LUPUS UK
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Rheumatology appointment

Finally got my rheumy appointment next week.

Any tips on getting the best from the short time you get with the consultant?

Im going to try and compile a list but its so varied. The symptoms over the past 2 years have changed weekly.

I dont think theres a symptom i havn't had.

Any support would be great.

Thanks

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Hi

I guess this is your first appointment?

If so, I recommend you wear loose fit clothing as he may well examine you. Write down your symptoms and also any medications which you felt made you better or worse.

Always ask for a copy of the letter being sent to your gp BEFORE you leave the room.

Sometimes, your gp surgery will do a printout of your latest blood results, which you may then be able to discuss with the consultant, it is always worth asking and should be free.

It also helps if you take a relative or friend with you, he/she will remember bits which you may have forgotten, not only with your condition but also during the consultation.

Best of luck and hope you get the answers you are looking for.

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Didnt think to ask for blood results from the GP so thanks for that🌟

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Hi sit and Wright all your symptoms ,go back to your docs read your notes list all your infections etc ,take someone with you,it can be overwhelming after waiting so long for an appointment,don't be rushed,yes I am awear docs only have so much time and are very busy,but so are you and this illness is making your life hell.

You have to be strong with them,you my be lucky and as I did and find a doc who gives a dame about you as a human being.

If thay say things you don't understand ask them to explain ,Wright it down and if possible (some will)

Send copy's of Letters to your gp to you as well.

Good luck x

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Good luck with your appointment as mine are always disappointing!

My rheumy doesn't seem interested in all the side affects that come with lupus just the joint issues. And always write everything down you want to say because when you in there your mind goes blank.

All the best Steve

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Steve its just a nightmare. I havnt got a diagnosis, dont really want one but need one so I can move forward and get appropriate treatment.

Its gone on that long with that many different symptoms i dont know where to focus anymore.

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To howsaboutit,

It might be worth your while getting an appointment with a superior generalist specialist on top of the Rheumatologist.

I'm speaking from the perspective of someone with an SLE diagnosis who has found just one form of specialist never seems to be able to cover everything. I think its always a good idea to have another senior Doctor waiting in line, just in case the one you've been pinning your hopes on turns out to be a dud.

And a note to Steve.

For me -

The onset of a recent serious SLE flare was ignored by my ( quite senior Rhuematolgist ) because my partcular lupus pattern has next to no obvious arthritis.

I explained this 33 year pattern to him ' very clearly ' but despite becoming very ill right before his eyes, he could not budge from his fixation on arthritis signs and fibromyalgia.

Always tripple check that you're Rheumatologist is Lupus savy !

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QUOTE: Always tripple check that you're Rheumatologist is Lupus savy QUOTE

I did but the look on his face said are you questioning my position!!

But I'm almost sure he's not up on the lupus and all the side affects it comes with, not sure there's any lupus docs around who understand everything.

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There was a point when this last flare was just beggining and I was 70% sure it was Lupus. This ex rheumatologist of mine has so many degrees and is one of the most respected professors in Australia - (yes I'm a foreign devil) that up against all this I ignored my own reality and gave into his god like status - I actually thought he must know something about my symptoms I don't.

He was very elusive - deflecting what I see now where quite reasonable questions.

I've have spent almost the entire year fighting a terrifying flare because of his deluded arrogance and my own stupidity.

OK. Another obvious profundity - get ready for it :

At all times trust your own reality over your Doctors.

easier said than done this one.

Always ask why they have reached their opinions and if it sounds too dodgy, move on. Travel on the magic roundabout for as long as it takes.

Lupus people really need more than just a Rhuematolgist.

Its been suggested a general specialist is more appropriate for me. One that can spot obscure symptoms of internal organ problems.

It depends what kind of problems that comes with you're particular lupus.

I've heard a lot of UK lupus people describe their 'team' of Drs. I think that sounds like a miracle thing. I've even heard of Lupus specialists ?!?

Still in the dark ages here.

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Hey can I ask which professor? I'm in Melbourne and just saw a (apparently very knowledgeable) professor yesterday...my gp and I are almost sure I have SLE. Once he saw I had no swelling and movement pains in the joints (despite stinging and aching joints all the time), he told me rheumatology has got nothing to offer me and basically pushed me out the door!! I am so confused. Your story sounds so much like mine, I just wonder if it happens to be the same doc...

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Hi 1985mum.

I was diagnosed with SLE 33 years ago.

When on the very rare occasions I do have serious arthritis, I have no swelling or redness.

