On another note..

Hi BFL friends,

I told you I had LAM a couple of years ago..I am stable presently. I also have been diagnosed with adrenal glands insufficiency due to steroids intake, inhalers and for chest infections really so they got lazy so now I am on prednisone daily.

I have my blood tests lab results, I have to see the specialist on the 8th, any clues in the meantime??

It is a follow-up one because the doctor was not too happy, somehow suspecting a connective disease.

Well Sjorgren is out for sure..that’s good.

Lymphocytes are higher but not the total.

Proteins are lower than the norm

IgG also

IgA is back up

Beta and Gamma Globulins are lower also

Immunofixation is discreetly abnormal, it was 2 months ago which is why I did it again, now it says test proteins again in 6 months.

Rhumatoid factors are higher than the norm, same as last time

Hemostasis has been sent to Geneva Hospital so I don’t have it yet.

Thanks guys x

Fran

[sassy59]

No idea Fran, l don’t want to speculate. In my family we have sarcoidosis (Pete) and SLE (lupus) which our daughter-in-law has.

Good luck to you and wishing you well. Xxxx

[Hidden in reply to sassy59]

Thanks Carole I understand🌸

I thought I would give it a try in case someone had a similar experience. 🤞

You have your fair share then..😢

Thank you xx

[sassy59 in reply to Hidden]

Yes Fran, maybe somebody will reply and be able to help you. I hope so 👍

Our daughter-in-law has lupus and breast cancer but she’s doing better now thank goodness.

You take care xxx 😘

[skischool]

Happy Fran Like many others we have no idea what you blood test results mean,i have just tried to educate myself a bit on LAMS and now realise how complex your condition is.i found some info referring to a new treatment medicine,are you on it or is this info very old?

Possible new treatments for LAM

Researchers are now studying several medicines as possible treatments for LAM, including rapamycin.

Rapamycin (sirolimus) is the first drug to show promise as a treatment that will slow or stop the development and growth of the LAM cell clusters. Doctors now use it to prevent the immune system from rejecting kidney transplants. Researchers are looking into whether this medicine can reduce the size of kidney AMLs in LAM and tuberous sclerosis complex (TSC) patients. They also are planning a larger study of the effects of rapamycin, or another drug like it, on TSC and LAM patients. This study will test whether the drug can prevent or reverse the growth of the LAM cell clusters and cysts in other organs and slow the decline of lung function.

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[Hidden in reply to skischool]

Thank you Skischool that is kind of you 😊 I have sporadic pulmonary LAM.

Yes sirolimus slows down tumour cell growth..no, going back to Lyons Hospital in a year to see if I qualify then. Consultant said for now the side effects would exceed the benefits. I think it is the correct diagnosis in my case, I am highly sensitive to medication.

So I have 3 monthly pfts, and the VEGF-D blood marker once a year.

It is well monitored. I have 4 inhalers, a nebuliser and steroids. Pulmonary rehab and respiratory physio help too.

In the States they are more proactive they now give Rapamycin sooner than later. It is an expensive drug as well.

My main risk is cyst rupture..very uncomfortable😃

Anyway thanks again x

Fran

[skischool in reply to Hidden]

you sound like you are very much in control over the treatment of your condition and i admire you for that,well done as i imagine careful management increases the opportunity to live as normal a life as possible.and you give the impression you are active and busy and happy as the name suggests......................skis and scruff x

[Hidden in reply to skischool]

Thank you Skischool for your kind words 😊. Well it took a while to find out it wasn’t just severe asthma, with diagnosis comes relief in a way, acceptance is a different ski slope^^

Xx

[Hidden in reply to skischool]

Hi skischool I have just tried responding to you after seeing you had read happyLondons post regarding lam .. anyway as I'm struggling to get used to this site my reply to u went to happy London so pls take a min to read it if at all poss kind sir...sorry if I'm confusing you as I'm defo confusing myself a very confused mel plus 1 large cat ..

[Hidden in reply to skischool]

Yes skischool i too have LAM unfortunately at a different stage as fran as im on full time oxygen and suffered type l l respiratory failure back in Feb almost costing me my life and I am on sirilimus (rapamycin). It has made me quite poorly as its an immuno suppressant so have suffered some side effects but the side effects are worth it if the medication does slow the process of LAM down as like i mention alot im only 43 so not quite ready for the hotel in the sky just yet ha ha . Nice to get acquainted with you as i too have a cat he is a mass of black furry loveliness who holds the title of being the largest (in other words obese) cat the vets surgery has ever had so much so I have to pay 5 pound extra a month for my vets direct debit until he loses few pounds then it will reduce down in price... I call him special but in reality he is a greedy so and so but one who runs away from mice bugs obviously too lazy to hunt xx mel xx

[Hidden in reply to Hidden]

So sorry Kemety you said you would tell me about it. How awful, I am glad you survived that episode. For now because of my low immune system and the adrenal glands insufficiency the pulmonologist thinks it is not appropriate, we’ll see.

