 Betnesol Mouthwash/Thalidomide 35 messages in this subject
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Hi
Does anyone have any experience of using Betnesol Mouthwash (this is a small pink steroid tablet which disolves in water, prescribed by GP)? It’s supposed to reduce the inflammaion I think - not sure if it works too well... I have been under-going treatment at Guy’s Hospital for Mouth Ulcers for the past two years. I am nearly up the top of the treatment ladder now, as most of the things orescribed haven’t worked - for years I have had ulcers on/under the tounge - each time I get them, I get severe fatigue and feel very drained.. I tried swapping toothpaste to Sensodyne to try and avoid SLS, - I think this has helped a little. I do wonder about food intolerence though, things like mayonnaise, thousand island dressing and salad cream ”seem” to cause the ulcers? Guy’s poo poo the food idea, but say just avoid food that triggers them - not that easy if you don’t know what ingredient it is that ”may” be causing the ulcers??? Anyway, following unsuccessful treatment, I am to be considered for Thalidomide - supposed to work quite well, they say, but does anyone know about this treatment for ulcers and indeed anyone actually been on this? If so, what’s the result? |
| Paul 28 January 02 |
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| i am a 16 year old ulcer sufferer i have reached the top of the ladder at guys hospital and am now on thalidamide. i have been under guys for 4 years and have had everything going and now this is said to be the only thing. i have been on this now for 18 months. im sorry to say but yes like they said it did work but for only a short period of time and i am now still taking the medication but am also still getting bad mouth ulcers. plus also you have to have regular nerve checks in which they test the nervous system as this medication can cause problems in this area. i have had many other medications in which i have had to experience trial and error. if anyone else knows of any other cures i would be very grateful to hear from you |
| Shanelle 1 February 02 |
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| I myself a female would never take it. It causes Brith defects in your children, they only realized it AFTER perscribing it to pregnant women, so what do they really know about it? I know what one woman went trough for 1 12 years watching her child die from where she had taken this drug. What are the Long term effects..REALLY? |
| 17 April 02 |
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| I AM SUFFERING FROM MOUTH ULCER. I HAVE TAKEN TREATMENT FROM HAMDARD DENTAL COLLEGE/HOSPITAL, KARACHI, PAKISTAN. THEY HAVE TOLD ME THAT THIS DISEASE CANNOT BE CURED. HOWEVER, IT CAN BE CONTAINED ONLY. THE HAVE PRESCRIBED ME TAB. BETNESOL TO BE USED AS MOUTH WASH BY SOLVING INTO SOME WATER. THIS IS TO BE USED ONLY ONCE IN A DAY. THE EXCESSIVE USE IS THIS MEDICINE MAY GROW FUNGUS IN THE MOUTH. I AM ACTING THEIR ADVICE. I WANT SOME MORE RELIEVING TREATMENT. WILL YOU PLEASE ADVISE ME SOME MORE APPROPRIATE TREATMENT. I SHALL BE INDEBTED TO YOU. MY AGE IS 58 YEARS.THANKS. |
| MRS NAIMA ZAMIR, KARACHI, PAKISTAN. 1 October 08 |
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| I am a 33 yr old male suffering from hypothyroidism, which is medication controlled, who too has suffered from mouth ulcers on a continual basis for as long as I can remember and the only thing that seems to be a fix is, little stress and plenty of sleep not always possible unless you like to a hermit and don't work. I have 5 ulcers at the moment and they are driving me mad they make me miserable and cause pain wen I eat and drink. I have been referred to Dental hospital who more less say that it's something that some peole get and have to find a way to cope with it I have tried Betnesol but for ulcer sufferers this isn't not a quick fix as it only releives pain, I have been advised that it could be a vitamin deficiency. Bonjella isn't worth the money or igloo, I don't like the sound of Thalidomide after all the history that has follwed this medication I would advise caution to anybody thinking of taking this. I guess as I said sleep is natures best cure, if anybody does discover a ground breaking cure to get rid of these blessed raging things please post it on here. |
| Andy Bell Bristol UK 1 October 08 |
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| I have been using Betnesol for over a year now and thankfully have had NO ulcers. You have to take them every day for 3 months, then 1 every 2 days, 1 every 3 days, etc etc until you only take them when feeling an outbreak. Take a few that day and grab an early night - unbelievably they are gone in the morning and have not broken out. It is very important to blitz them early and I find this by far the best preventive measure having tried everything throughout the years, including eliminating alcohol, spicy food, late nights which worked but life's too short to eliminate fun things like that! This is the only thing that works and has given me my life back - a MIRACLE!! Would greatly recommend these steroid tablets - see your GP. Let me know if you have any questions... yidarmy690@hotmail.com Good luck ! Mark |
| Mark from London 28 October 08 |
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| I was prescribed Betnesol a year ago and after 4 days there was a huge improvement in my mouth and the soreness and ulcers I had experienced for over two years, in an ideal world we woudnt need medication but sometimes you have to fight fire with fire and I suspect all the chemicals etc. that make up our every day life have contributed to mine and othere conditionsso we cant rule out chemicals to resolve it. I have two kids and another on the way and I like most have to work to pay the bills so I cant just ensure I get 10 hours sleep and eat perfet food all of the time. Betnesol changed the quality of my life immensely and I would recommend it to anyone. I havent used for over six months, and whilst I wouldnt because I am pregnant I havent even needed to consider it until now as I have been symptom free for most of this time. Good luck try it I say. Debbie |
| Debbie from Wirral 5 January 09 |
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reply to Debbie and Mark
I have lichen planus in the mouth (which may be what your 'ulcers' are) - google it. I have been prescribed Betnasol from GP aftter hospital consultant's letter. Luckily I remembered he said it was a mouthwash because the instructions on the pack said take 2 tabs daily with food! Did some research on internet and Mark's comments were very helpful except that I only have 28 tablets. I can avoid flare ups by avoiding all acid fruits and tomatoes.
