Eileen - help needed please!!

Hi Beev

Glad to hear you have had a positive diagnosis even though it is another illness to contend with!

There is a large posting on the other forum re Omazerapole? and its side effects I have never taken anything like this luckily

Good news re your bloods and doseage and hope everything continues to improve for you

Best wishes

Rosemary

Hi Beev. Sorry you have another problem on top of the PMR but so pleased to hear that its a mild form and not life threatening . With regards to learning the 'huffing' technique I could send my two teenage grandsons over, they're experts at 'huffing' :puff: Well done you, down to 1mg - I was down to 2.5mg, then had some stress with one of the 'huffing' grandsons, back up to 5mg for a few months and struggling to shrug off even half a mg just now. It amazes me how half of a tiny little white tablet can make so much difference. Anyway, I do hope that everything starts to settle down for you now, they certainly seem to have taken things seriously and investigated thoroughly, all you can ask I guess.

Take care,

Love from Lizzie xxx

Hi Beev

Excellent news about reaching less than 1mg of Pred daily and the blood test result corresponds. So not all bad news, although I can fully understand it would have been even better not to have been diagnosed with another condition but at least everyone now seems to have a handle on it so that you will get the correct treatment that will hopefully ease the symptoms for you.

Rosemary has pointed you in the direction of my post on PPI's (Omeprazole etc) over on our dedicated PMR/GCA forum - well worth a look at, although I guess in your case you may not have a choice other than to take a PPI.

I expect you're feeling like another holiday now, Beev, after all the tests and appointments, but let's hope you continue to have a smooth journey to zero Pred very shortly and then at least one problem will be 'done and dusted'! Hopefully, the new one will improve with treatment really quickly, fingers crossed for you.

Shirley(MrsO)

That's good news - if it's just mild bronchiectasis they should be able to manage it well. And someone is finally taking the rest properly seriously - about time too.

Good luck and do keep us posted.

Good holiday?? We've just have 12 lovely days on Lake Garda with our caravan (it lives there all year, just have to tow it round the corner!). Did absolutely NOTHING (well, I worked for 3 days, but that doesn't count)

Eileen

Hi Eileen,

Lucky you being in the lake garda area.

We have been there several times in the past and love all the little towns and their restaurants....so cheap compared to Dublin :lol:. We usually stay in the Pesciera area as it is convenient for the Gardaland theme park and Verona.

Every town seems to have their own art gallery too, which we all enjoy as all of us are amateur artists and love admiring the various styles on offer.....can't afford most of them unfortunately !!!

The only thing I do not like is swimming in the lake itself as I hate that slimy feeling of the ground underfoot and all the fish bumping off your legs :wink: :shock:

Hope you had a great time there with the odd glass of \"vino bianco\".

Love,

Pauline.

Hi all

Thank you all for your interest in my non-pmr problems. I just wonder if they will all be related eventually! I have all my bloods back now - all normal except IgE high (155) (should be below 81 apparently). My esinophil count was borderline, but specialist said she wasn't concerned about that. She hadn't expected either of my last 2 blood tests to sshow abnormalities. My RAST to Aspergillus was negative.

Any ideas? Eileen?? Come on now - back to work after all that time on Lake Garda!! And why does work not count as work??? Or did you blot it out with the red stuff?

One more thing - I hear mixed reports about mucolytics working. What do you think, Eileen? I think the one they have given me is upsetting my tummy - it's the same one as the French doc gave me (carbocisteine) but his was in medicine form and the one they've given me here is in capsules. The French one didnt seem to upset me - is that possible??

Beev :?

beev - I told you, I don't have to get BACK to work, I worked whilst down there! It doesn't count because when you are freelance you work when the work comes - and you often get plenty of time off when you don't really want it :-( Then, as soon as you are about to pack to go away somewhere, they suddenly wake up and need this report yesterday! The company I do most of my work for do it all the time - it's as if they have a spy on my wall :roll: And no didn't blot it out with red stuff - white and prosecco!!!! 8) :D Different site and loads of restaurants in the tiny village :wink: and on the lake itself.