I am glad you like Aria and have a lovely cat! I will post a cat photo for you.

Take care xx

Fran

[Hidden in reply to Hidden]

Yes sorry Fran I'm getting very confused with who I'm replying to as seem to be sending replies to wrong people . Anyone I too have sporadic lam and so far have not had a lung collapse but still hope and pray I get some sort of good news in the future as u know I'm screwed without the transplant ... u on the other hand sound very fit and active which is great xxxxx

[Hidden in reply to Hidden]

I sincerely hope you will get a chance of a transplant. You are kind I try ..every day is a challenge 🌺🌸🌷

[Namzug2 in reply to Hidden]

Like your upbeat attitude

[Hidden in reply to Namzug2]

Thank you Nam 😊

[skischool in reply to Hidden]

Hi Kemety this is skis or should i say Happy skis and then it won't matter who you reply to lol it could be both of us.As i was saying to Fran your conditions are so complex it is hard for us simple copd/emphy people to get our heads around.I do hope the drugs regime however unpleasant is doing the business of slowing down complications,as you say you are far too young for visiting other planets and need your meds team to give you the best quality of life possible.Your rather large bundle of black fur sounds good company,my somewhat smaller adopted bundle of tabbyness is quite happy to sit by my side and lives on treats because she is to lazy to eat proper meals,i am sure she has lung disease like me given her weak appetite and i wonder if she pinches my ambulatory o2 whilst i am asleep and it is not fur balls she coughs up,but i don't think the Gp would be pleased if i took her sample in.Take care my love....................skis and scrufifneta.xx

[Hidden in reply to skischool]

Ha ha ha my black bundle of fur also is too lazy to eat a stable diet and used to live off treats plus ham and chicken alongside his whiskas .. but no more!!!my lovely feline is now on cat watchers ( aka weight watchers for fat felines )..so far he has done us proud but we havent had the long awaited weigh in which happens monday ...to be continued ... '

[Hidden in reply to Hidden]

We are having weight problems because Aria was sterilised so she lives on food and affection which means more food so she is having a special make. I will ask my daughter what she buys, can’t remember. And her dry food is digestive food.

Anyway she is plumpish 😉 and very 😊

[Namzug2 in reply to Hidden]

Remember excirsise him too use later pointer and little catnip if it doesn't make him too crazy! Maybe a Bird stick!

[Hidden in reply to Namzug2]

Haha..good tips x

[Hidden in reply to Namzug2]

Hi never owned a cat until now and had never heard of catnip until I bought a little toy with a tube of catnip but wasn't sure what I was supposed do with it sprinkle it in the toy or leave it in the sealed tube so just threw it away ..ha ha so always wondered since what catnip is as been told different things xx

[Namzug2 in reply to Hidden]

I've even put some into my crew sox .tied them off gave them to the cat. That was enough.

[Fennella02]

Hi. Just wondering why sjogrens is not an option? Whilst some may have the stNdard antibodies, many, many do not and dx is either based on a lip biopsy or is presumptive. No connective tissues disease is easy to diagnose. I've had mine for nearly 30 years but have little in the way of antibodies. Good luck with your tests x

[Hidden in reply to Fennella02]

Hi Clare

So sorry to hear that. Thank you for sharing. I had all the possible Sjorgren tests by now and they were all negative. Apart from the schimmer eye test, no tears at all. Saliva and specific blood tests are negative.

Thanks again xx

Fran

[Hidden]

Hi fran did you ever have a lung collapse ?? I also got told i have sporadic lam but they did think i had langerhancellhystiocytosis apologies if spealt wrong ..

[Hidden in reply to Hidden]

I have had small cyst ruptures because of air trapping but no collapse! Luckily! Now I have cysts all around the thyroid as well..I had a large one out..

Never heard of anything else apart from TSC. Pulmonologist diagnosed LAM straight away VEGF-D is 608.

[Hidden]

I know my test which was a blood test was a 1000 for something but not sure what off the top of my head but haven' got my paperwork with me as at mums which is in line with cystic lung disease (lam) but i have multiple cysts on both lungs and when it shows you on the ct scan u can just make out loads of black dots which is the cysts ...

[Hidden in reply to Hidden]

Exactly like me..Loads of black dots..

Anyway I have to leave you now as I have been with Dad all day the neurologist diagnosed a neuro degenerative disease so I am very tired and a little upset because he said it will be fast.

Take care Kemety xx

[Hidden in reply to Hidden]

Oh im ever so sorry fran xxxxloads of love heading ur way xxx

[Hidden in reply to Hidden]

Thanks Mel xxx loads of love back!!

[Hidden]

Hi HL. Can I ask, what dose of pred are you on? Presumably it's intended as both steroid replacement therapy AND for reduction of inflammation? I take hydrocortisone 20mg per day for adrenal insufficiency, and 30 or 40mg prednisone with a chest infection, but a maintenance dose of pred has been suggested (I'm reluctant, as that's what banjaxed my adrenals in the first place). Any advice welcome! I don't have LAM - asthma, bronchiectasis & aspergillosis.

