Eileen - help needed please!!

Bones, joints and muscles
1

Hi Eileen

We all seem to rely on you.An unpaid job?!

I ended up in A & E last night with breathing problems. They said I appeared to have a bad chest infection. They have taken some of gunk to analyse (at last) and in meantime have given me 7 days of Amoxycillin 500mg X 3 times a day. They said I might need longer.

They said I should also really be taking 30mg Pred for 5 days and then revert to my normal dose (2.5, 0 alt days). I practically screamed in frustration and the doc eventually agreed that I should wait until the results of the culture are back. i will see my lady doc next Tuesday.

Well, Eileen, should I take that dose of Pred?? Will I be able to reduce immediately back to my usual dose after 5 days?? or is it different for us PMR lot??

My 88 yr old father who also has PMR, was erecently in hosp with nasty case of pneumonia and they did not increase his Pred.

If the culture comes back without bugs I shall be really worried. Am seeing ENT consultant privately next Wed, but wonder now if thats apppropriate.

We are off to france on 2nd Aug, and am worried about travelling with these breathing probs..

Another thing, years ago I was tested for Alpha 1 antytrypsin gene (to do with chest problems my husband was having at the time - he came up with 1 good and 1 bad (PiMS) and so did I. That gives me, I believe 80% of the stuff and my blood contained 1.2 (1.1 to 2.1 being normal range). I am worried incase acid reflux from stomach has been aspirated into lungs and that has triggered COPD as a result of that genetic fault. (smoking can apparently trigger it). What do you think? Do you know anything about that??

Thanks Eileen

Beev

2

My daughter is out at A&E with her daughter who had one of her flash asthma attacks this morning! Must be something in the air! :roll: I wish she was here as she worked on the respiratory unit until she went back to Uni to do midwifery.

I think they probably suggested the upping of the dose to help the breathing problems. Your airways will be inflamed with the infection, producing loads of gunk and hence all the problems. If you take the short course of high dose pred you should be able to just drop back to the usual dose just as if you weren't on pred at all, especially as you are on a very low dose. I did something similar a week or so ago and am back on the 15mg I was on before I tried it with no ill effects (was put back up about 3 weeks ago because of ?PMR/GCA probs). The high pred will reduce the airway inflamation pretty quickly and help your recovery. When will they tell you the results of the sputum culture?

Hope you feel much better very soon - and I think if it were me, I would take the pred. I do understand the frustration but it shouldn't make any difference longerterm.

3

I've had a really severe chest infection 3 times in the last few years and they have always upped my Pred to 30mg for 5 days. I did have some problems reducing the last time, but I think that was just me!

I had to go back to 40mg at the end of Feb this year for a GCA flare, and I have now got down to 13.5. I was very upset because I had been on the lowest dose of Pred that I have ever managed to get down to - 2.5mg daily. Still, better having my eyesight than not!

As far as the chest infection goes, I would do it - it does help a great deal. Believe me, I do understand how you feel.

Nefret/Catie

4

Eileen, nefret

Thankyou very much for that. Another question, would the high dose pred mask the problem and make me think I'm better when I'm not??

Beev

5

Eileen

One more question! Will it be ok to reduce direct from the 30mg to my usual 2.5/0 right away from 1 day to the next without taper??

The sputum result should be here prob monday - with a bit of luck Fri.

Did you sort out your poss GCA scare re lungs??

Beev

6

Yes - I think you can just take the 5 days and go back to normal without too much difficulty. Natalie seemed to think so too (nurse daughter!). It's quite common with the patients she was working with. And Catie obviously did that.

I don't know it will mask the problem, it will help you get over it. When they have the culture result they will know if it is an infection and they will also know if they were using the best antibiotic if it is. Since they saw you really ill, it should be taken more seriously from now on. If they come up with results that suggest it is NOT an infection they should be investigating properly - like what hasn't been done so far :roll: !!!!!! Did they do a chest x-ray at A&E? Natalie says that the guidelines are that any cough lasting more than a couple of months in anyone over about 45 should be extensively investigated because of the nastier possibilities - and that applies even if they think they know what it is to rule out a second cause.

