Prednisolone questions

[Wheezeydarth]

I have severe asthma although thankfully in the past year my symptoms have been pretty much in control i have been on daily 15mg of prednisolone now for 7 years increasing when i have flare ups my main problem is prior to covid i had quarterly appointments with my respiratory consultant and her team i have had no contact from them since the covid outbreak. I have tried to contact them my GP has tried i have had hospital doctors and surgeons ( unrelated medical issues)try but alas to no avail. I have asked my GP regarding my Prednisolone and my wish to reduce gradually like i did many years ago but he is not keen without a consultants agreement. I have osteoporosis and other problems due to my prednisolone intake and would really like to try and reduce however my prescription is for 5mg tablets and can only reduce by 2.5mg not sure if thats too much too soon. Im on relvar 184/22, ciclesonide, montelukast, uniphyllin, tiotropium and salbutamol nebs ( not needed in 3 months). Any help would be grateful just wish i could get to speak to someone frustrated and scunnered. Thanks

[teddyd]

I cant help with reducing your prednisolone but I think it strange that your GP cant get in touch with the consultant. Have you contacted the admin team for the consultant to ensure you are still on his list. Maybe your GP just needs to put in a fresh referral .Sorry not very helful as you have probably already tried the above.

Good luck

[Wheezeydarth in reply to teddyd]

Thank you for your reply. Yeah our Doctors are not the best think i might change surgery's try my luck elsewhere. Thanks again

[Poobah]

Your hospital PALS team may be able to help. They will investigate why your respiratory consultant team have gone no contact, even with professional colleagues, which, given the severity of your asthma, does appear to be unacceptable. At this stage you can make clear that you're not yet making a complaint but will have to make things formal if the respiratory service continues in its failure to restart your quarterly appointments.

nhs.uk/nhs-services/hospita...

[Wheezeydarth in reply to Poobah]

Thank you for your reply sadly there is no PALS in NHS Scotland. I feel like the only way im going to get too see a respiratory consultant is for me to have another attack not a route im going to take though... either that or actually go to respiratory ward and chain myself to the nurses station lol. Although i would probably end up getting sectioned knowing my luck.

[Poobah in reply to Wheezeydarth]

That's frustrating. I understand that NHS Scotland has PASS, although not the same as PALS, but certainly worth considering as they support patients making a complaint. The emphasis, NHS Scotland asserts, is early resolution. The fact that the respiratory team have failed to correspond with other departments, when contacted, suggests a worrying state of affairs that needs highlighting.

Given Scotland's government's current policy for respiratory care, see link, the reality is somewhat different to their ideal. I've worked in government agencies and receiving an MP complaint always resulted in immediate attention and resolution or answer. Just something to consider if your complaint isn't dealt with to your satisfaction.

I've no doubt that respiratory services are having to cope with additional cases because of long covid, but not communicating with regular patients and colleagues is not acceptable.

gov.scot/publications/respi...

[Wheezeydarth in reply to Poobah]

Wow thank you so much i have learned more from yourself and the others on this forum than i have from so called medical professionals. I will follow up on this right away. Yes unfortunately in the disastrous scottish government we have at the moment ( we dont all want independence i can assure you) they have failed on pretty much everything they have set out to do pretty embarrassing to be honest. But at least i have somewhere i can try and get the answers now so once again thank you so much for your time and knowledge.

[Poobah in reply to Wheezeydarth]

Good luck!

[Homely2 Administrator]

I got ignored by my hospitals respiratory team. They finally woke up and blamed the lack of attention on a locum consultant who had removed me from the system.

Two approaches

1. A fresh referral from the gp to your current respiratory team or ask your gp to refer you to a different hospital. Downside of this is that it may take a lot of time.

Or, my preference

2. Put something in writing to the respiratory team, make it professional but at the same time make it clear that they are in the wrong. Either by email. preferably, or letter. Then if you hear nothing, two weeks later ring them up. If that all fails you can they ask Pals to chase it up.

[Wheezeydarth in reply to Homely2]

Thanks for your reply a few good ideas there unfortunately Scotland does not have PALS but i will go and see my GP give his big comfy chair a good kick and see if he wakes up lol.