My ex Rheumatologist is Professor Geoffrey Littlejohn. Based, and - last time I heard, head of Rhuematology at the Monash Medical Centre.

He has trained every second GP & Rheumatologist in Victoria. (Possibly not good news). He based his career on introducing the concept of fibromyalgia into Australia, so unfortunately that's where his fixation obsessively remained with me. I've read some of his research and was appalled by his use of language. Very fond of the term 'neurotic' among other delights.

Can I ask what was the name of the Rheumatologist you saw ? ( so i can avoid him ! ) And where was he based ?

I have googled that there is a Lupus Specialist based at Monash, and I'm wondering whether to approach her ?

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I saw Stephen Hall at Cabrini. He's older and was trained at Mayo Clinic in Rochester USA which is meant to be world class in medicine so I thought i was onto a good one. no such luck. Do you mind me asking exactly how your arthritis presents?

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Yeah. My guy was older. Better to find younger ones who show signs of having sought continual learning after graduation - or so I've been told at least.

I had (childhood onset) Lupus that has a different - more internal organ based disease pattern. The worst arthritis I've had was when I was 14. It effected ankles, knees, fingers. Pretty much all over. I reached a point where I couldn't walk because of one ankle. 'No swelling - no redness' (The only redness I can remember was when I was forced to walk way too far for way too long)

All I can say is that it was a very servere sharp kind of ache, but I was still able to use these joints. Nothing seized up.

If you've ever been in fresh recovery from a broken a bone - it was a lot like that.

In adulthood, my flares are preceded by a very microscopic version of this, only in my fingers. I could barely call it pain, but its a sign of a flare for me.

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Thanks for that. Sounds so familiar but mine has only started in the last few months and I'm 30

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No worries.

Don't let one idiot having a bad day put you off.

Whatever their ideas are about arthritis, you should have been offered a full run of blood tests.

Good luck !

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I havn't been diagnosed with athtitis either. But i am being treated with prednisolone for generalised tendonitis at present.

The pains started in my elbows and left shoulder.

I couldnt even pick up a cup of tea without using both hands to take the load.

I was given 15 mg prednisolone for 7 days. Within a few hours of taking the first one the pains were almost gone.

I was then on 10 mg for 4 days, 5mg for 4 days then stop.

Within 3 days the pains were ramping back up and by day ten i was back at the Dr's in agony.

Started back on prednisolone told to take as little as possible and titrated it down to 4 mg which was just dampening the pains.

Saw gp again who said we need to get you off, so i stopped them again.

Ended up in tears at the Gp's door once again.

Was told to take 4mg for 2 weeks and reduce by 1mg every fortnight.

Im coming to the end of the 3 mg cycle dropping to 2mg monday and im struggling.

I seem very sensitive to even a 1 mg drop.

Worst symptoms at present are left shoulder, right flank, lower rib area, right hip and left base of heel on weight bearing.

My body feels hot and sometimes clammy my hands feet and left forearm are painfully cold.

Temp is always around 37.3

Im so very tired, sleeping lots, nose and eyes feel dry.

Sores in my hair.Etc

Blood and protein persists in my urine.

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How long till you see you're Rheumatologist?!?

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Wednesday next week. X

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Sorry, I know you're probably overwealmed by appointment advice, but please

make sure you get the blood and protein in your urine addressed by this guy ! Ask for the full gammet of kidney function tests. Blood/urine.

Best of luck. x.

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Dont be sorry, i really aporeciate everyones input

Iv stressed this time snd time again. Had 24 hour collection, pcr etc. Was on warfarin at the time i saw nephrology. They wanted to do kidney biopsy but because of warfarin didnt. Was refered back to my gp for monitoring of bp and urinalysis etc.

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I really hope Wednesday gets you closer to a solid answer.

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Thank you. It means a lot x

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Its the ignorance that is so upsetting. Its just more sufferance and soul destroying one has to endure.

Can i ask how long does a flare go on for?

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Hi.

For everybody Lupus is different. For a lot of people flares are a bit of a discomfort and don't last long and in between those periods they can lead a relatively normal life.

eg. I had a friend with a the more normal, milder version - she worked full time, got a little bit more easily fatigued than most, and would occasionally hit a 'lupus wall' of about 2 - 3 weeks but this was not often. Her illness was well controlled.

Even with my somewhat more serious form of the disease, in between flares I've been pretty healthy and functional.

Its definately not all doom and gloom.

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I am currently preparing a letter with all my referrals, investigations, relevant past medical history, medication, symptoms past and current. I will let you all know how I get on tomorrow when I'm back. Many thanks for all the input from each one of you.

