I'VE BEEN TANGOED

chris7

Ooer Lynn :shock:

So sorry. Was just wondering how you got on at the appointment and there you are with an update. You know most of this is beyond my ken, but I do understand the bolting for the door bit and am sure it was a scary appointment to have it spelt out.
Really hope the new meds work for you, and that the balancing act of meds is soon in your favour and helping.
Just leaving some hugs ((((( ))))) and oodles of love
Chris xxx

skezier

Hi Lynn,

First ((((((((((((( ))))))))))))) and a bucket of hugs to go with you.

I have been increasing the mtx all the time and its not always the answer so the add in might help? have you the round ones or the ones like torpedoes?

hey look the sulfa was able to help my bones for 3 weeks and as yet its still the winner Maybe it will help and work?

You and me both about crying in public..... I am just at my wits end just now and burst into tears at the docs, the hospital and even when refusing to be weighed..... I do that near the drip cus they don't need to!

You will get there flower so just hang in there. Love and another (((((( ))))) Cris xxx

minky67

Hi lynn, sending you a bucket load of (((((hugs))))) & a hope that the new meds work.

I had another visit from Toni (frogmorton) & I met Roses1 for the 1st time this week & it was laugh one minute & crying the next. What we like eh!!!!!
i try not to do it in public but cant see me holding back the tears on weds at pain clinic, waited to long & certain problems are getting worse,cue swollen ankles & feet :roll:
luv debs

skezier

Hi Lynn,

N.I.C.E are not human friendly so that's a good move Who does it no though?

He told me I wouldn't get funding... Lynn this shower of a trust won't even give me funding for a midline! They are bankrupt again and no-one is getting funding... plus there are very few places to have it done cus again of funding! Tis no wonder they have such a bad performance record eh?! :roll:

I had very high hopes but the doc recons it might also be behind the ulcer.....

Anyway the sulfa actually did show willing to me for a bit... then I reacted to it

You let us know how it goes and sending you a ((((( ))))) and a good luck draft. Love Cris xx

angel1

Only just found my way here LL, and want to send you all the love in the world, as ever.

I know how utterly resistant you are to taking more drugs, but I applaud your acceptance of them, despite that.

You know, I have always thought that it is a GOOD thing to show emotion to the medics. No matter how knowledgeable they are about the physical aspect of Arthur, they know very little of the emotional side of things, unless they have it themselves.

Keep smiling my Lovely Lynn, and I`ve just noticed your message, which I will reply to very soon.........Much love......Ange.x.

dreamdaisy

Good luck with the sulpha, collywobble. I have been on it for years without any side effects - I think what it does for me is keep the P at bay of my PA so I guess that is a result of sorts. I like the idea of MOWS - clever girl! We should have badges made - now what would we put on them?! DD

salamander

Hi Lynn, you are not the only one crying in public! Feel like I'm 3 years old again.

I'm in the same position as you, trying Hydroxycholoquine as my second Dmard with a view to going on biologics sometime in the new year (well, my appointment's in the new year but whether I'll start drugs then is anyone's guess.) I'm hoping hydroxy works for me but my rheumy didn't seem to have high hopes. Put me on them because supposed to have few side effects. Except I seem to be getting most of them, typically. On so many drugs now I've lost track.

As to NICE, although they blocked people for getting drugs sometimes, I think there might be more of a postcode lottery if left up to health authorities (PCTs going too!) Cris, I'm shocked to hear you can't get funding with all your difficulties. On what basis are they saying no?

tkachev

Lynn welcome to the Tango world lol.

I must say sulfa only worked for 3 months for me. It was early days in my R.A diagnosis but I am still on them years later.

Try not to feel frightened by the possibility of stronger meds Lynn. I know it can feel we are being taken over by unatural ingrediants but if your pain is relieved it will be worth it.

Elizabeth

psyart

Hi Lynn

I have just been put on sulfa - am now on 2nd week so am on 2 a day - wee still looks ok though

i was on methx - but couldnt tolorate it after 16months - the nausa got to me :!:

maybe we should start a 'change in colour in your wee' forum :!: :!:

i understand your worries - i was apprehensive about going on the sulfa - but words of wisdom from people on here helped me :!: :!:

i havnt really noticed anything yet - in fact the past week has been the worst i have had for a while but we will see :!:

good luck - hugs and support - louise xxx

dreamdaisy

Hi collywobble, I have just remembered some thing: I don;t know if this will apply to you but if you wear soft contact lenses they could be stained by the sulpha, probably not until you are on a top whack dose but I have read that it can happen. DD

lindalegs

Hi Lynn,

What you doing looking in the loo when you've had a wee - what were you hoping to find? :? :shock:

We've all shed tears in public Lynn, arthur does that to us :roll: - pinkies crossed that the sulpha works for you.

Luv Legs

annie_mial

Ha ha

Um.........I'm green atm anyway due to meds, can't bear to think what would happen if they put me on sulpha!

Annie

chris7

Hi Lynnie

Just calling in to check on you. Hope you haven't turned orange yet!! Glad to see you hanging onto that sense of humour inspite of it all lovey. Ken indeed, Sorry 20 years in libraries is to blame for me fancy talk sometimes.

Sorry the dawgies suffered, hope the fireworks are over for now though somehow it goes on forever here and I am worried about my next door neighbours ducks. Fancy keeping ducks in a small town garden. I am just a pasty white at the moment, the shop was busting at the seams today, anyone would think Christmas is coming!!! Poor Annie, I don't fancy being green. Good to see Ange found her way back to the forum. I have no idea why this looks purple but prints in black.
Hang in there lovey, must go and soak me aching knees.
love and hugs (((( )))))
Chris

Wonkylegs

OH I so remember the days of the orange torpedoes :roll: :roll: :roll: :roll: used to hate the things .... and I drank like a fish when on them as I was always so thirsty.

I do hope they work for you .... and the orange wee isn't a great problem ! (that is unless you have to provide a sample to a nurse who isn't familiar with the meds, and who gives you a lecture in public about not drinking enough :roll: believe me it happened )

best of luck

WOnky

julie47

Hi lynn

Sorry I am late popping inti your thread, I have been galavanting :oops:

I think i read that the new addition to your meds has almost started to give you some relief. Thats great.

I hope you feel well today and not too tired after cleaning te carpet. You did make me smile when you said you were going to bolt out of rhumys door and he was sprawled across it, i too would have felt like that. I have also cried at docs and hospitals but it can't be helped as you just wonder whats next?

Anyway have a good day
Take care
JuliePF x

dreamdaisy

It is such a gradual build-up collywobble, that I think it can take some time before any difference is spotted. I did bruise heavily in the early days, but that ended after about eight weeks, I think (it was a long time ago!) When do you have your first blood test - in a month or so? DD

tkachev

Hi Lynn,

I am pretty sure mine kicked in quick but they were my first meds (apart from over the counter paracetemol and Ibuprofen).
However the effects wore off at 3 months- during which time I had a DLA medical and managed to move quite well during the docs visit. Typical. If only I had known the pain would return soon after.

It is different for everybody though. I am pleased to read that you are feeling better,

Elizabeth

ironic

Hi Lynn,
Sorry that I am so late. I have only just got myself back onto the forum. :roll:
I do hope the sulfa helps to keep Arthur in his box for you. I know you have been having a bit of a rollercoaster ride with him for a while.
It is good that the preds are working so quickly for you. Although it is not what you wanted to have to take again.

Have done the ironing yet?

Lv, Ix

wibberley

Hurrah, I'm finally back in!

Hiya Lynn, hope you're doing okay? Glad to hear the preds have kicked in - but fingers crossed you won't need them for long!

Lois x