What to expect at first Lupus appointment on Tuesday?

Finally my appointment at St Thomas' is coming around. I'm there Tuesday morning to see Dr Lewis. Will write a list of symptoms and drugs. What can I expect and what should I take? I have recently had a battery of bloods done and will take results with me.

Also how long am I likely to need to be there?

Thanks all! Waited so long for this need to try to get most from it.

19 Replies

  • Make a list of what you want to say. Take something to eat as it can be stressful. And then go to chinatown for lunch.

    If you are confident that you will be able to get say all you need to, and be listened to, then you can relax. My first appointment lasted quite a while and then there were bloods to take. But I came away feeling about 3 stone lighter.

  • Brilliant thanks.

    Even though I've been complaining of quite severe symptoms of lupus to my GP (without realising they were linked) for years and having bloodwork confirmation, until I see the specialist I'm still worried he'll think I'm a hypercondriac!!

    Its a lovely idea to go out for lunch after but I just know how much the morning will take out of me. Previous trips to London have left me needing a day in bed to recover, which is basically impossible because I have four young children.How I used to commute into London daily for work is beyond me and this crippling exhaustion is depressing.

  • Hi Bonnie, wishing you the best of luck. Until treatment kicks in the exhaustion is overwhelming and indescribable to those who have never experienced it. It takes take to adjust to any meds that you may be prescribed. One tip is to look up lupus drugs and their benefits/disadvantages before you go and look at what people are on here using the search link above. This way you will feel you are in a position to ask questions and make a little bit of a choice. Hang on in there as although it's a difficult condition it can be 'managed' better with the right meds. I never thought I'd be able to get through the day as even a shower wiped me out....but it is possible with the right meds for you and constant pacing yourself. Good luck and keep us posted xx

  • Good luck, as you have already said best to make sure you have everything written down and don't feel rushed. X

  • Hi Bonnie, haven't been to St T's for about 18 months, but routine is still the same. I was there about 3 hours first time but a lot of that time was due to being investigated. You will probably still have more bloods, they always do. Don't know if you're aware but lupus unit is not in main hospital. If you are coming off Westminster bridge, it is building on left in front of main entrance called Gassiot house I think. When I first went in 2005 I was shocked at small waiting area, but fascinated by the knowledge that everyone there had lupus. ( not sure if that's true now). I found myself slyly looking at people to see how their symptoms were affecting them. I bet we all do it, such is the rare world of lupus, I had never seen another lupy before. All advice about lists is essential as you soon forget it when Drs take you off track. Good luck, it is a good hospital. ( ps I imagine you are going by train regarding location of building)

  • Thank you so much everyone. Had planned to spend this evening sorting journey etc. I live in sw London so its something I wouldnt have thought twice about before.

    The muscle weakness and exhaistion is the hardest thing for me 90% of the time. I also have APS and Reynaulds. But I have periods that see me more ill. Frequent UTIs, locking finger joints and extreme body stiffness. No fun at all and increasingly over last three years I've spent every day sttuggling to get to the end of the day and wishing my life away.

    I'm hoping to be put on plaquinil as from research this looks like the entry level treatment.

    I used to be such a live wire, performing in shows and a high powered job. These days I'm in bed fast asleep well before my children.

  • Hydroxy does seem to be first line of defence for most of us. It does take a few months to kick in, but I have read comments on this site where patients are offered a steroid jab to help until hydroxy kicks in. I was never offered this and I know I would have had it. Like you I was desperate for anything. Good luck tomorrow. When you have recovered let us know how it went.

  • Thank you gor your helpful and considerate reply. I'll keep you posted.

  • Take a list of your symptoms. They will have your test results on their computer. Take you tablets with you. They will also check your bones over also they will need to take more blood test specialists ones to confirm lupus and they will ask you to do a water sample when your there to check your kidneys. You will be there for half hr to an hr

  • OK. Appointment done. Was at the hospital almost 3 hours, after about 45 minutes with Dr Lewis (who was thorough and seemed nice). He did a full exam, took history, but I never had the chance to list ALL of my symptoms (about 30!!). I gave him print outs of bloods already done and he ordered 12 more. Now I have to wait to be contacted to return in about a month. I left a sample and had my bp taken, but don't know what my sample tested like?

