Feel totally let down, ignored, and left to suffer!

[johnmq357]

Hello everyone, 

I have just signed up today in the Behcet's Syndrome Society as I feel so scared and lost. Since 5th February 2016 I have constant non relenting recurring multiple mouth ulcers. I have had more than 300 of these since then!! I have had two episodes of passing blood and mucus in my stool. The first was last Easter and it lasted for, four weeks and the second was in early February, this year and it lasted for eight weeks this time. I had a Colonoscopy and all was clear, no Crohn's.  I get very sore spots on my upper body that are filled with puss. My feet, knees, arms and neck have been sore for a few years. My GP puts it down to my work as a plumber and getting older. I am now 57 years old. My eyes sting a lot and when I waken in the middle of the night, I find it almost impossible to open my eyes as the lids seem to have been forced shut! Two weeks ago I started having a dull headache that does not go away, even with over the counter pain killers.

My tongue swells up at times to nearly twice it's usual size and goes a very deep purple colour, instead of the nice pink colour that it used to be. I have showed my GP this and he quickly said....sorry I know nothing about tongues! My specialist at the hospital, whom I have only seen twice, will not entertain the words:  Behcet's syndrome. I have mentioned it to him (because when I put my symptoms into my computer, Behcet's is what came up) and he said that in all his long career, he has only come across someone with Behcet's once, and as it is so rare, the chances of coming across a second case, is virtually impossible!  I am not seeing a mouth specialist, regarding my mouth ulcers, until May this year. 

On three occasions since 5th February 2015, for a two week period, my GP put me on Betamethosone 0.5mcg soluble tablets. These worked brilliantly at keeping the mouth ulcers away. Sadly after the two weeks....a few days later the ulcers are back and more vigourous  and painful than ever!

Every single day I liquidise my food and drink it because I simply cannot chew! The pain is too much. Except for the three, two week periods when I was taking steroids, I have had mouth ulcers constantly! My mouth is full of scars. My GP just looks at me and tells me that there is nothing he can do!

I do not know if this is Behcet's. Can Behcet's suffers have mouth ulcers every single day for more than a year? Just recently I had two at the front of my tongue, which were at least a centimetre wide! I have never had these big ones on my tongue before! The ones on my tongue were very small and very painful. The big ones are usually on my gums and cheeks.

I would really appreciate it if any of you have advice for me, as I just do not know what to do and as time goes on, without any treatment, I find myself getting really scared.

Thank you.

Kind regards

John

[billi]

HI John and I do feel for you.  I have suffered with Behcets for over 30 years and it took me over 12 years to get a diagnosis.  The person you need to see is a rheumatologist.  I know what you're thinking .....what's this got to do with ulcers.....but they are the doctors who know the most about Behcets.  You can get ulcers in your mouth, throat and nose ,on your skin, penis and anus.  Attacks can last a couple weeks to a couple of years.  You can also get many other symptoms.  I know it sounds terrible and frightening but there is life with the disease.  I managed to have two more children and even went back to work at times.  Are you in the UK?  If so you are very lucky because we have this site, helpers on telephone lines , the society itself who work endlessly to raise awareness and money for the Centres of Excellence.  Also in the last 15 years or so there has been great improvement in research, doctors knowledge and communications.   Take a look at the site.......behcets society.org.uk.......where you will find much more information and advice.  

Tips for ulcers...ask for a CLENIL inhaler from you GP, a few puffs in your mouth, do a gargling motion then open and blow out....do not inhale.  Repeat from 3/4 times daily, reducing as ulcers heal and as you are doing, only warm drinks through a straw and mashed up food whilst in a flare.

I do hope this helps you

Hugs 

Billi

[johnmq357 in reply to billi]

Hi Billi

Thank you for your reply.

Yes I am in Gloucestershire, England.

My specialist is a Gastroenterologist who seemed to lose interest in me when I was cleared regarding Crohn's. I will ask about a Rheumatologist.

Cheers for now

John x

[johnmq357 in reply to johnmq357]

Billi,

Sorry I meant to ask if you had mouth ulcers for the first 12 years?

