Has your next appt at the L/C Lupus Unit at St Th... - LUPUS UK


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Has your next appt at the L/C Lupus Unit at St Thoms' been cancelled?

lillylou profile image

Hi I have received a letter from St. Thom' Lupus Centre cancelling my appt for the end of Jan 2013 and advising me that my GP can take over my care.......even though at my last appt at St.Thom' I was prescribed Mepocrin which I can only get from the Hosp.If my GP cant prescribe Mepocrin how am I supposed to trust a GP (no disrespect to any GP's)to monitor me whilst I am taking it.If you have had a similar letter from The Lupus Centre please let me know......I had hoped for a better 2013 ..... no chance , as if constantly feeling like crap and in constant pain isn't enough I am now being denied treatment at the one place I thought at least understood the needs of Lupus sufferers.I am not angry I just feel at a loss.I dont understand why instead of turning patients away the NHS isnt investing more money in the Lupus Unit as there is obviously a need for it.

17 Replies

I don't go to Tommie's but have heard from some of the lupies on Facebook that this is happening, cos they have too many patients at Tommie's. Don't know where you live, but I believe Kings and UCL have lupus units - other folk on here may be able to recommend somewhere? You can also ask your GP for a referral to a different rheumie, but it's really tough to switch when you have got some trust in somewhere.

Hope you can find somewhere else that's good xx

lillylou profile image
lillylou in reply to marypw

Hi marypw, thanks for your reply.Wishing you all the best for 2013. xx

They discharged me a few months ago; I'd been seen there since 2001, having been diagnosed by the Great Man himself, Dr Hughes. Then I was seen by Dr D'Cruz and finally passed on (to some other consultant this time female with whom i never felt a good connection).

At my last appointment they told me there are sicker ppl than me, (of course true and thank Gd). And as my bloods had been neg (clear) for a few visits, they were letting me go back to the care of ?? I don't know who because I only just moved to my new flat and do not know my GP at all. I anxiously asked if I would still be allowed to keep my Rx for Hydroxchloroquine and the Consultant said "yes... it's good for inflammation". Anyway, that's my main concern.

Now I've been diagnosed with Fibromyalgia and they down graded my Sjogren's to "sicca syndrome" (I know they are the same but the Consultant INSISTED on using that term in my opinion to make it sound less serious.

Yes I'm a bit bitter but also glad. Does this mean I can get cheaper Travel Insurance? heck knows!

But hey there are many who ARE unfortunately much sicker than I... Thank Gd and Good Luck to us all. GD Bless The NHS (still the best in the world).


lillylou profile image
lillylou in reply to JSue

I was originally diagnosed by Dr D'Cruz was then handed over to a female consultant who I was unable to connect with, I thought it was my fault but perhaps we saw the same person! any way can you tell me did you still have symptoms even though your bloods were neg ?


JSue profile image
JSue in reply to lillylou

My bloods have always been negative (except for occasional positive coagulant). Yes I still have symptoms -- Absolutely. I think they needed to clear space for ppl who fit the more typical ?? profile eg with positive ana. Without my Plaquenil I have rash, hair loss, insane myalgias, etc etc. Even with, I get photosensitive rashes (various). I also have Idiopathic Microscopic Haematuria -- this has been investigated (not by St Thomas) multiple times with the consultants (UCH) saying it is "probably Lupus related". So that;s that... they need the room for sicker ppl and that's fine with me. I REALLY did not like this woman, nor did I like another woman I went to see in the pregnancy clinic (no names necessary). She gave me no hope and never a smile, through all my NUMEROUS miscarriages, having to sit there in the "BABY CLINIC" -- opposite the wall of SMILING BABY FACES when you've just m/c for the umpteenth time... Well Syonara St Thomas!! I will not miss you!

:-/ xx

PS I did ask sheepishly about my (new) pain being poss Fibro and they jumped on it -- in my opinion very glad to find another Label -- and it did mean I got a referral to a Fibro clinic. That turned out to be a complete waste of time (altho v nice clinic there at Guys') as there are very few treatments to be had under a consultants care. So they in turn handed me back to my GP who is tasked with trying any meds to see what may be of benefit.