Rita from Essex 2 Feb 09 |
| Rita Ireland 3 February 09 |
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I had a very painful gum ulcer and found "Igloo" proved useless, "Bonjela" is better and half the price. The best relief I found was drinking a glass of COLD water before eating, and and applying liquid TCP on a cotton wool pad to the area of the ulcer from time to time.
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| Phil from Northampton, 14 February, 09 14 February 09 |
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Does anyone know if taking Betnesol as a mouth wash carries the same risks of side effects as taking them orally?
I have been presicribed them for lichen planus which is not really very bad. |
| Isoebl 8 April 09 |
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| I tried bonjela, anbesol, corsodyl and adcoryl...and still this 'ulcer' would not budge. So I recently went to my GP and he prescribed Betnesol as a mouth wash. 7 days after I see no real improvement. I've been referred to the maxofacial unit for a mouth cancer biopsy as I also have a white patch on my inner cheek (opposite the 'ulcer'). I'm 33, I don't smoke and hardly ever drink so hopefully it wont be mc. |
| Ellie 10 May 09 |
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Ellie I think you will be ok. It is probably Lichen Planus. I saw a maxofacial surgeon and he took biopsies to make sure the LP wasn't malignant. Only 1% is malignant and it may be even less than that. He prescribed me Betnasol mouth wash tablets and I have been using them for 3 weeks now and I am looking forward to the improvement that Mark mentioned.
Good luck |
| Elaine 22 June 09 |
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| I am 20 and have had mouth ulcers since about 2 years old! I was given corlan pellets to begin with as a child, these were useless. Bonjella and stuff from the chemists is a complete waste of money - there is far too much rubbish in them and doctors said the same. I found that Adcortyl in Orabase was the only thing that shifted them, but shelf life of the stuff is short and being a steroid it is best to avoid overuse of this. I am prescribed Betnesol tablets which are pink and dissolve in a small amount of water for a mouth rinse. Its OK if you can catch the ulcers really early but is not always effective. Again its a steroid and overuse is not recommended. Mouth ulcers can be caused by vitamin deficiencies. Lack of Vitamin C is thought to be one of the main reasons. However, I think food intollerences and allergies play a role (delayed allergy IgG type). Also if you have leaky gut (intestinal permeability) from antibiotic, steroid, NSAID use etc. then toxins can go into the blood from the gut and set up all sorts of problems which can reach everywhere. It is important to link any other illnesses you have with the mouth ulcers eg. irritable bowel syndrome, bladder problems, allergies, fatigue, dark circles under the eyes, acne. Leaky gut syndrome is very common thanks to overuse of antibiotics and high sugar western diets etc. Maybe some of these things contribute to mouth ulcers. Get the immune system up by natural methods or see an alternative practitioner, nutritionist who will look at the whole body and not just like traditional doctors who will only treat the ulcers with drugs. Thalidomide is a definite NO!!! |
| Peter 31 July 09 |
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| I would like to respond to Isobel's question. I had lichen planus and took Betnesol as mouth wash 3 times a day for over 3 months. It works. |
| Eric 4 October 09 |
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Hi there,
I'm 24 and have suffered from painful mouth ulcers and / or inflamed taste buds my entire life. Over the years I've tried Bonjela (useless), Corlan pellets (useless), adcortyl in orabase (didn't notice any improvement and hated the gritty texture), Iglu (doesn't get rid of ulcers but does coat them so you don't keep catching your teeth on them), Oraldene mouthwash (no difference), Difflam spray (useless), applying neat clove oil (horrible) and even chewing liqourice sticks (disgusting). I have a healthy diet, rarely smoke and eat plenty of fresh stuff so I don't think my ulcers are due to a vitamin or mineral difficiency. I do tend to get them more when I'm tired, run down or stressed but I often get them for seemingly no reason. I currently have a big painful one inside my bottom lip :(
I've recently been prescribed (by my dentist) Betnesol tablets to dissolve in water and rinse with 4 times a day. They definitely help my inflamed taste buds; and I think they might be helping my ulcer a little too. Of all the many remedies I've tried, I think these are the best so I recommend giving them a go. |
| Amy 20 October 09 |
