Hi Everyone.
I posted a long while back, but I'm looking for some advice again & would really appreciate your input. I'm feeling a bit lost & don't know what to do. I'll try my best to share my story here.
I was diagnosed with Behçet’s in 2018, which took 5 years in itself. It started with my experiencing a persistent low grade fever, night sweats, then skin rashes & joint pains, stiffness & swelling, muscular twitches, and then eventually I developed mouth ulcers & abdominal symptoms (abdominal pains, bloating, vomiting & bloody diarrhoea, which became so severe, that I was opening my bowels in excess of 20 times a day).
By the time I was seen in the Behçet’s Clinic, I had already been seen by several different specialists, and eventually remained under Rheumatology & Gastroenterology. They had already started me on Azathioprine under the diagnosis of a systemic autoimmune inflammatory disorder, and it worked wonders for me - I was getting my life back!
Unfortunately however the Azathioprine then caused me to problems (initially to do my my liver function, and more recently to do with bone marrow changes). So my rheumatologists referred me to the Behçet’s centre to consider whether this could be the cause, and if so, whether I could be considered for biological therapies like infliximab.
When I first saw Professor Fortune at the London clinic, she was very reassuring. She told me that this was all likely down to Behçet’s disease, and would be happy to direct the management of my care. We had an indepth conversation about the bowel symptoms, as I had not been aware that this could even be a feature. This was really important to me, as it had been the most debilitating feature for me, and I felt releaved that we'd finally gotten to the bottom of it & that I would now get help. However, she did not change the azathioprine, and instead added in colchicine and oral steroids to my treatment regime. Unfortunately this wasn't good enough, as whenever I would reduce the steroids down, I would start experiencing frequent flares again. As a result I've continued to be on oral steroids at various doses since then, which hasn't been great. The azathioprine dose was also being constantly changed by the clinic (I was urged to increase the dose to establish symptom control, and then to reduce it again because of the subsequent abnormal blood test results), which also left my condition unstable.
My rheumatologists again reached out to the clinic to enquire about other treatments, like infliximab. But now we received correspondence from another doctor within the Behçet’s clinic to advise that actually I've not been formally diagnosed with Behçet’s, and actually it was simply being reviewed as a possibility. I was shocked & confused by this.
I spoke about it with the rheumatologists and then with Professor Fortune at my next visit. She reassured me again that I do have Behçet’s, and that I was on the right treatment. She told me that biological therapies like infliximab could be considered as a next step, but that she had wanted more tests to he done, and wanted to speak to different specialists first (which included gastroenterology, a liver specialist, haematology) before we moved forward. However, none of this actually ever happened. Instead I was again going around in circles with my azathioprine and steroids. And now conversations were occurring about how the disease would just burn itself out by the time I hit menopause anyway, so I should not be worried about good control as it will probably resolve in the next 10-15 years, and that I should accept this long term disability, which I found really upsetting.
I then experienced an ulcer in the vulval region for the first time, and since developed pains within the vagina with each flare. I was treated with topical steroids by my GP, and I contacted the Behçet’s clinic. I spoke to another doctor in the Behçet’s clinic, who advised me that if the ulcer was not within the vagina, there was no way it could be related to the Behçet’s, even though there was no other explanation, suggesting that perhaps it was hormonal. She asked me to get reviewed by gynaecology instead to find out the cause & management. My GP did refer me on, and the gynaecology consultant saw me quickly, and concluded that there was no other cause, and mostly likely being the Behçet’s (stating this was considered genital ulcers and vasculitis from the appearance). Despite this specialist opinion, the Behçet’s clinic did not agree.
I reached out to the clinic & ended up speaking with yet another doctor over the phone. She told me that following discussions with Professor Fortune, that they felt biological therapies would be no good, as they don't work for the bowel symptoms, they still don't feel the genital symptoms could be related to the Behçet’s and only require topical steroid use when they occur anyway, and that the use of biological therapies would only be as a last resort, and I am considered to be too young for this treatment anyway. I told her I didn't agree & couldn't understand this reasoning (especially as it's used for inflammatory bowel conditions, it appears to be the next step on the treatment ladder, and I know of lots of people on this treatment who are younger than me), but she told me there was nothing else she could do at this time. We also discussed whether a different DMARD would be helpful instead, and I was told that there is no other agent that could be recommended in Behçet’s, and that azathioprine is the only one, as per advise from Professor Fortune.
