The craics not good

7worlds

Hi all. Hope you are all hanging in there. Havent been around much as i have had a pretty horrible week. Things came to a bit of a head last Tuesday when, after being on sulpha for the grand total of two weeks, and spending most of the day with my head down the toilet in work, i decided i couldnt cope with the headaches and nausea anymore and stopped taking them. I had hoped that it would settle down but it seemed to be getting worse. I rang the Rhumy nurse who said i had done the right thing and managed to get me another appointment for this Thursday. I know it can be trial and error and if i could just get settled on something i would quite happily go away and get on with it, but the side effects from the three Dmards ive tried have been too severe or they havent stopped the damage, or both. Havent a clue what will happen next, i just want to get on and deal with the bl**dy thing! Yours, in frustration

7worlds

LignumVitae

Awww 7worlds, sending you a big hug and lots of love. That sounds like a frustrating nightmare. I'm glad you took the step to stop and also to get back into the system. I really hope they can offer you some positive help and advice which will enable you to move forward. Please let us know how you get on, I'll be there for pocket duties if you need. Love n hugs, LV xx

7worlds

Thanks LV. Pocket duties greatly appreciated. Just feel im stuck and not moving foward with the meds, especially when i know that the RA is quite happily marching on! :roll:

7worlds

hileena111

Hi 7worlds
I'm sorry to hear you've been so bad. I dont know anything abut that med but you were right to stop it and get in touch with the rheumy nurse.
Hope they get things sorted out quickly.....I had to laugh at your title but not at your post
Keep in touch when you feel up to it

Love
Hileena

dreamdaisy

RA is a tough disease and as such needs tough meds. When I began sulph my lower half was smothered in great big bruises, and even now I bruise just because I can but to have that degree of nausea was not good. After two weeks you would have been on two tablets per day, night and morning, yes? I hope that they can suggest something else for you at your appointment but the early days of meds are often like this, one step forward (take this, it will help) then a few back as you battle with the side-effects. It is a matter of trial and error until the right thing is found. Good luck, please let us know how you get on. DD

7worlds

Thanks Hileena and DD. Part of the problem is that i work full time. Spending most of the working day with my head down the loo just wasnt a good look Im also a manager so going home sick just wasnt an option sometimes. Wish i didnt worry about such things, more fool me :roll:

7 Worlds

Glad i gave you a giggle, Hileena

dreamdaisy

Of course you're worried about such things, that is totally understandable. It may be the time to start letting your colleagues know what a tough time you are facing: very few understand (let alone know) about auto-immune arthritis, when most people say they 'know' about arthritis it's more than likely that they're thinking about osteo as that is the most common form. This is not an easy time for you, far from it, and I wish I could be more helpful. DD

LignumVitae

It might not feel like it but you are moving forward, each process of elimination, no matter how frustrating hopefully moves you closer to finding the meds that will work.

It sounds like a really tough time at work...give yourself a break, manager or not, if you are ill, you are ill and fighting it won't make that any easier to manage. You deserve to have a bit of support and time at work if that is what you need.
Lots of hugs n love, LV xx

7worlds

Thanks DD and LV. DD, you have been more helpful than you know. You do, like all of the gang on here, totally get it. My line manager is aware of the situation and to be fair, he tries to be as supportive as he can especially with things like appointments, i work for a big company and there are always more pressing matters that need dealt with other than me and my ills.LV,you are right of course. I am a very small cog in a very big wheel and if i went in tomorrow and said i was leaving, id soon be replaced.It can be hard to find the right balance sometimes. :roll:

7Worlds

hileena111

Hey...you cant leave there!!!!! Where am I going to get my coffee when I come over

Love
Hileena

LignumVitae

I once read an arthritis blog where the lady said that she always has a to do list but when things go down hill and she became less capable she made the list longer, she added more and more pressure on herself. It made me really think and I recognised that behaviour in myself. The more I struggled for normal, the more I tried to attain super...the result is an inevitable burn out. Once I looked at myself doing that I realised that those around me didn't expect me to hit super, they'd be quite happy for me to hit normal and when times are rough, they just want me to be ok, achieving nothing if that is the trade off with me being ok. If your boss is supportive, I wonder if he'd be happy with just you being ok? That's what I mean by giving yourself a break, as that old line goes, put your own oxygen mask on first before you attempt to do anything for anyone else. Times sound really tough for you and you are important at work but only if you are well. You aren't well at the mo, repair yourself. I wish I could give you a huge hug, take you for hot chocolate and make you giggle right now! LV xx

7worlds

Ah thanks, LV. What a lovely post.You made me smile. The funny thing is, i line manage 40 people myself and i deal with their personal issues, whether it be family related, work related, and when they are sick themselves. I sit them down and dispense help and advice cos thats what im paid to do, im just not very good at practising what i preach, but sure thats human nature, eh? You have given me food for thought, though :?

Hileena, dont worry, im going nowhere. Could,nt afford it for a start!!

7Worlds

dreamdaisy

Hello 7worlds, how are things now? I hope you are feeling a little better in yourself. I know exactly what you mean about being sensible when it comes to other people's problems, you're not involved as such so can take a clearer view. When it's yourself however, well, wood, trees etc. It's harder. DD

7worlds

Hey All. And DD. Well, had my emergency rhummy appointment today. The first thing he said was " Oh dear, youre not having much luck, are you?" I said i was hoping my luck was about to change. I gave him my tales of woe with the sulpha and had a really good chat with him about pretty much everything. We had a chat about tnf treatments. I have a DAS score of 4.9 and it needs to be 5.1.It seems my RA is active but not active enough for the biologics. Although, i dont think the pain feels like its 0.2 less :roll: So the long and the short of it is i left with a script for Hydroxy and another appointment in 8 weeks time. Heres hoping that Dmard no 4. turns out to be the fellow for me. Any info on Hydroxy would be greatfully recieved.
Ta

7Worlds

stickywicket

I'm sorry about the anti-tnfs, if that's what you were hoping for.

I've been on hydroxy for over 10 years but I take meth too. I was also on it previously but I can't remember when or if I was also taking something else at the time. I don't think I was then. I've never had any side-effects so I hope you get as good a result. Unfortunately, it can take a while to kick in.

7worlds

Hey Sticky. Thanks for the info. I hope this is the one for me.

7Worlds

stickywicket

I do too

7worlds

Thanks Sticky. Just hope this one works. Want to get off the merry-go-round for a bit :!:

7Worlds

RitaW

Hi,I am new here and also have R.A (amongst other things) :shock:
I was on Sulpha and Hydroxy in the past,both for a few years.I was lucky in that I had no side effects at all,but they just didn't do anything for the R.A.I hope you find something that works for you.x

7worlds

Hey Ritaw. First of all welcome to the forum. Thanks for your reply. going to start it on Monday. Crossing my fingers :?

7Worlds

dreamdaisy

Hello 7worlds, I apologise for my late reply to your post - no excuses, I just somehow missed it. :oops: I have never taken hydroxy so I can't help on that front but I really hope it's the one that makes a difference for you. Let us know how you get on with it, yes? Good luck! DD

7worlds

Thanks DD. Going to start it on Monday. Am off to the proms tonight and didnt want to risk my evening of culture. Arthur,s not invited either.


7Worlds

stickywicket

Ooooh, have a lovely time. I hope you'll be sitting in luxury not standing all evening. Wave your AC membership card. I'll look out for you

7worlds

Will do Sticky Its proms in the park, and this year its being held on the place where the Titanic was launched. I have some rather fetching zebra print camping chairs. Very chic 8)


7Worlds

dreamdaisy

I hope you have a great time - and that it doesn't rain. DD