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LUPUS UK
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Andy Murray's pain relief

I can sympathise with Andy's painful hips and being unable to get his socks on but what I would like to know is what pain relief did he get that enabled him to play 5 sets of tennis. Definitely not something I've been prescribed.

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Adrenaline probably. Boris Becker and the other German commentator, also a former player, were talking about the difference between practice - where he'd stopped because of pain after 45 mins the previous day and the match situation.

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guess I need to boost my adrenaline then :(

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Seems to require a fairly extreme situation!!!

But what a match!

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wish I could have seen it, I might have boosted my adrenaline that way. :)

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Judy was in tears - so was I by the end! The crowd were on their feet every game he won, there were about 3 supporting the other guy (well, that's what it looked like). And at the end he stayed on court for an interview - and a video of all the other current greats saying goodbye. Sure it will be on YouTube sometime soon...

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The full match was live-streamed on some Bulgarian YouTube whatsyamacallit...probably still up there complete with commentary from Budapest xxx

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I watched on German Eurosport - should have been Federer which I could also have watched on Swiss TV. But for once it was no contest

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😊 Federer has it too easy...let's all move to Switzerland, where life is wonderful all the time 🤗 xxx

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I don't live there - we get Swiss TV here. It would be nice I suppose (if expensive) as then I wouldn't be worrying about the effects of Brexit on my life...

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Hot off the press....a Gov update on Official Information British people living in Italy need to know, including EU Exit guidance:

gov.uk/guidance/living-in-i...

(I was just having a wee look at the Germany page...)

xxx

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Thank you! Was the German one any more informative!!!

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No, but Germany is being uncharacteristically unbureaucratic about the citizenship process for UK nationals...I just need a Lebensmittelpunkt (read aloud as LEBENSmittelpunkt by a friend...I said 'well I shop at Lidl! 🤣) there before the end of March...xxx

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Where do you live?

I have permanent residency papers, first thing we did after the referendum, and Italy has said there will be enough time allowed to get them if there is no deal anyway. If we were still in Germany I'd have been asking for a German pass like most of my friends there but we aren't and I'm not entirely sure I want to be Italian! And what happens then if you need/want to return to the UK? Dual citizenship isn't always an option. I'm not sure what the language requirement is now, it has changed recently, but we live in a 95% German speaking area of a region where 62% are native German speakers and where German is legally an official language. I understand more Italian than some locals but there is little opportunity to use it so I struggle speaking. And it takes up to 4 years to get citizenship...

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Scotland, but I worked in Berlin in the 90s and have unbefristeter Aufenthalserlaubnis as well as the 8+ years residency...the Brexit-Übergangsgesetz allows for dual nationality, with applications permitted until December 2020 IF there is a deal....The German citizenship process is keeping up with demand (up about 300%), about 6 months at the mo...xxx

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Don't you believe it....Switzerland is a wonderful country to visit, but living there is no better nor worse than any other country...believe me, unless you earn a 6 figure salary it can be pretty miserable.

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too much snow

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Depends where you live!!

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WOW! I'd like to know the answer but that pic of a red sandstone horse head is definitely helping! 🤗 🤩 😍😁 xxx

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Horses head? looks like a duck or sphynx to me :) it's a ruined castle overlooking the sea made of red sandstone

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Where is it?

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Lunan bay, near Arbroath on the east coast of Scotland. Sorry to hear your appointment didn't go as you hoped. I kind of understand your disappointment that they can't do anything. It frustrates me that I can't tolerate anything stronger than paracetamol even though my pain has increased over time. Each time I get a new pill or surgery I hope for some improvement but I just seem to get diagnosed with something else. It is a wonder it hasn't driven us all over the edge. Hope you don't feel too tired today from your long trip XOX

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Oh my how i’d love to get up there to see that!

Thanks. Am ok...having a quiet day.

You & all forum folk are THE ones who REALLY understand this life

Well, the main message from the 2 wizardly ENT/immunology was:

- your comorbidity mix is both dire + unique

- the overarching aim of all your carers is to keep you as functional & asymptomatic as poss without risk & damage

- the keys are monitoring + finding & sticking to treatments that help most with least damage

- surgery will always be a last resort for you

- your immunology & rheumatology chiefs are leading your care and will refer you back here ANY time you need us: we’re always here for you

- Etc etc

SO really i left happy...but sobered an£ more realistic

There was an especially poignant & lovely thing when i was in clinic yesterday:

the comely specialist ENT/IMM nurse who ran my tests before i saw the consultants was exactly my fav sort of medic (kind, patient, discussed the day’s results compared to those before xmas...was alarmed by my high BP etc - all in a v intelligent way - not patronising) AND, with a rapturous expression she said: i love your scarf...i have a precious beloved sari in exactly those colours! I explained: this is the scarf i wear to the most special medic appts. She totally understood. It was an exquisite moment of sisterhood I’ll treasure for ever...

