Reactions to insect bites

[Helsybellsy]

Hi all. I joined here today and I'm learning so much. I have not been diagnosed but a rheumatologist mentioned about a year ago that I might be at the early stages of bechets or something similar. I suffer from regular mouth ulcers (they last a few weeks, usually there are multiple and I have them more often than not), joint pain, fatigue and a whole range of other weird symptoms. I have a Crohn's disease diagnosis but my gastroenterologist has said on many occasions I don't seem to follow a typical Crohn's pattern so I'm not on any treatment. I have a tendency to react badly to meds so we've been reluctant to start any ongoing treatments and trying to manage symptoms. Every few months my body seems to just go crazy and it's usually put down to some sort of inflammation. (Colitis, neuronitis, sinusitis etc etc) but inflammatory markers generally don't increase.I don't have any major skin issues which the rheum said made bechets less likely but one that I do get is massive reactions to insect bites. A mosquito bite can often result on a palm sized swelling. I also react weirdly to injection sites, about 24 hours after an injection (blood test/IV/injection) Il get a water filled blister and swelling like an insect bite. I haven't had a pathergy test but wouldn't if this was suggestive that of I got it done id be positive.

Am I clutching at straws? I have a gp appointment in a few weeks and wanting to raise my concerns that something is underlying everything going on.

Thank you for any input.

[Ayea]

Hi There,

Your description of your experience is quite like mine in the early stages and I have just been diagnosed with Behcets (November 2023). Like you, I over react to anything that is inflammatory - minors cuts, bites etc. I also had over a decade of seemingly unrelated random symptoms and inflammatory problems (one thing after another) before somebody was able to join the dots.

The specialists have criteria for diagnosing behcets -- not everyone gets all of the listed symptoms and you may not have a full set - but you can still be diagnosed and treated if a Rheumy thinks your problems are early Behcets. The problem is, Crohns is also an immune system related condition and I think it can cause mouth ulcers too? My Mum has Crohns and gets mouth ulcers plus lots of aches and pains (but then she is 85!)

My first symptom was the severe mouth ulcers. They would come, last a few weeks and go away again. That's all I had for the first few years along with a few joint problems. So I did have an early period where I only had a partial set of Behcets symptoms and would not have met the diagnostic criteria.

I went on to get DVTs then started getting all sorts of crazy inflammatory problems, just as you describe.

The skin problems came a bit later. Lots of pustules all over my legs and arms. They are pretty gross Then I started having blurred, patchy vision. Still my GP did not realise what was going on. He thought I had fibromyalgia and put all the other stuff down to stress and anxiety. Took a very experienced auto immune specialist to recognise the problem.

I have had dozens of blood tests over this time and my inflammatory markers are pretty much always normal, even when I feel like I am on fire with inflammation!

Genital ulcers (along with mouth ulcers) are very common in Behcets, but I have never had those (thank God!) So, even though I am now diagnosed with Behcets, I am still missing one of the most common and characteristic symptoms (thats what makes diagnosis tricky).

The bottom line is, you may have early Behcets and not quite fit the criteria they use to make a confirmed diagnosis. What you describe sounds a lot like my early experience. Crohns might also explain your symptoms - only a top notch expert in autoimmune illnesses will be able to figure it out.

Perhaps ask your GP for a referral to a rheumy that specialises in auto immune illnesses or the GP can even refer you to one of the Behcets centres of excellence (London, birmingham, Liverpool). GPs can refer patients directly to them even if they only suspect it might be Behcets.

Take photographs of your ulcers - the experts can apparently identify the ulcers that are typical with Behcets (they are very deep and nasty!).

You say you have ulcers more often than not, it would be interesting to see if they go away if you take Colchicine? Perhaps ask your GP if they would be happy for you to try it? That was the first thing the Specialist gave me - 500mg twice a day. Within 6 week my ulcers had pretty much stopped. Colchicine can cause stomach upset in some people, so that might not work out too well if you do have Crohns. See what the GP thinks? Not everyone with Behcets responds to Colchicine, but I think it has a pretty good success rate.

[Jaxxi in reply to Ayea]

I ought to point out that not everyone with Behçet's gets huge, deep ulcers. I get crops of very small 'herpetiform' ulcers. I was diagnosed with Behçet's at the Birmingham Centre of Excellence. The oral consultant there told me that Behçet's ulcers can take many forms.

[Ayea in reply to Jaxxi]

So even the nature of the ulcers is unique to the individual - no wonder Behcets is so difficult to diagnose. I am very grateful that Colchicine brought this part of Behcets under control for me. I really feel for the people that are unable to stop the ulcers - they can be soul destroying.