Dismayed and Confused: Note I posted this on... - Behçet's UK

Behçet's UK

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Dismayed and Confused

Stm252 profile image

Note I posted this on Lupus UK as well, as I am looking for support from both sides of the coin. Bechets UK has been my main stomping ground for some time, since I thought this was my diagnosis for about a year now! However...today my new rheumatologist told she she is in disagreement with the diagnosis. Here is what I posted on Lupus UK. Any and all thoughts welcomed!

Hi Folks. I need some advise. I am very anxious and feeling bummed. About 1.5 years ago I fell ill (about 1 year after the delivery of my first born). The whole host of sxs (e.g., joint pain, muscle cramping and pain and locking, fatigue, significant weight loss, hair loss, diarrhea, conjunctivitis, vaginal ulcers, headaches). Over time, I have become sensitive to the sun, I now have spinal pain and I cant use my hip. Various rheumatologoists have said lupus, lupus-rheumatoid, autoinflammatory disease, Behcets, and "you have a rare disease." Today I switched rheumatologists and she debunked what I have been treated for, for the past 1.5 years which was autoinflammatory disease with Bechets features (flat out debunked it). And said I have "features of connective disease and inflammatory arthritis). I have never had positive blood work which makes this more complicated. She is starting all the blood work over again and basically said she isn't sure where to go with this. I am on some heavy duty meds as well, and recently titrated off prednisone after 1.5 years. I just don't know what to think now and where to go. Anyone have this experience. I feel like I am on a rollercoaster that never ends. Thanks for any advice.

44 Replies

Sorry to hear this x

Rheumatologists are more likely to interpret it as a Lupus like Syndrome but I seem to recall you are negative for the markers? In addition, vaginal ulcers do not feature in Lupus.

If she is going to treat you with the same drugs that are used for BD then the label is of less importance. However, if like in the UK you are denied appropriate treatment without the correct label then you must seek a better fit for your symptoms.

Stm252 profile image
Stm252 in reply to cpops

Yes her first question was.."they really ruled out lupus?" She seemed surprised. She basically felt that most Behcets have way more ulcers than I have ever had and start showing sxs around 13. Yes I have basically negative markers.

cpops profile image
cpops in reply to Stm252

She doesn’t sound like she knows very much about it. A patient on this forum recommended a book on BD and it is available from Amazon. It may help you understand it more and hopefully point you in the right direction?

Stm252 profile image
Stm252 in reply to cpops

Oh and she also said med wise she doesn't even know yet bc she doesn't know what shes treating. She kept me on the BD meds right now till she sees me again in 6 weeks.

cpops profile image
cpops in reply to Stm252

Oh no! The problem is that it is only ever one person’s opinion. You can sit in front of someone else today and get a totally different view. It also depends where her interest and personal expertise lie. Ask her how many patients with BD she has treated? It may well be a round number!

Stm252 profile image
Stm252 in reply to cpops

Shes actually a vasculitis specialist so she seems to know the disease.?!?

cpops profile image
cpops in reply to Stm252

At least she is willing to treat you. Do you have Infliximab in the States? This is a newer drug which is having good results in inflammatory conditions. It was originally a cancer drug but was found to be more effective in inflammatory conditions.

It is used in a variety of conditions including Lupus and BD. It is something you may want to discuss with her?

Stm252 profile image
Stm252 in reply to cpops

She didnt for sure say she is willing to treat me ;( I kept asking and she was avoidant. I have a follow up and I am hoping she is willing. Bc at the very best she was honest, authentic and thoughtful in her steps. And i appreciated that.

cpops profile image
cpops in reply to Stm252

Sounds like you have some faith in her which is important.

As you can see I don’t skeep😊

Sorry that you are on the roller coaster. I too was on, but not very long.

I have had all sorts of issues since childhood, but were never too serious and not clearly indicative of a particular disease. In 2007, I had uveitis, during which my left eye was almost blind. The gravity of the situation prompted several serious medical tests. The diagnosis was between connective disease and probable Behcets. The doctors opted to treat it as Behcet and somehow along the way the possibility of connective disease seems to have been dropped. The immunologist consistently treated it as behcet while bearing « probable » in mind.

The approach taken by my medical team did not really bother me, because the medical treatment would have been the same ( that’s how I understood it) and the treatments did relieve my most severe symptoms over time. I still have eye issues, fatigue, joint pains, muscle pains and lesions - but at more tolerable levels than previously.

Your situation must be frustrating, but perhaps there is a silver lining - the new round of blood tests just might give you a more definite diagnosis and appropriate treatment.

