Rheumatology appointment update : So my appointment... - LUPUS UK

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Rheumatology appointment update

Happy43
Happy43

So my appointment at Chapel Allerton clinic was yesterday. Saw another different consultant and gave my usual list of symptoms, medication etc. After calling in two other professors they offered me Azathioprine. I explained my concerns re gastric issues and they said I may be one of a number of people who unfortunately are intolerant but they will go ahead and do the relevant blood tests anyway to see if it's suitable and they said I don't have to take it if I don't want to? They mentioned that I have some characteristic symptoms and some non specific ones. They left the room and the consultant proceeded to give me a leaflet and tell me all the information I needed was in it. He then reeled off a timetable of blood tests that I would need if I start it (I already forgot these as soon as he had finished!), said he would ring me if he remembered with the blood test results if not I'd have to ring up and sent me on my way 😮. At one point in the conversation he said ' I will not remember you, I see 50 patients '. I really am amazed sometimes at the things consultants/doctors say out loud, do they have no filter?!! Obviously I know I'm not the only patient in the clinic! Anyway I will now have a long think about whether to go ahead with this treatment, they made it sound optional and they will review me again in 3 months. Fortunately my symptoms seem to have settled for now so I think I'll carry on with my diary and see what happens? 😊

25 Replies
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Gosh, he sounds like an old-fashioned chap - was he wearing a dicky-bow? Cleary aged-related cognitive dysfunction if he feels the need to say he won't remember you :)

Aza is only recommended for moderate or severe symptoms in the guideline (that's +6 on the SLEDAI)...and it seems to have been overtaken by methotrexate

Since you have a review in three months, worth waiting to discuss the blood test results before coming to a decision?

Thanks for the update! And keep up the diary! xxx

Happy43
Happy43 in reply to eekt

He didn't seem that old which is worrying for his future career 😂. I remember you saying about methotrexate and I did ask is there other immunosuppression and he said this was the next line of treatment after hydroxy? It seems as it is UCTD and not clearly defined they are offering me things to try, I get that. I just don't know at this stage whether I want to risk the side effects as I would say my symptoms are mostly manageable with diet, pain relief, lifestyle etc. I wanted to mention future steroid injection as a back up plan in case of another bad flare like I had from December to February but I couldn't summon the courage after 3 of them suggesting Azathioprine and it was the top man who came in, I'm such a wimp 😂. Maybe next time......

eekt
eekt in reply to Happy43

That's exactly it, treatment options should include patient views - wouldn't a perfect doctor be one that had gone through the Aza leaflet with the patient so an informed decision could be made on risk/benefit?!

If you have lupus-like symptoms, they could dip into the SLE guideline?

I was such a wimp at my first few appts, but my rheumy was doing ridiculous things like proposing Aza based on 6-month old blood test, I decided someone had to co-ordinate my health care, and it wasn't going to be him!

Take someone along if you can next time and be bold! Be well! xxx

GlasgowHen
GlasgowHen in reply to eekt

Hi Eekt, have you got a link to the sledai medication recommendations please?

eekt
eekt in reply to GlasgowHen

Hi rolybear! (oh your name makes me smile :) )

The SLEDAI sheet can be found here: sledai-2k.com/sledai2k.pdf

...bear in mind it only takes account of NEW symptoms ie it doesn't score worsening joint pain etc...some research says an increase of 4 should prompt a med review, but 6 is used in the SLE guideline

Table 7 in the BSR guideline has treatment strategies for mild, moderate and severe lupus...be well! xxx

GlasgowHen
GlasgowHen in reply to eekt

Thank you for the link! My username is stolen from my dog, cavalier King Charles spaniel

eekt
eekt in reply to GlasgowHen

<melts> I've had a couple of small dog visitors after 13 years with a lean (not mean) deerhound lurcher and lifting a four-legged friend for a cuddle is very special!

