I need help..

[Chelleybelly]

Hi there I’m a bit of a complicated one but very unwell .

diagnosed with probable behçets in 2020 post collapse and random left sided paralysis and referred to London CoE but care was none existent. Since then I’ve deteriorated significantly I will try to post relevant details as I seem to be perplexing all my medical personnel . I’m under Guys and St Thomas they know I have a vasculitis but not sure what one and every flare I’m becoming sicker and sicker . My mental health is poor and the pain and trauma of my misdiagnosis's and lab rat treatment has left me not knowing what to think or what to do where to go .

sorry if I’m rambling but hopefully someone will make sense

2006- 2014 delivered preterm babies ,

2007 diagnosed with rare headache disorders cluster headache and hemicrania continua

2012 diagnosed with uveitis first time

Sent to a rheumatologist as Moorfields “suspected” I have something else going on as uveitis was persistent for 5 months . Was told nothing wrong .

2014 randomly very high ESR levels during pregnancy then spontaneous ruptured membrane. PE post delivery day 8 of prem baby said it happens .

2016 dec DVT left limb no cause found , 2 days later developed severe lower back pain , unable to walk 8 visits to AE multiple issues , unable to wee , numbness , kept being sent away pain radiated to knee .

Feb 2017 right eye uveitis diagnosed .. started steroids and non steroidal anti inflammatory. 8 weeks check left eye found to have uveitis .. restart treatment . April both eyes now have scleritis still so referred into lupus unit for testing .

June2017 had first test for autoimmune disease diagnosed erythema nodosum also working diagnosis's were Behçets , sarcoidosis, sero neg spondyloarthropathy most bloods were normal except for raise ESR

Ruled out behçets , RA , lupus etc . All HLA neg

Treatment in eye clinic with steroids for all of 2018 . Tried some anti inflammatory drugs for my joint pains swelling etc . No help .

Dec2018 first trialled aziothioprine for eyes no help , then MMF had a good 8 months then

Oct 2019 bilateral uveitis again , skin rashes , mouth ulcers headaches . - not for oral steroids stay in drops .

March 2020 covid begins I think I caught it ( my workplace was one of the first places to accept COV positive patients . Stopped MMF on advice of consultant as I had a bad 4 week flu (confirmed I did at this point ) via antibody testing .

I shield .

May 2020 .. develop night sweats , nodules on shins , breathlessness. Pain can’t walk . Shortly after eye relapse . GP frantically trying to contact hospital services only seeing emergencies as well as me shielding being on MMF .. had lung function test did poorly ..lung consultant thinks he will find sarcoid on CT .

Results shock everyone no sarcoid on CT . Given cream for legs MMF switch to methotrexate. .. next few months I feel like health can barely walk .. legs feel heavy multiple visits to hospital for suspected DVT but nothing found .

went private neurologist in October 21 explaining I felt like I was loosing bodily functions .. asked everyone to consider Behçets again .. 4 days later I started not feeling well sat in my car felt bearing down sensation then left limb paralysed and unable to use bladder for 1 month .. no one can figure out what is wrong with me

Back to neurologist he asked for emergency referral to behçets COE to treat my eyes and assess me properly no response for 6 months .

when they did see me ,told me that Guys and their behçets neurologist ( who sees me private) doesn’t know what he is talking about .. not everything needs and explanation .. and nothing is wrong with me . that night honestly I had to go to AE to be sedated .. if I didn’t have kids I would of ended it right there .

Next few months spent between private health and St Thomas eye clinic managing my care . They applied for funding for infliximab supported by rheumatology also and behçets clinic doesn’t respond . I continue to deteriorate. I go to a behçets clinic in Italy .. he thinks I meet most criteria but the eye disease is not typical .. still it’s clear my systemic disease needs treatment and we have tried everything so far but the eyes are no stable .

2022 my GP tries To write to behçets clinic . Ignored .. rheumatologist Ignored .. pain team gets involved and gets me appointed a social worker as I’m suicidal .. I’ve refused treatment with opiates so on a combination of drugs to treat my nerve pain to some good response .

GP had sent me to hospital atleast 5 times hoping on call rheum sees me and agrees to treat ..

October 21 i have a terrible reaction to Covid booster pericarditis.

September 22 covid infection again this time they said it was neurovascular ?

then developed cutaneous vasculitis on left buttock joint pain unable to mobilise.

Since then I’ve been severely unwell

Between 2022-2023 have had 3-4 flares of these attacks in the same pattern

Fatigue , joints ,skin eyes .

my eyes have been chronic since 2023february they have said it is episcleritis so I don’t meet any more funding criteria.

I was also recently diagnosed March last year and will be stented for May Thurners syndrome .. diagnosed by IVUS . The consultant ordered a PETscan to ensure there wasn’t any large artery vasculitis.. but they have found lung inflammation.. I’ve been short of breath on exertion for months but thought it was due to my low HB ..

