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Discussion Starter · #1 ·
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
 

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Pam,

My thoughts are with you, well done for taking the list! Did you remeber to ask everything you wanted, I never do I always forget!!!!

How will you get your blood results - Rhuemi, Connective tissue clinic or GP and how long do you expect to wait. I know my last bloods only took a week to indicate problems!

I keep getting intermitent ear pain but never get checked for infection have just put pain down to Lupus inflammation.

Hope your ear infection resolves itself, if not ask for an ENT referral!

Take care!

Love lESLEY
 

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elisabethm
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Rhuemi Appointment

hi loppyloo i had appointment today took a list of things to say to him but never got a chance he said not sure if it is lupus or something else did the usual clothes of prod here prod there then said how did i feel on the palquin been on it for more than a year told him did not feel any benifit from it asked about the rest of my medication told him the list of meds then he said i will do more blood tests and then sent me for xrays on hands wrists feet pelvis hips but i had to laugh he said i might have to put you a higher dose of palquin what is the point in that if he cant give me a yes or no to having lupus or not head is spinning not knowing how can one doctor tell you yes you have it then another say somthing else i was glad when i got told that it was lupus as i felt like a hypacodriacte with all the other things that i have wrong with me he also said about coming of the palquin but never said when i was going to get hubby to come in with me but he could not get a parking space by the time he got parked i was out from seeing him dont know if i am coming or going really fed up :sad: :sad: :worried:
 

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Definitely a mixed bag sort of appointment, I have no idea what he means by the connective tissue department! Rheumy's are almost always the ones treating autoimmune connective tissue disorders... I guess you'll just have to wait and see how that referral turns out and ask them what they specialize in treating.

There is a bit of truth to the taking NSAID's more consistently - they are most effective when taking daily for 2-3 weeks than when taken intermittently.

Good luck - let us know how that appt goes. It will be interesting to hear. Too bad you can't see the same person and find one you like whole heartedly!
 

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Hi Pam

I hope you ear infection clears up and you get the results back soon from your blood tests and get sorted with the connective tissue clinic. It sounds like you have had a rough time recently so I send you ((((hugs)))) ..... can you send me some cheesecake?!

Take care
 

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Discussion Starter · #6 ·
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:
 

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Hey there loopyloo I always take a lists too, I am always writing things down and combine my 20 pieces of paper to 1 when I have my appt. I always get copies of all blood work and xray results so I have a binder full for any time I go to alternating docs. I am interested in the connective tissue dept. Never heard of that before:scratch: sounds interesting let us know how you make out hopefully it will help, I always explain the pain as arthritis of the muscles:explain: when I describe my pain so I think I am in the same boat as you,maybe we should go sailing!!:rotfl:
Hope you feel better and let us know how you make out with the cheescake:doh: I mean clinic!!:)
 

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Hi Pam:)

I am not sure what to tell you except that if I were in your shoes I would actually ring the Rheumatology dept and ask them about a follow up appointment. Tell them you are confused about the referral and not sure if it is one and the same thing. It sounds like it is but one never knows....:rolleyes:

As for the urine test...dont get me started! If I didnt remember to remind my dept about the urine test no one else would bother! Sad but true. Get your GP to check your urine just to be sure. Its great that you have a good GP.

Im sure you felt really 'dismissed' by his response to the Cellcept trial:( After all, you put yourself out of your way to take a potentially strong drug into your system all in the name of research and furthering the cause...and that was his response:mad:. I hate being 'dismissed'. You should be given a medal.:foryou:

Hang in there Pam

Joan:rose:

Thats all for more. More later
 

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Discussion Starter · #9 ·
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
 

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Bit off topic but what causes that muscle arthritis feeling? I feel so tender all over it hurts to touch-far worse than the stiff joints I get, and it's been really really bad recently-can't even carry a bag on my shoulder....:( I should look black and blue all over I feel so bruised and tender

Love Rachel
 

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Discussion Starter · #11 ·
((((((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
 

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Pam,:hug:
I hope your next appt. goes well-remember the urine test:)

Tell us how your ear infection is doing. I personally believe when we have a infection our bodies do feel like a "flare" and we just feel yucky all over.
I hope you can clear it up and fast.

Keep us informed:)


Hugs,
Becca
 
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