We used to get carbocysteine for the girls' asthma when they were little in Germany but got the pooh-pooh reaction in the UK when I asked for it - so they have discovered it's useful have they! Always about 20 years behind in the UK (seriously). They had powders in small packets to be dissolved in water to make a nice orange-flavoured drink and they never complained. Certainly different formulations come with different problems and it is always worth asking to try different versions. It's mainly because the \"packing\" of bulkers or coatings or - if you have capsules - the stuff the capsule is made of are the main causes of the bad effects. If you google it you should be able to find what different version there are and there must be a liquid version because I'm sure it is used in cystic fibrosis to make the mucus more liquid so it is easier to cough up and that is primarily a problem for children.

Pauline - we were at Pacengo, between Canevaworld and Gardaworld. Have been to Peschiera lots of times too. There were maxi caravans sitting just above the lake with the most amazing view across to Sirmione (when you could see it for haze :roll: ) which would be fab if you didn't have your own (better view actually but also more exposed if it was stormy). I hate the slimey feel in the lake too - never get my feet wet there!

Eileen

Eileen

I've changed to the carbocisteine liquid again (Wed evening - so 3 days ago) but so far I'm still getting stomach symptoms - dull aches, malaise, slight nausea, indigestion and heartburn - and all that while on 40mg Omeprazole! Its only since the Carbo capsules though. Feeling really fed-up and very tired. I took Friday off work as I couldnt face it - sorry to be so negative. Red wine helps a bit tho :wink:

Do you know about the efficacity of salt inhalation?? My son researched it all and sent me a Salitair thing. I'm wondering if it could replace the Carbo if I can't take it??

Or I suppose it could just be my reflux/stomach getting worse - haven't had heartburn symptoms for months though (just a few days after the 1mg uncoated tablets)

Beev

Hi beev - sorry to hear you still have some problems.

It took a while to find as most sources claimed there are very few side effects with carbocisteine :roll: but it can cause nausea etc - and of course if you DO have any excessive gastric mucous it will also make that more liquid so that could make you feel a bit yucky. However - I finally found one site that recommended taking it as part of a meal to reduce gastrointestinal effects. You say you are taking it at night - with, after dinner or waiting until later? Maybe in the morning might help so that you get the mucous up during the day - if it is liquifying during the night and then you are swallowing it that could well make you feel quite nauseous (sorry about the graphic thoughts!).

Salt inhalation for asthma and other lung diseases is popular over here - at least in the form of cures where the patients visit salt mines and sit around like you do on the side of a pool! Well wrapped up, of course. Many find it helps a lot but whether that is due to reducing the sensitivity of the pulmonary system to any triggers or wheher it actually reduces inflammation I don't know offhand. If you have a machine why not try it - you could use both for a bit and then try reducing the carbocisteine and see if you are any better. How often have you to report to the doctor about it?

I'll have a longer look later and see what I can find amongst the German stuff :wink: (they are very in to much more natural treatments) but I do have a translation to do first - left it yesterday to enjoy our last day of high summer which ended abruptly in the evening with big thunderstorms and today it is expected to get colder and more thunder as well so working is no trial! Even snow down relatively low (1000m in Germany/Asutria).

Eileen

Beev - if you've got a Salitair, it would be well worth trying it. I've got one and found it very helpful before we moved down to the coast. Since being here I haven't needed it, but I do keep it handy, particularly during the winter months.

It can take a while before you feel any benefit, I think the first time I used mine, after 3 weeks I was vaguely wondering if it was worth it, when I realised I hadn't been coughing for several days.

I don't believe that trying it out is going to hurt anything as really I'm doing it all the time now that I'm so close to the sea.

Nefret/Catie

Thanks again Eileen.

I've looked on the bit of paper with the French Carbo bottle, and it says it can cause numerous side-effects in some people, of the tummy variety. Says to reduce if that happens. Thing is I didn't get that problem for the first 2 or 3 weeks in France.

The specialist asked me to take this dose and I won't be seeing her til 4th Nov.. I think I'd better try a bit longer on this dose as I've noticed that the older we get, the longer it seems to take for any inflammation to die down. If the capsules did irritate me, I might need a bit longer.

It also says on the paper that you shouldnt take it if you have a peptic ulcer. That kind of suggests to me that the Carbo creates excess acid in stomach.

I am taking it immediately after meals.

I'm really concerned incase its not the Carbo - but rather that my stomach is getting worse.

I've not been too bad today but had to take some Gaviscon after lunch which seems rather extreme when on double dose Omeprazole. Nausea is only slight and occasional - more a feeling of general malaise, some tummy aches and some feelings of acid rising up to my throat. Yesterday evening I had sudden severe pains across my whole chest area - lasted about 10 mins.. I suppose it was an oesophageal spasm?!

