When I was hospitalised after a severe asthma attack, my specialist increased my dose to 600 mg of Symbicourt, twice a day. My doctor now says that she is being forced to cut me down to 400mg twice a day by the Ministry in Paris.
I have twice tried to cut down to 400mg a day with disastrous results. I make more fluid which leads to severe coughing attacks and needing to use my reliever.
I am wondering if anyone else has come across this and what was the outcome.
I know I can go back to my specialist, but she has supposed to have been monitoring me for the nodules in my lungs, but she hasn’t. She wanted me to go to hospital in Lyon and have the largest one removed and also a portion of my lung.
She took my case to interdisciplinary committee of the hospital in Macon, and surveillance was the decision there, which she, obviously disagreed with.
I am in a bind, I need my prescription increasing, but don’t want to go to war with my specialist.
When my Doctor “was forced” to change my medication, he was able to give me the full reasoning behind the decision which had come “from above”.
Has your Doctor got this sort of information… if not, can he get it ???
It is to do with the amount of steroid they think I should be having.
Some clever clogs obviously thinks that at 75 it is more dangerous to keep my asthma under control than to risk the danger of an attack and hospitalisation.
Does it come as tablets? Can’t you just be given a prescription for eg X amount of tablets and then take the amount you are used to? The wording on the prescription can be adjusted I think.
Has your Doctor told you what is more dangerous to keep your asthma under control…?? what is the likely bad effect of higher dosage??
For me, it was the highly-likely dangerous effect on my currently perfect heart…
and once I knew that, the decision to change medication was easy to accept.
Hello Jane
I am afraid you are the victim of the financial system gripping France. All us retired thinking S1 an carte vital 100% would look after us that is no longer the case.
I had a Neurological stroke which left me parallelized left hand side, when the medical treatment time was up I was to begin reabilitation due to lack of capacity in Cahors I was moved to a private center to live in on 100% and told it could take 6 months to a year to walk again. The center started treatment 3 hrs per day 5 days per week. After about 16 weeks I was told my treatment is over you are going to a Maison de Reatret next day. Despite all my protests i was put in a car and sent. This center charged €10,000 per month for45hrs per week, if I was lucky.My bill was €39,000. excluding food €2300 plus.
At the MAISON de Reatret I was told from now you have to pay for your care €1982 per month and have had no help co recover,
I have been given two reasons for stopping my treatment 1 ) The French did not trust the UK to pay the bill.
2) The brain surgeon checked and told me there was no money available for further care. due to the French financial situation.
I have had the same with anti-inflammatories… Had 90mg for years and suddenly it was decided on the basis of research that the risk of heart attacks was significantly elevated over 60mg. So now only prescribed 60mg. I get 30mg tablets and do juggle…so very good days 30mg, normal days 60mg, and have a small reserve for the really crap days.
These things are not done on a whim, but use the average population as a measure. I considered arguing as I have cardiac monitoring which shows my risks are low and have good BMI, BP and cholesterol. But decided to deal with it my way instead.
Do you know what the risk is that they are concerned about? And if so are you able to put up a case that you should not be treated as Ms Average?
Sorry Yorky, but that was never the case. Having an S1 gives you exactly the same rights as a French person. I have a 100% ALD and it only covers me 100% for treatments that are at the standard social security cost. Any higher than the basic and I have to pay the difference. There is never a possibility that the UK will pay the excess, so whoever said that was completely wrong. Or confusing it with the removal of the free mutuelle for people of all nationalities on an S1.
I have French friend who had a catastrophic heart attack, and he was only eligible to 4 months rehab.
Have you been in touch with the Assistant Sociale in your commune you can help you check what you are eligible for? And maybe co-ordinate with your GP about getting some rehab in your maison de retraite. They don’t normally have any rehab facilities in-house, but if prescribed by your GP then a physio can visit.
I think quite a few people being used to a health service that is free at the point of use don’t quite understand the French system. But per person the health spend here is far higher than in the UK and in my mind is much better.
I am told that someone in the Ministry of
Health thinks that 400mcg twice a day is the limit for steroids.
I have written to my MT telling her what happens to me when I try to reduce it and reminding her that is my specialist’s recommendation.
I personally think steroids are one of the most dangerous drugs. They trick you with their often instant and magical effects, meanwhile behind the scenes they are wrecking your bones, opening you to infections and generally playing havoc with your systems. I call oral steroids devil’s tic-tacs.
Can you discuss with your doc whether there are other drugs that could be used to replace inhaled steroids?
Very sorry to hear about this @Yorky1. Were those reasons given to you by anyone official?
Also, do you have the feeling more supportive options, or less, could have been found for you if you were in a different départment?
I call coughing so badly that I can hardly breathe the devil’s work too.
I am at risk of being hospitalised if I can’t keep my asthma under control.
I’m just wondering when was the last time your Specialist recommended this dosage…??
It’s possible that your Specialist might now have other ideas… ??
Just a thought…
Indeed!
What type of asthma do you have? A game changer that made it possible for me to come off steroids was the introduction of biologic drugs. I have a totally different disease of course, but I know they have also now been developed for eosinophilic asthma,
Age is such a b&£ at times, and while I understand these safety thresholds there really should be a personal choice between quality and quantity of life. No point me living to 99 if I’m stuck in bed in pain 24/7. Mind you adding in osteoporosis is not something I want either, so pleased to ditch the steroids.
Hope you have a receptive specialist to discuss options with.
I am pretty sure that I had a complete blood count when I was in hospital.
I have wet asthma.
Thank you Karenlot for your kind comments. YES one a neurological surgeon ,who wrote to tell, me there was no more money for further treatment. one a doctor and the Director of the home.
I do feel I could have had a lot more support but the medical situation is stretched, and language comes in to the question. Its all very complicated. As I sit here in my wheelchair ,using my good hand,
, thank you
Do you have a friend or family member who is fluent in French who could advocate on your behalf? And has your assistant social not suggested any support? There may well be things available but here you tend to have to ask, and sometimes push.
I’m sorry this has happened to you, so hope you do find a way to get more rehab.
It must be awful, being ill and (perhaps) not fully understanding what is going on and/or why.
The Assistant Sociale is there to help folk and (as has been suggested) can you ask someone you know who does speak French… to make enquiries on your behalf.
I’m wondering if your Mutuelle reached its limit and will not pay its part for further rehabiliation treatment ???
After a bad accident some years ago… a French friend advised me to push for enough rehab to get me walking again properly… don’t accept when they say “that’s enough”.
Thankfully I had a Mutuelle and a good Doctor who both played their part and I can now run and jump as before…
best of luck
but can you still take a running jump 
Thank you.
As my situation is very long and complicated is there a way to email you privately?
Yorky1