It's official .... I'm a mystery !!

Wonkylegs

Well ..... what a day ...... but I've survived and I think all the pocket-dwellers survived too!

Saw my new consultant and first impressions are we'll get on much better than the previous incumbant

He is at a loss to know what the rash is ...... but doesn't think it is vasculitis (phew!) or likely to be the MTX (phew again) or Lupus (phew!!) .......

so I have to wait until the dermatologist has taken a look at me on Monday .... and possibly taken a biopsy :shock: :shock: :shock: :shock: :shock: (I'll be a quivering wreck if they want that so please come with me on Monday!!!)

So .... the bad news is that I've not to have any MTX until I see the consultant on October 20th :shock:

The good :? :? news is that I have been given steroid tablets to take to lessen the itching and also to help my poor joints. 10mg Prednisolone is a lot less than I took last time so I am hoping I don't get the horrid side effects I got last time ..... I want to be able to enjoy my holiday :roll: and actually do stuff!

The consultant didn't know about Monday's appointment :shock: but does now and it is going to be at yet another hospital, so that will be 4 in two weeks - going for the full house

He promises that when I next see him he will have the x-ray results from May, because I'd like to know what visible damage arthur has done to my feet and hands to go with the pain!

Right ........ off for a cuppa now .... and to empty my pockets ...... you lot do leave a lot of crumbs you know

hugs
Wonky

frogmorton

Hi Wonky

Sorry about the crumbs - the sticky bits might be brie - soory :oops: and watch out I brought drawing pins for Jan as she is off sick too.

I always thought you were rather special Wonky - now you are a mystery too - sounds like a song....Toya Wilcox...".itths a mysthtery iths a misthtery"

I reckon the dermatologist is the woman (or man) to help with the rash and you should know prob monday - if she/he takes a bit we will be there no probs

More pred tabs then? Hope you are ok on them - did you say holiday?? Holiday?? When where??

You take care

LOve

Toni xx

speedalong

Hi Wonky,

attending all these appointments is a full time job isn't it. Glad you like he new medic better, Shame about no mtx until end of Oct especially since they don't think the rash is caused by it?! Hope the steriods tide you over and like you say don't give you side effects.

When are you off on holiday?

SPeedy

annie_mial

Wonky, so glad you got some help in time for your holiday, shame about the MTX.

Hope the dermy can help on Monday with the rash but if they say they don't know either at least you will go down in the history books!

Hope the Pred helps over the weekend.

Annie

dorcas

Hi wonky

glad you hit it off with your new consultant..... he sounds nice!

good that the rash isn't something awful .... but no Mtx until October is cruel :shock: I'm glad he gave you steroid tabs.. but hope they don't cause you more upset. :roll:

we will be with you on Monday... of course we will... and if the derma...whatsit does anything nasty we'll jump out of your pockets and rugby tackle him to the floor.

Toni's a messy eater so she is so you maybe need to BAN the BRIE

put your feet up now Wonky and have a nice cuppa.... sending you some of 'my' finest white chocolate cake too.

lotsa love n crumb free (((hugs)))
Iris xxx

elnafinn

Aw, Wonky I am so sorry that things still are not sorted for you - lets hope the steroids work ok in the meantime. Is this rash all over, but not on your face and hands? Apologies, I cannot keep up with you and all the others on the forum not being well at the moment. This waiting game, certainly is not much fun is it? I am in a waiting game situation too after being diagnosed with IBS.One month later and no improvement, worse in fact, Doc is now adding Antitripylene, small dose daily for one month, to try to calm things down along with Imodium. :oops:

What's this about a holiday, do tell us more?

Love and hugs to you

Elna x

Wonkylegs

frogmorton wrote:

More pred tabs then? Hope you are ok on them - did you say holiday?? Holiday?? When where??

