Hi is there anyone from the Lanc's ar... - Hughes Syndrome A...
Hi is there anyone from the Lanc's area out there, would appreciate contact, suffering at mo!! Hughes, Lupus sle and sjogrens. Jan x
Hi Jan even if there is nobody in your area if you want help or support we on your online family happy to help in anyway.
Thanx Paddy, soz its took 3 days but i've not been very well,can't shake this flare up off, back 2 the doc's tomorrow! I'm in a catch 22 situation at the mo, had to come off the azathiaprin to try n fight the infection n now I don't know wether the lupus has taken over the lungs, find out tomoz, already had the lungs drained 5 times in the past! INR levels are all over the place, highest they'v ever been 7.6 my range is 2 - 3. I'm really suffering with mouth infections and ulcers at the mo and the roof of my mouth feels like its been burnt off is this one of the norm things or wot?? Heads fuzzy, ears congested, also Paddy because of the high dose of steriods I'm on, I'm struggling to walk, knotting across the back n pain down the legs, can't stand more than a couple o mins, legs gone like jelly n losing muscle tone, is this norm with this illness, appreciate feed back. I've got a g8 sence of humour and I'm not used to moaning but 8 weeks has took its toll but at last its nice to know this site, and that there is help and understanding out there! Oh n I look like the michellin man to cap it all off coz of the steriods. Not a happy blobby!!!
Hi Jan,
I am in Newcastle, I also have Hughes, Lupus sle and some of the sjogrens symptoms. Hope your suffering eases soon!
Hi Jan,
Do not worry we can all be a blobby together since i had my last stroke been gaining weight so we can all wobble together lol, and do not worry about taken so long we all have issues!!
I am really sorry to hear that you are having so many issues and i hope you get your answer on the Lupus issue , regarding the INR mine has never really settled family trait i suppose i go from 2.4 to 8.0 my range is 3.5- 4.0 but they never sure why it has not settled i think we may be one of those life mysteries lol. Yes having ulcers and mouth issues and your head being funny can be a side effcet of the APS and in some cases may mean your INR is not high enough When you speak to your doc/consultant or Heamo talk to him about this and regarding the Ulcers Bonjela was my best friend.
Since my stroke i was made a wheelchair user and had a lot of muscle wastage so can undersatnd your frustration on not being able to do things again i think you need to really speak to a Doc do you have a speacalist !
I am glad you have got a good sence of humour it is a fantatstic thing to have with this illness and regarding moaning do not worry and 8 weekswould take its toll on anybody!
Hope i have helpped a little bit we all here to help
paddy the other bloater lol
Hi Jan ,
I'm sorry to hear you not well hon, i too have aps, fibromyalgia, lupus overlap etc. Difficult to know which is flaring. Sore mouth ulcers horrid and get you down, also can be from aps or lupus. My dentist prescribed artificial saliva(well known chemist b***** brand) has helped the dry mouth ulcers and sores. Recommended to my mum who also has auto immune condition, she says its brilliant!
My inr anyhow too, docs tomorrow.
Not in your area hon, but here when you want to unload either good or bad!!
As paddy says your sense of humour is great, gotta laugh else we'd cry!!!
Hang in their, hope you feel better soon !
Take care gentle hugs love Jessielou x x x x x x
Hi Jan
I use a wheelchair, scooter, cos legs just not work, either pain or weakness, still walk when i can, but the wheels give my family and i freedom when i can't. My name sheena, so kids love singing sheena' wheels.(might paint scooter pink and paint Sheena's wheels on it!!!
Again not know which condition causes this but some say its the Hughes sludge blood.
Also have trouble with ears, feel like all clogged up.
Anyway take care again hon, more hugs love Jessielou (sheena) xxxxxx
Hi Jessielou
Well I ended up in hospital, just got out this avo n still not feeling very well. I can't believe that on my discharge papers, diagnosis asthma attack, not a happy bunny bout that report. I don't know, if they don't try n palm u off with appy pills then your diagnosed with wot ever label they choose to pin on u!! I've got a trachea infection which I have had many times b4, would they listen to me, NO, still feel like I've got a hat on and still rattling and on top of everything else they have forgotten to dose me for my warfarin for the last 3 days, how goods that!! Got to go to pathlab tomorrow because of the cock up!! We are in charge of our own destiny's! Steriods back up to 40mg again n getting bloatyer by the min.
Done me moaning now, steam and frustration released, lets see wot tomorrow brings eh? love Jan x
Hi Jan
sorry not reply before now been pretty out of it and felt lousy last week or so.
I hope you're feeling better . They do make you cross. Wish they do some research, not as if there isn' t loads if info on the net.
I have asthma and they love to blame that when i know its not. So i know how you feel.
Feel free to vent and let off steam here. You in the right place and we all understand.
Take care gentle hugs love Jessielou x sheena x x xx 
xxx
Hi Jessielou
Sorry to hear your feeling lousy but hope ur on the mend now!! Having a bad couple of days myself, got quite down and feeling very frustrated and alone n I'm sick of feeling ill but hey ho out the blue pops my X hubby, girlfriend n daughter in tow bunch flowers n card, bottle o wine n vodka so wot the heck I joined them in a drink (not had one in ages). Well my mood lifted of course after 2 large vodkas and a chinese (food that is), the girlfriend got wasted and had to be taken home n X woz not a happy bunny with her lol. Straaaaaaaaange sunday afternoon but hey it helped !!
luv Jan xx
Hi Jan,
Wow that does sound like a strange sunday afternoon. I`m glad you enjoyed it and that it helped.
I feeling better although very dizzy and spaced out, just feel weird, I guess my blood pressure very low and probably low INR too.
Hope the drink didn`t affect you badly, I can`t drink anymore just doesn`t mix well with all the meds. Great when thinking of moving back into pub trade.
Hope you well today, take care, gentle hugs Jessielou x x(sheena) xxx 
;-)xx