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Back from seeing Dr Bill Grant at sheffield.

His referral letter from the gp said he was thinking i have fibromyalgia.

He clearly said he wasnt happy that i had been put on steroids without a definitive cause / diagnosis.

Anyway the consultant said i am presenting with some signs of connectice tissue disease.

These are the blood tests iv had done today And any help with interpretation would be great

(I have added what i found on google that matches with the tests iv had.)

Urine protein ratio

Full coag screen

C3

DNA antibodies

ENA autoimmune test

ENDO

ANCA auto antibodies

HEP2 iGg specific antibodies

IGS immunoglobulins

RF-1 rheumatoid factor

TGT thromboplastin generation time

ESR erythro sedimentation rate

F ?? Ferritin

CAP Immunoglobulin IgE

CK creatinine kinase

CRPR C reactive protein

FEP Free erythrocyte protoporphyrin

HAEM

UA uric acid

UE urea electrolytes

He Ticked undifferentiated connective tissue disease on the follow up form.

Referred me for ultrasound of left shoulder.

Seeing consultant again on 25th nov

He did say if test come back NAD then he will look at whether a diagnosis should be made based on seronegative results.

Overall i feel i was listened to which is a big start.

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Forgot to mention consultant Said shoulder pain he feels is impingement and because of no clear injury and recent onset is the reason he is sending me for ultrasound.

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Well, he certainly sounds as though he knows his stuff and is not prepared to leave you floundering.

I think a lot of us start as udctd before reaching a definite diagnosis. It is good that he has listened to you about your steroids and their efficacy on your present condition as they would have been pretty useless for fibromyalgia and not routinely prescribed for it.

That is not to say you don't have fibro, it does tend to go hand in hand with other conditions, (as I know myself, unfortunately), but it is good to see he is being thorough.

The blood tests are pretty standard and cover RA, antiphospholipid syndrome, SLE, Sjogrens, kidney function and iron levels.

However, diagnosis is not made by blood tests alone, there needs to be other qualifying conditions like extreme fatigue, mouth ulcers etc. Have a look on the Lupus UK home site where you can get more information.

Hope this helps.

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Many thanks it certainly does help.

I didnt have any sores at the appointment but started with a raw sore nasal septum day after and sore in the floor of my mouth.

Im doing less and less and my life is basically laying on the sofa. This and the pain is upsetting and frustrating me deeply.

My mood is rock bottom and i can shed a tear at the least little thing these days. Thr steroids are reducing and my shoulder elbows hip and ribs are getting worse and worse. Imback struggling to pick up a cup again due to pain in my elbows.

Iv since started with real tightness in the rear if my thighs along with pain snd stiffness.

I am hoping i get a call before the appointment on the 25th of nov as im not sure how im going to manage.

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Had a letter back from the consultant rheumatologist, from his examination he has put i presented with a malar rash, periungual erythema to fingers along with shoulder impingement.

Im off for ultrasound of my shoulder today,

Steroids have finished, im in agony again, the pleuritic pain is horrific i feel chesty and wheezy and my eyes feel gritty puffy and dry.

hurry along 25t nov when i get my follow up appointment.

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Had the ultrasound no tear to the tendons but evidence of inflammation. The sonograpger showed me that the tendons were inflammed and there was fluid underneath the tendon.

Thats after about 11 weeks prednisolone and naptoxen 500mg.

Fingers crossed im getting somewhere.

Has anyone else suffered with tendonitis / bursitis ?

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Im back to see the rheumatologist on wednesday for my follow up.

It cant come round soon enough.

The prednisolone has been finished just over 2 weeks and im in so much pain, especially my elbows shoulder around my ribs and hip, im so stiff even after sitting for half hour,

Iv become more wheezy/chesty too and have pleuritic type pain when i breath. Have coughed up tiny amounts of blood but nothing more. Left forearm feels painfully cold still which i think is nerve involvement caused by inflammation.

Anyway i will post my outcome on wednesday.

Wish me luck xx

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I have been back for my results, all bloods were normal apart from the inflammatory ones which were only slightly raised saying this i was on prednisolone at the time. He has checked the markers agsin. I have bursitis and inflammation in the shoulder they scanned.

The consultant had given me a diagnosis of UCTD started me on hydroxychloraquine 200 mg twice. Has referred me to the dental hospital and advices yearly eye tests.

He also gave me a cortisone injextion to my shoulder which after 2 days has miraculously inproved no end.

Back to see him again in march.

Starting to feel more positive now.

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