Light at end of a dark tunnel????

suzygirl

Just wanted to update after my awful rheumy appt. I have had severe mouth blisters and burning leaving me hardly able to eat or talk. :sad: I am used to mouth ulcers and blood blisters in my mouth and throat. This, was a whole other level. :shock:

So after a few days I spoke to doc who prescribed a mouthwash (marvellous!) and some steroid tablets to suck which helped but gave me horrific heartburn. It still wasn't settling though and was spreading outside my mouth, and the corners of my mouth had split. It was ever so painful.

Gp said come down and let me have a look. She immediately noticed all the swelling of my eyes and lips and said it was an allergic reaction. It was a gp I rarely see, she was brilliant!!!

She asked if I was aware sulfa causes this reaction, I explained yes and that I felt it was making me worse but no one was listening. (Although it did help the arthritis.) She was adamant it was an allergic reaction to the sulfa and told me to stop it. (Which I had done 2 days earlier! :oops: ) She also gave me antihistamines which have given me normal size lips and eyes. Didn't realise how bad it was till it all went down!

Then she asked about the care I got from the rheumy I explained it was like 5 years of first appts. She said it wasn't good enough, that the particular hospital concerned was understaffed and overstretched. I said I appreciate that, but it wasn't good for patient care.

So, she said she would refer me to another hospital, the one I wanted to be referred to. Book a double appt, make a note of all your symptoms and meds tried and any relevant info and she will sort it out for me.

How fab is that? My plan was to make a double appt and ask for referral, with another doc. Now, I have got what I want without having to ask I am so pleased, the gp could clearly see I was not being treated correctly and is helping. You can't ask for more than that!!!

So I no longer have to take the hideous sulfa which was making things worse. Although I am dreading the worsening arhtritis, which will be even worse as I am now on 5mg pred not 10. I am going to stick it out.

Sorry for the long post, I wanted to share as it may help someone else. Be prepared for my whinge posts coming up as the pain kicks in big time. :oops:

traluvie

Hi Suzy..

You have had it rough recently..bless you..Glad to hear how wonderful the doctor was, someone that took note?? do not see that very often, if only they were all like that..Might be worth to keep seeing the doc you saw today..,they clearly understand and are alot more supportive than previous ones..So happy that the ball is rolling for you, hopefully your new consultant can be just as nice..
Good that your swelling has gone down.. hopefully you will feel better soon..I do not know much about the sulfa, but it obviously doesn't agree with you, hopefully they can try you on an alternative..Are you taking any other pain dullers with your pred, may be worth keeping yourself topped up so you are not in too much pain..If you are not taking anything may be worth seeing GP to discuss pain dullers..
Hope you feel better soon luvie..

julie47

Hi suzy

That was a brilliant appointment I am so glad this gp is trying her best to help you.
You poor thing having to put up with all those symptoms, I am so pleased that they are now all settling down, It must have been so painful.
I hope your referal comes through quickly and the new rhummys take extra care of you and more importantly Listen to you. I think you are right, you are nearly at the end of that long dark tunnel thank goodness.

Take care
Juliepf x

suzygirl

Thanks Julie and Tracy,

I hadn't thought of topping up the pain dullers, will try that. I have tramadol to take as and when. I am hoping that the discomfort I am experiencing lower down now is just heartburn and not the ulcers having spread down. Have to go and hunt out the gavison. What must I look like slathered in vaseline to keep the blisters outside mouth clean and swallowing liquids to keep burning at bay!!! :oops:

It is so nice to have a good appt to share with others. I know I get encouraged when I read good news. It gives us all a little hope!

barbara12

Oh Suzy I am so pleased for you, you have gone through so much lately..and now things are going your way..brilliant and about time.
I really do wish you well with everything.
You take care

dreamdaisy

What a difference a good GP can make - they are out there a-plenty but damn difficult to find for some! I am so pleased, suzygirl, but golly that was some reaction to the sulph, yes? I am glad you have stopped them, it's sad though as they were helping the arthritis but at much too strong a cost to you. I hope the double appointment and new referral lead to new avenues of decent help and proper support. I wish you well. DD

suzygirl

Thanks all for sharing my ups and downs!!! Just glad I can share an up for a change!!

Lets face it we need them!

tillytop

Oh Suzy I can't tell you how pleased I am for you! I hope more than anything that this is a turning point for you and that you can finally get the help you need.

Thinking of you.

Love and ((()))s

Tilly xxx

frogmorton

Great news Suzy



FINALLY

I am so pleased and can't wait to hear how you get on.

Love

Toni xx

suzygirl

Thanks Tilly and Toni, its nice to know I am not facing it all alone x

skezier

Hi Suzy,

and about time!

Its good when something goes right eh? Hugs and a sachet Cris xx