[LoopyLoo]

Hi All,

I had a rheumy appointment this morning, the first one in a year as my 6 month one was cancelled. I found myself quite nervous last night so wrote everything down. I've still not gotten over my flare and have been feeling pretty yuk so it was a good time to go.

He was very nice - it was yet another different doc from last time - he took a history then examined my joints. I explained about my recent flare and he asked me to describe it - no problem......fatigue, rash, joint and muscle pain, ulcers.......

Here comes the first black mark - he asked me 'where is the rash' and looked at me intently. i explained that it was treated with protopic cream and I very rarely get the rash since being on Plaq. I think he expected all lupies to present with a rash!

Moving on, I explained that I felt that I was having 'aftershocks' of the flare and was now on my third dose of lurgy since. My mouth is a mess and the pain comes and goes. He found tenderness around my knees, right elbow and shoulder.

His conclusion was that my pain is more connective tissue than the joints which I agree with. He has referred me to a connective tissue clinic in 4 weeks time which he thinks is better equipped to cater for me.

We talked about the Cellcept drug trial and he felt that it was too strong a med to try me with so if I'm no better in 4 weeks I should start on a short course of Pred.

He also suggested that I take the Naproxen more regularly as I tend to only take it when I really need it and it's not as effective. I've also got Viscotears to take to help the dry eyes.

His second black mark was not asking me for a urine sample and I forgot...tsk tsk! :tuttut: He did do my bloods though. The ones I noted were - FBC, C3 & C4, ANA, UE, ESR, Bone(?), WBC, Double stranded DNA(?)

All in all I think it was a good appointment. The only thing I'm now wondering is if I'm still under rheumatology care as they didn't give me a return appointment. Do they run the connective tissue clinic?

I'm seeing my own GP later this afternoon as my ear infection is much worse even after antibiotics so we'll see what he says. I'm off to have a coffee and a slice of cheesecake :wink2:

Hugz,

Pam xxx

 

[LoopyLoo]

Thanks for the replies :grouphug2:

Lesley - I won't get my results until I go to the Connective Tissue Clinic unless something significant shows up. I did manage to get across everything I wanted to

Elisabeth - I'm sorry you had a bad appointment, I've been there too and it's not nice. It seems that the doctor is a little unsure of how to treat you but on a positive note - he took the bloods and x-rays. I hope you feel better soon.

Maia - I've been googling and it looks like it is the rheumy department that run this clinic as I've found a couple of other hospitals in the uk that do the same thing. I'm thinking this must be a new thing. The rheumy clinic I go to has 5 or 6 docs and you can never guarantee which one you'll see. I've found that the younger they are the more clued up about new things or alternative treatment which is how I ended up getting acupuncture. I too am intrigued by this clinic. :lol:

Jackster - I had saved you some cheesecake but I kinda scoffed it before I sent it to you. Sorry :hehe:

 

[LoopyLoo]

Update on Connective Tissue Clinic

Joan,

I was at the hospital earlier for acupuncture and asked my physio about the Connective Tissue Clinic as she works primarily for the rheumy department. She told me that it is a relatively new clinic run by 2 of the rheumies - it just so happens that one of them has a keen interest in Lupus and is well published.

I've spent the last 18 months trying to find a way to get to see him! My physio agrees that I have a lot of tissue inflammation at the moment and it will be a great clinic for me.

I feel so much better about this, it really picked me up today - roll on March 31st. :excited:

Hugz,

Pam xxx

 

[LoopyLoo]

((((((rachel))))))

That's exactly how I felt today - even my backside was tender to touch and there's a fair bit of it. :hehe:

I had this pretty bad before the Plaquinel kicked in but it's back with my recent flare.

My doctor refers to it as myalgia but I also have some muscle weakness too, known as myositis.

I'm afraid I don't know the exact science behind it but I keep looking for that bruising too Rachel......

Hugz,

Pam xxx