I am beginning to get extremely angry at the docs who seem to think they can see through skin and muscle without technical assistance and their utter inability to google guidelines they are not familiar with. If I can do it - so can they. :roll:

I saw my optician yesterday and he is going to write to the rheumy in Italy (well, an email via me :wink: ) suggesting that, in view of several signs and symptoms which are rather nebulous and not entirely typical it would be appropriate to do an MRI with contrast to rule out GCA. I saw the rheumy via the emergency dept and he was really helpful - but the symptoms are really vague and you'd only be aware of them with the background knowledge we all have after so long! Honestly - pity help the ignorant in this world.

Eileen

7

I already had a chest xray 2 weeks ago and that was clear. Also a spirometry but they got me on a good day.

Also dont know whether to continue with the 40mg Omeprazole which I started on Friday (that was the 1st night I had breathing problems) - just took 20mg this morning and have just had what I think is an oesophageal spasm (dull ache across chest after meal).

Beev

8

Did you mention having started the omeprazole that day when you were in A&E? Don't know what the side effects are offhand but that would make me suspicious - but I'm like that!

Eileen

9

And lo and behold - unusual side-effects for omeprazole include chest tightness and bronchspasm. And should be mentioned to the doc asap when they do occur. You didn't have any hives or itching did you? If so - do tell a doc somewhere as soon as you possibly can. Allergic reactions are not nice and can range from most unpleasant to downright dangerous.

Eileen

10

Beev - oh what a terrible time you are having. If it just turns out to be the Omeprazole, how scary. I related my bad experience with it to you a week or so ago as I wondered then if it could be the culprit. At least, although unfortunately ending up in A&E, you are finally being taken seriously. Fingers crossed that you will now be properly diagnosed and treated quickly so that you can enjoy that holiday next month.

MrsOx

11

Beev, I was given similar instructions a couple of years ago when I reacted to AA ( wheezing and spectacular all over rash ). Like you I queried it in case I had misunderstood but I had not and all was fine. They wanted to keep me in to administer the big dose but I declined. I was not feeling ill, just looked awful.

Told them I had animals to feed and greenhouses to water. I'm sure they thought I was nuts and gave me a number for immediate readmission but nothing happened.

Will it be ok to reduce direct from the 30mg to my usual 2.5/0 right away from 1 day to the next without taper??

Sorry, meant to put that at the top. It won't let me insert it; cursor just returns to end of text.

12

Hello all

I had already been on Omep 20mg for 2 years, so thought it unlikely that I would have a bad reaction. I had read it in the drug notes tho so we asked in the hospital and the Doc went away and looked it up and said it wasn't mentioned!!

I took 20mg only yesterday and had an (I think) oesophageal spasm after evening meal. So took 40mg again today so far without adverse effect.

I have started the 30mg Pred today - felt awful looking at those 6 red tablets!

:evil:

I do think from my research on internet that my prob might well be due to acid reflux poss causing post nasal drip which drips down to throat and airways and lungs?? Trouble is, if I see the ENT chap next week, any problem (inflammation etc in throat) is likely to be masked by the high dose Pred?

Beev

13

You can develop a bad reaction to a drug at any time. An allergic reaction can only happen the second time you meet the trigger, you need the first time to develop the mechaism. But it doesn't have to be the second time - it could be the thousand and second time.

Where did the doc look it up? How come I can find something on the internet that everyone else says doesn't exist? My daughter tells me asthma isn't sub-typed - well, even direct.gov mentions types 1 and 2 of brittle asthma with the definitions. :roll:

Maybe PMR gives us hallucinations as well :wink:

Eileen

14

Yep - we are all mad! :wink:

I am even imagining the receptionist at the surgery is being unpleasant and rude to me now. I rang to ask if my sputum test results were in and she aggressively told me that the clinic at the hospital where they had been done would have them. When i said that they hadn't been done at a clinic but at A & E she retorted in an unpleasant voice that they weren't in and that anyway the hospital would have them first.

I think maybe health staff get annoyed when they are actually used instead of being allowed to sit and do nothing. :evil: Next time I must start by apologising for bothering her and ask if its a convenient time to speak or should I just go away and quietly die so that i dont bother them anymore :twisted: :twisted: :evil: :evil:

Beev

15

Hi Beev,

That would have made me so cross :evil: . I seem to be very lucky where I am and mostly come into contact with pleasant and efficient staff at both my local GP and the Hospital. However, if anyone speaks to me in the way you were spoken to I simply say 'I'm terribly sorry, I didn't realize this was beyond your remit, please put me through to a more senior member of staff who will understand my needs and have the experience to answer my query, I'm happy to hold the line'. Works a treat with Banks as well. Hope you get it sorted.

