Feeling so poorly!!!! What can I do???

Hi everyone I have suffered all my life with all the behcets symptons. Got diagnosed last year, been on all sorts of drugs to help, had steroids now on azathroprine. Been on it for 9 weeks, the only improvement so far is my eyes. My uclers are still so bad, can't eat, talk, clean my teeth. My joints are still swollen. The tiredness is unbearable, I'm having headache's neck-ache's and totally feel like I've been ran over by a bus. Feeling anxious and low. I have two small girls 4 and 6 and have a husband who works long hours everyday. Could really do with a hug. I'm constantly irritated by all the pain, I have bout 15 uclers in my mouth the size of peas. I have tried everything to help the pain ?????

17 Replies

  • hi Kerry Hun,

    One huge hug coming your way babes !! :) :) :)

    Sometimes you just need to let go of the frustration and scream don't you ? AArrrghhhhhhhhhhhh !!

    Okay ... so now a really simple tip that might sound a little bit crazy but it works more often than not for me.

    Get on large bottle of coke and let it go flat.

    Place it in the coldest part of the fridge for several hours.

    Relax on the couch and place the full cold bottle on the back of your neck and rest back against it on the back of the sofa. Hopefully this will help with the pain in your neck and headache.

    Next bit ....... take the still very cold coke bottle and lay back on the sofa so that you can place the whole bottle on your face standing upright with the dents in the bottom of the bottle over the bridge of your nose. Stay like that as long as it takes or until your headache goes off.

    Last bit ......... open the cold coke and drink a glass which will help any ulcers in the mouth and you will be able to swallow this where nothing else seems to go down.

    Hope it helps you just a little bit sweetie !

    Take care and hope you feel better really soon. Okay ? mwah ! :)

    big hugs xx

  • I would suggest soluble prednisolone for the mouth ulcers and Benzadine mouthwash numbs them well....both those are on prescription. Colchicine works well as a preventative for ulceration for some of us, again can be prescribed by GP. Joint pain is really tough and I went to the pain clinic and tried Butrans patches and they will discuss options with you, you need a GP referral to go there. Finally Amitryptyline works well for me to reduce the pain at night and also as a preventative for those deadful headaches. I take 50mg which can cause some tiredness so I take them with my tea and go to bed early on the night before work. If the headache still strikes I take an extra Amitryptyline and a Naproxen...hope this helps. Jill

  • Thanks xandii, think if I started to scream I wouldn't stop.......thanks for your lovely reply. Nice to know someone out there cares... I'm gonna try that tomorrow thank you xxxx

  • Thanks also to Jill, I've tried a few of what you suggested but not all, I will asking gp for the others. Many thanks xxx

  • Sending hugs, I hope you feel better and very soon I know how tough it can be with a very young family to care for and look after when you feel so ill and down...xxxxx

  • Thank you tiger-Lilly, it is very hard. All I wanna do is go back to bed and sleep most days. Thanks for your message. Xxx

  • Hi Kerry, Big hugs from me too x x Azathioprine can take a while before you feel the full effect. Jill has given you some very sound advice already, I have tried and still take some of those meds myself. Getting the right balance of meds that work for you can be a struggle. I got diagnosed over a year ago and am still trying meds to get headaches under control even now.

    Hope you start to feel better soon, more hugs x x Clare x x

  • Coke… by the pint full. sooths the ulcers. Otherwise depending on the location try iglu gel (doctor will prescribe it)

    hope this helps

  • Thanks Clare thars very kind, and mark, the ulcers are everywhere I've tried these gels before after 17 years of having them I've ran out of ideas?? How does the coke the ucler? Thanks Kerry x

  • Hiya kerry,

    *big hugs* hope you are feeling abit better soon.x...with my mouth ulcers I was prescribed like steroid tabs that you hold under your lip and they dissolve...Are you on steroids? If you are I wouldn't recommend the coke thing because drinking coke erodes your bone density much worse if you are..those hydrocortisol (think there called) ulcer tabs really do work I had to begin with like 12+ ulcers couldnt eat or anything and they helped me. Also weird but in shops like boots/superdrug or online you can get this like medicated mouthwash called corsodyl,this really really helped me to begin with before i was prescribed steroids...also i ate icecream [ LOl :) ] just worth a try if you havent already,hope maybe this can help you.

    lots of loves xx

  • Dear Kerry I do hope you get relieve soon. I think with BD it's getting the right balance of the right meds for your body, everyone seems to be different. My daughter started on Colchicine which helped for about 6 months, then added azathioprine, then added infliximab and seems to be the best in 5 years. I'm not saying they are compleat lay gone but heaps better. Jaida was on 25mls steroids, now thankfully off it. In our experience once in a flare all hell breaks loose. It may last 2 weeks or 8 months. I hope your specialist helps soon.

    I know on the old sight someone mentioned a puffer of some sort. I'm so sorry I just can't remember. Good luck. X

  • Sorry 25mg steroids

  • Has anyone tried the bonjella complete? I tried it out of sheer desperation even though I'd used every other gel on the market and the disolvable steroid tablets. I wasn't expecting much but it is fantastic, I always have a bottle in my handbag now. It's like a plastic paint for want of a better discription. You paint it on (it does sting and make your mouth water so stand over the sink) but it seals the ulcer in which allows you to eat and drink without total agony. I find it the best thing I've used. You can buy it over the counter in Ireland (not sure about the UK) and it lasts forever.

  • The best thing to use on your ulcers is a steroid spray. Best thing ever, and is quick to heal. It's an asthma pump you actually use, steroid one and you just spray over ulcers, in all areas!!! I would defo recommend it.

    Any questions feel free to ask.

    Peace and love to everyone. ✌️

  • Hi everyone thanks for all your advise, I have had the steroid spray like when you use for asthma, didn't help me, I haven't tried the bonjella seal but I will. I had an emergency appt at hosp on tues, they have put me back in steroids and changing my immune suppressant as azathroprine wasn't working for me :-( onwards and upwards tho I'm scared about changing it, don't wanna be more ill. Xxx

  • Hi

    What medication have they changed you to?

    Don't be scared, it's frustrating but try and stay positive.


  • I'm gonna be on Methortrexate I think that's how you spell it. Plus the steroids xxx

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