John

[CF43]

Dear John,

Please ask your GP for a referral to one of the centres of excellence- they will be able to diagnose you (or rule out) Behcets very quickly. I rang the centre first to find out what to say to my GP and I think they sent me a form? In the meantime, the CoE prescribes a brilliant mouthwash that hopefully will work for you - it works within a day for me. It is a mixture in a small amount of water of betamethasone (0.5mg) soluble, vibramycin (100mg soluble) and nystatin (1ml liquid)- they have done a lot of research on this mixture and call it the miracle mouthwash- please get your GP to prescribe. We have all been there blending food, even unable to drink water at the worst points. You don't need to carry on suffering. Good luck. 

[johnmq357 in reply to CF43]

Thank you CF43

[billi]

Oh yes I had them in my mouth, throat, nose, hands, legs and down below.......horrible days.   I also wanted to tell you that we have Centres of Excellence now in London, Liverpool and Birmingham.  If you go onto the site I gave you, you will find all the details, address, phone, consultants etc.

Do let us know how you get on.

Billi

[johnmq357 in reply to billi]

Thank you Billi

[Hidden]

Here is the link to the Centres of Excellence. 

behcets.nhs.uk

They are centrally funded and don't cost your GP anything to refer you. Ditch your present Consultant, I have rarely heard anything so ridiculous as you can't have Behcets because they have already had a patient with it!! 

The Centres of Excellence aren't perfect but they are probably your best chance of a diagnosis. 

Good luck

[johnmq357 in reply to Hidden]

Thank you Keyes

[johnmq357]

Sorry my initial post should have been 5th February 2015 and not 5th February 2016

Ooops!

[Dinkyjojo7]

Hi Hun my story is quite similar to yours except after suffering with horrendous mouth ulcers constantly for 6 months( and losing a stone in weight because I couldn't eat !) my gp recognised it as possibly bd and referred me to a rheumatologist . Since then they have been really helpful and like the previous post prescribed the miracle mouth wash which did help! I was first seen in October and 6 months on we are still experimenting with different medications! The only relief I tend to get is when I take prednisolone but then end up putting on lots of weight! At the moment I am taking a drug called Mmf which is an immunosuppressant and colchicine and mouthwashes and then taking brufen and co codamol for my headaches and joint pain! I occasionally get the pus sores but are usually hormone related 😊! I have to have bloods every 2 weeks because of the effect these meds have on you liver! I think Hun it is trial and error as to what meds suit you and can help you . The fatigue I feel is awful and as a single mum with 2 children I feel I sometimes struggle . Having this forum is amazing because very few people understand what you are feeling and how frustrating it is not to be able to feel better straight away even with taking meds . I really hope you will feel better soon and don't despair ! There is light at the end of the tunnel ! If there's anything else I can say or do please let me know! Hugs jo x

[Jaxxi]

Hi John. I don't have much more to add, just to reiterate what the others have said about getting referred to a Centre of Excellence, where Behçet's can expertly be confirmed or eliminated.

As well as a GP, you can also be referred by another healthcare practitioner, such as an optician or dentist.

As soon as you can, start taking decent photos of your ulcers, spots etc. - as according to sod's law you won't have a single lesion when you see the experts! A simple log of your symptoms will also be good in helping them how active your illness is and which drugs you need.

I wasn't diagnosed until age 55 after a lifetime of symptoms. From 45 onwards all I got was 'it's your age, dear'. There is a big difference between the pain and fatigue of Behçet's and normal age-related slowing down. We can easily see that our debility is abnormal when we compare ourselves to friends the same age, so it's demeaning, disrespectful and belittling when doctors infer that you are just being weedy about getting older.

Very best of luck

Jakki

[JoeCh]

Hi John

Sounds like really terrible symptoms, I used to have awful mouth ulcers as well but have been on Betamethosone 0.5mcg soluble tablets for at least the past year and it works a treat, I'd ask your GP to give you this on repeat as it seems to help you. I find the more I can keep the symptoms at bay the less frequent I have episodes of Bechet's. Also I echo a previous comment about your consultants comment on it not being Bechet's because they've had their quota of one per lifetime! All the best!

Joe

[johnmq357 in reply to JoeCh]

Hello Joe,

Thank you for your reply.

Since February 2015 I have had these horrendous mouth ulcers every single day! I have never known pain like it! On just three occasions GP allowed me to have Betamethosone 0.5mcg, for two weeks. I usually have around 8/10 ulcers at a time and in this past month the larger 1cm ones are now on the sides and front of my tongue! These ones are totally unbearable!!

