Enteropathic Arthritis

pickle

Hello Everyone, I have just found this forum and hope you don't mind but I would like to pick your brains! I was diagnosed with Enteropathic Arth (I also have crohns, fibro and chronic pain) about 6 years ago. I thought I was jogging along alright but in the last couple of years I have really lost control of this disease and to be honest it is kicking my a**e. I am really struggling to manage my emotions around this at the moment and wonder if there is anyone else out there who has any sage advice. It has recently flared up really badly in my iliosacral joints and it would appear that I have exhausted alot of the treatment options. Sorry to sound so negative on my first post but I am really struggling. Thanks for reading. Pickle x

valval

hi pickle welcome do not worry about negative post most our to start with people only look for help when they desparate but we do not mind can not help you with this but phone the help line if desperate they great at giving advice and soport sure some one will be along soon that can help val

hileena111

Hi Pickle.,
Welcome to the forum
I cant help either sorry....I've got OA in hips, lower spine ankle and neck
Recently I had a a pain that was diagnosed as a sprained sacro illiac joint , then as a fractured pelvis, now they are looking at the gall bladder :eek: :eek: I'm on crutches because of this.
Anyway hope you enjoy the forum and I'm sure someone will be along to help that knows what you are going through
Love
Hileena

dreamdaisy

Hi, it's nice to meet you. I have never heard of your form of this dross so have no advice to offer apart from seconding valval's suggestion of ringing the helpline. Please post more about yourself tho so we can all learn about this and so support you better. I have PA in my sacroiliac joints, knees, ankles, toes and occasionally hands, wrists and shoulders (when I flare they hurt more, normally they are tolerable) and OA in my knees. I wish you well. DD

skezier

Hi Pickle,

Welcome from me as well.

Got crohn's too and its evil enough with out the bone one as well. I have pa and oa and they hint at the bones/crohn's one as well. I wont have fibro no matter how much of the symptoms I have

The good news on the crohn's.Enteropathic one is they use the same drugs to control both so don't panic too much as they do respond quite well to the drugs once they have got the right one.

I find of all the things the crohn's is the one that floors me the most. Partly cus you up all night as well as all day..... its evil isn't it when its in full flare!

For the bones they originally put me on sulfa.... It really controlled the crohn's very well. It also dd a half decent job on the bones for a while but then I got major reactions and was changed to mtx....

Its not as good for either but there are a few drugs they could help you with.

When do you next see them, either gastro or rumo? If they are not already doing so ask them to talk to each other cus they need a decent plan for you for the management.

Pickle I know its hard but its not as bad as it is now once there is a decent bit of control there. For the fibro I hope your on something like the gabapentin or pregabalin?

Hang in there and nice to meet you.

frogmorton

Hi Pickle

So very pleased to meet you

Sorry you have had to find us but glad you have because this is a great and suportive as well as informative place to be.

If you let us know what treatments you have tried then we might be able to help. I know from cris (skezier) that in some areas treatment options are limited, but we MIGHT be able to help?

Love

toni xxx

constable

Hi Pickle

I do love your username, brilliant.

I can't help you I have OA, but welcome to this lovely forum where there are great people with good advice,help, and if you feel like it, a good laugh. If you want to have a rant, you rant away, we all do it, it's really like a theropy in it self.

If you have an appointment or something that you are nervous about we do virtual pocket duties, we will jump into you pocket to be with you (virtually).

Anyway, you will love being a part of this forum.

Karen xx

pickle

Hi Everyone, thank you so much for your replies! I appreciate your support.
I am currently on sub cut methx, I don't generally tolerate drugs well but I have been on this now (on increasing doses) for about 5 yrs and it seems to suit me. I have tried humira and inflixi and had to stop both due to awful side effects. The crohn's unfortunatley seems to not like anything that makes my pain better so pain relief is a dead end too (unless I am actually in so much pain I think I may die, then I take as many drugs as I can and deal with the side effects later :roll: ). tbh the fibro just makes it all more complicated! I have been trying to get my gastro and rhuemy to talk to each other and think that I may have finally managed it so, it's not all bad! I am currently trying to look at ways of trying to manage the pain and flares without drugs. I shall keep you updated with how that goes! I am currently trying an accupressure mat I got off the intertubes! If I don't turn into a human collander ha ha!!
Thank you for your offers of support, I too will be up for doing pocket duty for anyone who needs it. Hugs to you, Pickle x

dreamdaisy

Intertubes. I like that. What a smashing word! I am humira-ing tonight, pickle, and mething on Wednesday. Grrrr. I just wish I could feel it doing something but obviously neither touches the OA (or the recently torn ligament!) Take care and keep in touch. DD

pickle

Ah yes dreamdaisy, injection night! Not quite as much fun as one would imagine eh? Best of luck with it, I hope the humira starts to make you feel better soon. Hugs, Pickle x

dreamdaisy

Thank you, I appreciate the sentiments. DD