Best

Stm252 profile image
Stm252 in reply to magician

I would LOVE if the bloodwork actually for once showed something. I think it may give a clearer direction diagnosis wise and also maybe better medication options for me. Frankly I am not as much mired in the diagnosis loop except (big except) when my new doctor is concerned how and what to treat me with. I think that's the concern. My old rheum was on a clear path and she basically threw it to the wind.

Hi

I have been told I had possible behcets since 2015 and received treatment as such. I have the BL52 antibody or whatever it is and have positive pathergy tests but on my last visit to my rheumatologist who is a behcets specialist and as I am currently experiencing a relatively calm period due to medication she decided that she now doesn't think it's Behcets but a combination of other issues and discharged me with no further information of where to go or what to do. I am now back to square one after 4 years of being told it was more than likely behcets by the same doctor. I am seeing my GP next week to see what my options for treatment are now. I fully sympathise with your situation. Good luck in getting some answers x

Stm252 profile image
Stm252 in reply to cherie1w74

Wow. That feels so cruel. I am so sorry. I d9nt understand how a doctor terminates a patient and then doesn't even transfer them to someone else. What was the basis for literally an out of the blue firing? That's awful. I am so so sorry. I feel you.

cherie1w74 profile image
cherie1w74 in reply to Stm252

Thank you. I wish it was the doctors who were sorry but it appears all we are to them is a pay-cheque. She appeared to be discharging as many patients as possible that day. The only rationale I can think of is that her caseload was too large. All she said was that I needed to go back to my GP and ask him to make various referrals to different clinics to manage each of my symptoms as they arise. All my symptoms are inflammatory conditions and all caused by my my immune system. They all appear to be vascular too. I so hope your specialist continues to see you and that you receive the correct treatment. It's enough that we have to cope with this damned disease on a day to day basis without so called specialists causing upset and further suffering. Keep me posted on how you get on x

cpops profile image
cpops in reply to cherie1w74

Hi, was that at a Behcet’s Centre by any chance?

cherie1w74 profile image
cherie1w74 in reply to cpops

No it was at Leeds - chapel allerton as they run a specialist behcets clinic. The professor there has lead several studies on the disease. I am luckily under the Liverpool centre of excellence but now keep rebooking my appointments until I have presentable symptoms in the fear that they'll discharge me too as I have only seen the professor there once and he said he didn't think I had behcets as I had no symptoms when I saw him either. He offered me a follow up appointment though to see if my symptoms reappeared. It was after this that he sent a report to my GP copying in Leeds that the Leeds professor changed her mind.

cpops profile image
cpops in reply to cherie1w74

As it is a relapsing and remitting condition it seems bizarre that they treat patients like this. I have heard of so many patients having their diagnosis removed in similar circumstances.

cherie1w74 profile image
cherie1w74 in reply to cpops

I agree

Stm252 profile image
Stm252 in reply to cherie1w74

It's so hard for me to understand the scenario you are in. Sending you back to your GP makes absolutely no sense to me. I hope they get you back to someone proper to manage your care.

cherie1w74 profile image
cherie1w74 in reply to Stm252

Me too. Thank you.

Hi Stm252

I’ve just read back on all your posts on here and it turns out I’ve replied on some of your other threads too as we seem to have had very similar symptoms and experience!!

I recently had a similar experience- Rheumatology had referred me to Gynae to assess genital ulcers. At the first appointment there was no active ulcers so I showed photos to the doctors who agreed that they looked suggestive of possible Behçets diagnosis but a biopsy would be only way to confirm.

I then rang the clinic when I had an ulcer however by the time they fitted me in it was completely gone. Incidentally when I attended this appointment I shaved down below as I knew I was going to be assessed - I haven’t shaved my bikini area for 10 yrs as I had laser hair removal so only trim remaining hair - sorry if tmi!! 😂 (I ended up being assessed by 2 doctors, a medical student and nurse). As I mention the ulcer - which is ALWAYS in my inner labia was completely gone but I had photos again. This time my Gynae doctor just shut me down completely in front of the others and said not Behçets - just an ingrown hair!! I was so shocked - I said ‘what?? an ingrown hair approximately every 3 months for the past 8 yrs??’

I left the appointment feeling utterly distraught.. I’d spent the past year trying to work out what the hell was happening and given a presumed diagnosis of Behçets and started on the drug pathway.. been on various doses of steroids for over a year, on Colchicine then told to stop to try and allow an ulcer to develop for biopsy, then on to Azathioprine which made me really ill and now eventually I’m on week 6 of Cellcept (MMF).