Do you swirl the diluted steroids  in your mouth and then spit it out? My GP only allowed me to swallow them on the first occasion and the other two times I had to spit out. I was on 4 x 0.5mcg a day.

On the last occasion I decided to swallow the steroids. I found that this really did help my other symptoms as well, (I felt much fitter and energetic) except for all the mucus in my throat and my stinging eyes.

Seems so pointless in being pain free for a fortnight and then it all starts all over again, when I stop the steroids and the ulcers reappear twice as painful.

Regards

John

[JoeCh in reply to johnmq357]

Hi John

I completely agree, it does seem pointless to have them for a couple of weeks and then have to bear with the pain again. It does sound like yours are a lot more aggressive than mine were at there worst, in both size and volume. I don't swallow the solution, I didn't really think to, but if it works and doesn't cause any damage. I really hope you get a diagnosis soon as it does sound awful. Please keep me posted on how you get on.

Joe

[harvey6465]

hi Gloucestershire is pretty woeful. No Behcets specialists. I have to go to Bristol to see rheumatologist. It can take years to be diagnosed so keep on to go until you see someone. The ulcers are worse when you first get them. I've been suffering 17 years and can tolerate much more now although they never go for longer than few weeks before starting again. Ask doc for difflam rinse and spray so you can eat. I have same problem with eyes sealed shut at night but hyco san preservative free was best eyedrop for me. Put in before bed. Can buy in chemist. Also get appt at optician asap to check as Behcets can affect your eyes. I sometime get ulcers in eyes. Ask gp to refer you to Behcets excellence centre in Birmingham. They can diagnose you. Good luck

[johnmq357 in reply to harvey6465]

Thank you Harvey6465

[Nisi0406]

I am so sorry to hear that you are going through this.  I also get tons of oral ulcers and yes I have at least one just about all the time.  Some hurt more than others.  I get  them mainly in the back of my throat, but I have also had them down my esophagus(30 or so one time), on my tongue, roof of mouth, gums and lips too.  Try to get in to see a rheumatologist, he or she will help you.  Colchicine is a good medicine to help the ulcers, though I still get them, just not as severe.  Try to see your eye doctor or even better an ophthalmologist to see what is going with your eyes.  Behcet's can cause eye problems that need immediate care.  I wish you well.

[CrystalAngel1]

Hi John, I can only echo what has already been said. I would get your GP to make a referral to a centre of excellence. Before my diagnosis I had pretty constant mouth ulcers that involved my throat too. I have joint problems, migraines, skin issues and gut involvement. Even under the care of my local hospital which is a large teaching hospital in a city, my Behcets wasn't properly managed. It's only been since the diagnosis was confirmed at a COE and I was put on appropriate medication that things have improved so much. Mouth ulcers are my most improved symptom. I'm sorry you are feeling so abandoned whilst so unwell. It's unfortunately not uncommon on our Behcets diagnosis journey. I hope you find some relief soon and are able to get access to a more supportive and appropriate medical team. Good luck. 

[lillw17]

Hi John, I just had one suggestion I didnt see mentioned yet for the oral ulcers. I use Triamcinolone Acetonide dental paste. It is the only thing I have ever been prescribed besides prednisone that helps heal these. Just thought I would mention it. I wish you luck.

[Papapickle]

Hi, 

I believe you can self refer to the centres of excellence - avoid Birmingham. 

If you cannot get Meds, switch diet to non acidic, non fizzy drinks, no alcohol cut out bread too. Use milk on the ulcers even a small amount and if you can get some difflam spray for the pain. 

Avoid ibuprofen tablets as they will be rough on your stomach instead use gel. It works faster and won't have the same impact. 

For eyes use some eye refresh solution or some drops they give for conjunctivitis as even though this isn't the case it would help to clear any infection if present. 

Hope these all help, I have the neuro variety of Behçets and have just had pulse steroid therapy, which gave me severe reaction and I also take immune syppresents. I would definitely recommend doing things naturally if possible as these drugs and all the others I take have such an effect on m e and my body. Not always good ones either. 

Take care

Chris 

[johnmq357 in reply to Papapickle]

Thanks Chris for you post.

Regards

John