The Saga continues..

Crohn's Disease Forum

Help Support Crohn's Disease Forum:

Sascot

Sascot

Joined
Aug 28, 2011
Messages
3,376
Well, had a call from the nurse today. They want Andrew to stop taking the Aza because his liver function was steadily climbing up. Now as much as I am happy for him not to take the Aza, I am rather scared as to what their next step med will be!!! I am having visions of humira or remicade, which I really didn't want to do :eek:- was hoping to leave them for use if he is ever really bad. Sooo not having a good day!
 
:( Oh Sascot I am so sorry. Sucks to hear the drug that is supposed to be helping is hurting in another area.

I know what you are feeling about Remicade, I basically said the same to our doc, but tuck this away for future use...He said and I am paraphrasing here:

Remicade can work for a long while and while it seems it is the drug of last resort it isn't. It is totally possible to use the Remicade for a long while and if it stops working move to another drug (Aza, MTX, 6MP, Pentasa etc). He also said that kids bodies and level of disease are constantly changing and just because something didn't work once doesn't mean you can't revisit it at a later date or that just because you had to pull out the big guns early doesn't mean you will always need them (although if Remi works most stick with it until it stops because reintroduction isn't always effective). Also, if Remi doesn't work all the way, other drugs can be added to Remicade like a few here are using Remi and MTX. And the last point...meds are constantly being introduced so just because Remi seems like the drug of last resort now it is just a matter of time before a new one is introduced...or even a CURE!

:ghug:
 
So sorry Sascot :( I know it was a struggle to just accept the Aza and now so disheartening to be told it's not working. :( :(

Notwithstanding the liver issues, has the Aza taken his Crohn's to a more 'stable' condition? If yes, perhaps his GI would consider LDN before attempting another drug. And, he could add EN (keeping his regular food!) for it's anti-inflammatory properties and to help the LDN along (not sure if he already takes EN as a maintenance??).

Did the GI ever consider Methotrexate? Not sure if it can also cause liver issues though???

Again, I'm so sorry, I can well imagine your disappointment. Thinking of you!!! :Karl:
 
UGH...what terrible news! It's so difficult to finally come to terms whith putting your kiddos on these drugs: to hear that they aren't the answer is such a struggle. :( (((hugs)))), mama! hoping for some good news for you and Andrew in the near future!
 
The community nurse came out to the house today - 2 attempts to get blood failed miserably so Andrew was rather upset. He has to have his liver function checked next week Tuesday, so persuaded them to wait till then for the ones they were doing today - phew!
The next step is to try 6mp. A little question - do I let them start him on that the week before we go on our 2 week cruise and HOPE that he is ok, since we are no where near a hospital, or do I tell them to wait until we get back? Ah the dilemma's :ybatty:
Needing a glass of wine myself - will drink away from the laptop Crohnsinct! :)
It is my 15th wedding anniversary today and my long-suffering hubby got me a lovely crystal ring/necklace/bracelet :ycool:
 
:Karl: Happy Anniversary!! :Karl: I hope you are able to go out for a nice dinner and show off that lovely gift!

Sorry, no advice re the 6mp before or after the cruise but would definitely ask the GI.

:)
 
:rof::rof:wine...computer...LMAO:rof::rof:


AWWWW! Happy Anniversary! Enjoy that wine and your adoring hubby!

Sorry can't help re: 6mp but are they now thinking that is treatment of choice or just to use until he starts Remicade?
 
So sorry about the setback. Deciding to use any of these druge is difficult. I also battled using Remicade, but alas, we are now doing remi/methotrexate. I am learning that it's so important to get these flares under control.

R took 6mp for 2 1/2 years with great results. The only side effect was hair loss. But they did check levels alot at first to get dosage right. I would want to be on it at least a week before going on a cruise. Wouldn't want to get too far away on a new drug. What is your other option...staying on the AZA until after the cruise? Is there a risk involving liver functiion? Could you have bloodwork checked on ship?
 
agcanniversary6.gif


Hope you had a fab day hun! :heart:

As to the 6MP...hmmmm...I think if you had bloods just before you go then perhaps it would be okay. I know people can experience different or no side effects when they switch from one to the other but if his issue with Aza was gradual then if, heaven forbid, he should develop the same problem it won't be apparent for the time he is away. Can you check with the doc?

Good luck hun!

Dusty. xxx
 
Thanks for the anniversary wishes! Andrew is off the Aza completely now, so we wait until Tuesday for another blood test (which is starting to become a problem poor boy) to check liver function. If that is ok, then we move onto 6mp - I still haven't really had a chance to talk to the doctors about starting before the holiday.
 
Good luck hun and I hope the blood taking isn't too traumatic, bless him...:hug:

Dusty. xxx
 
Sascot
I have to say I am a little confused. Aza and 6mp are related drugs. Aza is a precursor to 6mp so if aza is affecting his liver wouldn't 6mp affect it the same way? I would want to be very cautious about that and would ask the doctor about that.
 