Thanks TOni & Speedy

holiday is 9th - 16th October ..... was hoping it would all be sorted by then :roll: going to north norfolk - hired a cottage in Old Hunstanton.

intending to go birdwatching & on the steam railway ...... not sure if I'll be up to walking a lot though, so might have to hire/borrow a wheelchair either before we go or at the places we go to. :? :? :? not got room in the car really, but hey, who needs clothes when you can have a telescope, tripod, binoculars, wheelchair, a bed-lever, a million pillows and multiple boxes of pills

steroids - the last time I had pred was 5 days at 60mg per day :shock: and I thought I was losing my mind :shock: :shock: :shock: hot and desperately manic all the time & didn't sleep at all :shock: :shock: :shock: so hoping that 10mg will be less of a problem

As for Monday - I'll let you know what happens

hugs
Wonky

Wonkylegs

sorry Elna, Iris & Annie - missed you at first :oops: :oops: :oops: :oops:


Elna - rash is mostly on arms and legs, but some on chest and a bit on my back (so hubby says - can't tell myself ) but everywhere itches at the moment :shock: :oops: Sorry to read about your IBS diagnosis - not much fun for you. Hope it improves soon.

Iris - thanks for the choccy cake yum!!! I am indeed going to get a cuppa and have a lie down - have sent hubby to the doctors to pick up my other meds

Annie - fingers crossed the steroids don't affect me like last time ... .much lower dose though, so hopefully they will be ok.

right. .... kettle is boiling!

hugs
WOnky xxxx

cebeem

Hi Wonky good to hear all the bad ones are ruled out!
Hope the pred looks after you this time....the insomnia I find was the worst.

How complicated can our care get? different people different places...makes you wonder how some people manage to keep up with it all.

Good luck with it all enjoy your holiday.....can I come?

I was recently diagnosed with PA but my husband has psoriasis and mine isnt the same.....little dots in places that if I leave completely alone (even though they itch) reduce and fade over a period of 6 - 8 months.

lots of smiles *CB*

minky67

Oh Wonky you are indeed a mystery.
Im sure when you see the dermy you will get some answers,fingers crossed for you.
I was asleep in your pocket & have only just made my way home. :shock: Had to have a bath as someone thought it funny to cover me in crumbs & not wake me up before they all hopped outta your pocket. :roll: :roll: Very tired just lately.

Hope your pred helps until you get to see your consultant again.
Happy hols too.
luv debs (who's just found some more crumbs, who put them there :shock: :roll: )

barbara12

Hi Wonky
I am so sorry you have not got all the answers, but thank goodness they dont think it serious, well not to them :roll: I hope the steroids work for you, till they give you back the mtx.
You get some rest before you holiday, that is something to look forward to.
Sending you lots of hugs ((((((()))))
Love
Barbara xxx

ironic

Hi Wonky,

Well it is good news that the new consultant is more understanding.
At least he's on the case of the wandering X-rays

Monday may well give you some answers at last.

Have a restful weekend.


Lv, Ix

julie47

Hi wonky

Sorry that you are still unable to take mtx especially as that isn't causing your rash. Hope the steroids help you and you don't feel poorly taking them.

Was thre in your pocket with smarties and wine gums , hope the smarties didn't make too much mess.

Will be there on monday too

Hope you get some answers about the rash, if they don't know who does?

That white choc cake sounded deeeelliciooouusss.

love juliepf x

fayrose

Crumps Wonky, what a lot of s***t you are having to deal with. Mark me down for company Monday - albeit cyber.

Let us know what happens please and big hugs from me and the stinky boys (dogs) .... mind you the OH really belongs in that category.

Fay xx

tillytop

Hi Wonky – so glad you survived your appointment today! Sorry you are still a mystery, but really hope the steroids give you some relief whilst they are trying to sort out what’s really going on. And that they mean you can enjoy your hols.

Really good luck on Monday too – will be thinking of you!

Love Tilly xx

Rainbow77

Hi Wonky

I am glad that you got on well with your new consultant - that is always a positive. Sorry they don't know what is causing the rash. It is nice being special - but not that special!!!!!!!!!