THANK GOODNESS FOR CLINICS FULL OF MEDICS LIKE THIS TEAM IN LONDON! XOXO

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You and Coco are super-warriors, a lifetime of illness and still going strong, a wonder to us ALL! 🏆 🥇 🌟 XOXOX

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So are you dear eekt...and everyone here on our WONDERFUL forum + in LUK everywhere....including at head office 👏👏👏👏

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I lived in Arbroath for 3 years - Lunan Bay was our favoured watering hole...

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He has just had hip surgery ..he doesn't have RA..... the rest of his body is probably healthier than any of us will ever be!

It is strictly regulated what drugs professional athletes are allowed to take...so whatever he is prescribed probably wouldn't be suitable for RA pain....But I'd still like to be able to play tennis 1/100th as well as he does.

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The tennis player who does currently have RA is Caroline Wozniacki from Denmark who has just started her defence of the Women's Australian Open title which she won last year before before she fell ill in the Summer of 2018. Since her diagnosis Caroline W has won one title. Would be very interesting to know what she takes. In her interviews she talks about having more massages, listening to her body, eating even more cleanly than before etc. She mentions there is good medication out there but dies not say what she is taking - if anything.

Venus Williams was diagnosed with Sjogren's in her early 30s.

Most top tennis players are amazing - the level of fitness and the amount of training they do exceeds many other sports. Tennis matches can last a long time and they often play in very hot weather.

When Caroline Wozniacki announced her diagnosis there was some surprise she had made it public as it might give her opponents a mental edge in longer matches. I am glad she did as it is inspiring!

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This reply is to Pussbella...but for some reason it's addressed itself to Susannah!!!

Although of course pain is pain whether you are a professional tennis player or a weekend amateur, Williams,Murray & Wozniaki all have the huge advantage of having an almost bottomless money pit to help treat their ailments.

Imagine if you were able to see your consultant rheumatologist just by picking up the telephone and inviting him round......every drug from any country available to you, & travelling with your personal physio.

As you said Venus Williams was diagnosed with SS almost 10 years ago, & is still playing almost as well as other female players of her age.

Although knowing what medication these people are taking might be of interest, it's absolutely of no use to anybody else treatment wise....except maybe the supplements they take , & of course the exercises they perform daily.

Each one of us is diagnosed & our doctors prescribe from tests & their experience the drugs they think most suitable for us...plus in UK on the NHS the drugs it can afford. As you may know in order to qualify for Biologic drugs in the UK, there is a strict DAS criteria & individual funding has to be applied for.....wealthy tennis players don't have to go through those hoops....their doctors can prescribe whatever they think is suitable at any time or cost.

I really hope CW's doctors keep her able to play tennis for years to come. I would imagine SW will soon be spending more time on her businesses,& that that AM finds a second fulfilling career if his time as a tennis player really is over.

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Aye it’s same as Venus Williams having Sjögren’s but barely stopping for water and no eye drops, plenty sweat etc.

I guess we just have to think that they both start from a fitness position leaps and bounds ahead of the normal population of mere mortals - let alone us. Plus they both have unlimited amounts of money to spend on the top therapies, surgeons, meds, dietary advice etc.

I mean it’s not like they have to do the supermarket dash for organic foods or food prep themselves is it?! Or worry about paying rent or the mortgage or a long wait in the waiting room in Dunblane GP surgery?! X

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She claims a raw vegan diet does the job ...

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It’s just like all autoimmune diseases - Sjögren’s can be mild or severe depending on how long she’s had it or what type she has.

She’s relatively young, extremely fit, may just have the Fibro type at this stage and also doesn’t need to disclose anything she takes to the media eg cortosteroids, biologics infusions etc. Although they apparently went through her bins when she was first diagnosed and found a list which included Prednisolone! X

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I’d pay little heed as she’s very private about it. SS doesn’t tarry with lack of eye drop admin and not drinking much, tons of sweat etc. She wouldn’t need to disclose to the public if she actually takes cortosteroids or Rituximab as many with SS speculate? Or perhaps she is anti Ro or La positive but hasn’t yet developed full blown Sjögren’s?

