Advice Please: Good Morning & hope everyone is... - Behçet's UK

Behçet's UK
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Advice Please

Juliauk10
Juliauk10

Good Morning & hope everyone is well? Just wanted to ask if anyone knows of where I might find 'Official' info on having Behcets & Covid 19? I am looking for information of whether a person with Behcet's (No meds) is any more susceptible in contracting Covid 19 and the possible effects? Thanks very much.

21 Replies
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TonyWT
TonyWTAdministrator

Dear Julie,

The truth is there is insufficient evidence presently for anyone to know with any certainty “whether a person with Behçet’s is any more susceptible in contracting COVID-19 and the possible effects?” There are two separate issues in this phrase actually. Although lengthy, I hope what I say below will help allay some of your concerns, and indeed others. Please get back to me on Chat if you need.

Addressing first your comment ‘Official’ info. Behçet’s UK has posted consolidated guidance – see Pinned Post to the right of the screen - which references official statements made by the Government and various medical organisations/recognised ‘authorities’ (incl Behçet's experts) on Coronavirus (COVID-19).

The summary statement, and remarks in the two categories Vulnerable and Extremely Vulnerable have been specifically compiled with the assistance of the three Clinical Directors of the Behçet’s Syndrome Centres of Excellence in England; Liverpool, Birmingham and London. Those centres have sent a letter out to all the patients, for whom they are directly responsible, that they believe require specific Shielding. Whilst I (Behçet's UK) cannot offer medical advice from what you have stated, it would appear that you would most likely fall into the Vulnerable category.

For those with Behçet's that have not attended a Centre of Excellence they are advised, should they wish, to get in touch with whoever is the treating clinician, most responsible for coordinating their treatment; i.e. GP or specialist clinician. Either of those can, where necessary, recommend shielding, and will subsequently enter the individual onto a database that will eventually trigger a letter for additional assistance, if required. Those patients are also advised to register on the Gov.uk site (details within our guidance), though that is not compulsory.

As to the susceptibility of contracting COVID-19, our understanding is that everyone is equally susceptible – depends on the relationship each individual has experienced with an infected, or more than one, infected person, or something they may have touched/come into contact with. So we all need to do as advised; self-distance and pay particular attention to appropriate hygiene routines. Dr Bharat Pankhania (College of Medicine and Health Exeter University) stated on Point West, back in mid-March, “treat everyone that you come in contact with as contaminated”. I found that a helpful thought to hold in my head – but it doesn’t’ stop one being friendly, courteous etc (2 metres distance) as one human being should to another. I make a point of saying hello, or ‘good morning’ when I pass people on my daily walk, or at a distance to the staff in a supermarket to thank them, as I routinely do.

Evidence of the possible effects remains insufficient to know definitively, but it will be highly dependent on individual circumstances, particularly any extant co-morbidity; the widely-published and oft quoted “underlying health conditions” present in an individual. Pete11 already posted on this site 28 days ago that he survived the ordeal, and indeed has experienced quite severe Behçet’s symptoms over time, with accompanying underlying health conditions (i.e. organ-related).

In the meantime, as the Society cannot offer medical advice, we merely advise that individuals may wish to err on the side of caution, where ‘protective measures’ are concerned until more evidence is known, and treatment is perfected. We also advise individuals to try not to overly-worry about the situation. We are all worried to a degree, of course we are. I’m 70 and amongst other things have asthma – so I’m a bit dodgy I reckon! Importantly, it is well recognised that stress/worry aggravates and/or directly triggers Behçet’s Flares. So worrying about the situation isn’t going to stop the fact that if one unfortunately does come into ‘an adversarial situation’ (can’t think of the right expression, sorry) with an individual or contaminated surface one might succumb to COVID-19, but it will certainly aggravate ones Behçet's on a day to day basis if you do worry. That’s why we proudly use Naomi Hogan’s comment at the top of this site. Together, helping each other, and adopting a determined, positive approach will assist us to overcome our individual challenges, particular at this time.

As I said at the outset, I hope that helps a bit. Please get back if you need.

