need some real quick answers - Hughes Syndrome A...

Hughes Syndrome APS Forum

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need some real quick answers

jetjetjet profile image
29 Replies

last 4 days been having some rash like problems , like bee stings all over chest - now all over entire upper body -eyes swollen bad , short ness of breath - thought it was going to pass ??????? just calld doc on call in er anybody got any ideas jet maybe a reaction to plaquenil up to 400 mls a day now ?????

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jetjetjet
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29 Replies
Suzypawz profile image
Suzypawz

Yes it sounds like an allergy to something?

Im on 200 mg a day....I know it can afect your eyes if given too much? you are suppose to have the ammount that ok for your wieght? I dont know if its a reaction to that? but you do need to phone really matey, ok? hope you'll be ok x

jessielou profile image
jessielou

Hi jet

is allergy to something. Er on call quick sharp. Let us know hon!!

Take care gentle hugs love sheena xxxxxxxx :-) :-) :-)

Jet- Dont screw around!! Stop the new meds you have started for a second and call the doc before taking any more!! If you are having trouble breathing go to the ER!! If its a true allergic reaction let them sort it out before you lose your airway due to swelling. Can you take Benadryl and Pepcid? If so, do it!! And call me later to tell me you are okay!

Just tried to call him and he is in the ER now getting assessed.

Suzypawz profile image
Suzypawz in reply to

Thanks hun for trying to ring him....hope e's ok :(

it definetly sounds like an allergic reaction to something.

I've had quite a few, some ended up with me almost passing out as couldn't breath properly as my air ways were swollen & eyes & nose streaming :(

Let us know how he is please when you know xx

jessielou profile image
jessielou

Hi glad to know he gettin checked out. Allergies scary. I carry epinephrin. Let us know hon.

Take care gentle hugs love sheena xxxxxxxx :-) :-) :-)

jetjetjet profile image
jetjetjet

hi thanks all, 10:30 to e.r. wasnt seen till 4:00 , went over all meds , swelling in face went down, now rash and bumps all the way to feet, they dont believe its the new meds- benadryl, prednisone 10 s decreasing over next 5 days [ pren not good for avn] but what can i do. see gp 3:00 tues afternoon.breathing shallow but not resticted . nurse practioner thinks hives ? gotta eat some supper and start pills, be back in a bit , hope it doesnt effect my salt water swimming ability, thanks again my buddies - hungry jet

MaryF profile image
MaryFAdministrator in reply to jetjetjet

Phew... sorry you had a tough one, Mary X

jessielou profile image
jessielou

Hi jet

glad you ok ish.

Hope nasty hives settle n you feel better soon.

Take care gentle hugs love sheena xxxxxxxx :-) :-) :-)

jetjetjet profile image
jetjetjet

hi slept late this morning, no appetite, rash not so severe , face swelling gone down quite a bit, back an lower body not so good as face and chest . got to get ready to go to dads therapy, will come home check comp , then of to doc s app at 3:00- not quite so itchey, lets see what happens when i take my shower cause i really get red then or was------- bumpy -red -sratchy- puffy- me

Suzypawz profile image
Suzypawz in reply to jetjetjet

Glad to hear you're getting better, very worrying for you, keep well matey :)

jetjetjet profile image
jetjetjet

o well back , back from doc , wanted to know of last problem, sorry that was 2 weeks ago, most recent [ i dont know about that] par for course, what do you want to talk about - now lets see- you have no info on dec 26 visit?- no, i think you are strested, bp 156, way to high for me, well doc do you think its the medsyou didnt even know about?!?!----- answer i dont know- much more b---- about it - he has no clue, an other dad is back in hospital , just 2 hours ago not good he is losing his fight, as much as i visiy him everday day its a lossing baddle, i think this time it may be the last stand, at a lost of whats is next i can go on about me and doc, but thats not a real concern rite now, i guess i have to stop ---- think -- and observe,--- hope it will work - but i have to think of dads wishes - and respects if he just gives up than i guess thats his decision, its just a hard one for me. its hard to swallow-------- thanks jet

jetjetjet profile image
jetjetjet

please write a few more words? whats is this all about, coming up on my screen ?????

jetjetjet profile image
jetjetjet in reply to jetjetjet

paddy - WHAT IS THIS ALL ABOUT ???? maybe you can help me understand, just why this showed up on me screen ???? - so quickly , i really want to know-- jet

jetjetjet profile image
jetjetjet in reply to jetjetjet

this came up on my screen in a pink back ground--- just what is it- before i get real upset about this even more. please tell me or any other one who can explain this --- me

jetjetjet profile image
jetjetjet in reply to jetjetjet

sheena - can you help me with this - it may be something that i am miss reading ???? jet

jessielou profile image
jessielou

Hi jet

you ok hon? Worried now, sorry your dad giving up it just so hard and unfair.