I left that Gynae appointment and completely threw my head up.. I thought what’s the point of me taking all these strong medications if I don’t have Behçets- it’s only an ingrown hair!! 🙄 At this point I hadn’t commenced Cellcept so was only on prednisolone and anti inflammatory pain relief. So I decided to cut down and stop my prednisolone myself!!!! I pushed through until I got to 2.5mg and my joints were really painful and my fatigue increased significantly- I was still mobile but had no quality of life. I went to my GP and explained about being shutdown by Gynae and stopping my meds. She completely understood my frustration. She showed me the letter saying presumed ingrown hair due to ‘waxing or shaving’ and we discussed that I hadn’t shaved for 8yrs until that very appointment day - plus I did not shave my inner labia!!!! 🙄

She told me that even if it does not turn out to be Behçets I most definitely do have a ‘steroid responsive connective tissue disease’ and that the same drugs will be used to treat my symptoms.

I left feeling a little better but it still definitely helps when you can put a distinct label on your condition rather than be in that process of elimination of other conditions.

Turns out my next genital ulcer appeared just a month later.. I rang Gynae to be fitted in for biopsy and guess what.. the clinic was overbooked so they couldn’t see me!! The frustration was immense - I went to A&E - they couldn’t do the biopsy in an acute setting and they sent a junior Gynae doctor down from the ward - he didn’t even assess me!! In the end the A&E doctor assessed my ulcer and her opinion was ‘definitely not an ingrown hair’!

So yesterday they eventually fitted me in for biopsy. Coincidentally I saw the Consultant Gynaecologist- he started to read the last letter re ingrown hair and I immediately told him my opinion on it. I explained I have photos of all my ulcers for the past year as well as all other symptoms oral ulcer, Erythema Nodosum rash, foliculitis spots - then he sat up and took some notice! He asked why I hadn’t had a biopsy sooner and I said cos you couldn’t fit me in on time!!!! I got my biopsy on day 13 of my ulcer, so here’s hoping the result proves inflammation is present and I can eventually get a referral to a Centre of Excellence in the UK - who will just start their own assessment from scratch!

It is an arduous journey but the ve learned that something is definitely going on here and steroids at the moment are the only drug keeping me functioning and somewhat pain free!! X

Emily-123 profile image
Emily-123 in reply to GlastoGal

Biopsy’s really aren’t an accurate way to diagnose Behçet’s . It’ll usually only show non specific inflammation. If biopsies were that’s important, they would become a routine procedure in the diagnosis of Behçet’s. Difficult pathology is one of the ‘hard to diagnose’ parts of Behçet’s.

I was booked in for an oral biopsy at the Royal London. By the time they could fit me in the ulcers had almost gone. They went ahead and just biopsied a bit of my cheek anyway where an ulcer had healed. It shows ‘non- specific chronic inflammation’ and some other medical terminology. Went back to the Behçet’s centre the following week and received a diagnosis of Behçet’s,, before the result of the biopsy even came in. Doctor didn’t think the result would change anything anyway. Although, it can diagnose other similar conditions

GlastoGal profile image
GlastoGal in reply to Emily-123

I think the point is more to rule out HSV etc - can only go by my consultants in Rheumatology and Gynaecology who have been adamant that a biopsy is required!

cpops profile image
cpops in reply to GlastoGal

I’d like to say your experience is isolated but sadly it is par for the course when you are in this position.

Stm252 profile image
Stm252 in reply to GlastoGal

Wow. All I can say is wow. Oh and maybe ludicrous. Its ridiculous when the medical field tries to almost gaslight us about our disease state. Ingrown hair? C'mon now. I think as grown women we would know the difference at this point in our lives.

Just like you I am completely steroid responsive. It took me so so long to finally get off (almost two years). And now that I am, even more symptoms are showing up! But alas, my bloodwork continues to show NOTHING. Which is infuriating bc as you know and outlined in your posting, it's hard to "prove" things. I'm so sorry you have been put through the ringer. Thet being said, I am also hopeful you will finally get an answer.

GlastoGal profile image
GlastoGal in reply to Stm252

Gaslighting- is the perfect description!!

I’ll be following your journey Stm252 and I hope we both get answers and the appropriate treatment!

Stm252 profile image
Stm252 in reply to GlastoGal

Likewise!

Really can understand why you are so upset, Not sure what it is with doctors and Behcets

but when you go and see a new one its almost like a challenge to "undiagnose" behcets.

facing the same issues myself, and decided to get in touch with the original team some no retired.