Love from Lizzie xx

PS: Sunshine in Basingstoke, now that's unusual :D

16

Perfect, Lizzie. Only thing is that banks have an interest ( our money ) Not sure that some NHS staff have yet appreciated that we pay their salaries as someone on here ( Mrs. K ? ) has often pointed out.

I hasten to add that, perrsonally I have, with one exception, encountered nothing but polite and considerate treatment and responses.

Come and live in sunny (?) Norfolk. Beev.

17

Hi all

Well, PMR has faded into insignificance in my mind. I am feeling very worried and scared. My GP (the lady one) has suggested it might be bronchiectasis I've got.

We are due to go to France on Tuesday but I can't stop obsessively worrying, trying to analyse my condition over the months and looking it up on the internet! Can't think about packing etc.. and don't see the point in going as I can't stop worying for a minute!

I have an appointment with chest specialist on 2nd Sep but then will have to wait even longer for tests I suppose.

The ENT man saw nothing wrong although he did admit any inflammation could have been masked by the 30mg steroids for 5 days.

Sorry to be so miserable - am getting myself into a hysterical state and don't know how to stop. My family keep telling me not to worry until I have the diagnosis and then we will deal with it but it's easier said than done.

Beev

18

Beev

What a worry for you to be still going through all the horrid symptoms and still with no positive diagnosis, not helped by your Dr suggesting something that has scared you.

If the ENT man couldn't see anything serious, then maybe you do not need to worry.

I can't remember whether you've had a CT scan with contrast or not which would probably show up everything inside the lungs/tubes and give you some reassurance.

Have you tried swimming to see if that would help at least with the symptoms? I just say this because when our son was very young, in fact from babyhood, he suffered a series of chest infections and was plied with antibiotics - one of the recommendations was that we should take him swimming as swimming opens up the airways and is excellent for the lungs - just a thought for you, Beev.

I do hope you get to France for your holiday not least because being in different surroundings should help to take your mind off things.

MrsO :hug:

19

Beev

I wonder why your (lady) GP has made an appointment for 2 Sept with a chest specialist? If she visited the NHS website, she would find the following:-

If your GP suspects that[/b] you have bronchiectasis, they may ask about your history of respiratory (breathing) problems or childhood diseases. This is to find out whether there is anything in your past that might have damaged your bronchial tubes (the branching airways that carry air in and out of your lungs).

You will then be referred for lung and sputum (phlegm) tests to confirm if you have bronchiectasis and, if so, to find out how it has affected your lungs.

HRCT scan

The use of high-resolution computed tomography (HRCT) scans to detect bronchiectasis is now widespread, and some doctors regard them as the best diagnosis method. During a HRCT scan, a series of highly sensitive X-rays will be taken of your chest at slightly different angles, and a computer will be used to put all the images together. This produces a very detailed picture of the inside of your body.

From this picture, your GP will be able to detect the severity of[ the bronchiectasis, the pattern and distribution of it in your lungs, and also any other infections that you may have as a result of the condition.

Bronchiectasis can be identified by looking at your bronchi (the small tubes that carry air in and out of your lungs). Instead of tapering (getting narrower) as they go further into your lungs, the bronchi are dilated (become wider).

The width of the bronchi is compared to the width of your pulmonary arteries (the blood vessels that carry blood from your heart to your lungs). This provides a standard for how wide your bronchi should be. If the bronchi are wider than your pulmonary arteries, this usually confirms that you have bronchiectasis.

Maybe I am daft, but why has she not ordered a HRCT scan, it can be done from primary care.

I would ask the question.

But I would still go to France. You will have your E111 and the French hospitals are OK.

20

Mrs O

Thanks for the reply. No I haven't had a CT scan. The ENT man was just the wrong consultant I think! It seems the problem is in the lungs. I can't believe I've lurched in such a short time from my original GP (who referred me to the ENT spec after I insisted something be done) who was ignoring my symptoms and as good as telling me I was wasting his time to this anxiety and feeling I have a death sentence!

I am tempted to get a private app but it would mean not going to France.

Beev