I then received a letter regarding this consultation, which basically said that the bowel symptoms are also unlikely to be related to the Behçet’s disease, and are probably being caused by stress. I was shocked & upset by this statement. But I knew I'd made the mistake of explaining how stressful I was finding the way I was being managed, and had brought up the problems I was facing at work and home as a consequence of not managing my health - to put this in context, I was a junior doctor, facing dismissal if I took of any more sick leave, so of course I was now stressed! I received another phone call advising me to further lower my azathioprine dose, now because of the possible effects it was having on my bone marrow.
I discussed all of this with my rheumatologists and we liaised with haematology (which I was under to manage my anaemia). We all agreed to keep me on a stable dose of azathioprine and high dose of steroids while my symptoms settled, and then I could slowly wean myself off of the steroids. I was now having regular blood tests and bone marrow biopsies to monitor the situation. This stable dose helped tremendously with all my symptoms, including my bowel symptoms (I was having no more bloody diarrhoea, although I continued to have bloating and vomiting, and was now was struggling to open my bowels at all!) It was not perfect, but it was manageable now, and I even completed my junior doctor training.
Then in September 2022 I got covid, and 4 more times since. I've been left with lots of new & persistent symptoms, and have finally been diagnosed with long covid, and severe post covid syndrome. I'm still undergoing assessments by the post covid clinic, and cardiology, who are looking into some of the chest symptoms. I've not been able to work, leave the house or basically have a life for this past year. And I've found the tiredness and cognitive problems especially difficult to deal with.
Earlier this year (after covid infection number 4) I started to notice that I was getting more flares again, and with them I had started to experience severe abdominal pains with sudden onset of bloody, watery diarrhoea again, which my gastroenterologist wants to further investigate again. It's not clear if this is related to covid infections, or because my steroids are lower now (I went from 20mg to 9mg from August 2022, to April 2023).
During this time, I was not reviewed by the Behçet’s clinic at all. I had had to cancel my follow up when I had one of my covid infections and the next available appointment would be over a year away. I requested a telephone appointment instead or to be contacted with any cancellations sooner, but none of this was possible.
So now here we are, over a year later. But before my appointment date, I made sure to share my progress with Behçet’s clinic, by emailing my clinic letters & investigation results, including correspondence from haematology, which informed about my bone marrow biopsies, and included discussions about further management with azathioprine: They enquired whether a different treatment could be considered, as there had been some minor changes in the bone marrow. They explained that this was not a dose dependent effect, and not urgent, and so while I continued to be treated with azathioprine, annual bone marrow biopsies would be recommended. And when I attended the clinic, I'd had my most recent bone marrow biopsy a week prior, results pending.
When I've attended after a year to see Professor Fortune, she was completely unaware of what had gone on following my previous visit. She hadn't seen any of the correspondence or results I'd sent on to the clinic. I tried to fill her in best I could, but this was difficult for me, given my current post covid symptoms. I handed over my copies of the haematology letters, which she glanced at, but didn't read them. I explained the results of my latest biopsy were not yet available.
Professor Fortune seemed keen to hear all about my problems with covid, but less interested in my 'Behçet’s' symptoms, and interrupted to inform me that my "bowel symptoms aren't going to be related to Behçet’s" so I just shut down in the end. She appeared unhappy that I'd continued to remain on azathioprine at the dose I was on, considering my last blood test results in the clinic, and asked me when my last blood tests were done. When I informed that they were 2 weeks ago, she didn't want to know the results, and instead told me to get more blood tests done today (didn't say what this would include). She told me to come off the azathioprine treatment completely, and that I should instead start treatment on mycophenolate (another DMARD), saying that it will eventually be exactly the same as azathioprine but without the side effects & risks.
As I came away from the clinic, I wondered why this treatment was not offered before if it was an option. I felt uncertain about whether any of this was right for me. In fact, I just realised that I had lost all trust in the Behcet's Clinic now. I started to wonder whether I even have Behçet’s at all, given that they feel most of my symptoms are not Behçet’s related, despite what Professor Fortune had said to begin with when I first met her in 2018.
I reflected on what both rheumatology & haematology had told me: there is no rush to change my treatment at this stage. Whereas Professor Fortune urged me that this is an unacceptable situation to be in and so must be rectified immediately.