    He explained it's a spectrum and seemed to think warfarin for my APS is a bit out of date (?) and explained first line if hydroxy. Couldn't read what he thought of my illness or the extent of it, but he seemed reluctant to give any indications until the bloods were back.

    I was nice to relay what I was going through. I just really pray I get medicated soon. He explained that hydroxy doesn't really help with the fatigue which I had heard is sometimes the case.

    I have to say it was somewhat upsetting leaving without my next appointment set up, but it will be sent through to me apparently because all the clinics are booked for a while. I'll be much happier when I am getting treatment and will hope it makes me feel better, because honestly life is a chore getting to the end of each day and I really want to get some of the old me back.

    UTIs are a monthly feature for me. I am wondering if it's worth calling the unit tomorrow to see what it showed?

    Also, is it possible the hydroxy could regulate my APS and let me get off warfarin? I hate taking it because it stops me using my reliable anti inflammatories.

  • Thanks for letting us know how you got on. It is a waiting game I know, but you are in the right place. Normally the Dr will write all findings to your GP and you should get a copy of this sent to you. As you would have seen this is a very busy clinic and appts are often sent on to you. I live in Colchester so had to have more local rheumy for more frequent monitoring as St t's only saw me annually. Luckily my Dr at St t's now works at Colchester so I don't go there anymore. Don't know about hydroxy/aps. I have aps and have not been given meds for it yet. It does get mentioned by them on a wait and see basis. I take hydroxy but couldn't say if it helps with aps or not. Didn't know you couldn't take anti flams. Will bear that in mind if I have to start warfarin.

  • Hi Bonnie just did a lengthy reply that's disappeared annoyingly, so I will keep this short incase it's lost again. Thanks for letting us know about your visit. Usually Dr writes to GP and you should get a copy of this. Takes up to a month. I have aps but not on anything for it. I take hydroxy but couldn't say if it controls it. Hopefully your GP will get the ok to prescribe so you can start getting treatment sooner than your next appt. that's if they think lupus.

  • Thanks again all. My GP is not helpful at all. He told me I dont neccesarily have APS and if I do itd just a jab for flights (thrombophilia dr says NO, I definitely need warfarin) and apparently I "don't want to have lupus" - of course I don't but I'm ill and need treatment. He even called me in yo his office to tell me off because I finally got tje referral to St Thomas. I really don't want to have to deal with it through him!

    The thrombo dr was quite concetned to

  • Concerned to get me on warfarin fast because of my stroke and TIAs.

  • Your GP sounds awful. Don't suppose you could switch. ??? Your GP has to work with hospital, as you won't be able to keep dropping in st T's. Bad enough to cope with being ill, let alone deal with a GP whose ego is hurt. Everyone has a right to seek treatment and to tell you off is just wrong. probably GP doesn't want to be shown up for not referring you his/herself.

  • 6161 you are right. Stric speaking he's guilty of negligence as he failed to ensure I had any care after stroke. Admitting he's wrong is admitting neglegence. Think I may well need to change doctor but its difficult as whole family are registered there and have been for three generations so he knows the family histories but one more incidence of neglegencr or mal treatment I think I'll have to go elsewhere and make a complaint. More than anything he's angry about another dr in the practice making the referral and the funding issues I suspect.

  • Yes money does speak volumes. Sounds like he is getting on a bit in age and needs to keep up to speed. I had a similar situation in early years. After GP nt helping I went to a private rheumy. Luckily he referred me straight on in NHS clinic. My GP was a bit red faced, but he didn't show anger. He admitted he felt guilty, and I did respect him for his honesty. Have moved since to countryside and GP here is very good. Maybe should have told St t's about GP. His communication is important. Take care.

  • Haha. I did mention that there were issues with gp not understanding tge conditions. I guesshe is getting on a bit but have also heard stories of lots of lupies coming unstuck with in uninformed gps.

  • Times have changed. Years ago your Gps word was law. The idea of challenging any medic was unheard of. Shame as nowadays no one has time and you do have to monitor your own health, and being pushy is the only way to get attention. Because I had such a traumatic time before diagnosis, I am wary. Not all of them are bad though, just the ones I've seen in the past. Could write a book on it. Take care keep on at them. Hope you get sorted soon.

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