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Went for routine bloods in Rheumatology but ...... Options
BarbieGirl
#1 Posted : Friday, July 02, 2010 3:37:21 PM Quote
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OK, normal routine, go for bloods, but showed Della the rash on my legs. "Oh, that needs looking at" she says. "Take a seat" Lorna arrives after about 10mins, "I think Toby (consultant) needs to see this" He then appears and decides he needs to see me in clinic, but it will be a long wait. Finally got to see him after a 2 hour wait. Asked me about the meds, and how long the rash had been there for. Did examination and decided that maybe RA not the primary diagnosis (!!!???) after a year!! and that probably its Sjogren's with overlap of RA. Had the eye paper test, and he said that although bloods dont show it as usual for Sjogren's he wants me to have the lip biopsy and will make an appt to go to the Sjogren's clinic. He asked about the pred, and I said I had been off it for about 4 weeks now, as he wanted to see me at next visit without the steroids to get a proper idea of joints. Then he said, he didn't mean for me to come off that quickly, but as the next appt was for 16 July, I had to get off them quickly. He asked why I hadnt called for an earlier appt and I said that I was due to come in around 5 weeks anyway. He said that he didnt want me to think that if there were problems that I couldnt ask for an earlier appt. I just said that I didnt think it was that important and could wait. He kept saying oh poor you, as he examined me, and that if I am in that much pain I need to call them. Anyway, he has put me on 15mg pred and I am to go back again next week, as he feels the pred was previously covering the symptoms before. Well, thats about it, so what does this mean, do I have RA or not now??? Replies please to : confused.com Confused Confused Confused
BARBARA
Lorna-A
#2 Posted : Friday, July 02, 2010 3:58:49 PM Quote
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Hi Barbara,

Poor you, It seems like a guessing game doesn't it. I feel for you being in so much pain and the rash too, I came out in a rash when I started the meds but once the tablets were stopped and started again they were fine. I do hope you get this sorted out soon, and get a proper diagnoses. In the mean time take care and rest all you can. Thinking about you Lorna xx Smile
dorat
#3 Posted : Friday, July 02, 2010 4:07:48 PM Quote
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Oh Barbara, it's very confusing for you.
At least you got to go back on the prednisone and you go back next week so it looks as if they are determined to sort you out.
Lets hope your pains improve with the pred and you can get a definite diagnosis soon.

Love and hugs, Doreen xx
MrsWoman
#4 Posted : Friday, July 02, 2010 4:15:08 PM Quote
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What a nightmare at least your consultant is concerned - pity about the wait. Where you on 15 mg of predislone before. How fast did you go down. Did you produce tears during the test?

I had the eye paper the test - it really hurt and my bottom lip quivered I was trying to stop myself crying but I couldnt with the shock of torture implements being stuck into my eyes. When I spoke to my consultant he asked me did I produce tears. I said i didnt produced tears as I cried and he smiled and said we if you can cry you dont have sjogrens. I also one counsultant says that it takes a while for everything to show in order for them to give an absolute diagnosis. In the meantime is a bit like a guessing game like Lorna said. Its would seem that the immune disease can change course and jump from one thing to another like RA to lupus or vice versa obviously one will be secondary etc etc

Hope you have something for your rash must be very uncomfortable in this weather.

Big hug

Mari
jeanb
#5 Posted : Friday, July 02, 2010 4:33:56 PM Quote
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Hi Love

What a blinking mess all this is.

As others have said, at least the pred. will calm things down until you are sorted

I have Sjorgren's (secondary) and several others on here have it to. I have been offered a small op to block the tear ducts so that any tears I DO produce won't run away. Not been offered a lip biopsy, but as I can never swallow, I think it's been sort of assumed!

Are your eyes very very sore in this weather? Have you got lots of eye drops and wrap around sun glasses? The glasses are a must. Hoping the consultant can sort things out for you very quuckly. Thank goodness he's so sympathetic.

Love Jeanxxxx
BarbieGirl
#6 Posted : Friday, July 02, 2010 5:28:45 PM Quote
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Thanks for the replies.

Lorna, I have been taken off the sulfasalazine, as that may be the cause of the rash, but he feels it could also be the Sjogren's (if it is that!) he didnt mention going back on them again, am also on mtx and hydroxy

Doreen, Yes, back on pred so hopefully it will help, but was really only helping at about 25mg

Mari, I have no idea if there were tears on the strip, he looked at it and used a ruler, I told him it was stinging though! I started on pred at 30mg for one week, then on 25mg for 4 days, then 20mg for 3 days, then 15 for 2 days, then 10 for 2 days then 5mg for around 6 weeks, then off completely. I didnt realise the A I illnesses could move around from one to another like that, so thats something I have learned, thankyou!! Didnt get anything for the rash, I think he hopes it will go away with the pred.

Jean Did you produce tears before you had the schrimers test? and did he tell you there and then that it was Sjogren's? My eyes do get sore, and I tend to wipe them with wet tissue all the time. I was using visco tears for a while, but havent bought any lately, to be honest they dont last long and are quite expensive. I cant wear the wrap around sunglasses as I have to have prescription sunglasses as I wear varifocals, and cant see a thing without my glasses lol!! I also have a permanantly dry mouth, and sometimes when speaking to someone it feels like my tongue is stuck to the roof of my mouth, very attractive!! I am lucky that he was so understanding and could see how much pain I am in, so hopefully will get somewhere soon!!
BARBARA
Julia17
#7 Posted : Friday, July 02, 2010 5:41:00 PM Quote
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Hi Barbara

Just to say its good your consultant it looking after you and shows genuine concerns, helps so much.

Hope the pred gives you some relief til you go back to see him.