Basically I'm saddened by the realisation that I dont trust the superspecialists, and confused about what to do next. But I genuinely don't feel like they have my interests as their focus, and if it were down to them, I would still be continuing on a low & inadequate dose of azathioprine, and on their recommendation I would have quit my 'stressful' job, and accepted this as the limits of my disability, rather than qualifying in my speciality as a doctor. Although right now covid has struck me down, I do still have hope of returning to having a life again. But inside I am concerned that this clinic is not really supportive of that.
So any thoughts on what should do next? Does anyone else have any experience with mycophenolate here? How was it for you? Should I seek a second opinion? How would I even go about doing that? Should I speak to my rheumatologists again first? And has anyone else had a better experience of this clinic - I mean, is it really just me?
I do have to say that I'm no stranger to medics minimising my problems, telling me that it's all down to stress, or being overweight, for example. I've suffered with Raynauds since childhood, and was told it was normal, and only when I became a doctor myself did I learn that it is not. When I started my periods in my early teens, I was bleeding non-stop for months at a time, and I was told I was probably exaggerating, until I began collapsing from severe iron deficiency anaemia due to the blood loss. I also suddenly gained a tonne of weight, and was labelled as 'lazy' amd 'greedy' but eventually when I turned 16 test results revealed I had PCOS, which completely resolved (including loss of weight) when I went on the pill. In the meantime I started having problems with joint pains, swelling and aching, and was told this was all down to weight bearing & hypermobility. I suddenly had migraine type of headaches in my 20s, and was told it must be stress. I just managed it all myself in the end. And this is on a background of having a childhood of neglect, emotional abuse & living in a physically violent household. Inwas barely even allowed to attend school on a regular basis growing up. And yes, I developed anxiety & depression, low self esteem & self worth as a result. But I know what that feels like. I've been there. I've had to fight for everything I have in this world, and work extra hard to prove myself worthy. I've found my own solutions, and done my own research when needed. And when I became a doctor I knew that I never wanted to be like the doctors I had had to deal with - judgemental, and making inappropriate assumptions about the patient. I wanted to actually listening to & believe my patients. I wanted to see the signs of someone struggling, and be there for them. Help them find their solutions. My patients and colleagues notice this, and urge me to continue the way I practice. But right now I'm struggling. I can't depend on myself to get myself through this the way I used to.
So, thank you so much for taking the time to read this, and genuinely any advice here will be so very much appreciated.
Edit: just adding some notes here about the diarrhoea, as I forgot that I had lots of questions about this last time too. I started having bouts of diarrhoea in 2015 - like episodes of gastroenteritis, that lasted for a few weeks at a time. Then I realised it was occurring very soon after I was coming up with my skin rashes, joint pains /swellings and mouth ulcers. My inflammatory markers were also raised with it, and I was often having lots of fresh blood. It was at the point I was referred to gastroenterology for suspected inflammatory bowel disease. Many investigations later, we found several deficiencies, malabsorption of the bowel, but that was about it. Then I attempted all the fodmap exclusion diets, I tried cutting out diary, I excluded gluten, was treated with B1w injections, I changed my work pattern and moved back home all to reduce my workload and stress. It all just continued to get worse, and worse. It went from bouts of flare ups to constant. I was miserable & exhausted. And then I went long term sick off work. Eventually after about 1.5 yrs I went back to just eating what I wanted. Only taking occasional supplements of vit D & C really. I was started on azathioprine, which didn't do anything to begin with. But I was quite fat now (this happened as soon as I started working shift work at med school actually), so my specialists agreed to increase my azathioprine dose to 150mg. And woe, it was like a magic pill. Suddenly all was better. I couldn't believe it. I was happy. I could leave the house. I requested to transfer back to work closer to my parent's home, and I was back to hoeing me. I was still getting some flare ups, but it was no way near as bad as before when it happened, only lasting a few days at a time.
After all the yoyo changes of azathioprine doses, I remained steady on 4 days at 100mg & 3 days at 75mg per week (boosted by allopurinol) and then I didn't have any diarrhoea from Dec 2020 until I had my 2nd covid infection. Then my 3rd covid infection. And again at my 4th. But after that, I started to experience bouts of it again, and like before it's occuring soon after develpoing my rash, joint pains, and mouth ulcers. I mean, it might not be a part of the flares, it could be the stress of the flares, but that's the way it happens every time. And the flares often occur when I'm developing a mild infection, or sometimes I just have no idea.
Ulceration in pregnancy
Vasculitis in my Spine \"Central nervous system Vasculitis\"
How long do people’s flares last
Did anyone get thrush prior to Behçet’s diagnosis?
behcets, mouth ulcers and gum disease
