Help

ichabod6

At the end of last year or maybe the beginning of this I stuck a post on
here asking if anyone had crohn's disease as well as rheumatoid arthritis.
I know one lady replied but before I could her contact some things went wrong
including falling off this site BUT I'm back on again, spring is here and the
proper cricket season starts tomorrow and I'm pretty steady now.
So with apologies to the lady who replied before may I pose my query
again - does anyone have ra and crohn's disease who would like to
contact me on here or by pm. What I'm wanting to do most of all is
discuss medication and blood tests.

frogmorton

Hi Ichabod

good to see your name.....is it Cris who has PA and chron's??

As in skezier??

Love

Toni xx

ichabod6

Thanks Toni.

Dont know.

skezier

Hi Ichabod,

Its funny I was wondering about you just the other day.

i have got crohn's and pa and have had them for a while now. the seem to flare together half the time......

Hope your ok and will be back later and if I can help I will.

Really pleased to see you again. Cris xx

ichabod6

Hello Cris,

Are you the lady I lost and if you are (or if you are not)
may I pm you?

skezier

Hi Ichabod,

You did pm but sorry things have been a bit iffy for you. I will be back later and if I can help I will.

Really pleased to see you again. Cris xx

ichabod6

Hello Cris,

Thanks for this. I really am sorry for being a pillock and losing
you. The drugs I want to talk about in particular are humira,
methotrexate, prednisolone and azathyroprine. Have you used
any of these?
Do you want to talk on here or by pm?
I'll have to go off for a little while; just got in from the cricket and
need my tea.

skezier

Hi Ichabod,

Hope you enjoyed the cricket? hey come on you could have left some tea

I am happy here or pm which ever is better for you is ok by me.

I have used the preds, mtx and almost the azathyroprine. As of last gastro appointment (and rumo) I have been told I can’t get funding for any of the ant’s.

I had a flare 5 years ago, worst I have ever had since I was 9 and it was the preds that stopped it actually inside 2 weeks! Trouble is I reacted to them so only was on them 4 months... so glad to get off them but would take them again if it ever flares like that! It was horrendous and dropped 4 stone in 7 months. sadly I put it back on :roll:

I couldn’t get to see a gastro (we don’t have a good hospital here) so saw him privately and he gave me the preds so by the time I was seen on the nhs it had calmed down. Had a load of tests, was offered surgery but decided I would see what happens.....

Thought it was kind to me as except for 3 skip patches I the ileum ( we think but waiting for the camera capsule again) I thought it has left me be fairly well....

Turn’s out it hasn’t and its gone after my oesophagus with class 1 inflammation.

Icky it is an evil thing actually waiting now to see what else might have happened in there and ... what do you know... to see the gastro again.

I have got all this class 1 while on 20 and 25 mg of mtx. It’s now injections as the tablets helped do some of this and even at 20 and soon to be 25 the mtx is only just holding it.

I was on sulfa for over a year. Icjky that had the crohn's by the throat and it only kicked off when I had to come off it cus of another reaction to the drug that got so bad I really did have to stop taking it.

The crohn's flared again for 3 months but the mtx did eventually get a hold on it but not till I hit 15mg. The sulfa got it almost immediately as it is actually absorbed to a fakir degree in the intestines and it’s a fairly standard crohn's drug though I was put on it for the pa. the crohn's control was a bonus but the leaflet comes with it and says all about crohn's.

I was put on a higher than I wood normally have dose and it went quiet till I cam off them.

the speed it can come back at is staggering cus it flared with in 2 weeks.

I don’t know about you but I hate it! I hate what it does, the unsociable side cus you dare not go anywhere.... tmi but on a flare I get 10 15mins in-between and it wont stop :oops:

Hey because I was left with the terrible flare for 9 months in all I did manage to calm it by diet. Mine doesn't like so many things I do.....

Might be worth trying it as crohn's is known to be food sensitive as well. I cant eat things when its flaring but be honest when it flares what ever you eat and even if you don; eat doesn't really stop it.

I have leaned what I can’t eat as it will send it into a flare as well but I have had it a long time.

I done a lot of reading and contacted NACC and its kinda pointing to the azathyroprine as being the best to control it in most cases.

I don't know how much of this can help you but please ask anything you want either here or by pm and I promise you I know this enemy family well. You take care and I hope you had a good night. Cris xx

ichabod6

Thanks for this Cris.

A little while ago I wrote a long and detailed reply but
when I come on here it aint here.
I'll try again but on reflection I think I'll pm it if you dont
mind.
I'm off to the Lakes for a couple of days so it may get to
midweek before I retry my reply.

skezier

When ever you do it I will be here. Its like my second home now a days

You enjoy the lakes and hope so much the weather holds for you . Cris xx