Hi everyone, had my appt at the rheumy today. Went through all the symptoms again, and he asked how I felt the meds were doing. I said to be honest not very well, as still have pain and swelling. He did an examination of hands wrists knees neck etc. He did the tender points test and diagnosed fibromyalgia, as he said the symptoms are not all RA related. I showed him the photos of swollen hands with the rashes on them and neck and face etc and he said that unless he sees the actual rashes he can commit as the ANA was negative. He asked about the dry eyes and mouth, and mouth ulcers, hair loss etc, and said he feels there is an overlap and we will keep an eye on it. He had added sulphasalazine to the mix of mtx and plaquenil. Have to see the nurse on 20 May to check how the sulpha is gong, and have another appt at clinic in July. I did feel he listened to what I said, and that he is willing to re look at the meds, he said if they dont seem to be working then we need to rethink. He also said if the amtitriptyline isnt working he could change that, but to give it another two months. He also said I have to come off the pred, am currently on 15mg and he watns to reduce it 2 weekly starting at 12.5mg until I can come off totally. This is my main worry, as I am worried that I wont be able to carry on working without it. Well, thats about it, hope everyone is doing ok, take care x

Hi Barbara

All seems a bit of a mess for you at the moment but your rheumatologist seems sympathetic and has a positive approach which always helps. I understand your concerns with the prednisolone; I had a similar cutting down exercise but I had to do it much slower than 2 weekly when I got down to 10mg. Everyone's different though and you might sail through. I then got stuck at 3mg and can't get any lower been trying for a couple of years at least!! Even a reduction of 0.5mg seems to cause a flare so I'm stuck with it for now! Just be sure to reduce really really slowly Take care,

Lyn x

Hi Barbara - I'm glad you felt that the doc listened to you. I had sulphasalazine added to my drug cocktail last year and felt some improvement within a couple of weeks. Unfortunately my tricky stomach couldn't tolerate them. I hope it starts to work for you quickly to help your attempt to wean off the steroids. Take care.

Julie x

Hi Barbara
i am too going for tests for aother dx .But i am moblie and feel fine .So i don,t even think about it .

i might have some overlap extra on top .I don,t care .I have on going rashes .But have faith in my double appoments with the dermiolist and the top R.A man
( who is used to seeing Slceroderma )But no faith in who works for them .I help out by taking notes and photos .
Slight tummy and ruflux rashes and getting dry eyes and mouth .A part from that today been climbing the kitchen cleaning it .On top of work tops and laying on floor cleaning .Went out for sandwich lunch and fourt to eat it as mouth is dry .( not like being at home ) Hubby helped out there .


but there you go .Thats me do i care no .Whats the use of worring about it .

christine

Hi Chrissie and Jean, Chfrissie you are amazing!! how do you keep so mobile/ I struggle with mobility every day. You are always so positvie and just get on with it.
Jean, thankyou for what you said, I just try to keep going, I enjoy working with the babies, and maybe one day I wont be able to, but for now being positive keeps me going and just makes me more determined to work and to get out as much as possible. Went shopping with my daughter today, you know what teenages are, always "need" something! Feeling tired now though, swollen feet and ankles and hands. Will take it easy tomorrow. Love to all x

Well done barbs
your so bubbly postive,such goodd friend to. you take care put feet up cuppa brew.
now hear you say re teens and shopping,i can make laugh my poor mam trips we ahd out clothes shopping the see 1 thing go loads shops and buy 1st thing id seen.me and me mam laugh about it now,poor mam had sore feet at end of my trips.
hugs
melly

Lyn, thanks for your msg. The consultant says if the meds kick in I should be able to keep working, but will wait and see.

oh my so you had strick mum then,yes my poor mam im so fussy bless her.
mind you this wasnt when she was paying was while at college,shoes for senior school i was nightmare.
mam loved to trundle round not,so id reward her with tea cakes and movie.
now i trundle round with her when visit for what shes wants.

thats good barbs re keep working if meds kick in well.
yes you have early nights,best way get extra rest.
take care
melly