Suffering with Covid although being double vaccinated.

[Winifred102]

Hi, thought I’d let you know that unfortunately I’ve been very unwell and recovering from testing positive for covid. I have had both jabs, January then March. As a family we have been very cautious since the start. I actually went away to a hotel the other week and to a restaurant first time in 17 months, this could be how I contracted it but I can’t say for sure. Please be extra careful all, this Delta variant isn’t nice 😢

[magician]

Hello Winifred!

So sorry to hear of your predicament. I hope that the claims about Covid being mild for the vaccinated holds true for you! Best wishes for your recovery. Get well soon!

And many thanks for the alert. Yesterday and this morning I have been chiding myself for being too cautious. 2 very good friends of myself and my husband have each invited us to separate dinner parties at their residences but we declined both. I just cannot yet see how I can enjoy any meal outside of the safety of home.

Take care!

[magician in reply to magician]

Hello!

Venting this time: We received and turned down yet another invitation to dinner. What really strikes me is that in all these invitations, no one has asked if we have been vaccinated, nor indicated any semblance of safety measures they are taking for themselves and their guests. It looks like the world suddenly returned to pre-Covid!

Jokingly, I told my husband that I would pay for an advertisement to remind that Covid is still here!

😷

[Mrs-Champers]

Hello Winifred, thank you for taking the time to share this when you must be feeling so rough, and really wishing you all the best for your recovery. We’ve been so careful throughout as I’ve been in and out of hospital for operations, and we’re petrified about the lifting of all restrictions. I’ve been worried I’m being too over cautious so this is a helpful timely reminder we’ve all got to keep being so much on our guard.

[Zuzu798]

Hi Winifred

Terribly sorry you still contracted Covid, how are you holding up? Please look after yourself and prayers for a speedy recovery

[Lovingdragonflies]

I’m so sorry. We were just talking about this same thing. I was getting my Remicade and the nurse asked the lady next to me if we had any COVID symptoms or had COVID, and she said no I’ve had my vaccine. So many of our friends just don’t get it that the vaccine keeps you out of the hospital, it doesn’t keep you from getting COVID. Im so very sorry you have gotten it and I’m very glad it’s not worse for you. I have some additional blood clotting issues that specialists at the university say it it’s just really a good idea I don’t get it. I don’t eat at restaurants. I only go to the nursery to get plants. We do get takeout!! Im not giving up pizza and tacos. Hang in there and know we care!

[Icefire]

Hi Winifred, I hope you are feeling better soon. I just wondered if you are taking medications and if these may affect the effectiveness of the vaccine? Probably a question that can't be answered without some scientific research, just my inquisitive mind.

We are also just about to venture out to a hotel after a cautious year 18 months!

Best wishes, I hope you feel better soon.

[gillianTS in reply to Icefire]

Interesting question Icefire, when I had my 2nd vaccination the nurse told me I would still need to be extra careful because I would not get the same cover as those not on immune suppressants, it was an interesting comment and one I had already thought about and read about, but how many others have been warned in the same way...

[Pixie013]

Hello.

I'm so sorry you are suffering with COVIDand wish you a speedy recovery.

Like others in our Behcet's family, I am concerned about transmission of the COVID variants. Apart from swimming in a private lane at the pool and getting groceries. I stick close to home.

Until my health authority authorizes the title tests and booster shots for tge immunosuppressed, I don't feel safe.

I am authorized to work from home until January 2022--and if we experience a lengthy 4th wave, I expect to request a medical accommodation--where I live, all restrictions will be lifted August 16 (and people with COVID will no longer get be prevented Ted from attending the workplace. Quite scarey.

These are challenging times, aren't they?

[deus777]

Pretty sure I had covid last year, some mild diahorea for a couple of days then occasional shortness of breath. Lost sense of taste. No fever. Lasted about 3 weeks and that was it. Not flu like at all, really quite mild. It's a modified cold virus. Wife had no symptoms, more than half who get it have no obvious symptoms.

I was worried it would cause a behcet flare up, but nothing.

I wouldn't panic, unless you are immune-compromised or have some morbidities, fairly obese or over 80, you're almost certain to get through it.

[Mrs-Champers in reply to deus777]

I agree that how people may experience Covid if they get it will differ, however I don’t agree with your comment that most people are almost certain to get through it - that may be the case for very healthy adults who are double-vaccinated, but even very healthy adults who are double-vaccinated are dying from this disease. I understand that the risk for people with Behcet’s of being very ill if they catch Covid is high, whether or not they are on immunosuppressants. I hear this from my GP and rheumatologist. If anyone’s instinct is to continue to be cautious I wouldn’t discourage that at all.

[deus777 in reply to Mrs-Champers]

People are surely mature and informed enough to determine if they are immune compromised or not.

[Winifred102]

Hi, thank you for your well wishes. I’m still not 100%, feel exhausted and have to cough often to help me breath easier. I am immunosuppressed and have been informed that they are finding some people with Behcets don’t seem to be holding the antibodies for the virus or vaccine for as long. I was asked to give a blood sample for research that the clinic in London are conducting, so it’ll be interesting to find out what the results show.