Not know bout thung on screen hon. Virus maybe??

Here for you.

Take care big hugs love sheena xxxxxxx :-) :-) :-)

jetjetjet profile image
jetjetjet in reply to jessielou

have you ever heard of this , i would have to think it has to have come from our site, innocent or maybe just inquisitive, but this is a secured site , it would have to come from with in ????? me

jessielou profile image
jessielou

Hi jet

can't see what you can hon. If it problem with site will get checked out. I doubt it you, you only a little crazy after all.

Big hugs love sheena xxxxxxx :-) :-) :-)

jetjetjet profile image
jetjetjet in reply to jessielou

jess i saw it not a crazy , wish i could show you , wont come back up --- it was there, i will call my --- o never mind . but is in my comp , i have just the person to find it. im just have to calm down and you are the one i think that can help. still have scuba suite maybe time for a long swim. need pics of pub , sorry i flew of handle i guess crazy me---- glad it was you who responded------- jet

Suzypawz profile image
Suzypawz in reply to jetjetjet

I hope your ok jet?.....I dont think anyone else saw whatever it was you did :(

I hope you find out what/where it has come from?!

Yeah...come & swim to us over here & we'll take the photo together!!!

jessielou profile image
jessielou

Hi jet

have messaged you. I do hope can get to bottom of this, it's wrong and obviously really hurt you!!

Hang in their hon, thinking of you!!

Take care hugs love sheena xxxxxxx :-) :-) :-)

SharontheSheep profile image
SharontheSheep

Hi Jet

Have you stopped the Plaquenil? Such a shame if that is the culprit. Sending you positive thoughts of support with all you're going thru at the moment

Sharon x

jetjetjet profile image
jetjetjet

hi sharon - as of rite now still on 400 mls per day, that would have to be changed by rueumy , still on warfarin, schedule changes every 3 days; todays 3.3 thats good my range is 2.5 - 3.5. still itchy, bumpy ,red, and swollen, trying to get records straighten out before duke unn. comes for my blood and all existing records. that should be in mid -to late jan. a real lack of communication between concord hosp. and dartmouth- hitchcock medical, these places are 80 miles apart, [ and so is the comunication] ha!! e- mailed dartmouth this morning hope to have a reply in about 72 hours.just starting to establish a good relationship with 2 of his nurses, a work in progress. i can get them laughing thats always a good start ,thanks for your concern, will see how things play out. - its like hurry up and wait.----- jet

jetjetjet profile image
jetjetjet

guess whats up on my screen again [ please write a few words ] just under leave a comment on a pink back ground , can anyone else see this, as it is still staying up this time , a may lose it when i try to send this here we go

jetjetjet profile image
jetjetjet

this time i got a copy of it. i will try to get some help on my end ,maybe i can send it over the comp.to see just where this is coming from ?? -jet

jessielou profile image
jessielou

Hey jet

not seeing it hon. Glad to hear from you. Hope all is ok with you n yours.

Do hope you find out what it is and where from.

Take care gentle hugs love sheena xxxxxxxx :-) :-) :-)

paddyandlin profile image
paddyandlin

Hi Jet,

I am really sorry to hear you having issues I have no idea what you can see or how it is effecting you but will speak to the Health Unlocked People, has it happened anymore, no body else have complain or mentioned this could it be a virus did your people see it?

I will see what i can find out i am sorry not to respond sooner could onlyaccess emails by phone and the site does not show up very well on mobile.

I hope you ok

Paddy

jetjetjet profile image
jetjetjet

thanks paddy its only happened twice, last time i was able to copy it on my copyer- it shows in pink bourder- i can tell you ,it appears ,in the box for [ leave a comment] just above where you would type comment, i am still working with a company on this, im in hopes its the end of it, as it seems to only appear on my screen . the actual message is solid pink as it comes up on screen. i would think it has to be some one thats in locked site??? does that make sence to you? ---------- thanks buddy --------jet

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