View Full Version : Update of iseedeadmonkeys life

03-01-2011, 01:00 PM
Well hello there everyone,

I really hope everyone is feeling ok-ish, thought i would update peeps on whats been happening in the world of Jane, nothing major exciting to write home about but has been requested by some friends.

I really do appoligise to everyone who i may of been short with or not been as chatty as i usually once was, it has been a very busy year.

So Me and Norma are still happy and together we saw our 2 year anni yesterday and for a suprise she took me away to Butlins in Minehead, Somerset, was great to get away but had no spoons all w/e so was on a goo slowww for the whole w/e and slept the majority of it too, only to get woken up by seagulls every morning at 6am! lovely, we got to spend time together tho and that was the main thing and had lots of laughs.

Well i finally came off the methotrexate and got put straight onto azathioprine (imuran) and all was going good for the first 3/4 months until i developed a rash (and not my famous malar either) on my neck, arms chest and top of back (il update my photo album later to show u what i mean) so the gp orriginally thought this maybe a side affect and was sent off for emergency treatment and testing, my hospital appointment with the lupe dr was brought forward as no one knew where this rash was coming from had gone to 2 diff A & E's as it was pretty much over night as well, So the consultant sent off for testing and sent me to get pics done for their medical journal as no one up the hospital had ever seen it before, turns out its SCLE Subaccute Cutanious Lupus Erythematosus, So lupe fella put me on 40mg of pred then taper me down over the next 3 months...happy days for me! after 1 week i was jumpin on a trampoline with Shaneo for an hour without getting tired, loved it, had my life back for 2 weeks, haha and rash had completely disapeared, asa i went down to 20mg it came back....soooo

I went back to see fella up at the hospital and he said well u cant stay on 40mg of pred for life (nah?) ok bummer so he put me on 10 mg and a Mepacrine 100mg (thats part of the anti malarial family) also put me from 125mg of azathioprine to a slow increase to 200mg so am to stay on those for 3 months and hopefully fingers crossed it will go away.

Also i had to have a blood test for a pos APS, havnt got the results back yet.

He wants me to get my blood sugar tested as thinks may have type 2 diabetes (oh that would explain the fatness lol, nuffin to do with the steroids)

Warfarin (blood thinners) has gone up to a whopping 9mg dailey thats the highest its been since i actually had the blood clot.

Right i will put new pics of rash onto my album now

Oh and btw if this new drug increase does not take away my rash then he WILL be putting me back onto methotrexate, but ive requested the injection form.

03-01-2011, 01:25 PM
Well i cant upload coz aint got a clue how too

tiggerlishus - Heidi
03-02-2011, 02:24 AM
got my fingers crossed that new concuction of drugs work babe xxxx

03-02-2011, 07:38 AM
*fingers crossed* I hope you are not a diabetic. It's such a pain in the rear being one. BUT if you are it is super important for you to know that pred is a big no-no for us diabetics. Most, if not all, oral steriods are because they raise that blood sugar up, up, up. Make sure that whoever runs the test on your knows beforehand that you are on steriods. They might say to wean off them for a day or two to get a better indicator of your current blood sugar levels.

03-02-2011, 08:13 AM
Poor Thing..I hope that the new regimen works for you. No worries about not being able to upload..I haven't figured out how to do that either LOL

Wishing you the very best :-)

Peace and Blessings

03-02-2011, 08:23 AM
Did you manage to put any pictures up of that rash of yours? Doesn't want to let me look at any of your pictures and am really nosey as that's the rash they think I have on my face so want to compare ~lol~

03-02-2011, 10:39 AM
Numpty are you on fb? i have them all there, but for some unknown reason cant transport them to here, whats up wiv that!! i used to be really good at stuff like this haha oh well i think i must be turning loopy...more so than norma, hang on il change my picture settings xx

03-02-2011, 10:46 AM
hi there jane.

wow, how happy i was to see your thread here....it has been a long time since i got the chuckle from reading "iseedeadmonkeys"...thanks again....hey, do you remember how you left the other site and came here because they took offense to your member name....so funny.

i also hope that the new regimen works for you...come around again really soon,, and we will chat.

tell norma hi for me.

03-02-2011, 09:58 PM
Hi Jane,
It was good to see your update. I hope that those meds work for you. Sort of dizzying to read them all.
I've found that the MTX injection isn't too bad, so you're smart to request the injections if you need MTX again.
Good luck, and congrats on your anniversary.

03-03-2011, 06:12 AM
Mount, yeah weird huh! was thinking about that the other day, was gonna annoy them and go back, but stupidly cant remember wot forum it was lol
Oh i kno its been way too long i am getting better tho, and climbing out of the hole i fell into...coz some bugger nicked my ladder,, well thats life init!
theres loads of newbies on here only reconise a few faces, but am so glad to see me ole chums too!

Marla, thanx chuck! i will let ya know either way, ive sent a lengthy email to an online nurse RE mtx and lupus, sure someone told me that when ya loop is dignosed it cant get any worse!!! ERM WRONG its worsened much much more since 2007, summer will be intresting for rashes etc!
anyway enuff of this moaning lol speak soonage bunnies xxxx