TonyT

Chair Behçet's UK

Juliauk10
Juliauk10
in reply to TonyWT

Hello

Thank you very much for taking the time to reply. Having been diagnosed for many years, I appreciate the harmful affects that stress & worry can have upon my health and so I am personally not overly concerned about the current situation for myself. The reason I wrote the earlier post was in attempt to educate myself. I moved to a very isolated area of Scotland several months ago and after many years married to a Military husband, I now find myself yet again with a GP who has very little knowledge about Behcets. Over the last 10-15 years, I have taken care of my own health in the main due to the limitations of finding specialised clinicians. This passed winter, I had significant issues in being able to get the flu jab at my 'new' surgery even though I have received this for possibly 20 years. Due to the remote location of our home, we only have one food delivery option. I have recently been told that the particular supermarket who delivers our grocery orders are planning to only deliver food to any customers who are either elderly or have been deemed as 'vulnerable'. I certainly don't want to be seen as special in anyway! however, if we are unable to obtain food from this supplier - our nearest shop is a 2.5 hour drive away. So I spoke to my GP yesterday to ask if there was any official Scottish Government guidelines regarding the 'vulnerable' category. My GP told me that having Behcets does not make a patient any more susceptible / at risk to Covid 19. In one way - I am quite happy to not be at any more risk than another person without Behcets but I can't help but wonder given that I was medically retired back in 2010 and have always been susceptible to infections of all kinds.

I have previously been assessed at the Birmingham CoE but I am no longer a patient of their facility. Subsequently, I thought it would be useful to attempt to find any relevant information to increase my own knowledge and possibly my GP should it be necessary. Hope all that makes sense?!?

Just on a positive note - I have always found it somewhat annoying that people in queues etc stand so close by coughing & spluttering - so I am hoping that once this awful time is over - people will be more aware of keeping their germs to themselves!!!!

TonyWT
TonyWTAdministrator
in reply to Juliauk10

Julie,

Totally understood. I'll have a think and get back to you. The trustees are frustrated regarding the situation in the Devolved Nations over a lack of informed professional knowledge and comprehensive provision for Behcet's patients, and we are making attempts to address the situation. A general lack of understanding/experience of Behcet's by clinicians across the UK does not help (neither, in some cases where individuals have an over-inflated view of their abilities, as well-qualified as they may be, and seem to think they know best). Behcet's is complex and needs a multi-disciplinary approach for optimal treatment hence the CoE, which I'm glad you managed to benefit from for at least a period. One individual can't possible know everything and it is ridiculous to think otherwise. None of us is infallible. From my understanding of the guidance, all people with Behcets are, as a minimum, in the Vulnerable category. The flue jab situation for you was just plane wrong and not in accordance with GMC principles. Be in touch.

Tony

Juliauk10
Juliauk10
in reply to TonyWT

You’re an absolute star thanks so much. Keep well 🤗

gillianTS
gillianTS
in reply to Juliauk10

Hi Juliauk10

What area are you located in?

I have received mixed advice from both GP and consultant. I also read the British Rheumatology Society and Behcet's information.

My GP was only interested in the fact I am taking immune suppressants and not the condition and advised to immediately go into shielding, the consultant was interested in both but her advice was to self isolate...

I was already in shielding and will remain this way until I personally want to, I feel very uncomfortable about venturing out anywhere and I am sure I like everyone else, even after the 12 week advice, will feel exactly the same.

I feel very very privileged to live remotely, I have plenty of my own space without meeting anyone else. I have worries about the rest of my family having only lost my dearly loved step dad 14 days ago to a suspected Covid 19 related issues in his care home in Gloucestershire.

The situation is so very serious but I worry what happens when the doors are all allowed to open, containment might slow down the virus it is not going to cure it or make it disappear.

Take care of yourselves.

