steroids & antibiotics: as you all know... - British Lung Foun...

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steroids & antibiotics

teaky-19 profile image

as you all know I have been given 6 months to live with end stage copd & pulmonary fibrosis. what I am trying to find out is 4 weeks ago I had to take co-amoxiclav and prednisole. after about 5 days I was feeling good in fact for about three weeks I was feeling great I was eating again but yesterday I was back to feeling terrible same again today I am also in a lot of pain. which I know in from arthritis in my neck& spine.saw my doctor 3 days ago she gave me a new emergency pack she would not give me co amoxiclav she told that if iget a severe infection my body would be immune to them.she gave me doxycycline and I had been feeling terrible 4 weeks I took thhe emergency as I looked to my family thought I was going to die. what I would like to know is can I take emergency pack so soon as I look and feel terrible againim bad enough but I am just skin and bone I could do with being able to eat again.i don't seem to have anything to fight this with aany advise would be appreciated

23 Replies

My heart goes out to you Teaky and I can see how you are in two minds regarding taking your emergency meds. If you feel you definately have the infection back , then yes, I think you should take both meds. But I'm wondering if you've thought about discussing with your doctor the possibility of having a small amount of prednisilone each day.

Maybe just enough to to sharpen your appetite a little and enough to give you a bit of a lift.

Sending warm regards and a gentle hug, Lovelight x

So sorry you are feeling so poorly, have you made an appointment to see your gp again soon?

maybe you need to be on a longer course of prednisilone...I take a maintenance dose every day and more when I have an exacerbation.

They do make me feel better, more energetic and less of a cough...but the downside is the sleeplessness.

Have you rung the helpline for advice?

Best wishes

saramic profile image
saramic in reply to knitter

Hi, I am moving towards discussing a maintenance dose with my gp. Do you mind telling me what your maintenance dose is ? I know everyone is different but it would be interesting to know. Many thanks

I have an appointment with my consultant next Wednesday I will ask him about a maintenance dose of steroids as my doctor is not keen as I am on a lot of heart medication I don't sleep well anyway usually get about 4 hours thanks for advice though

seyre profile image
seyre in reply to teaky-19

Hi, so sorry to hear your news, how can they tell you have only 6 months left? I have severe copd and although I have had a frightening episode when we all thought my time has come I came back fighting. I am now on oxygen and a maintenance dose of steroids. 12.5mg it is not without its side effects but wat the hell if I feel comfortable. My weight is still pretty low but I just eat what I want when I want. There are drinks available to give you all the nutrients, my Mum had them, I just prefer to eat whatever I feel like. Good luck. Sue E

teaky-19 profile image
teaky-19 in reply to seyre

hi seyre I have copd & pulmonary fibrosis I have had all three for 5 years although it only came to their attention September my first consultation with my consultant told me I was at the very severe stage.i told him I had paid for a life scan 5 years ago and I had the cd copy of my scan he asked if he could have a look at it and when I went back to see him he put it up on his computer to show me the images and he pointed the the emphesema and the pulmonary fibrosis.he told this was very serious he told me what I have was worse than any lung cancer as they cant do anything but try to slow the progress of the disease.i was diagnosed as end stage in april sadly I am just a bag of bones now .it is the pulmonary fibrosis.that is going to take my life 5 years with pulmonary fibrosis has taken its toll on me some people don't get as long as this but thank you and every one else for their kind concerns

seyre profile image
seyre in reply to teaky-19

My thoughts and prayers are with you teaky-19. Sue E

Champ294 profile image
Champ294 in reply to teaky-19

So sorry to hear you news unfortunally l am the same but only pulmonary fibrosis six week ago l was given four to six months l am just getting over chest infection and was given steroids feel so much better so they say l can be on maintenance dose of ten most day so maybe things might prolong prognoses

Teaky I am so sorry you have been told you have only 6 months to live. What a terrible thing to have to come to terms with.

I'm like knitter I take a maintenance dose of pred.

I think you should contact your consultant. You need help. If all else fails I would take your emergency drugs. You don't have anything to lose and everything to gain. Healing hugs. M xx

Sorry teaky our posts must have crossed. Take care and good luck with your Con! M xx

teaky-19 profile image
teaky-19 in reply to Mocarey

thank you mocarey

Please take care i have been thinking about you ,i hope you get things sorted

Dorothy xxxx

Dear Teaky, I very much hope that you're not having to deal with this news on your own.

The BLF have both advisors for your health and counsellors to help you to come to term with your prognosis and the rescue pack dilemma. Do give them a ring - nothing to lose and something to gain.

The helpline is open office hours during the week and is the cost of a local call 03000 555 030

All the very best to you, P

I was listening to the BLF COPD broadcast on the Web not long ago and it was mentioned that people with emergency packs tended to wait to long to start them.

My heart goes out to you. Keep your PMA.

As others have suggested - speak to your doctor. Before diagnosis I had barely eaten a full meal for months. The prednisolone really made a huge difference to the appetite and it really helped me. Maybe as someone says - you need to take some just to give your appetite the edge.

Good luck

Marie x

Bless you teaky. Hope you get all the help and meds you need. Lots of love. xxxx

Hi teaky, am so sorry to hear your prognosis. I am one of those who generally leaves it too long to start my emergency meds so can't really advise on that but if you are feeling bad then you should take them. But weight wise, I'm pretty underweight, once you find yourself not eating it's very hard to get back into it. Has your gp prescribed any nourishment drink? They have everything you need in them, probably far better than an average meal actually! You don't replace a meal with them, you have them as well. The milkshake ones can be quite nice, strawberry. choc, vanilla etc, Fresubin are the ones I have, just mix the power with whole milk. The Complan ones are nicer but I don't seem to ever have those prescribed. They have helped, at least I've not lost any more weight since I've been on them. All the best to you Teaky. Libby x

Hi Teaky, as the others have said, take your emergency pack, and ask your con, if a maintenance dose would help,Its very hard to eat when you are feeling so poorly,so supplements could help you,Thinking of you, keep fighting, Heather X

Very sad news Teaky, in your position I would do what ever makes you feel better. A maintenance dose may be helpful as others suggest.Sounds like you need more help and support from your medics. thinking of you at this difficult time

Hi Teaky. My Husband has been told one year. He has IPF. He has just taken Clarithromycin Doxycycline and Prednisone in the last couple of weeks. He wasn't very well at all. He felt really good for a few days after but we went out today and he hasn't been very well. When he had the steroids prescribed the Dr told him they would make him feel better. He even began to eat better. I think if you are not sure whether to take your emergency meds you have a few options. You could go to see an out of hours Dr or maybe give them a ring. You could call The NHS helpline or maybe The BLF if they work at a weekend which I expect they will. I'm so sorry to hear they have only given you six months but like I told my Husband there are people on this site who have been told similar and are still here years after. You take care.

thanks for all the kind replys

i would get a second opinion .... and take emergency meds ... get as much help to fight the illness as you can. Hoping for better news for you,. x

Teaky, I can't offer any advice or help, but would like you to know you are in my thoughts during this difficult time. I hope you can manage to eat something over the next few days. Sending hugs.

Kath xx

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