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| Hi guys,I have been tortured by these hateful,torturous THINGS in the last 10 years.I have tried every known cure from supplements to steroids.Steroids were becoming less and less effective so was referred for thalidomide.I had a few funny sides at first but it kills them dead within 12-14 days.I have had wall to wall ulcerations for the last decade with minimal relief. My family have seen how it has destroyed me, with my confidence reduced as I could not speak without either being annoyed of aware of how I looked.I would gladly speak to anyone who feels the same way as I used to... I am a new person. |
| Daren 13 November 09 |
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| Does anyone have any tips on how to get the bethnesol tablets to dissolve quicker and on the right area of the tongue. I've just statred taking them and they take forever to dissolve and keep coming away from the ulcer. |
| Graham 17 February 10 |
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Graham
Betnesol tablets small pink ones should be dissolved in a small amount of water and used as a mouth wash . Not dissolved in mouth . Only white Corlan pellets dissolves in the mouth . |
| Len 24 24 February 10 |
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| I dissolve the betnesol tablets in warm water. They dissolve much quicker. Have just got a new prescription which I cannot fill! I've been to five pharmacies and none of them has any stock. When they phone their suppliers, they are told there is a manufacturer's delay and that the tablets will only be available again in APRIL!!! Any ideas on where/how to get them? They have been a life-saver for me and while my dose has been reduced from 4 per day to 2 per day, I definitely still need them. I'm terrified of the dreaded mouth ulcers breaking out again! |
| Rose 25 February 10 |
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| I always get my Betnesol from Asda chemist, presribed for Linchen Planus, they work very well. I also dissolve them in a small amount of warm water. |
| Anita 26 February 10 |
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| i eat them-they work quicker and remain in your system for a long period. thus reducing the need to keep taking the tablets continually. When the ulcer re-assertes itself-in my case about 12 months-just repeat |
| michael 1 March 10 |
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Michael, I think you should check with consultant, dentist or doctor who prescribed your tablets. Betnessol is a corticosteroid and should not be used unwisely as it can harm your internal organs. If you have mouth problems it is most likely that you should dissole the tablet in water and use as a mouth wash.
I have bad lichen planus and find that I cannot get betnesol at the moment. It is not good enough to say that they will only be available from April. |
| Astrid Cairns 3 March 10 |
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| Yes, it's ridiculous. I've now been to 6 pharmacies in Guildford, and my husband has tried in London, but no Betnesol tablets are available! I am going to see if I can get some in South Africa when I go out there for Easter. I bet I'll be able to get them there!! |
| Rose 8 March 10 |
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| ive had lichen planus ( mouth ulsers) for 28years it comes and goes and I have found that Gengigel mouthwash can help. I had been in remission for over a year but unfortunatley it has just come back and I am sure it is because I have been under a great deal of stress for a few months, over the years I have leart that stress does cause mine. Im going to try Betnesol after reading these messages and hope it works!! Thanks |
| sylvia 11th march 2010 11 March 10 |
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| Stocks are available in Norwich from Boots outlets. |
| Nibor 12 March 10 |
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| Suffering with mouth ulcer been prescribed soluble bethnesol. How do u I take it ? Sure Dr said let it dissolve n the ulcer. |
| michelle 28 April 10 |
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Hi there Michelle
I have also been diagnosed with Lichenoid Reaction and using Bethnesol which you dissolve in a small amount of water, gargle mouth, do not swallow and spit out, it does help. My dentist sent me to hospital to confirm that the white marks around ulcers on my inside cheeks were Lichenoid Reaction, doctor asked if I had a rash on arms or legs or anywhere on my body as Lichen Planus can also causes a rash on the body as well as white markings around ulcers in the mouth. I do not have any rash and doc said I have Lichenoid Reaction which is caused by allergies ie some fruits, dental fillings, wine, just try to find out what triggers an ulcer, tomatoes are now on my no-no list along with bolognese and anything really made from tomatoes. I also use toothpaste without SLR which helps a lot for me.