Julia xx
chockers
#8 Posted : Friday, July 02, 2010 5:43:44 PM Quote
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Hi Barbara
if you look up Sorjins in google there is more then meets the eye .

i was suprised there are 2 types and yes rashes are part of it and joint pain and triedness
and other odd things so he could be well right there .You will need the biospsy to comfirm .

look on the sorjins soticty site i spoke to some one there ,


christine
The chocolate eating housewife ...The washer woman .....naughty lady
BarbieGirl
#9 Posted : Friday, July 02, 2010 6:19:29 PM Quote
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Thanks Julia and Chrissie, will go onto the site and take a look x
BARBARA
jeanb
#10 Posted : Friday, July 02, 2010 6:27:10 PM Quote
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Hi Barb

To answer your questions. Sometimes my eyes water for days at a time - other times they are dry dry dry for days! Your GP should prescribe the eye gel or sno tears for you. Have you got a pre-pay prescription?

As for the specs - My wrap arounds are prescription glasses. I honestly couldn't cope without them, especally in this weather. Without them the headaches start!

Take care

Love Jeanxxxx
JulieM
#11 Posted : Friday, July 02, 2010 6:33:49 PM Quote
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It must be so confusing for them to change their minds about a diagnosis. It reads to me as if you have the classic SS and RA together. I have it too.
YES I'VE CHANGED, PAIN DOES THAT TO PEOPLE.
dorat
#12 Posted : Friday, July 02, 2010 6:40:11 PM Quote
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Hi Barbara,

I'm sure I have seen some wrap around sunglasses that go over your glasses, I can't remember if it was in a magazine or on-line somewhere. I'll let you know if I remember any more details.
Varifocals are very expensive aren't they, I've just got some new ones and couldn't believe the price of the lenses!

Doreen xx
chockers
#13 Posted : Friday, July 02, 2010 7:48:35 PM Quote
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jeanb wrote:
Hi Barb

To answer your questions. Sometimes my eyes water for days at a time - other times they are dry dry dry for days! Your GP should prescribe the eye gel or sno tears for you. Have you got a pre-pay prescription?

As for the specs - My wrap arounds are prescription glasses. I honestly couldn't cope without them, especally in this weather. Without them the headaches start!

Take care

Love Jeanxxxx

Lady said it was tpyail of Sorgins even if it was not full blown
The chocolate eating housewife ...The washer woman .....naughty lady
BarbieGirl
#14 Posted : Friday, July 02, 2010 8:03:14 PM Quote
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[size=7]Jean, did ask once before about some eye gel at GPs but was told unless definite diagnosis, in writing, cant prescribe.

Have just got new prescription sunglasses and varifocals with reactalite, so cant really manage to get anymore just now

Had bad headache today, thought it was partly weather, and partly being kept at hospital for so long

Julie, looks like it!!

Doreen, varifocals are unbelievably expensive!! they always cost a fortune each time I go[size]
BARBARA
dorat
#15 Posted : Friday, July 02, 2010 9:27:12 PM Quote
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Hope you can get lots of rest this weekend Barbara, you need it after today!

Love, Doreen xx
Calmwater22
#16 Posted : Friday, July 02, 2010 9:36:38 PM Quote
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Sad barbs what a day you had genlte hugs hun
no wonder your confused,glad nurse got rheumy in see you sory see how long ahd wait but worth it by sounds off it,aww ddint know your mouth that dry bless.
rest up hun we can meet up another time they should been clearer re pred for you.

so he thinks pred will heal it,and did test for sjrgrens i had it done mr garood did it it stung alot but i produced tears after 2 mins they put me out misery feww.
well im glad they found that out as must been quite uncomfy.

sounds like hes saying ra aswell but to work out whihc one primary like did with me mines a primary lupus secondary and still in unstable mode which rheumy said means could switch never heard such thing as this.

id so love give you nice cold drink hug and watch girly movie.
i wear wrap round glasses .


take care hun lv melly
cuddly cats make my world seem so much more fun
MrsWoman
#17 Posted : Friday, July 02, 2010 11:15:05 PM Quote
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Hi Barbara,

Think the test I had was different they shoved what looked like a matchstick made from rolled up paper between the bottom eyelid and eye. I have another eye condition which has also given me dry eyes.

Why do they biopsy the lips?

ts the hardest bit coming off from 5mg. I am on planequil and 5mg steriods. But starting to reduce the steriod. I have been on them ages but I just have to reduce to 2.5. Doc thinks that I will need something extra anyway and my next dmard to try is sulphazine, once I am weaned off the steriods. I failed mtx.

The predislone should kick in soon, at least its fast acting, annoying that you had weaned yourself down its so awkward cutting them up and tracking the reduction

take care

Mari
jeanb
#18 Posted : Saturday, July 03, 2010 10:00:44 AM Quote
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Barb - I think Doreen's idea of sunners to go over your specs is a great idea.

Much love
Jeanxxxx
BarbieGirl
#19 Posted : Saturday, July 03, 2010 11:39:19 AM Quote
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Hi everyone, The lip biopsy shows if its definitely Sjogren's as they biopsy the glands in the inside of mouth. Just hope they can sort it out now, its been sucha long time to get diagnosis right. Will look at finding wrap around sunglasses to go over top of mine, any ideas where I can find them? Have a good weekend, I just have to pop outh with Georgia to get sleeping bag and torch for her overnight camping trip on Wednesday, then thats it for the rest of weekend, just going to rest and let pred do its stuff!!!Smile
BARBARA
Blue Star
#20 Posted : Saturday, July 03, 2010 11:46:02 AM Quote
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Hope your dx can be sorted soon , take care ,

Sophie x
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