I was told Aza is metabolised in the body to create 6mp. Therefore it is more work for the body to breakdown the Aza than it is use 6mp. That is why people who do not tolerate Aza may be able to tolerate the 6mp. So, maybe it is not as harsh on the liver? But Kim is right to suggest caution.
 
Ds was on 6-mp and had to be taken off as well due to elevated liver enzymes(AST/ALT). Not sure on the switch from AZA to 6-mp:shifty:

Our GI even was hesitant about using Methotrexate since it is in the same class of drug and also can cause liver issues.
Ds just started two weeks ago and we have to do blood work every two weeks regardless since it was 3-4 months before his numbers got high on 6-mp.


Enjoy your vacation.
 
Thanks for that. I did ask why they were putting him on the same family of meds but apparently, as mentioned, the 6mp is supposed to be easier for the liver to deal with. I have to say I am leaning towards not starting it until we get back from the hols (it will only be delay of 3 weeks). I believe they will still keep a close eye on his bloods again. I hope it works because the only thing I like about these meds is that it's just a pill (no injections or infusions).
I just find it all so frustrating - dont' like the fact that the meds make him worse rather than better. :voodoo: It concerns me about what it is doing to his body - changing his immune system - then taking him off it - then trying another one.

Just out of curiosity - are there any long term meds that don't have all these horrible side effects (apart from LDN, which they are not keen on)?
 
Sascot
I am sad to say that apart from Ldn there seems to be nothing else as benign. That is any so many of us have pushed our doctors into letting us try it.
 
Hi Sascot,

Terrible choices we're given, eh? The only 'safe' treatments that I'm aware of are EN and LDN and, generally, I don't even think EN is very often successful to maintain remission for a very long time... :(

The only other treatment I've heard used but, I'm certainly not recommending this as I believe this has many side effects, are steroids at low doses?!?!? My aunt, who has crohns, has used low doses of steroids for many years (10+) as her maintenance (and increases the dose during flares). Thus far, she's had no ill effects from this. However, as she was not diagnosed until her late 50s/early 60s, she wasn't a developing child and, obviously, her 'lifetime' expectancy for a maintenance medication was much shorter than a childs'.

I remember Julie (imaboveitall) was going to use this treatment for Violet as V seemed to respond very well to the steroids.

I've also heard of Helminth (worms) therapy but have absolutely no idea of any successes, how to get it, if there are side effects, etc. but there is info on this on the forum.

:ghug:
 
Thanks Tess
I forgot to mention En as I was thinking medications. One of the issues with long term steroid use is it can cause severe osteoporosis. It has bad effects on the bone density. As we know kids are growing and building their bones so steroid use should be limited in kids
 
Yeah... :( I agree Kim, that's why I mentioned that my aunt's choice was a bit different... a bit morbid to think this way but... being so much older, I suppose there is less time for the steroids to do its damage???

It just really sucks that there are so few 'safe' options for us to consider! :ymad:

I don't recall if Julie was planning on keeping V on steroids everyday or if was going to be an off and on again treatment??? But, I imagine, if it's 'on' again fairly regularly, the damage being done would be similar... :(
 
Soooo very tired! :depressed: It is 11.35pm and I am still awake only just managed to get Amy to go to sleep with the pain she has in her bottom. That has been over a week now - usually it goes away after about a week, so I am really hoping it wont' last much longer. It is so frustrating, not being able to help. The paediatrician asked for faecal calprotectin and c.diff to be done, but that will take a few weeks to come back and I have nothing to help her in the mean time. Giving her calpol and ibuprofen, but it doesn't do much :yfrown:
Poor Andrew had another 3 attempts to get blood today. The nurses gave up after 2 attempts and got the doctor. He managed first time - yay, wish he was always there!!!
 
Hi Sascot,

So sorry you have concerns over both of them! Now that Stephen has been diagnosed, I'm constantly worried that something will come up with Emily - we're actually still (apptmt's been rescheduled a zillion times since March!!!) waiting for final results from tests from rheumi... but, thankfully, rheumi is not expecting anything negative :))

I hope you can get some answers for her sooner rather than later!

For Andrew's blood tests, have you tried Emla cream? Poor kid, the cream won't make it easier to take the blood but will, at least, numb the area while they are trying! (They also sell it as a patch that you put on 20 min or so before the needle.)

:ghug:
 
:hang: Sascot

I hope your daughter is feeling better soon. It is so devastating to see your kids in pain and have nothing to take it away. I once called the GI nurse in tears when my son was having bouts of horrible abdominal pain, and I don't usually do things like that... I also worry constantly about my daughter any time she has the slightest thing that might point to Crohn's. I really hope things get sorted out for both your kiddos really soon.
 
I am thinking of you and your family - I hope things improve by the time you guys go away - you all need to have a good break and hopefully the cruise will provide this well earned time together - sending you big hugs xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx
 
Hey Sascot...:hug:

I'm so sorry that both your babies are continuing to have problems. :( I know your blood taking system is different to here but is it possible for the GP to take it?