HLA-B27 and HLA B15 came back positive as did the skin prick test,. there've seen enough Genital ulceracation, But still you get "could that be an STI"... Or HIV.

had a good chat with my GP about all this late last week and he's of the opinion once the diagnosis is confirmed as much as it can for Behcets its simply isnt acceptable for another doctor then to try messing with it. They dont do it with other health conditions so why is it okay for Behcets?

IMHO its something that needs to be addressed at a national level because this type

of stress is something none of us need.

Stm252 profile image
Stm252 in reply to thomas003

Good points. Wonder why this is such a contentious, or so it seems issue.

thomas003 profile image
thomas003 in reply to Stm252

Just hope things work out for you. forgot to mention in the previous post

the bloods are really weird the normal ones we get. immunoglobulin levels are always

low but the other markers only spike when i'm in real trouble, yet the ulcers are out in full force. I do think something needs to be done in regards to just how shaky the diagnosis seems to be for many of us. doctors retire, people have to move and for me

it just feels if you leave the hospital/team that diagnosed you no matter what the medical evidence to support how they reached that diagnosis it counts for very little

Stm252 profile image
Stm252 in reply to thomas003

Thank you. I just hope my new rheum figures me out. Especially since my bloods are normal. And always have been. I am going to keep the faith. Something has to give.

Actually Lupus can show with vaginal ulcers and unfortunately any of the autoimmune diseases can be up and down with testing. There’s info about lupus vaginal ulcers on the lupus foundation website. I researched it when I was still undiagnosed. They are notorious for inconsistencies. But a Behcet’s diagnosis will come with the hallmarks of mouth ulcers in so many months, genital ulcers, uveitis, skin issues, and or joint pain. They need three of those. And they always need mouth ulcers as one. This is what I was told. It’s so very frustrating when doctors start changing your diagnosis. I had a professor who teaches about Behçet’s diagnose me then my hometown rheumatologist questioned it. That didn’t make me happy! I hope you get some answers soon!

Thank you!

your CRP and sed rate are always low? Were these always tested while you were on prednisone?

also was crohns ruled out

Stm252 profile image
Stm252 in reply to rooser1

Yes always low both before and during the prednisone. It's been the most bizarre thing. Mo one can explain it. Even though I have had pericarditis. Pleurisy. Joints locking etc. The new rheum said that there are some people (albeit rare) that never show anything in the bloodwork.

Stm252 profile image
Stm252 in reply to rooser1

Yes crohn's ruled out. They considered that with all the weight loss (3p pounds) and diarrhea. Sometimes 15 to 20 a day.

rooser1 profile image
rooser1 in reply to Stm252

what about food intolerances? major enzyme groups? Fructase, maltase, lactase, sucrase.

Im deficient myself. i thought I was poisoned every meal.

Years of inflammation because of it. Thrush too.

Stm252 profile image
Stm252 in reply to rooser1

I basically cut out all sugar, nightshades dairy etc. I notice when I eat that I get quite sick. I have never quantitatively tested it. I used to be able to eat anything until this disease (whatever we are calling it) hit me. The rheumatologist now wants me to see allergy and immunology bc she believes this is not all rheumatological.

rooser1 profile image
rooser1 in reply to Stm252

if you get another endoscopy, its called a dissaccharide test.

thats good that you cut sugar. its inflammatory anyways. i eat zero these days. thats what turned me around, 10 days into the candida diet.

Stm252 profile image
Stm252 in reply to rooser1

I am going to ask my GI about this at our next appointment in a month. Thank you for.this idea!

DoubleHipster profile image
DoubleHipster in reply to Stm252

Is it possible sunlight is causing the food intolerances. I have similar problems in this thread for decades after incorrect dermatomyositis diagnosis in 1994. No Drs can find out what's wrong, especially food intolerances, which I now know are caused by sunlight or vitamin D supplements. Now just checked and I have small genital ulcers :)

If I stay out of sun I can eat well but can eat virtually nothing if I've been in sunlight without feeling like I've drunk battery acid.

Interesting Lou. I am on Otezla which you probably know is for PsA and has helped about 50 percent of my pain. When I recently came off the prednisone I am now having even more lower sacral pain and hip pain that was masked by the prednisone and foot and Achilles heel pain which to my understanding is linked to PsA. I wonder if the doc is in to something because in her notes she said consistent with inflammatory arthritis and connective tissue disorder.

When I took myself off for prednisone, guess what was being masked? Heel pain! Foot pain! Tendon pain! Hip.pain! And terrible low back pain!

Oh and I have always had wrist pain.

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