Still here but not able to type much - Behçet's UK

Behçet's UK

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Still here but not able to type much


Hi Everyone

I'm still decidedly unwell. Some of my fingers have healed and new ones have started.

At one stage I had a bandage on every fingertip (and one right big toe).

I'm due for another infusion next Thursday - here's hoping.

The worst thing is I'm winding up / handing over my business which was based 95% on answering emails!

As one person said the other day - some things get so bad you have to laugh.


17 Replies

Hi Lesley,

I was just wondering what they descided to treat your very painful fingers with, is it working or do you think time is the answer? I hope you feel better soon.

Love Michelle

Oh you poor Ozzie! I know how they hurt because, like I said recently, I have the same issue going on (though not in my toes thank goodness). So far my GP's response has been antibiotics and sterile handwash - doesn't work but then why would it? I take three different kinds of antibiotic a day as it is! Like you I have a complete hand out of action and as there is nerve damage in the other hand so two fingers are numb I'm up shit creek very much without a paddle!

And why am I here at 9.30 on a Saturday morning? Cos I just washed the en-suite floor (a very small room and using one of those steam mop thingies) and the sweat is just pouring off me - stinging my eyes and soaking my clothes - and my blood pressure is through the roof (although it has been all week). Aaaaaaaaaaaaaaaaaagh!

It's lovely to hear from you my dear. Huge hugs as always.

OOh ! Hello Di ! Long time no see hun.

Sending you big puffs of cool air for your sweats and hope your pinkies improve along with Lesley's really soon. PUFFFFFFFFFF ! :)

Ooh, thanks Xandii - all the puffs you can manage darlin' blow em this way x

Hi Lesley so sorry for all the pain you are suffering. Not seen yo on here for a while but also I couldn't get on the site for a few days last week. As your friend said keep laughing and at least smiling. Will send you private email later.

Love and Hugs


Hey Leslie its great to see you posting, you are so upbeat! I admire your fortitude and resilience you are a wonderful example for us all. I send you lots of love and hope that your fingers get well soon. Its a really mean illness and I hope your digits are back in action soon. Jill x

Great stuff Lesley...I hope the infusions start making an inroad....I want to curse those bl***dy blisters on your fingers but if I said on here what I really thought I would be reported.

Glad you made the effort though

Love Andrea

Thanks everyone!

I was told BD reacts to almost anything and to go easy on what I put on my fingers. At the moment it is cortisone ointment. Personally I think this flare is something that has to run a cycle but I think it will be months!

Also,it's not just the lesions on my hands - I am generally a very unwell baby. Weak left arm etc.

I used to type 50wpm but now about 10!

Cheers Lesley

goodlife in reply to lesleyg

This time will pass and I hope its over soon. lots of love Jill

lesleyg in reply to goodlife

Thanks Jill!

So sorry Lesley to ask a question when it's painful for you to type, but have they started you on Infliximab or is it IV steroids. Hope it works. X

Hi Michelle (and all)

I had Infliximab three years ago when I was diagnosed. It didn't have any effect either good or bad on me.

Since October I've been having IV steroids which help in the short term.

Prednisone is only thing which has had any effect I've been up to 50mgs orally but we are trying to get it down.


Just to say I'm sending love and hugs xxxxxxxxxx

Just to say I'm sending love and hugs xxxxxxxxxx

Hi Lesley

Sending you huge love and hugs across the ocean!


Angela xx

Hi Lesley.

I think of you a lot & wonder how you are going. The sores on fingers sounds really painful. I had my visit to a Prof the other day. Was one more exhausting day for me, as I am more & more bedridden. I am still processing in my head how it went.

I guess we sort of excluded (as much as one can as anything is still possible)...excluded Lupus (even though I get a lot of Lupus-like drug reactions & facial flushing in Lupus pattern), excluded Ankylosing spondylitis and if it is Psoriatic arthritis it's not convincing at the moment, so that is still open & up for grabs LOL...

Lyme Disease was thought unlikely as no typical onset symptoms & no typical rash...BUT 'no good serology available in Australia'...another area of controversy...from all I have read lately.

No real discussion of Behcet's possibility... but neither was it excluded....but at least I raised it.

Diagnosed with CFS...(agrees with current Integrative GP)...however I gather they differ as to the significance of Mycoplasma found in my blood, what it means, whether it should be treated, what with & for how long. I just love being in the middle of a controversy!!! Anyway we will all beg to differ & leave it at that & carry on regardless!!! Hahaha oh & keep our senses of humour!

Also accepted I have widespread arthropathy & fibromyalgia typical tender points, and Dry Eye, dry mouth.

My poor sleep & disrupted sleep patterns are typical of CFS.

We also agreed as a given that I have many, many allergies & sensitivities to chemicals in food & environment, including 4 known chemical contact allergies (tested by patch testing). This is also reflected in my many reactions to prescribed medications & complicates any treatment doctors try to give me.

I have the possibility of accessing a Govt sponsored programme for people with chronic fatiguing illnesses, which when I looked, is basically what I've already done for last few years anyway & have deteriorated. So plan was to do one of these programmes & then get back to him...but i think he has not understood how sick I am now & what I have already done & still have access to locally. Was only a 1/2 hr apptmt & felt rushed, as was first apptmt.

Walked out disappointed as I did not get the diagnosis I was expecting (but not really wanting!!!) but I guess we ruled out a few things??? So not entirely a waste of time!!!

Hope the Spring weather is agreeing with you. It cheers me up & I don't get so many attacks like systemic Raynaud's & cold extremities.

Hi, sorry I have just come back to the website - have really been unwell and still not back on top of things. It is hard to say what my best will be (I guess no-one knows).

Sorry you aren't going well with you doctors - it is a very expensive, tiring road to diagnosis.

In that way I can say I was fortunate to be diagnosed - although mine has been labelled 'atypical behcets' with a slight doubt that it might be something else.

Hope you get somewhere soon,


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