Hi,
I'm just reading this conversation with interest. I was put on this combination of medicines about two weeks ago. I took it for nine days, and then had to stop. I cannot describe the agony I was in. My tongue felt as if it had had the skin stripped off and all the nerve endings exposed around the side of it. Underneath the tongue (the frenulum and lingua frenulum, I think) it was a virulent red, with some stark white patches, which look now like ulcers, but which I couldn't identify at the time. They looked exactly like another row of teeth growing under my tongue, with these violent red lines around and through them. I had ulcers on my tongue and inside my lips. I thank heaven that I stopped taking them when I did, as the effects continued to build after I stopped them. My bottom lip went completely numb, and part of my chin went numb, and looked swollen. I am still dribbling uncontrollably, and have to sleep on a towel. More ulcers continued to explode into my mouth after I stopped taking it. I keep seeing different doctors and being given different things 'to help' but the truth is that nothing except strong pain killers begin to touch the pain I'm in. I haven't been able to eat solid food for a week, and am often very hungry.
Tips for anyone who is suffering. (Some of these may have been said already, but I'll put them down as I think of them). Half a teaspoon of salt dissolved in half a cup of warm water. I don't think it has to be warm though. I've used this cold, if I've had some left over.
Sage tea. I've always used this for sore throats. It's incredibly healing. Drink it, gargle with it, hold it in your mouth for as long as you can. (i've found it easier to do it in very short bursts! Same with the salt.)
TO EAT:
My daughter got me some breakfast shakes. I didn't know such a thing existed. They're completely liquid but nourishing, as they're meant to serve as breakfast. The ones she got me are 'Weetabix on the Go', but there may be others.
Soup is an obvious one (and for idiots like me who think it has to be fresh there are tins out there! Chicken soup - smooth! - is probably the most soothing.) I've only just worked out that, if you buy bread that is soft in the middle you can scoop the middle out and soak bits in your soup. (Beware - a lot of bread is quite hard, but crusty bread is usually soft). I do masses of tiny pieces in the bottom of the bowl, and it's a bit more nourishing than it would be without it.
Porridge. I'm on my own and usually can't cope at breakfast time. I've been staggering out to a local cafe that does porridge with banana and maple syrup. The banana is cut very fine, and sliced in the porridge, and I add lots of cold milk. It takes me a long time, but it does make a meal.
I've been taking three different painkillers, and - as my digestion is also affected - I worry about the ibuprofen. When you're not having meals it's hard to take it with a meal, but I try and take it with a glass of milk if I can't eat anything.
So, just off to see the GP again, as it's still too painful to eat, and I want to know that my chin and lip will go back to normal. My mother revealed yesterday that her sister (my auntie) didn't die from her cancer (which was the same oestrogen receptive type as mine): she died from a drug that was being tested that caused her stomach to become ulcerated, as well. (This was 1997). I have had many serious problems throughout my life, but only a broken elbow that was allowed to swell in the plaster as I slept was a comparable degree of pain. I'm pretty stoical, but I kept crying with that, and I keep crying with this. It is terrible, and anyone who has mouth ulcers, swelling, vicious redness (check under the tongue too), and who can't eat without intense pain, should talk to the doctor about changing medicine. Drugs can kill, and I honestly think this one would have killed me if I hadn't stopped it when I did.
Incidentally my sister in law has just told me that her father also died of ulceration and bleeding from tablets he was on for arthritis. (Methoxetrate, which is also, apparently, prescribed when women have ectopic pregnancies.) Some people can take them with almost no effect, and some they kill. I think doctors are still very cavalier about what they prescribe (but my sister, who did apparently know about our auntie) refused every kind of medical help and died a very painful - and unnecessary death). Use discrimination, but if this medicine is causing you unbearable suffering you definitely need to change. If you've run out of choices then you are the only one who can decide.
I hope this post will be of help to others. Sorry to sound so bleak.
Pippa