Happy to help, makes my day! xxx

GlasgowHen
GlasgowHen in reply to eekt

Now that shocks me.... you don’t lift your lovely deerhound for a cuddle? Why not?? As a child we had a beautiful, slightly psychotic cross deerhound and Dalmatian. He was huge

eekt
eekt in reply to GlasgowHen

Can't lift my arms above shoulder height, never mind hoist 28kg 😕 ...hence badger-pooped front half in the shower rather than the bath!...never mind the spider-leg spread...but to scoop a pooch for a face-lick is something else! 😍

Deerhound x Dalmatian 👀 ...a superfast carrage dog...oh oy my formatting has lost the plot....ack later?! xxx

Hi Happy43

O dear , sometimes this illness can make you feel like a number or nuisance at times .

Don’t worry too much, I’m also treated at the same hospital .

I also come away a bit puzzled, at it all at times .

Maybe ask the consultant to write down what he has mentioned , has these tests are not normal conversation for you and routine for them .

Hope I don’t see the same chap has you at my appointment in July . 🙄

Happy43
Happy43 in reply to Willow1414

Hi yes I do feel they are a bit frustrated/puzzled as to what to do with me! At least they are trying to help me by trying different things I suppose. I've given up worrying, it takes up too much of my time and I want to get on with life! I'll see what happens with these blood tests and speak to them again in 3 months time about treatment, unless things get worse before, at the moment my symptoms seem relatively stable. I hope your appointment goes well in July, it is a good clinic 😊

Hidden
Hidden

Heck how incredibly rude of him to say this to you?! I mean of course we are just one of many per day but it doesn’t do to say this??!

Re Azathioprine - the main GI problem it causes is Pancreatitis but this only affects about one person in 290 I was told. Trust me to be the one!! Otherwise it’s used for Crohns and Colitis so it really shouldn’t cause stomach upset for most I’m guessing. It was the best for me out of 5 I have tried until the pancreatitis.

Happy43
Happy43 in reply to Hidden

Thanks that's good information to know. It seems I am attracting a few blunt comments at the moment between my GP and now this! I do feel submissive at appointments, maybe time to toughen up and speak my mind in future 👊😂

Hidden
Hidden in reply to Happy43

Well the submissive patient allows them to be patronising arses if they are so inclined. Maybe shock tactics are called for at the next consultation so they don’t forget you in a hurry?! Not sure what but could you just throw a line back at them perhaps that they can’t quite believe they heard or let out a really loud fart or burp and say “well perhaps you will remember this then doctor?!”🤷🏼‍♀️👹💨

Mine all seem to tread carefully with me apart from private rheum last week who could have done with an ear full looking back - but as he reminded me a bit of my late dad he got away with murder!

I’m guessing my doctors don’t tend to forget me now because I’ve written some fairly punchy letters to the bad guys in my time and copied the rest of them in.

No one wants a letter from Twitchy - scary old me!!😏😈

Happy43
Happy43 in reply to Hidden

😂😂😂 love it! I'm going to eat loads of broccoli before my next appointment, guaranteed to produce some wind 🥦😳

Hidden
Hidden in reply to Happy43

Oh go on and add some baked beans eh?! Xx

Happy43
Happy43 in reply to Hidden

Brilliant! 😂 x

Hi Happy43, it seems you , me and Willow all attend Chapel Allerton Hosp. I think it's a good clinic but lately I've wondered who is benefiting who. I'm now on my third trial with them and the trial and the effects / non effects seem the only relevant factors at my appointments. Although I feel very lucky to have access to these trials and am happy to help, unless the dept big boss man attends the clinic my general lupus concerns and increasing symptoms are rather sidelined. I'd mentioned the growing swelling and pain in my fingers and ankles on a few appnts. It was met with an interested face and notes taken, but no actual suggestion of tackling. ****** attends my next appnt and comments on the swelling, says "Well we need to try this for her" scribbles off a prescription, and job done. Perhaps my experience is different as I'm on a trial but some days I do feel like they just want my blood!