Anyway, Lupus has obviously gotten too popular ... Fibromyalgia is the next bandwagon to jump on -- or be PUSHED on. ;-)


regarding the Meprocrin -- I would suggest asking your GP for a batch of post dated blood test requests so you can sort that out at regular intervals; not have to go in and ask for an appt, then get the test, then ... you know. Basically they are trying to get us to take over our own care as much as possible. You can deal with this -- I know it stinks, but you will find a way. xxx

Thanks for posting this lillylou

Have been sort of waiting for this sort of thing to come up: it seems inevitable

JSue, I think your replies are really good ones! I know that sheepish feeling, cause my current meds & lifestyle management are helping to take the edge off most of my symptoms....and my gp is pretty good at orking with me on my utoimmune issues, but I try hard to remind myself that some of these symptoms aren't as mild as maybe I like to make them out to be.....I've spent so many years learning to cope with being more or slightly less unwell, that sometimes I con myself into underplaying the severity of symptoms and the extent to which they reduce my quality of life and may even be contributing to significant permanent damage, when getting treatment might slow the onset of such permanence. It's a sort of self sabatoge maybe....which something about the way the NHS works could encourage in those who try to be responsible by putting as little unnecessary pressure as poss on a struggling health system.

I agree with JSue: we can deal with this! But it's hard when we're feeling extra poorly: this time last year I was hunkered down doing 5 months of high dose long term flucloxacillin for osteomyelitis in my upper jaw: I was dealing with everything ok I guess, but boy was it harder while my condition and the meds I was taking made me feel o very out of it.

Well, take care and good luck

And happy new year

lillylou profile image
lillylou in reply to Barnclown

Hi barnclown thanks for reply. I also under play my symptoms to my family and to medics as I dont like to make a fuss,I was brought up to believe that to show pain is a weakness I now know thats rediculous but cant change the way I am although I continue to try.I can only hope that at some time in the future I and all Lupus sufferers will get the medical help and support we all need to deal with us as individuals and appreciate the complexities of our illness and its affects.

take care and thanks for your reply. x

JSue profile image
JSue in reply to Barnclown

Long term antib will knock you for six. I just finished two concurrent courses for a chronic sinus infection that had gone undiagnosed for 10 months. Finally my teeth, jaw and eyeballs were hurting! On the meds (Azithromycin) I could barely get out of bed most days from complete and utter exhaustion. But thank goodness they work, eh?

take care xx

Barnclown profile image
Barnclown in reply to JSue

Thanks you guys

Yes I totally agree with you both

2012 was my year to really get my head around antibiotics taking....finally after nearly 60 years of catching any infection going. Several women on this forum have helped me a lot to wise up...and now I do much better at working with my gp and specialists on my predisposition to infections and on managing the sideffects of antiboitics...but there is nothing easy about this stuff....I have several women on this forum to thank for coaching me as I learned more about infections/me/antibiotics in 2012....this forum has been heaven sent

And lillylou: this post of yours, plus meeting up with jsue has been a great close to 2012

Happy, healthy new year wishes to you & yours

Take care ll

Hi new to you lot , but not new to pain nor being filed by various doctors who like to tell you stats about the area an people all over coming to lupus unit. I think it's a shame they have forgotten we are sent there by the GP who had run out of ideas to help, after 5 courses of anti biotics mine sent me in case they were making the problem worse , not my special list remit it would seem , back you go do not pass go an return to where you came an you only have Sicca dear, I've read about this illness an live with it an what ever side kick it has Joined forces with , I wish it knew it was a z list an 400 mg of plaquinil must be lip service now go away , do they know how scary this is