I will ask her about the salt in November but I bet she poo poos it - English medical people tend to with anything natural.

I have no mucus that i am aware of at all at the moment - been that way for about 3 weeks at least.

Happy translating. Do you do Italian into English?

Beev

I may live in Italy but my Italian leaves a great deal to be desired - as is usual I understand a lot more than I can say but I can communicate reasonably well with someone sympathetic! We lived in Germany for about 10 years during the 80s and I learnt German then and started translating for my husband's Uni department - German to English and initially in my specialist field of physiology and medicine. Now I''ll have a go at anything you offer me! Don't need perfect German - just perfect English!

The area here in the north used to be part of Austria until the end of the first war when it was handed over to Italy by the Allies as a reward. The further north you are the more likely it is they speak German as their first language and they do struggle with Italian if they don't need it in their work with tourists. It is an autonomous region and German is an official language. The easiest way to learn a language is to have TV on - but Berlusconi TV is SO awful it just doesn't work! Tits and bums about sums it up! Which is why the locals don't watch it either :roll:

The fact you were fine in France does suggest there is something in the UK version that doesn't agree with you - is there another you can try? The GP should be able to advise. I agree with Catie - try the machine thing - if it doesn't help - don't mention it! But yes you're right - the British medical establishment are very snotty about things that don't speak English :wink: - the German recommendations for PMR are what we have been saying as lay persons for months - very slow and very steady reductions of pred and anything under 10mg/day is just fine. Big meeting in Munich recently and the PMR/GCA session was packed to hear that!

Eileen

Eileen, how do you get started in translation work?? We are both French graduates and David is near native as he lived in Algiers when he was a child and attended a French school. We both speak German reasonably well -that is, mine is very rusty but I can understand most.

I think (famous last words) my tummy might be settling very slowly. Like I said, nowadays any inflammation seems to take ages to calm down. Ive looked on the ingredients and the coating on the capsules could certainly have been the problem. The only difference between the French and English liquid is some flavouring as far as I can see.

I have my Gastroscopy in 2 weeks and am supposed to do it while on the 40mg Omep - so I hope they dont expect me to do another with 20mg Omep!!! Have you ever had a gastroscopy?? Its horrible. :cry:

Im loathe to try anything different at the mo until I see the pulmonary specialist again as I don't want the unpleasant mucus etc to start! maybe further down the track.

Berlusconi TV sounds lovely!! :lol:

Beev

Hi all

Mainly a few questions for Eileen again, I'm afraid!

I let my respiratory specialist know by email today about my latest 2 blood test results as my GP had forgotten to do so (after 2 weeks of asking!). Her Sec sent an email back to say that no action was needed despite my IgE being substantially higher than it should be (155 when it shouldn't be higher than 80).

Can I insist on having allergy testing?? And am I justified in asking for that with that result or does it actually mean nothing??!!

By the way, I have reduced my Omeprazole back to 20mg without prob and reduced Carbocisteine to 10ml 3 times a day. I had thought my tummy was ok after the reduction, but it has restarted - any suggestions? Seems to get worse a couple of hours after eating - better when I eat.

Feeling rough again. Have been signed off now til Mon week.

Thanks

Beev

Translating - have a physiology degree and medical background and then we went to live in Germany. The physiology institute where David was working gave him all the English stuff to do until he said, no, Eileen can do it and you pay her! Then I got a contact with a local market research company. Later Siemens were looking for freelancers as backup so I got to work in their department at the power station section to learn their foibles so I can say I'm trained! Now it is just second nature and I read English and type German with very few corrections - I'm sure people could argue about semantics but I can hold my end up! When we went to Germany I spoke no German at all and it was about a year before I was able to consider doing much beyond David's department's stuff - he checked it all and my English physiology knowledge was good enough anyway (better than his, he was a physicist before :roll: )

The other stuff - not sure offhand beev and am in London for a wedding at the moment so surfing and seeking isn't that easy. There has to be something going on with that IgE level I'd have thought but the Brits are a bit behindhand in coming forward when it comes to allergy - you'd be dealt with in Germany and from what you say, also in France. Must also be allergy specialists here - what am I talking about, I saw one, immunology is the dept you want. If the respiratory people won't play, try asking for a referral to immunology, or at least a query to them as a start.

Eileen