I have very severe emphysema and have been on oxygen 24/7 for around 9 months. I recently had a trip to hospital with an acute attack and of course was placed on prednisone (no infection, just an attack) anyway came to the conclusion the reason for the attack was because I have been unable to properly use my 24 hour preventer inhaler as have not had enough air suction to draw in - so probably only getting it to the back of my throat ! ( In addition to this I take ventolin 4 puffs 3 times a day plus 2 daily puffs of 250g of flixotide).
Since returning home, I visited my doctor and asked to be put on 10mg a day of prednisone - he agreed to a trial for a fortnight. So, I am finding I can now suction back my 24 hour Ultibro inhaler and am feeling completely different, have not needed the oxygen as readings are 96 - 98 without it. Prior to all of this buttering a piece of toast was an exhausting exercise.
I am totally aware of all the short comings/dangers and side effects of prednisone, but would like to know if anyone else is on this dosage of 10mg on a permanent basis, and how they are reacting and/or dealing with it.
i greatly look forward to your valued replies to this.
Thankyou
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Dampier
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Oh that is so interesting, can you tell me why you are taking this - or at least the reason your specialist prescribed it. Kiwi doctors/specialists are so so against even low dosing of prednisone
Because at 47 almost overnight I developed severe inflammatory joint pain. Diagnosed with psoriatic arthritis. Put on methotrexate. After 4 weeks developed severe shortness of breath. It was then discovered I had inherited alpha one antitrypsin deficiency ZZ type.
I am now 58. I was given a spirometry, PFT January 2010. At that time my fev1% was 58% of predicted. Actual was 42%. But they go with the 58% as the baseline. In 8.5 years I’ve went from moderate COPD to very severe at 25% Fev1. So I did not have my first spirometry for approximately two years after my diagnosis of hereditary emphysema. Moderate to very severe in 8.5 years. I’ve not had a spirometry for 16 months. I’m scheduled for one this August 16th. Should be informative. I’ve been through the gamut of meds. I’ve had prednisone as high as 60mg. Was on 20mg for awhile. Now I’m on maintenance of 5 mg and azithromycin 3x a week. Along with inhalers, pain meds, heart meds etc...too long a list....
No problem! Actually I wish more on this forum were open about their experiences. Many of us want details but are afraid of being inappropriate or crass. I will be posting my spirometry results in ten days and updating my status!
I’ve been on 30mg prednisolone daily for about 3years, currently trying to reduce dosage.. yes, I can function so much better when on 30 mg dosage, but I’m paying the price now... I’m covered in”bruises “ not caused by injuries, they just appear, apparently prednisolone weakens capillary walls and they just leak! My skin is incredibly sensitive to touch, really quite painful just to wash and really sore to apply body lotion.. which is now needed almost constantly because my skin has become so dry.. I have quite a problem with feet/ankles swelling to the point of not being able to wear shoes.. also apparently caused by long term steroid usage... just some of the reasons why your docs are reluctant to prescribe.. I was warned that all this was likely, but was desperate at the time for some effective pain relief and prednisolone is effective for me.. but there is a price to pay..
I have only ever been on 50mg daily short term . Makes me eat loads and sleep little. Skin becomes thin after a few years and immunity is suppressed. Apart from that they keep you alive and breathing so forget the side effects! Glad you have improved.
I was dignosed COPD Emphysema 13 years ago and 3 years ago suffered pnuemonia and spent 19 days in ICU. Since then I have used Predisnole daily on various doses depending on my condition. Last summer I got down to 6 mg a day but since exaccerbations and infection have needed higher doses up to 35mg a day I am now down again to 16mg. I hae suffered all the consequences of takin g steroids such as tooth loss and hearing loss and osteoperosis and paper thin skin but like you need them to breathe!! I do wonder sometimes if they are losing effect as I feel no diference between taking 25 and 15 mg a day. It is about balancing everything.
I have been on 10mg daily of Prednisolone for the last 3 years and have the abominable bruising, sore and tender skin plus swollen feet and ankles as Nanapuff has mentioned. I was getting chest infections and the Prednisolone helped my breathing but after ending a course of 30mg daily the infection returned time and time again. It was then decided for me to remain on a daily 10mg maintenance dose. My breathing is now constantly abominable and going up to 40mg isn't helping at all. I struggle terribly now to move from one room to another. I feel I may as well be taking smarties !!
Dampier - prednisolone might make you feel better but as you have emphysema, it might not be doing very much to improve your lung function. Asthma is usually reversible to steroids but they tend not to have such a good effect on emphysema. Reversibility can be tested by spirometry and peak flow, before and after treatment. This gives a good indication of the patient’s physical response.
As you already know, long term steroid use can cause all kinds of problems but not all users have troublesome side effects. Unfortunately some do. Be aware of the implications of becoming steroid dependent. The drug must not be stopped suddenly and withdrawal needs to be done under medical supervision over a prolonged period of time.
From what you say, before making the decision about steroid use it might be helpful to see your respiratory consultant and ask for a review of your treatment including inhaler technique. Adjustment of medication might improve matters.
You have severe emphysema but feel and function better when using steroids so there might be a case for long term palliative use. Perhaps you should think about this carefully and have an in depth discussion with your physicians. Only you can decide whether it is a risk worth taking.
I have been back to the doctor and he has placed me on daily prednisone dosage - at present 10mg, with the instructions to reduce to 7.5mg and see if I can get by and if so then try 5mg. He has also prescribed a monthly dose of vitamin D.
Yes I do have severe emphysema, my FEV is 17%, but since taking the 10mg of prednisone have achieved 20%, so obviously a difference.
Yes am very aware and concerned re the horrendous side effects, but my quality of life has infinitely improved and I rather think the introduction and indeed continuation of prednisone has been considered by the doctor as pallative.
I was on 10mg for a few years until cutting down to 5mg. My doctor thought it necessary. Now I am post transplant and am on 25mg. I will take the devil's tic tacs for life. At 10 mgs I experienced very dry, sensitive skin, an increased appetite and more fat storage as well as a "moon face", my eyes became very sensitive to light. There is also a risk of weak bones and other side effects I can't think of now. It is important to take care of your stomach as acid reflux is common. Beware of the sun. Our skin being weakened is an invitation to burn easily and the risk of skin cancer increases on high dosages of steroids.
Thanks Cas - I have been on 10mg since 6 August, but today are reducing to 5mg and I will see how they go for a week (less is best). Have already put weight on in the face, nothing else at this stage. I really appreciate your email it is great to get other viewpoints, particularly, when they are, like you, already taking this mediation. Thanks
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