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THANKS suzannah for another GREAT PHOTO & discussion...am just back from a long day travelling long distance to tertiary ENT/Immunology clinic....it went vvv well, but am feeling 🌑...cause turns out there is nothing more they can do at the mo (they say i need to get even worse to be worth risking surgery...and of course we hope i won’t get even worse)...v disappointed i let myself hope they could summon up some magic “fix-all” ....your post is THE best thing for me right now...you’re a life-saver XOXOXO Coco

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Oh Coco, a bitter pill to swallow, it has to be worse before they can try and make it better...but at least it's a painful procedure dodged for the moment - I was howling in the night after septoplasty - and if you have any tips for self-management, let me know before I start stuffing honey up my nose 🤣 ....though not today: on a crispy morn, my sense of smell is a little better, so I'm off to sniff the winter box and viburnum 💐 🌸 🌿 🌞 🌞 🌞 XOX

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Yep, thanks..bitter & sweet 🤷🏼‍♀️ they made sure i know they are totally there for me & that my current ENT treatment my cornea chief’s ciclosporin drops) plan IS clearly doing all the right stuff for me otherwise they’d be operating...and i got their advice re what to do if cornea chief thinks we must try pausing the ciclosporin...so that’s all sweet...plus they approved/agreed my using aerosol neilmed whenever my sad hands can’t cope with the bottle & sachet palaver...but they INSIST i must rinse 2x daily for the rest pf my life...which is kind of a pisser cause quite frankly i find neilmed actually seems to cause stuffiness as much as it clears stuffiness 🙄...have been in daily meilmed for 10 years now...love & hate it... but their reasons are “compelling” 😆‼️

😯 OMG: could there ever be ANYTHiNG i could offer up in your direction that you don’t know already?

Hope the sniffing is glorious...it’s gorgeous here today too...❤️🍀❤️🍀❤️🍀

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I have learnt SO MUCH from you, not least courage and persistence! 🤗 🤩 😍

I'm going to start back with the neti pot - which was no use because the water just came straight back down the side it went up 🤣 - since hydroxychloroquine at 'WOOPLA better stop' level seem to shift the chronic infection that's been lurking one side for decades (?!?)...the couple of times I had success with it, it provided instant relief ( later learnt the rush of liquid produces a vacuum sucking all the gunk out) 😵

It's a beautiful day and the fragrances are GLO-RI-OUS (ok, I only have them one by one when very up close, but that makes it all the more special 😁 )> Hoping your day is getting better too 😗 XOXO

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🙄 OMG: persistence for sure...am like a dog with a bone 😆😆😆😆😆

THANKS! So you have already used the sachets + plastic squeezy rinse bottle system? If you have, am even more interested if you find the neti pot more effective that that bottle system!

How to you organise sterile water?

Gorgeous here too, but COLD A& windy...just seeing sunshine has me feeling better thanks 👍👍👍👍🍀❤️🍀❤️🍀

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Revitalised, happy and rash-free after 6 hours of sun, mmmmm 😁 🤗 🤩

I've tried squooshing various things up (except Neilmed) but they never got anywhere...now I have the chance while my nose isn't completely blocked, I'm going sterilise the neti and water with Camden tablets (for wine-making) and just use a salt solution...the gentle wind today had the same suction effect as the neti! 🤣 🤣 🤣 XXx

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6 hours of sun? have you been out skiing? or making snow dogs?

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Ah, pruning a south-facing hedge while thinking of dogs and chickens! 😁 🐺 🦊 🐶 🐔 🐧 🤗 xxx

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ACE TIP: OMG eekt: you wouldn’t believe the sterile water palaver i’ve been going through all these years...my hands are now to useless fo4 this...THANKS...💃 am off to find Camden tablets 😆😆😆😆💐💐💐💐🍀❤️

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I am sorry they do not have a solution for you but imagine you are sort of relieved you won’t be having the surgery. It does not look like a pleasant experience. Do you sneeze and have a runny nose too? Have you tried Atrovent nasal spray? I have found it helpful but your situation may be different. Get a good night 💤 after a long day. K

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THANKS kay...yes, am concentrating on the positives:

-my current rhinosinusitis + its treatment plan have been reveiwed & adjusted (back to regular sinus rinsing) by an ENT/immunology consultant + surgeon who are top of their field. And they want me to return as needed.

