And the unicycle squeaks on . .

dreamdaisy

Well, that all went very well. My weight hasn't increased since the summer and my BP was astronomically high today but we thought it best to ignore that: it was fine last week. We both agreed that the humira is doing an excellent job of controlling the inflammation levels so therefore I can continue. I am to increase the prednisalone to reasonable levels to get me thro Christmas (why do I bother even trying to reduce it?) then start that merry performance all over again in January, but to this time take a great deal longer in the reduction. I can stop taking the naproxen as it is not making any noticeable difference - hurrah! I'll have a pink tongue again soon! Yippee, I can start laughing with my mouth open instead of it being hidden behind a hand, like some bizarre David Walliams creature. We both agreed that the long-life trammies are probably also a good thing as they get me thro the day - we are both disappointed that I need them but hell, if they help . . . She started to do the DAS, but gave up as the figure she would have to record would indicate that the humira wasn't working, so we have put that off until a day when I have had a whack of it and things should be better: I am at the thinnest end of the wedge today, scored 16 painful joints in my hands and wrists so we gave that idea up. She expressed surprise that I have a thick and thin end of the humira - god knows why, it's a fortnightly slug of gunk, no wonder it wears off. There is a light tho, at the end of this long, dark and very gloomy tunnel: she thinks I am responsible enough to do my own meth stabbings, so hopefully come the end of January I can forgo the weekly slog to the clinic and just go monthly to collect my supplies.

Thank you all for being 'there' today. I will keep calm and carry on balancing, pedalling and juggling. DD

skezier

Hi DD,

It's Got Light in that tunnel just round the next corner flower.

Glad you can drop some drugs and are allowed to inject your self as well, that should be easier and if your stuck I am ok with jabbing things......

I really hope the pred increase does bring you a bit of restbite from the pain and that and hopefully they will all balance on it one day.

I can't really say anything to help but leaving a ((( ))) cris xx

julie47

Hi DD glad you are back and that your appointment went well.
Great that you can now do your own meth stabbing, must have been a drag to have to go weekly to the hosp.
Hope you get through the xmas period with very little pain and that your increased pred starts kicking in quickly. I know it is a pain having to up it and then go through the procedure of decreasing again but if it helps you over christmas it is worth the hassle.(could do with a jab in my neck).
Right go have a well earned cuppa and put your feet up for 10 mins.
Take care
juliepf x

dreamdaisy

I am the size of a sheep, skezier, so there's plenty of target area! Thank you for the hugs, they are most welcome as I am a little dejected. God knows why. DD

tjt6768

Hi DD, glad you came back feeling 'positive'...
It's nice to hear of people having good appointments..


Tony )

barbara12

Hi DD
Talk about good news and bad news, I bet you could tell the rheumy what to do.
Thankfully you can inject yourself, and keeping the meds up will hopefully give you some relief,I really do hope so.
Sorry I feel so useless.
Love and lots of hugs ((((((()))))
Barbara xx

skezier

Hi DD,

Cause your dejected flower. More ((( ))) and I used to be the size of the poorly one but she has lost more weight than me

Will get you some sheep pain killer... better than preds and I hoe your ok with the fact its intermuscular not sub cut? I only know how t do the flank or shoulder muscles.... could learn though xx

dreamdaisy

julie, tjt and barbara, thank you so much. It was an OK appointment, I suppose, at least she is willing to bend the rules to keep me on the humira. It hasn't worked any where near as well as was hoped/promised/expected, but hell, one can't have everything, can one? C'est la vie. DD

oh skezier, you do make me grin! I wonder if sheepsie meds would be better?

tjt6768

oh skezier, you do make me grin! I wonder if sheepsie meds would be better?


Are you joking..???? Don't you think you're BAAAAAAAARRMY enough???

Tony )

dreamdaisy

Oh nice one tjt! Time to stop bleating I guess, at least the meds companies can carry on fleecing my PCT - I'll carry on ram-ming in the humira and I will let ewe know how it all pans out. ) DD

woodbon

Hi, Glad you seem to be getting on with the new drugs even it they are not perfect. I expect its still the trial and error stage, finding the right effective dose for you.