Emma05
Emma05
in reply to gillianTS

I have received a letter last week advising me to shield even though not on any medication

Juliauk10
Juliauk10
in reply to Emma05

Hi Emma, do you have additional health conditions other than Behcet's that might have placed you in the shielding category?

gillianTS
gillianTS
in reply to Emma05

I eventually got a letter from the government stating I had to stay at home for 12 weeks. The difference with rheumatologist is amazing, mine too is a connective tissue diseases...

Thanks Emma

Juliauk10
Juliauk10
in reply to gillianTS

Thanks Gillian - interesting to hear that others are receiving conflicting advice/information - I appreciate Behcets is rare but it's been around for some time now so I would have hoped there would be more definitive advice out there. Really sorry to hear about your Step Father - such sad news :-(

Stay safe and thanks again for your input :-)

Emma05
Emma05
in reply to Juliauk10

No other health condition my letter just said as I had a connective tissue disease I was advised to shield it came from the rheumatology hospital

Juliauk10
Juliauk10
in reply to Emma05

Thanks Emma, much appreciated.

Emma05
Emma05
in reply to Juliauk10

If you look under bechets centre of excellence there is a Coronavirus page advising that all bechets patients are high risk

Juliauk10
Juliauk10
in reply to Emma05

Thanks so much.

Hi

Hope everyone keeping fit and well.

My experience so far, Uveitis being my major symptom.

The eye hospital treating my uveitis sent me an explanatory letter within which was a scoring matrix. On this I scored one as I was on a biologic medication.

The score of one advised me to maintain strict social distancing.

On speaking to a nurse at the eye hospital she advised that I was no more likely to contract Covid-19 than anyone else but if I did it would be worse.

The Behcets clinic sent me a letter, with a similar matrix, but on this I'm scored two, one for being on a biologic and one for having Behcets.

The score of two advised 'you may wish to self isolate but MUST maintain social distance.

As for effects, on Radio 4 sometime in the last couple of weeks it was reported, amongst other observations, that a doctor had observed, that is only observed and not under any clinical trial conditions, that patients being treated with a biologic, having contracted Covid-19, were significantly less likely to require hospital admission and were significantly less likely to succumb to the virus. They did quote percentages but I can't remember of find them.

The theory being that it was the patients own immune response that caused many of the covid-19 deaths, those on a biologic did not have the same level of immune response so were less likely to succumb.

Perhaps there is a bright side.

Juliauk10
Juliauk10
in reply to Dogwind

Thank you, much appreciated. Hope you are doing well :-)

Meggy7791
Meggy7791
in reply to Dogwind

I have just picked this feed up and was very interested in your comment referring to the Radio 4 programme where observations were made of patients on Biological drugs and Covid 19. I wondered if you could remember the actual programme as I would be interested to hear these comments.

I hope you are keeping well and thank you for your information as it paints a more positive picture!

Dogwind
Dogwind
in reply to Meggy7791

Hi Meggy

Sorry but not able to shed any light. I have racked my brains to try to remember when I heard it. One of the problems is that it was only mentioned as an aside by a guest, who of course I can't remember who they were, not as an item in its own right.

It would certainly be an interesting observation to follow up, it might give scientists an indication as to a direction for a possible cure.

Let's hope it is a bright side.

Take care and keep well.

Meggy7791
Meggy7791
in reply to Dogwind

Thanks so much for getting back. Let’s hope it proves a way forward. Keep safe.

Our daughter was tested positive for Coronavirus 6 weeks ago. Major headache like a migraine, terrible back ache, fatigue and upset tummy. I have had Behcet’s for 44 years and am on no medication. My symptoms were the same as our daughter, headache wasn’t as bad. But after about 4 days I developed a cough which she didn’t experience. Altogether I felt unwell for 2 weeks. Nothing major, probably wouldn’t have connected with the virus if daughter not been positive. Our doctor advised that if one person in the family had it most likely we all did. We did all the self isolating and have now tested negative. I was lucky, I worried so much about getting this which was not helpful to my condition. All the best.

Juliauk10
Juliauk10
in reply to 2106

Glad you’ve recovered well and hope your daughter is okay now 🤗

2106
2106
in reply to Juliauk10

Yes she is fine now. Thank you. Xx

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