Asthma UK community forum


Hi Asthma Friends

Middle of the night again, 2 vento + 2 atrovent again..

I had the specialist appointment in Lyons with Professeur Cottin last week. He was very good, answered all my doubts. he was dictating his report straight away in front of me, checking I trust!

The sporadic LAM,my cystic lung disease, is light and will progress slowly.

Should there be a further drop in respiratory functions he would start me on sirolimus but there are a lot of bad side effects so they tend to wait..

If I have the slightest chest pain I need to go for an x-ray not if I only have a stabbing pain like they told me here, it can be a small persistent chest pain.

If I get bronchitis I need to have antibiotics and steroids asap.

I still have asthma although the breathlessness is more from the LAM, because I am breathless when I make no effort like nocturnal asthma. I have to carry on with asthma inhalers.

He is not for me to take azithromycin 3 times a week like they had suggested as preventative it is ineffective.

In France they give 2 anti-pneumo jabs, the Prevenar and 2 months later the Pneumo 23. Well too late for me we only have Prevenar now, I told him Pneumo 23 is out.

He doesn't think the endocrinologist will discover anything about my immune system, figures are in line with LAM patients.

We redid the VEGF blood test because they had messed it up here, first of all they didn't give me the proper test, then they said it was 444 when I had 608 six months ago so I was not sure if it was correct, I will see what the results are now.

He eliminated connectives like Sjorgren, they wanted me to have a saliva gland biopsy here because of dry eyes, cysts are definitely typical of LAM.

He is for long-term action bronchodilators once or twice in 24h. Oral steroids should only be taken for a few days with antibiotics when I have an infection but to keep them to a minimum. Salbutamol and Ipatropium nebs are ok.

We will meet again in 2 years unless something changes, my respiratory specialist will do six monthly check-ups.

I didn't do very well in the cabin, my lung capacity was low I am just so tired at the moment but the nurse wasn't not going to give up, she pushed so hard I thought I was going to have an attack! I said that's enough I can't anymore I need my meds. She gave me a blood test to see my hemoglobin. So I must have respiratory physio and exercise again to fight fatigue. Walking is good but he suggested a home bike. Never liked those 😉 I have to investigate prices and that..

I liked the man, he was clear and trustworthy. I found it reassuring.

Reply Like (0)

6 Replies

Sounds as though you got to see an excellent and very knowledgeable health professional who took time to listen to you.

1 like

Thank you Asthma-girl hope it all works out! Hope you are feeling better. Keep in touch :)))


Hi , you are having some time of it , i have what my consultant calls difficult to control asthma and another lung condition which is one of three things but they can't do a lung byopsi as I am not fit for it so apparently the treatment is the same for all three diagnosis, im currently one mycrpheolate fetil for the other lung conditions but I was on azithromycin but was changed to co- trimoxazole in September last year but I am not sure if they are making any difference either as i also was started on 24/7 oxygen.

Fingers crossed for a better year for all

Loraine x

1 like

Hi Lorraine thank sounds like trial and error hey..I hope they will find the right treatment for you..this is the new stuff apparently or Rapamycin..both have bad side effects so I don't know we'll see in a couple of years..Good luck to you, take care xx


Oh my, that's quite a start to the new year! It is good however that you have found someone you feel you can trust on this complex journey. I'm sorry I can't help with any advice, but hopefully what you find will help others on here. As always good luck on your travels. I foolishly missed my specialist appointment, re oxygen treatment, my foggy brain got two appointments mixed up and I missed them both! Take care..... Gino

1 like

Thank you Gino..yes at last somebody who seems to understand the mechanisms of this disease..but it is not next now I hope they will follow up here if you see what I appointment wednesday..I get fed up with all those appointments too..avoidance is not the issue unfortunately I must plod on..

You need a diary my friend :))) with reminders!!! A human one is the best^^Take care Gino xx


You may also like...