But I am sure the dermy will have an idea. You may have an intolerance to something or something related to over active immune system. Glad they are starting to rule out some things.

Hope your appt goes well on Monday.

Take care

Fayann xxx

skezier

Hi Wonky,

So glad it went ok and you got on with the consultant. Doesn't it make a different?!

Shall be there Monday and both myself, the Employers and the Lodgers will be in the pocket on stand-by should cyber bites and kicks be needed if he doesn't help you Slurps ((( ))) and another special bucket of make wonky better draft. Cris xx

Wonkylegs

thanks everyone

I'll need big pockets on Monday

strange how it helps to have cyber friends with us for consultations but so good that it does.

hope you all ahve a lovely weekend

hugs
WOnky xxx

Wonkylegs

HI all & thanks for coming with me today

just to let you know that you can all climb out of my pockets now thank you very much, and I'm available for any of you who need pocket-dwellers any time

I'm back without having had to have a biopsy (phew!) and they think the rash is a 'mild drug reaction' :shock: and the consultant believes that the most likely culprit is the Leflunomide (which I'm still taking :shock: ) rather than the MTX which has been stopped :? :roll:

reams of new skin stuff to get from my GP tomorrow, hopefully will stop the itching, and I have to wait for the letter to be sent to rheumatology and see what they decide to do.

Maybe this will hasten the infusion if they have to stop the Leflunomide :? but there again, they will want it all sorted before they start with that one :roll:

anyway, nothing 'serious' (their words) like vasculitis, so that is a big big relief

thanks again for all your good wishes

WOnky

Rainbow77

Hi Wonky

I am glad that you finally have some answers and that it is not too serious. What a pain, though stopped the meth and it was not that!! But at least they definitely know that it is the other one.

Well I hope you get a quick response from your rheumy and this sorry episode will be over soon. Can you go straight back on to meth? Will you have to take a lower dose now that you have been off it for nearly 6 weeks?

Hope you are all better for you holidays ...

Take care

Fayann xxx

Wonkylegs

Thanks fayann,

I'm honestly not sure what they will do with the meds, as the consultant said it was 'probably' and 'most likely' the Leflunomide. Having read all the leaflets for all my meds last night, three quarters of them list 'skin rash' as a potential side effect :roll:

I'll wait and see what they decide ... last time I just restarted at the same dose but with more frequent blood tests, but it will depend on a lot of factors.

Rheumy appointment is October 20th so I'm not expecting anything to happen quickly :roll:

thanks & hugs to you

WOnky

julie47

Hi wonky

glad you are back and that no biopsy was needed.

Hope the tones of cream you are going to collect will cure your skin irritation. (need a hand carrying it)

Here a cup of yorkshire tea to revive you.

(tea cures everything on coronation street)

juliepf x

Wonkylegs

HI JUlie

thanks for the Yorkshire tea ..... I can only manage cyber tea right now so it's more than welcome. maybe my stomach will let me drink it again soon

I think I'll take a barrow with me when I go to see the doc ..... I've got 2x500g drums of ointment and cream, and other stuff as well, so you're welcome to tag along

hope you are keeping ok and not suffering too mjch?

hugs
WOnky

dreamdaisy

Good luck with the new skin stuff - I hope it does the trick. DD

salamander

hi Wonky,
Glad you are making headway though it seems very slow. I might have missed this posted somewhere but are you starting back on the Mtx then?

Wonkylegs

salamander wrote:

hi Wonky,
Glad you are making headway though it seems very slow. I might have missed this posted somewhere but are you starting back on the Mtx then?

I don't know is the honest answer!

the consultant on friday (rheumy) said no MTX until he saw me again (20th October :shock: ) but he did add in the steroids.

whether that will change sooner because of the Leflunomide being the presumed cause I don't know.

My bet is that they will stop the Lefllunomide and add in the MTX, but I'm only the patient

thanks for your post. How are you managing?

hugs
Wonky