Not Feeling Well Again

[CarolinAlaska]

Okay, so I looked it up. It doesn't cause sensitivity to the sun, but I guess I read about keeping out of the sun because of the lymphoma possibility? Never mind me, I am just going crazy I guess...

 

[DanceMom]

That is a relief! (Not that you're going crazy but that it doesn't cause sun sensitivity, lol)

I've been reading a little on 6-mp and it seems that is the standard for people coming off of Prednisone. Perhaps a stupid question, but does that mean that people stop taking the Pentasa or do they take both? I just want to be prepared and informed before this appointment. Otherwise I freeze and look like an idiot, lol.

 

[CarolinAlaska]

Sorry, I don't know about that as we've never had either prednisone or Pentasa...

 

[my little penguin]

It depends.
But for DS we stopped pentasa and started 6-mp.
But we also started EEN at the same time as 6-mp

 

[upsetmom]

and these stabbing chest pains have come back in the last few days.

My daughter gets these too. They started roughly about the time she started Pentasa. The GI didn't think it was from the Pentasa. In October it was happening daily for weeks. At the ER they put it down to a muscle.

She stopped the Pentasa a few days ago so it would be interesting to see if it happens again.

I have read of a girl on this forum who was experiencing the same symptoms and her GI stopped them immediately he said it was a rare and dangerous side effect.

 

[Brian'sMom]

When we were on Azathioprine we were also on Pentasa. We were told to be careful because of sun sensitivity. Our son was recently put back on Pentasa. I read on it again. It says on pentasa, "You may become sun sensive." We never had a problem before. Even when on both

 

[DustyKat]

Photosensitivity is a side effect of Imuran/6mp and like any side effect it will only affect a certain amount of users.

There are posts on the forum from members stating that they burn more easily when taking the thiopurines but for others it seems to make no difference (the point with photosensitivity being that if you are showing increased burning when exposed to the sun then you are increasing your risk of skin cancer coupled with a suppressed immune system). My own children take Imuran, are fair skinned and we live in Australia in a higher altitude so not one ideal situation! :lol: We have continued with the same precautions we always have and I have not noticed any change in their response to the sun.

We have never used Pentasa but as mlp has said it does vary. Some GI's will stop the Pentasa but others will continue to use it as a combined therapy.

Dusty. xxx

 

[Mehita]

I've been reading a little on 6-mp and it seems that is the standard for people coming off of Prednisone. Perhaps a stupid question, but does that mean that people stop taking the Pentasa or do they take both?

When DS started Aza (sister to 6MP) we were told to stop Pentasa because it makes the Aza less effective?

It is nice only having one pill (aside from the pred right now) instead of 8 Pentasa's a day. DS is liking that.

I believe all the immune suppressing meds and biologics can increase the risk for skin cancer. Forgot where I read it, but the temple area in particular is an area to watch.

Does anyone know what the overlap timeline should be with pred? DS will be done with pred in mid-June and by then he'll have been on Aza about six weeks. Is that a long enough of an overlap?

 

[ChampsMom]

My daughter gets these too. They started roughly about the time she started Pentasa. The GI didn't think it was from the Pentasa. In October it was happening daily for weeks. At the ER they put it down to a muscle.

I have read of a girl on this forum who was experiencing the same symptoms and her GI stopped them immediately he said it was a rare and dangerous side effect.

My son had the chest pains in the beginning of Pentasa... and they also chalked it up to a pulled muscle. The pain wasn't long lasting, went away as fast as it came (we chalked it up to gas pains..) He's been on Pentasa for 3 years now.

 

[DanceMom]

She had these chest pains before starting Pentasa. They come and go. At first we thought it was asthma related but when the inhaler didn't help we figured that wasn't it.

And she pooped her pants at a birthday party tonight.....after running to the bathroom twice and barely making it. This disease makes me so angry!

 

[Farmwife]

HUGS
I hate this disease too.