Hi, just been weaned of a 21 day of prednisone. Finished them 3 weeks ago. Another flare up today been to see my GP and he has put me back on then, does this sound right?
I have brochiectasis and asthma, waiting to see consultant at Glenfield and I have lung function tests booked for next Friday will they still do them while taking prednisone?
Just started carbocisteine 3 weeks ago too.
Hello Starstream ,
I was on Predisone full time since before my lung transplant. I have always been on a maintainance dose for the last five years. I have not so far been told not to take my Pred before a lung function test. However, if you are concerned you should call ahead to Glenfield hospital and ask their advice.
As for whether the doctor was right to put you back on the steroids I think that's a difficult one for anyone to answer. He or she obviously was concerned with your flare up in order to do so. But again I think this is a good question for your consultant at Glenfield. Some people like me, never get off Predisone, I will be on it for life. But hopefully with your visit to the lung consultant and working towards your treatment, that may not be the case. Please go to the hospital armed with questions to ask. It's important to be well prepared. As for Carbocisteine I was also on that everyday for five years up until my transplant. I had no ill effects from it.
Hoping things go well for you.
Best wishes,
Cas xx 🙋
Thank you for your reply, yes I think this time GP was concerned as my oxygen was a bit low 93 (it's never very high 96 after pred)
So far no ill effects from carbocisteine, nothing positive either.
👍😀
Hello Cas and Starstream, My GP is very controlling over my use of Preds. It is on my repeat but I must inform the surgery if I commence a course. And that is restricted to 30mg. for 5-7days and then reduce by 5mg daily. It is never long ( a fortnight?) before the new need arises. So I live on a switchback. Not good. But whenever I suggest a maintenance dose I am almost shown the door for questioning their knowledge of Preds.
So I am most interested in Cas and your regime.
I am eighty. I am becoming weaker through lack of mobility due to constant breathlessness and more and more dependent on others to “fetch and carry” for me. Meanwhile, am often carer for my wife who tires very easily. A main dose is a very attractive proposition.
Sats stay around 96/7 most of time.
Carbocistein softens mucus I think. Not doing any harm that I recognise.
All the best.
Ian.
Hi, yes I have them on a emergency pack and have to let them know if I take them. So far this year I have had them every month, sometimes just 5 days and then the next month probably 21 days weaning does. Coamoxiclav 3 times this year.
Try to keep moving, eat healthy and drink lots of water.
Hello Kandi2 .
I understand the reservations of your surgery to give you a maintainable dose. There are many side effects of Pred , however I feel it may be worth your while getting a second opinion about having a low dose. Especially because you feel so much difference on it. Some people actually get more sluggish on Pred and have very bad debilitating side effects. But some feel much , much better. There are a few things that may take it's toll in the long run, namely the risk of losing bone density, cataracts, weight gain, diabetes and increased risk of certain infections. These also must be taken into consideration.
I was on twenty mg tapering to five mg. Before I had my lung transplant seven weeks ago. Right now I am on fifteen mgs. I expect if I do well I will be tapered again to a lower dose. I will be on Predisone and anti rejection medication for life. I don't want to be, but it is what it is . It must be very difficult looking after your wife as well as yourself. I hope you do have some support. We all need it.
Take good care.
Cas xx 🌼🌱☕
Thank you Caspiana, I feel somewhat chastened learning that your illness required a transplant....and I simply have emphysema and can breath quite happily when at rest, at least!
And I do take your points and am aware regarding side effects.
However, it’s my lost quality of life which I am chasing!
Hey ho...
The best to you too and do hope that the transplant gives you back yours.
And bless the donor for living on in you!
Hello Kandi2 , you need not at all feel chastened. I am a lucky person. The stars aligned 🌟 🌟🌟 for me and here I am alive and breathing. My donor is on my mind every single day and I somehow feel she smiles for me. 🌹
I think if you are aware of the risks and you strongly feel it will make your life better, advocate for yourself. You must steer your course after all the doctors don't live your life, you do. Align the stars for yourself sometimes 🌟🌟🌟🌟 😉You deserve the best life you can lead for yourself. Please do keep us updated if you'd like. Best wishes to you and your Mrs. xx 🍂🍁🍂
Hi, my Mum has been prescribed several courses previously in the same way you have been.
I believe that different Health Authorities and also different doctors have different prescribing protocols regarding predisone.
I asked about the possibility of a small maintenance dose for Mum as it often seemed to be a real lift for her but I think firstly that is not done here and also it probably wouldn’t be because there are of course side effects; for example predisone (and alot of other steroids I think) can hit the immune system negatively so can be counter productive.
The next Health Authority down the road do prescribe maintenance doses!
As Caspiana advises, ask everyone concerned what and why things are/aren’t done.
Everyone should be told what their care plan and treatment is and involves, in a way they understand.
Hope you’re doing ok
Thanks for that, yes I suppose everyone is different. Feel a bit better today after just 6 of the demon pills yesterday. Antibiotics dont seem to do much for me unless it's a real infection, had one in January and one may 2018
😀👍
I have both and refused that awful drug but we are all different. The problem with pred is it suppresses immunity . I just take a course of antibiotics but maybe that's not enough in your case. Personally I think pred is over used.
My exhaberations never clear with just antibiotics, but they are getting more frequent now 😏
Ok...thats not so good.....I used to be much more I'll that I am now with 6 weekly exacerbations. It's much less frequent now. This is what I did: avoided under 5s (kids), ate well, stayed hydrated, gave up work, avoided irritants, take vit C,E fish oil, zinc and Vit d. I pace myself, dont get over tired and exercise vigorously 3 times a week. All I can say is it worked for me but we are all different. Hope you can find better health.
This sounds great but unable to manage vigorous exercise.
Ok..sorry about that....but any exercise at all is good....gets everything moving!
When you get a exacerbation does it clear up without pills ever?
Do the exacerbation ever clear up by themselves, without meds?
Or do you always have antibiotics?
I can think of only once an exacerbation cleared up on it's own. It usually wins. Moraxella or Haemophilus but I wait to submit a sputum sample before taking anything.
I can never manage a sample 😏
Maybe now I am on carbocisteine I will.
That should help. Hopefully you have been shown the active cycle of breathing by the physio. That helps too.
I was like that. My previous doctor always gave me the demon prednisone now I do without if I can I feel the daily intake of vitamin d3 and vitamin b complex have helped me to stay healthier. X
Carbocisteine is safe to use as my late partner was on it for over 4 years and it works well.
My hubby has been on Carbocisteine for a number of years. He asked if there was an alternative as they don't seem as effective as previously. Told by doc no. Also been on steroids a lot. Now has a cataract ....
I have been taking the carbocisteine for 7 weeks now and cant see any difference at all.
Saw consultant today and he has given me montelukast to try,
I’m on prednisone all the time and come out on purple marks on my arms, they are now developing on my neck etc, very unsightly and look like bruising, do u suffer from this?
Hi Alfie,
Not yet I dont, bruise easily though.
Just weaning down off them again!
Feel 100% at the moment wish I felt this way all of the time.
Are yours for bronchiectasis?
C 😀
This Dyson helps so much 
Any help much appreciated
Flowers from my mind, with candles too.
too hot to cook and my friend lefteri just brought me food 
Heart rate stays around 100 bpm