- Their reports help my immunology chief to decide about adjustments to my current PID treatment plan (eg rather than adding on azithromycin, which could aggravate my intestinal enteropathy, he could stick to add on clarithromycin which for me has been v effective + well tolerated) and think carefully about the risk i’ll hyperreact to IgG Replacement Therapy (last autumn he said it’s time to start this, via suncutaneous infusions at home...i’d rather start with IVIG at infusion clinic, but there are many reasons home administration could suit me better)

Etc etc...as you see, am busy processing all this + coming to terms with the endoscopic sinus surgery turning out not to be a Magic Bullet aka The Answer to Everything....i doubt i’ll ever stop Waiting for Godot aka travelling hopefully...i just googled Atrovent: THANKS: will ask my medics about it!

XOXOXO

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Do they think the IVIG could help your lupus as well? I can’t get much out of my doctors, but they did say IVIG could be effective if the autonomic system deteriorated further. K

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Interesting! Thanks for bringing this up. Yes, i do wonder if IgG replacement therapy could do better than my immunosuppression meds at slowing down my progressive neuropathies & dysautonomia...and maybe even other of my stuff that’s still progressing

BUT i know from my PID forums & from a great PID patient info event held recently by my immunology clinic, that there is a massive world-wide demand for IVIG...and that’s JUST for fully officially approved prescribing...and the UK supply is already last in the international supply chain + way over subscribed, so rationing is happening here now - each case has to be present at a panel like the Holy Inquisition....i suspect this is why my immunology team were hoping fancy ENT/imm sinus surgery could do the trick for me rather than IgG replacement therapy.

from reading over the years what i can find in officially published literature on this, i gather that although LOTS of AID patients would LOVE to try IgG replacement therapy, it’s not NICE approved for much and there isn’t enough published evidence that IgG replacement therapy can help AIDs other than a few dire rare neuropathic demyelinating illnesses eg CIDP etc...otherwise, as far as i know, IgG replacemnt therapy is only officially approved for patients with severe Immunodeficiencies, ie patients like me with Primary Immunodeficiency Diseases & cancer patients with secondary Immunodeficiency etc.

Hope you’ll let us know if/when you learn more about IgG replacement therapy & you! The probability i’d be getting IgG replacement therapy has been hanging over me for at least 5 or 6 years now....in that time i’ve learned everything i could about it...and am always ready to learn more!

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Thanks so much for the information. I know my neurologist used the term « tricky but effective. » When I started researching it, my impression was he meant « hard to get approved. ». In the U.S. our insurance companies would have to authorize it. It is very expensive. Hoping neither of us needs it! Please keep us posted. You stay so current. 😘💃🏻K

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You’re v welcome...am glad you brought it up! Am glad you’re in care with a good neurologist...not easy to find!

For what it’s worth:

One of my immediate family in philadelphia who is also a DES Offspring who has a lot of AID-like manifestations but mild enough so manages to live a full life without meds etc...and was prescribed it not long ago by a neurologist for peripheral nueropathies like mine which this consultant diagnosed as CIDP. OMG: MASSIVE FULL BODY PERSISTENT URTICARIA TYPE RASH immediately resulted..needed strongest topical steroid for many many months...needless to say: stopped IVIG after 2nd treatment! I insisted: get second opinion from top neurologist at Univ of Penns Hosp (what i urged them to do originally, but there is no telling some people). The 2nd opinion: NO WAY DO YOU HAVE CIDP!!!!! we’ll monitor you, but, basically, at your age with your clinical signs & lab test results, there’s nothing significantly wrong! And so far: that’s been that! I have such similar hyperreactivity to this relative...i suspect my body could react similarly to IgG, and in london, without prompting from me, the ENT/imm wiz said he thought it might severely hyper react too...

🤷🏼‍♀️💃🍀❤️

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You two really have a genetic hypersensitivity response so I could imagine they have to be very careful. But you know it may be an option for you. I am fortunate to have a good neurologist. Their department has started an autoimmune neurology fellowship. I am convinced this is one way treatment a particular disease understanding moves forward. Of course, the U.S. is faulted for being over-specialized. For research and treatment of a disease I think fellowship training brings things to a new level. 😍

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