it to work. If the nausea persists for a a few weeks they are going to try 6mp.
 
When my son went on azathioprine it was 75mg and he took it with his evening meal to reduce nausea. He now takes it just before bed. He was also on Omeprazole when he first started it and this helped. he is now off that and on 100mg of aza and fine. not all drugs suit all people. Go back to the docs if not happy
 
There is a blood test to check the levels of aza in the blood. Sarah had this blood test and her levels were really low, and why she moved up to 125mg.
 
This morning when my daughter woke up her hands were a lot better ...till she washed them then the peeling was back...I'm taking her to see a DR tomorrow who specializes in skin . He's not a dermatologist just a GP.

Blood test for strep was good...so the nurse still thinks this is all caused from some virus she had.:ybatty: I'm still not convinced this is all from a virus. I hope this DR has an answer for us tomorrow.

Also her ESR had gone from 24 to 48 in a week.
 
My dad had peeling skin on his hands and feet from his chemotherapy. The Dr. didn't seem at all surprised by this side effect. I know that 6mp is considered a chemotherapy drug, do they feel that might be the cause?
 
What weight is your daughter, Sarah's GI didn't what her on 125mg of aza as she considered the dose too high for her body weight.
 
Stevens-Johnson syndrome is a rare and unpredictable reaction. No test is available to help predict who is at risk. Some factors, however, may increase your risk of developing Stevens-Johnson syndrome, including:

Existing medical conditions. Viral infections, diseases that decrease your immunity, human immunodeficiency virus (HIV) and systemic lupus erythematosus — a chronic inflammatory disease — increase your risk of developing Stevens-Johnson syndrome.
Click to expand...

from:

http://www.mayoclinic.com/health/stevens-johnson-syndrome/DS00940/DSECTION=risk-factors


Signs and symptoms of Stevens-Johnson syndrome include:

Facial swelling
Tongue swelling
Hives
Skin pain
A red or purple skin rash that spreads within hours to days
Blisters on your skin and mucous membranes, especially in your mouth, nose and eyes
Shedding (sloughing) of your skin
If you have Stevens-Johnson syndrome, several days before the rash develops you may experience:

Fever
Sore throat
Cough
Burning eyes
When to see a doctor
Stevens-Johnson syndrome requires immediate medical attention. Seek emergency medical care if you experience any of the following signs or symptoms:

Unexplained widespread skin pain
Facial swelling
Blisters on your skin and mucous membranes
Hives
Tongue swelling
A red or purple skin rash that spreads
Shedding of your skin
Click to expand...

from link above
 
A friends son had SJS and almost died. They thought he had chicken pox and it went from a few spots to him being in intensive care within about 48 hours. He was in hosp for about 3 mos.
 
Thanks MLP this what i'm asking the DR about today. I spoke to the nurse and she doesn't believe its SJS she thinks its from the flu / virus she had the week before.
 
Ds had rashes and skin peeling due to remicade per the dermatologist we saw on Wednesday.
Not sure about spreading etc...
hope the GP can help.
 
Maybe you can get the dr to order this blood test: thiopurine metabolite

It tests the aza levels in the blood it cost $140 at our lab. We didn't get the bill but the lab didn't record they sent the test either.

If you do manage to get it order make sure they look it up there book as it has to be sent away.
 
We saw the DR that specializes in skin disorders and have an answer...The DR says its Exfoliative Keratolysis. The cause is unknown. He said it usually happens once , lasts a few months and doesn't come back. He didn't believe it was SJS ,from the imuran or from the flu / virus. Treatment is steroid cream and lots of moisturizer . He knew more than the dermatologist we saw the other day.
 
I'm going to write that in the book I keep for Devynn and ask our doctor about it. We have been to the family dr, ped, and derm and nobody has any ideas. I hope your daughter feels better soon.
 
I hope the creams work for you girl Mum and the condition clears up sooner rather than later! Good luck! :heart:

Hoping the nausea settles too! Fingers, toes and everything else crossed!

Dusty. xxx
 
No there's no improvement. The peeling has spread on both her hands and feet.:(
For some reason i keep thinking this is from the imuran.

Good news is the nausea has gone.
 
Was there any mention that things may worsen before they get better?

That is so good to hear about the nausea! :):):)

Dusty. xxx
 
I don't think he mentioned anything. I'm taking her to see him again tomorrow if hes working.
 
That sounds like a good idea hun. I hope you get solid answers...good luck!

Dusty. xxx
 
My daughters hands are starting to improve..:ylol:..but her feet are quite bad..:(.. All the skin is peeling off and they look red...hopefully they'll start improving soon as well.
 
If the hands are improving, that'd make me feel better anyway. Surely the feet will soon follow!
 
When my dad had the peeling due to his chemo meds he also had a loss of sensation in his feet and hands. Is she having any other issues besides the peeling?
 
No other issues apart from the peeling and a bit of bleeding.
But then come to think of it she keep complaining that her leg keeps jumping /twitching . I keep thinking its restless leg syndrome but she says she doesn't shake it...her brain tells it to shake..:yfaint:..she due to have a blood test soon.
 
Just checking in. I am glad the peeling is improving. Could the leg thing be a side effect of imuran? I did a search and found several forums where patients on imuran said they experienced muscle twitching. It is not listed as a side effect that I could find.
 
I hope the feet soon catch up with the hands Mum, bless her. :heart:

What blood tests is she having?

Dusty. xxx
 
Kim i think this leg thing started before she started imuran, no one seem to know what it is and they don't seem too concerned.

Dusty shes having her normal blood tests....FBC...LFTS ...EUC ...ESR ... CRP...6MMP...TGN . Would this be enough. She had her iron, magnesium and vitamin D tested a few weeks ago.
 
I just checked on the last blood test... magnesium wasn't tested.
The last time it was tested was when i took her to the ER in October . It was .69 so it was low.
I've just sent the nurse an email asking for it to be tested again.
 
upsetmom said:
FBC...LFTS ...EUC ...ESR ... CRP...6MMP...TGN .
Click to expand...

This is the blood test my daughter is having. Now i asked the nurse to check her magnesium.... She sent me an email and told me to add CMP and Iron studies. She said they'll test everything to see whats causing this leg problem. Would that test include magnesium?
 
upsetmom said:
This is the blood test my daughter is having. Now i asked the nurse to check her magnesium.... She sent me an email and told me to add CMP and Iron studies. She said they'll test everything to see whats causing this leg problem. Would that test include magnesium?
Click to expand...

No. Magnesium and Zinc are usually ordered individually - not a part of the usual panels.
 

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