[Hidden in reply to Hidden]

Hi Hanne. Yes prednisone is better for inflammation as well as adrenal insufficiency I was told.

[Hidden in reply to Hidden]

2. I am writing in different parts because my first message disappeared before I got a chance to finish 😃

[Hidden in reply to Hidden]

3. In fact I started on 20mg on the 7/09 for 5 days then 15mg for 3 days then 10mg for 3 days

[Hidden in reply to Hidden]

4. Pulmonologist warned me that I would have side effects above 10mg like putting on weight, more bruising an d osteoporosis. I already have osteopenia.

[Hidden in reply to Hidden]

5. It changed my life. I was so tired, I had pains in my limbs day and night that I could hardly walk in the end.

[Hidden in reply to Hidden]

6. I have a chart to follow, how to increase for a moderate physical stress, like going to the dentist or having a small op with local anesthesia, a virus with no temperature I have to increase the dosage to 1.5/2

[Hidden in reply to Hidden]

7. I am allowed 30 mn of exercising a day on my dosage if not increase again, or if I travel

You go on like that to higher stress up to x2 to x3 your dosage.

[Hidden in reply to Hidden]

8. So far I have had one op and one virus! I have been up to 15mg this week with the virus..

[Hidden in reply to Hidden]

9. All in all I have a card I have to monitor myself, I have water retention so I cut down on salt and ecchymoses on my arms but I feel better, less tired, little pain, life is worth living again.

Too early to tell you if there will be other consequences but Hanne I made a choice to make the best of the present, be comfortable..who knows about the future anyway..I let go of all that when I was diagnosed with a rare disease.

Take good care of yourself Hanne x

Fran

[Hidden in reply to Hidden]

Yes, me too, though in practice I normally just double it. OK thanks, that's really helpful. Those limb pains are classic signs. I was on 10mg maintenance pred before, then managed to get it down to 5. We'll see. Good luck, glad you feel so much better!

[Hidden in reply to Hidden]

Thank you for the info Hanne. Glad you feel better too xx I hope I will get it down to 5mg but not up to it yet.

[mrsmummy in reply to Hidden]

You can open up and edit a reply by using the little 'v' button next to the 'Like' button at the bottom of the box.

[Hidden in reply to mrsmummy]

Can’t see a v button yet mrsmummy but thank you I will try to work it out.

[mrsmummy in reply to Hidden]

You pressed 'Reply' to answer me and 'Like'. The next thing along in that row is the 'v' that you can use to edit your own posts/replies.

[Hidden in reply to mrsmummy]

I have little dots I saw edit and did it but the page disappeared I am on iphone

[mrsmummy in reply to Hidden]

Sorry - okay use the dots, edit your reply then submit it again.

[Hidden in reply to mrsmummy]

Sorry about that the app just closed..could be my internet connection

[Hidden]

Haha..Catnip is magic!! We have mice stuffed with catnip for Aria. A good game!

[twolungs]

Hi happylondon, I was diagnosed with lam in July 2016. I go to the Nottingham clinic under care of Dr Johnson. Also use Lam action patient email group. Mild and stable with me, just keep getting colds and jumped on here for advice. I wish you well and hope u fine the answers.

[Hidden in reply to twolungs]

Hi twolungs 😊

Pleased to meet you. I have met Kemety on this site so far. I joined the Lammies on FB, an international group sponsored by the American LAM foundation. I belong to FLAM, the French association. I am presently translating American research into French for FLAM..hard work 😃

But I am learning a lot at the same time.

My sporadic LAM is stable too but I take many more meds than I used to in order to keep it stable..so it is evolving I think..

I wish you well too. I am here for you if you need anything 🌸🌷🌺

Fran x

[Hidden in reply to twolungs]

Hi twolungs I too have lam and attend Nottingham under Mr Johnson. Unfortunately I have had a bad year but b4 that I was not too bad ... I'm on oxygen 2r hours and currently awaiting a 3 day assessment in the hope of a double lung transplant .if u look after what u eat .. sleep well and keep yourself fit things may be fine for years but unfortunately for me I had type ll respiratory failure in Feb at the age of 42 and was given 2 hours to live on 3 occasions luckily the brilliant lam team told my hospital all the meds I was on once I came thru the worst . Stay strong and remember every patient is different and u can live a happy long life x

[Hidden in reply to Hidden]

Meant oxygen 24 hours a day

[Hidden in reply to Hidden]

@kemety @twolungs

Now we find each other we keep close. There will always be a place for you in Switzerland if you need a break and fresh air xx

Fran

[Hidden in reply to Hidden]

Oh thanks that would be lovely .. one day perhaps after my lung transplant my god what a day It would be so would love to see Switzerland and aria and yourself ! Wishful thinking but not impossible eh Fran xxxso fingers crossed all goes well with my assessment for double lung transplant xxxxx

[Hidden in reply to Hidden]

Fingers crossed. Take the time you need to feel strong and ready xx