[Fenfisher]

Hi

I have been on montelucastfor a long time now and I have a good result with it ,I also take fostair and spirits.

I nebulise saline solution 2 or 3 times a day as throat cancer survivor voice box becomes inflamed . I too am waiting to see respiratory consultant

I seem to produce a lot of mucas and take erditin to help clear it

Regards nigel

[Wheezeydarth in reply to Fenfisher]

Well done on survival after throat cancer my heart goes to you. What a bloody disgrace the whole covid hype. Anyway not scratcing that wound. I hope you do see someone soon though you definitely should not be going it alone. All the best for the future.

[Starstream]

Just don't reduce without having Cortisol tests first. I am on 15mg per day and if your Cortisol levels are too low you cannot reduce any further. You could become very poorly.

[Wheezeydarth]

Thank you never knew that hey everyday is a school day. I wouldnt do it without having the backing of healthcare professional but definitely wont try it now without seeking their support. Youve done your good deed for the day many thanks.

[Davenpos]

Hi I too have severe esoniphil asthma

I am on 20mg pred daily and increase when I feel.need too..

My GP crap and respiratory team too

I.am.on benralisumab and deteriorating bug.my saving grace is I am not being admitted to itu ..

I just had enough x

[Wheezeydarth]

I can only hope you stay out aswell. Sorry you have a deteriorating bug not good. GPs are out of their depth with severe asthma the know the lingo but really cant help much mines actually sent me to the practice nurse who looked over my record and frowned said sorry cant help you much (honest at least i suppose). Yeah was feeling really fed up actually thinking it was only me how naive. Did not really know how wide spread the problem is over the whole of Britain sad so sad how managers and higher are destroying our once wonderful NHS i dont blame Doctors or any medical professional only government and their stooges in control. Wishing you a speedy recovery and hopefully a resolution to your respiratory care.

[Cloudancer]

I have been on prednisolone for 18 years now on a maintenance dose of 10 mgs daily is increased during infections /exacerbations ect.Please do not attempt to reduce the dose without having discussed with your respiratory team due to the risk of adrenal crisis.

I have access to my consultant via his secretary.Suggest asking your GP to refer you back or if still under the care of the hospital team approach their asthma nurse specialist attached to the respiratory team.

Best of luck and let us know how you get on.

[Wheezeydarth]

Thank you for your reply no i wont go 'gung ho' with prednisolone not worth the risk as you say. I have emailed Pass with my details which is sort of equivalent to pals in Scotland so im hoping to get back to the consultations with a respiratory team soon. But till then ill keep taking the demon pills the wonderful pill that can save a life yet after years as you no doubt know takes its toll on you. I will post an update once I get some news. Many thanks

[Madbiker1]

I have just been started on dupilimab.My asthma symptoms are better but it plays hell with my sinuses and I have the most appalling cough - I am getting used to sleeping in the living room.

The specialist care I have received has been excellent.

The pharmacist has told my GP to cancel my repeat prescription of steroids ( I think I have had 60 - 70 courses in the last eight years ) - I have asked for a dexascan to see if my bones are thinning.

Go back to your GP. If you get no joy you can complain to the NHS.

[Wheezeydarth]

Thanks for reply yeah made complaint so playing the waiting game now. My first bone density scan in 2005 showed 20 percent loss in my right hip and lower back last scan which was 2019 i was down to 64 percent loss but i was on really heavy doses of both iv prednisolone and oral then daily maintenance dose of 25mg only reduced 4 years ago down to 15mg. My fingers are crossed that your scan comes back with little on it but if there is a loss you can halt it with alendronic acid and calcium supplements. Yeah spent many a night sleeping on that bloody sofa hence my tag name i sound like an asthmatic Darth vader at times. Im suprised a pharmacist telling a GP to cancel any medication as for prednisolone if your on it daily you can not just stop it or your in for trouble. My care was excellent aswell i couldnt fault anyone or any dept its only since bloody covid that ive not had any contact and neither has my GP so unless my postie is binning my mail which i doubt ive been taken off their records for some unknown reason. Good luck