When you start doing your own injections, that will be something to make you feel independant, which is important to your self respect. x:D so I'm wishing you good luck and send loads of love, Sue xxxxx(((((()))xx Take care! x:D

tjt6768

dreamdaisy wrote:

Oh nice one tjt! Time to stop bleating I guess, at least the meds companies can carry on fleecing my PCT - I'll carry on ram-ming in the humira and I will let ewe know how it all pans out. ) DD

I think they were just trying to pull the wool over your eyes!!

Lol

Tony )

dreamdaisy

I knew I missed one! Grrrrrrrrrrr.

Hi woodbon, oh there's nothing new in the meds I'm on, and the dosage levels are all sorted - they just don't bloody work as I would like them to but I guess a fair few of us can say that. One plods on 'cos one has to. Simples. DD

tillytop

Hey DD et al

You should be feeling very "sheep-ish" after those terrible puns. Still, "mutton" complain, because at least you all still have a sense of humour!

So, a mixed appt DD, with some positives but I am sorry still no real answers as to why you are still in so much pain.

Still, I bet your Hula Hoops and cream cakes will taste much nicer with a nice pink tongue don't you think?

Love Tilly xxx

frogmorton

OH MY Goodness!!

you lot and your sheep puns!!!

made me laff a lot - well smile a fair bit anyway )

So a bit of a stalemate then really? At least reassurance that it is ok to take the pred as you need rather than the GP urging you to stop eh?

Other than that - 'keep taking the medicine' then. x:?

That's why you feel dejected - no miracle and of course you being you didnt expect one, but at least you are still taking the hunmira and your rheumay sounds human.

HUGS from me like it or not )

LOve

Toni xx

dreamdaisy

I like hugs from you. Thanks, frog, I'll cheer up soon no doubt. At least I will be hoicking myself back up to the thick end of the wedge later, that should help. I upped the pred at lunchtime, went up to 10 and I can feel the difference already - odious, insidious little beasts that they are. DD

frogmorton

GOOD!!!

Well done you )



that's for being good and taking your medicine x

Love

Toni xx

+ more hugs

bertyboy

Hi DD glad you know whats what i dont understand all the meds for this that and the other , but it sounds good to me if you can give your own jabs and its a journey less xxx

tillytop

Hey DD, glad the pred is already starting to work its magic.

Love Tilly xxx

annie_mial

Glad it's doing it's usual magic........have a happy Christmas!

Annie

chris7

Hi DD

Well as appointments go it sort of went :? so at least it is done for a while. You really are doing some juggling there and try as I might some of it is Greek to me, so sorry! I'm lovin the way you agree to gloss over the bits that don't make sense and ignore them, it could catch on; though it must be more than a tad frustrating to say the least. Despite your disappointment/frustration your sense of humour is hanging in there bless you. x:D Hope the increase in Pred is helping today and you can look forward to Christmas. Ta for all the sheep puns guys that did give me a laugh.
Hang in there DD I know the plodding on isn't so easy some days. Sending a few of these your way ((((( )))))
Chris

Poppyg1rl

Hi DD,
Glad your appointment was ok, you are inspiration to a lot of us on here with your determination and gutsy attitude to 'arfur'! Keep unicycling! Wish you well Poppy X

ironic

Hi DD,
Well not all bad for you. It is good that there will be fewer trips to the clinic for you. Plus when you stick your tongue out at life; it will at least be pink. )
Seriously I hope things improve for you soon and as bad as the Preds are for you they will give you some much needed relief.
Lv, Ix

dreamdaisy

Daisycar says beep-beep to Jessicar - I hope all is well with you, ironic, and I love the tongue comment! Thank you. DD

Wonkylegs

HI DD

not sure whether to be pleased with your appointment or not ..... I guess that is why you feel a bit down about it, as it was not all bad but not all good either eh?

sending you hugs ((((((()))))))) and so glad that you are now deemed 'responsible' enough to do your own meth stabbings ..... hope you get on with them better than I did, and that will at least be 3 visits less to hospital each month

WOnky xxx

mp1952

Hi DD - well, some 'ups' and 'downs' in that appointment then... but at least you haven't put any weight on since the summer ..

.. and the sheep-puns have made me laugh too..

Hope you are feeling a bit more 'chipper' tomorrow DD..

Marion x