And Amy, bless her, I hope they are able to find out what is causing the pain ASAP and she has lasting peace and relief.

Thinking of you, :heart:
Dusty. xxx
 
Well, up late with Amy again, although (dare I say it), it seems to be slightly better today.
Andrew seems to be doing ok, but I'm not sure if the discharge is increasing again so keeping an eye on that!
Dusty - Andrew had a really bad experience taking blood at the GP when he was about 6 yrs and is very reluctant to go there. Plus at the kids unit they use the butterfly needles which are less traumatic for him. We do use Emla cream which helps a bit but I suppose it only numbs the skin and doesn't help if they dig about!
His bloods came back ok, liver function is down to 68 from 90 so it is coming down but not enough to start the 6mp yet, so it looks like after the hols. Please send good thoughts our way that he is well and happy for the hols!!!
 
Oh no, not the GP too, :(, poor Andrew! :hug:

I am sending mega loads of luck, well wishes and healing thoughts your way that both your kiddos have a healthy and fab holiday! Bless them...

:goodluck::goodluck::goodluck:

Dusty. :heart:
 
Sending you lots of wishes that everyone is well for your holidays!!!:grr1d: :grr1d: Enjoy!!! :ghug:
 
:goodluck::goodluck::goodluck::goodluck:

Hope you all have a great holiday - you deserve it - xxxx:ghug:
 
Hi Sascot just getting caught up now. So sorry that things aren't improving for either child. You mention they are digging around when trying to get blood from Andrew. THey have to frequently do that with O also. THey always tell us to make sure she drinks lots of water before blood draws and iv's. Maybe that will help the process along. Poor dearheart.

Have a great vacation and we will be parying that nothing new surfaces!
 
Just a quick one. I noticed on one of the other posts that the faecal calprotectin should be a maximum of 50. Amy's was 168 about 4 months ago. All the doc said was "it's not Crohns then", but does it mean there is some inflammation (and if so, why) or can some children just have a higher reading as their normal state?
 
Sascot said:
Just a quick one. I noticed on one of the other posts that the faecal calprotectin should be a maximum of 50. Amy's was 168 about 4 months ago. All the doc said was "it's not Crohns then", but does it mean there is some inflammation (and if so, why) or can some children just have a higher reading as their normal state?
Click to expand...

How old is Amy?
If she is older than 9 then she falls into the normal reference range of <51. If she is 2-9 then the normal reference range can be up to 166.

Dusty. xxx
 
Thanks everyone. Amy is 9 (will be 10 in September), above average height and weight though.
Sooo very tired again! Went to the movies, came back at 11.40pm to find her still awake and in alot of pain. :frown: Still awake at 12.10am.
Tried the GP today and had to endure her asking Amy if anyone touched her "down there" and "is anything worrying her just now". Why is it they always assume it's made up pain - surely she wouldn't be making it up at midnight while apologising to me for keeping me up or making it up as she is happily at the cinema with a friend!! Makes me mad.
Oh well, got some dihydrocodeine syrup which we tried tonight (along with paracetamol and ibuprofen) and she is still in agony. Wish it would go away :ymad:. Sorry for the rant.
 
Please say you didn't give her ibuprofen.

That is a drug that is not recommended at all for anyone with IBD.

HOpe she feels better
 
Well as far as the docs are concerned she is not diagnosed with anything - no IBD, not even IBS.
Unfortunately I am desperate enough to give her the ibuprofen (the GP told me to give it to her) even though I do tend to try to avoid it.
 
Do be careful of the ibuprofen... I've never really known what came first - was Stephen's backache (which we treated with ibuprofen) an EIM of undiagnosed inflammation or did the constant use of ibuprofen for an injured back trigger his first crohn's flare???
 
In desperation I phoned the community nurse who very kindly left a message for the paediatrician about Amy. Can you believe he actually phoned me at home - on his day off! :yfaint:
She is to take extra Lactulose, get some glycerine suppositories and he is phoning the GP to get some meds to help her sleep. Very nice of him I thought!
On the plus side Andrew's wound is doing well, we are down to about 0.1ml of honey going in at night, so on the mend :ysmile:
 
I so hope she is able to get a decent nights sleep, bless her...:hug:...and yes! Fab of him to phone you! :ybiggrin:

Yeehaw!!! Excellent news about Andrew. I'm doin' the happy dance!...
happydance.gif



Dusty. xxx
 

Similar threads

B
Another biologic to be added to Humira?
Replies
1
Views
401
my little penguin
my little penguin
Papantoine
Neglect?
Replies
0
Views
244
Papantoine
Papantoine
thike1966
Hotel Crohn's Forever, The Return Of The Fistula
Replies
0
Views
580
thike1966
thike1966
thike1966
Little things don’t always matter
Replies
1
Views
151
scottsma
scottsma
L
Starting Skyrizi next week.. need some support and some questions
Replies
27
Views
5K
momsa
M

Latest posts

Back
Top