Hope this info helps anyone out there. |
| Elizabeth 28 April 10 |
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re Sylvias message 7 March Lichen Planus, does it give a rash on the body as well as ulcerated mouth.
Thanks
Liz |
| ElizaBeth 30 April 10 |
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Hi There,
i've been suffering with Ulcers since i was 7 years old. One day i ate a bowl of Cruncy nut corflakes, bit my tongue and that was it.
I've had many treatments, such as Thalidomide, Colchisine tablets, some other Tablets that you disolve and swish around your mouth. Now i'm taking Azothioprine tablets. these have been quite kind to me and have only had bad break out 3 or 4 times in the 5 years i've been on them. Like someone above, GUYs Hospital Poo Pood the idea of certain food intolleraces! but there must be some sort of explanation. For the amount of people that suffer from this, there needs to be more research. Fair enough, it's no more important than Cancer, but after 16 years, i cant take this any more. Right now i have ulcers on the outside of my lips so i cant even leave the house. It's depressing and i've cried over these ulcers too many times in my life. I honestly think the main foods that trigger are Nuts, Shellfish and spicy food. I do tend to feel tingles after i eat them, but it's hard to know which one it is. I just wish i had more guidance from my hospital consultants. It's so patronizing when you go to the hospital and they look at you with pitty, and show all there students your mouth and previous photos. I just want to be cured for heavens sake.
Ok that's enough ranting! lol I wouls suggest to everyone to use GENGIGEL MOUTHWASH AND GEL as they are pretty good. Use them everyday as pasrt of your dental regime and can cure pretty quickly. Only thing for me was i ran out and live on my own so couldnt get anyone to pick me some up. So i have to resort to the good old Salt water, which isnt quite as effective.
I hope i've helped some people. sorry for any spelling mistakes too. If you need any guidance, or want to offer me any please contact me at: smelly1987@googlemail.com or .co.uk... cant remember off the top off my head
Be happy and ulcer free
x |
| Larisa 2 May 10 |
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| By the way: Prednisolone is amazing. the few times i've had it, it has cured my ulcers within days. Doctors are reluctant to give them to you if you have ulcers all the time.. but it's worth a try |
| Larisa 2 May 10 |
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| is their any side effect of using betnesol as a mouth wash(3 times a day)?? |
| honey 29 May 10 |
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HI there
I am using Betnesol for an allergy ie canker ulcers and dentist and hospital said my ulcers is allergy related and called it Lichen Planus allergy caused by whatever is the culprit, the ulcers usually in the cheeks of the face get swollen, raw and surrounded by white markings and some folk also get a rash on their legs or arms; so far I have noticed that walnuts, peanuts, almonds almost cause a tingle right away and some fruit spreads, also sultana fruit bun gave me a huge ulcer within 3 hours but the Betnesol rinse is good and doc said just swish it around the mouth and not to swallow as it is a steroid tablet. I think it is good to keep ulcers under control but I hope to find the real cause of what I am allergic to.
Hope this helps someone out there who has similar problem. |
| Scottie 29 May 10 |
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| I've been suffring with mouth ulcers underneath my lips for about 2 years.Seen so many people but now told nothing can be done apart from Difflam mouth wash.Kingfisher (fennel)toothpaste was a great helpto relieve soreness while cleaning teeth-Health shops.Just been given Betnesol pellets to be dissolved and used as mouth wash.Dr.'s pharmacy not familiar with this.Boots made me Hydrocortizone Pastilles but 20 cost £100!Just googled Betnesol and found these messages such a help.Now about to try Betnesol. |
| Sue 3rd August 10 3 August 10 |
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| I've had Lichen Planus for three years and used Adcortyl in orabase to keep it in check. Now that is no longer available I have been prescribed Betnesol tablets as a mouthwash. There are no instructions as to how many tablets to dissolve in ( I presume ) 10 or 20mls of water. A fellow sufferer I know uses 2 but I'd like some feedback from other users. Something that works as a mouth soother is Aloclair made by Sinclair sold in Boots. |
| Jat 21 August 10 |
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| Ive just started using betnesol tablets as a mouthwash.my doc said use 4 times a day after meals and then nothing to eat or drink for 1 hr after. has anybody else taken these and how long for. the dr said if they are not bad just use twice a day but when you are taking something new you are always very anxious. |
| carol 8 September 10 |