[swanseakev in reply to Winifred102]

Hi Winifred102,

First off, wishing you a very speedy recovery from your Covid

Like you I'm immunosuppressed, taking Methotrexate injections and Infliximab infusions

I've been giving a Blood sample every six weeks , before my Infliximab infusion for the last 32 weeks as part of the Clarity study into Covid and the Immunosuppressed......they recently said I have made Antibodies but did not say to what degree, i think we will definitely be in this Booster group they are talking about in September to try and get our immunity levels up....fingers crossed

Stay safe

Kev

[Hidden in reply to Winifred102]

So sorry you are suffering with Covid. Praying you start healing and symptoms dissipate sooner than later. Do you mind me asking if you're on Hydroxychloroquine as one of your meds for Behcets?

[Winifred102 in reply to Hidden]

Hi, no I’ve never taken that, a family member does and has for the past 15 years for R.A and hasn’t tested positive for covid whilst living with people that did.

[Hidden in reply to Winifred102]

That is very interesting! Thank you so much for replying quickly! Your honest answer and information is very appreciated. The reason I asked is because I've been on Hydroxychloroquine for about 13 years for Behcets and the rheumatic symptoms. I haven't gotten covid yet, and I say that with great caution and gratitude. I could get it tomorrow and I know that. I deeply feel for and pray for anyone who has Covid or has had it and is suffering from its damage.

I haven't gotten any Covid vaccines yet, because in the past when I got the MMR shot required by public universities, the shot immediately caused me to have meningitis twice and Behcets really reared its ugly head and took over. So I am very cautious when it comes to vaccines for my own reasons, experiences, and concerns. I'm not anti vaccine at all.

Hydroxychloroquine has been used for decades as a very safe and very cheap treatment and preventative in countries such as Africa for malaria. They take it on a weekly basis. It has been a Godsend for countries plagued with malaria. It has never been called or deemed dangerous or unsafe in any manner until Covid 19 appeared in the USA.

Once Hydroxychloroquine was starting to be used by researchers and medical doctors to treat Covid-19 and it actually saved the lives of patients and helped people recover much more quickly, it was suddenly demonized by the CDC, FDA, and Health Dept as well as the liberal political party in the USA and big pharma.

The reason I'm discussing this is because if Hydroxychloroquine is now so "dangerous" and causes "horrible side effects involving the heart", then why haven't the drs with Behcets patients and other autoimmune patients taken us off that particular medicine? How can it only be safe to prevent and treat certain symptoms and illnesses, but it's "very dangerous and unreliable" if used to prevent and treat Covid? I'm baffled by this reasoning. It's either a safe medicine or it's not safe...period. No matter what it's used for as a treatment.

I've been pondering over the obvious contradiction of information and how Hydroxychloroquine went from being the quiet, safe, cheap long-term treatment and preventative to suddenly an evil, dangerous medicine with supposed horrible side effects...but only being deemed "unsafe and unreliable" when it's used as a treatment and preventative for Covid-19 and its variants. And yet, many patients such as myself, and people all over the world are still being given Hydroxychloroquine as part of their treatment plan and as preventative. Is it just me, or does anyone else question the obvious, conflicting information being manipulated and told to the world?

There had been medical researchers who were following data about people already on Hydroxychloroquine for autoimmune and rheumatic diseases and how that population had a much lower percentage of getting covid. Then after hydroxychloroquine was demonized, that sort of research stopped. Honest data that has anything to do with alternative treatments that are safe and cheap regarding Covid-19 are heavily censored and removed on most media platforms in the USA. Why is this happening? Wouldn't it be truly amazing to already have an FDA approved cheap and safe medicine in place that is proven to treat a pandemic like Covid-19? And doctors were given the discretion to treat their patients with that medicine without being punished or being threatened by the government agencies of losing their medical license?

So as a person who has had Behcets symptoms since childhood and has lived with its unpredictable and insidious presence for almost 5 decades, I am so grateful for the medicines that are safe and work and don't cause bad side effects and don't cost a ridiculous amount. Because I've been on enough expensive meds that have caused horrible side effects and caused me to have melanoma. I'm thankful for Hydroxychloroquine. It's been a Godsend for many people all over the world for various treatments and as a preventative. It's very tragic that the powers at be and big pharma in my country and other countries collectively dictate what is an acceptable treatment and preventative for Covid-19.

Sorry for my lengthy reply, but we as Behcets patients are at the mercy of our doctors and big pharma. I find it concerning and sad that if a cheap and safe medicine shows any positive outcome during a pandemic, then why isn't it being used and preferred over rushed experimental vaccines that don't prevent the cause of the pandemic?

Keeping you in many prayers for a smooth and quick healing and recovery from Covid. I'm so sorry you're suffering with it in addition to dealing with Behcets. May God carry you safely through this storm and may you feel the comfort of many prayers being offered up for you.