Perhaps the three of us should join forces at our next appointments. Lupus army. That would scare them! Happy to let out a resounding trump or two for those with troublesome memories as per Twitchy's advice. 😊🤭💨 xx

Hi it's nice to hear from others who attend Chapel Allerton, who knows we may have been sat there at the same time at some point! I completely agree with your point regarding symptoms being sidelined. I spend a lot of time preparing for the appointment by keeping a diary and writing a list of symptoms and as you say, they are looked at but not really discussed, it's more about the medication they can offer I find. I was hoping they might arrange further testing for neurological symptoms I've been getting but they went straight to offering the Azathioprine and nothing else seemed relevant to them 🙄. What trials have you been on? I know what you mean about the blood aswell! This time I had a trainee and I knew we'd be in for a two arm job as even trained staff have trouble getting blood out of my veins! The poor man looked defeated when he suggested a hand vein and his trainer stepped in and said we'll get someone else to have a go instead 😂. I never get told the results of any of these blood tests at appointments either, maybe I need to add this to my assertiveness training for next time, along with the broccoli and beans! It's a shame we don't all get to meet there.

😊x

Interesting, I’m another Chap All patient, too! My main moan is they moan. It’s true they can be incredibly busy though. However, they do send blood tests to my GP and, since I ask every time for them to be sent to me ( which is good practice) they can’t possibly remember. They are PDQ when they spot something like seriously low potassium, to the extent of bypassing your GP and phoning direct.

I’ve never had a problem with them taking blood. One phlebotomist spotted an ugly bruise from my practice nurse’s test the week before, looked at it in contempt and said “no bruises from me”.

If you can’t manage a fart at the right time, try something like “ooh, what’s that out the window” or “my goodness that’s a big spider”.

I’m awaiting an appt for the mysterious renal CTD clinic.

Hi Lupiknits what do they moan about? I'm glad they ring if it's an urgent blood result, I assume that with most tests anywhere now, no news is good news and all that! Avoids unnecessary worrying for me 😊. Regarding phlebotomy I've never had an issue there before but I've had several problems at GP, local hospital, cannula etc and have had some lovely bruises at times! Seems my veins are shy when they see a needle 😂. Nice to hear from other Chapel Allerton patients, hope you get your appointment soon.

Hi Happy

I can understand your anxiety over medication, I felt quite frightened about starting mycophenolate 8 weeks ago as I have hiatus hernia and bad acid reflux and my stomach soon reacts badly to things. I am now taking one gram twice a day and I have been surprised how well I seem to be tolerating it.

I was given two lupus helpline numbers for Chapel Allerton, one is for general concerns regarding medication, side effects etc and has a turn around of 48hrs, the other is for emergencies only.

I felt I had no option but to try the medication as I couldn’t continue as I was, the lupus has caused ILD and fibrosis in both lungs, so for me there really didn’t seem much choice.

I don’t think they would offer these kind of medications lightly, so to me it seems wise to take their advice if they do.

Good luck with whatever you decide to do.

Stay well, Meg xx

Hi Meg5Meg52 thank you for your reply. I'm sorry to hear about your lung condition and I completely understand that treatment is not optional for you, I hope you are improving? I do worry about the effects on my stomach, I seem to struggle with some medication and gastritis although there are others that I take without a problem so I know it's a case of trial and error. I thought the same about them not handing out these medications lightly I was just a bit confused at the comment they made 'you don't have to take it if you don't want to' ? That to me suggests it's not essential but more of a try and see if it improves your symptoms. At this point I start to weigh up the risks and benefits as from my understanding immunosuppression can be quite aggressive? My main UCTD symptoms are athralgia, fatigue and rashes. I also have other ongoing issues with my liver and possible PBC and am having another liver biopsy so that is constantly hanging over me aswell (4 years of testing and watch and wait policy) sometimes it can all get a bit overwhelming 🤪. I hope you feel better on your treatment.

😊

Meg52
Meg52 in reply to Happy43

Hi Happy

I completely understand your concerns and after reading all the other replies to your posts I’ve realised I’m one of the submissive patients who don’t question enough. Thirty years of bad comments and lack of treatment have knocked the spirit out of me, so much so that I initially refused to start rheumatology investigations again when the chest consultant at LGI suggested it to me. But he said a lot has changed over the years and they know much more, so I agreed to start again. I’m so glad I did. I have started trying to be a bit more proactive since my diagnosis by questioning my GP over his lack of support regarding my medication but I need to take more control over my care.

Good luck with your tests and results. Meg xx

Happy43
Happy43 in reply to Meg52

Thanks 😊 x

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