I attend St. Thomas's & was dx by Dr Huges himself. A brilliant man & very kind & caring person! I went to him in 1998, had very high levels of ESR & I can't remember what the other one is called (sorry got brain fog really bad lately). I also had masses of ulcers, extreme fatigue & awful joint pains! He did tests & I went back to see him 3 mths later & he said I had Lupus. Shortly after was dx with Sjogren's Syndrome, my mouth is constantly dry & my tongue is such a mess because of the dryness & the ulcers I get on it. I have to carry a drink with me everywhere I go! Was told to chew sugar free gum, which I do do! After seeing Dr Hughes he decided to admit me to his ward for what he called "a body MOT" lol I went in & was there for 10 days, & at that time I had a severe chest infection for which they put me on the right antibiotics. Plus had a fair few tests whilst was in there. He discovered I had APS, which would have accounted for the 2 major strokes I had! Was put on warfarin & had to go back to hosp 2 mths later. I had a letter telling me they had to ccancel my appointment & made it for 4 mths instead of 2? When we got there there was no sign of Dr Hughes & saw Dr Kamashta, who was extremely good & very kind. He took everything I said seriously & not once did he intimate that I was wasting time! He used to make a 6 mth appointment but then he would put it for 3 mths to see himself! I learned that Proffeser Hughes was doing research. I was very happy seeing Dr Kamashta & he dx me with fibromyalgia. Then when I went for an apoointment with him i had to see Dr D' Cruz, saw him a couple of times before he refered me to see a female consultant who seemed to take an instant dislike to me! Don't know what I had done wrong, but she clearly didn't like me! I have been in a wheelchair since 1997 after my 2nd stroke which left me with right sided weakness. Have also got a heart murmer, angina, osteoporosis (dx 2 yrs ago), osteoarthritis, degenerative disc disease in my spine. Hyyperprolatinaemia (tumour on the pituarity gland causing high levels of prolactin. but it has shrunken now) thank god! Had a hysterectomy at 27 yrs old & had a stage 3 breast Cancer 4 yrs ago! This had completly out of the blue as had been worrying over other things.Just by chance found a huge lump in my breast & went to drs immediately who sent for an urgent mammogramme & scan which confirmed breast cancer & saw the consultant who said it was an aggressive, progressive kind of cancer with the potential to spread quickly!!!! He recommended a radical mastectomy with the nodes removed, for which we agreed to! Trouble was I had severe Lupus, APS & heart probs that they were extremely worried about the anaesthtic & if I wou;d wake up or bleed a lot!! Anyway had the surgery which they found a lump 2 inches long & had to have a lot of radiotherapy! Last time I went to Lupus clinic I saw a different Dr who was fairly good, he said I had Rheumatoid Arthritis! A few wks later received a copy of letter he sent to GP & asked for a specific blood test & also to be put on vitamin D tablets. Had this blood test done & when they came back had to be reffered to another specialist,l who said I had Hyperparathyroidism & couldn't have surgery because of my medical conditions so am on medication for that! Have so much medication that I'm a walking (not walking for real) chemist lol. Have to go back to St. Thomas's in Apr & don't know if they will put my appointment back or what!? Sorry for going on so much! I do feel for you lillylou & would definately ask about going to another hosp, & not to let them palm you off! I wish you good luck & hope you manage to find someone good, & if you do let us know pls? xx

Hi Goldengirl,sorry to hear you have had such a rough time of it. Hopefully 2013 will bring you some respite from your many problems and you will enjoy some good days.I am so grateful for the support I have been given by fellow Lupies and I will try to get the help I need from the medical profession.X

You're amazing Goldengirl. You deserve some good fortune after all you've been through over the years. I first saw Dr Hughes in about 1991 and agree that he was very kind and caring. I was particularly struck by the fact that even though he was the most senior person at the unit he had a very humble attitude. Dr Kamashta was also very kind and helpful when I had my two sons at the hospital. It sounds like things have changed a lot since I was taken off the list several years ago.

I have just posted on another strand about the difficulty of getting back on the list at the Louise Coote clinic once you've been taken off. My GP practice wouldn't refer me recently and I wondered if it was due to funding.

Whenever I'm really ill I do wonder if it might be Lupus-related and whether there might be something sinister going on inside me that I should be sorting out. I keep my fingers crossed.

My appointment that was supposed to be in October was postponed until mid March. I just hope that they will not postpone it again, as I have a flare up and my GP does not know much about lupus

My last appointment was August and was put back to just before Christmas. As things were going well, I was t hen offered a choice of being seen in a year or being signed back to my GP -with the option of being seen at 2 weeks notice if need be.

I told Her that I felt better being on their books and under the care of St.T's.

So my next visit is scheduled for Dec18 2013.

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