At the eye clinic last week they also diagnosed my eyes AGAIN ! She is saying I definitely have a vasculitis but they are not sure what one . I can see all my test results apart from a low HB an ESR of 17 and a high urine creatinine , swollen joints they have ordered ultrasound of all joints

I want to go to a vasculitis clinic .. I need someone to point me my GP will be willing to refer as they know how desperate I am to be be on some treatment .. I’m under the mental health team and can barely function . Very limited family support . I can self fund 1-3 visits max as I have some insurance

[Mooka]

Have you phoned the vasculitis helpline? They could point you in the direction of specialist vasculitis clinics in your area. Would be good if you could see Professor Jayne at Addenbrookes or someone on that level. It’s too awful for words what you’ve been through and the medics seem to be adding to your problems. Good luck I hope you find someone who can sort you out soon. Let us know how you get on.

[Mooka]

BTW did you know there’s a Behçets section on Healthunlocked. Maybe someone there can help you out with your symptoms.

[AmyS1]

Hello do get advice from the vasculitis telephone helpline. I had bad eye pain along with other symptoms I do not have Bechets but relapsing polychondritis. The only treatment that really improved things for me is infliximab. However if you have lung involvement it might be a different vasculitis and there are other treatments for other vasculitis. Do call the helpline for advice.

[citygirl1234]

Wow, that is quite a journey :/

Prof D’Cruz runs the main vasculitis clinic at Guy’s for GSST’s vasculitis specialist unit. (He also runs the lupus clinic and both come under the “lupus” unit.) He’s a rheumatologist vasculitis and lupus specialist and works with all of the other vasculitis specialists e.g. rheumatology, dermatology, nephrology, ENT, respiratory, neurology etc. He also consults with the vasculitis specialists at other centres like Prof Jayne for complex cases. He’s quite good at getting to the bottom of things and making sure you are handed over to the “right” people if it turns out to not be something that he can directly help you with. Can you ask your opthamologist at St Thomas’ to refer you to him? I’d hope they would have consulted with him already via MDT given your history but I think it might help you to actually see him yourself. If your ophthalmologist can be persuaded to make the referral it may come through more quickly than via GP as it’s a different type of referral. In my experience interdepartmental referrals at GSST come through quite quickly, though it can’t hurt to speak to his secretary too and request to be put on the cancellation list.

He also works privately at the London Bridge Lupus Centre (he also sees lupus and vasculitis patients there - londonlupuscentre.com). He’s quite popular so has a waiting list both privately and on the NHS, but he is worth it and will also provide advice to GPs who have sent referrals while patients are in limbo waiting for appointments to come through.

I really hope this helps you, you deserve some respite x

[Chelleybelly in reply to citygirl1234]

Funny enough my initial referral from the Moorfields was to him .. but I ended up under Dr Garrood and not happy at all as I just been left in this limbo for years .. eye clinic has now started giving ocular anti inflammatories as well as steroids to see how we get within the next 4 weeks as steroids aren’t sufficient.

I will ask my eye clinician to send him a message for an opinion on their messaging service

[citygirl1234 in reply to Chelleybelly]

That’s really frustrating! Did you ever get to see him or did they transfer you straight to Dr Garrood? As far as I know Dr Garrood is part of the rheumatology team but not one of the lupus or vasculitis specialists, the helpline will know better though.

Fingers crossed for you that the steroid and anti inflammatory combination starts to kick in soon.

[Chelleybelly]

update .. eyes poorly again .. joints flaring again GP has sent a referral to imperial as quite concerned about my chest PET results of inflammation.. eye clinic asked them to refer into vasculitis clinic query small vessel vasc ? .. not sure they will accept .. I have eye clinic again on 9march will ask eye DR to speak to Dcruz

[Suzi70 Administrator Vasculitis UK in reply to Chelleybelly]

Hopefully the vasculitis multidisciplinary centre at the Imperial ( Hammersmith ) will be able to advise. imperial.nhs.uk/our-service...

There is a Behcets Centre of excellence in London for those diagnosed with Behcets maybe they can also offer advice behcetsuk.org/london-centre...

[Chelleybelly in reply to Suzi70]

I’ve been to the behçets centre they have said it’s not behçets..also to Birmingham behçets centre.. my main care is at GST and they have now suggested vasculitis centre as my eye symptoms are chronic and I now have chest inflammation on PET and X-ray with no cough but SOB .. as well as a host of other symptoms. GP agrees I think VASc at imperial have accepted referral already as gp had emailed them

[Suzi70 Administrator Vasculitis UK in reply to Chelleybelly]

That’s good to hear the vasculitis centre at the Imperial has accepted the referral