Reducing steroids

[Silver252]

Hi all, I did post recently about my chest problems, which are still ongoing, waiting to hear about private consultation, hopefully this week.

I’ve been on the steroids, nebuliser and other meds now for 6 weeks, originally taking 12x 5mg prednisone the G P told me to reduce down the dose gradually which I’ve been doing, my problem is once I reduce to less than 8x5mg I get wheezy and can hear cracking so I’ve put them back up to 8 again.

Really struggling to get anywhere with this latest episode, have not been out other than to Doctors in 6 weeks. Should I just stay on 8 steroids a day and try again to reduce or stay on 8 day until I see consultant and seek his advise. Thanks for listening

[2greys]

That sounds like a very high dose and for an extended period. It is going to take quite a while to come of them. Try reducing them slowly, it will take weeks to wean off that high dose, as many as 6-8 weeks. Try reducing by 10mg for 10 days each time.

[DeanSamson]

Hi I had huge problems back end of last year and start this year with steroids. I was put on 10mg for 12 weeks I total. I thought ahhh it's only 10mg I'll just stop. Ohhhhhhhh no I had heart palpitations problems with adrenal glands dizziness for months headaches you name it I had it so I had to go back on them. I said to my specialist right I want of these things as quickly and safely as possible. He told me to take 10mg every other day for a week then 5mg every other day for a week then stop I was like are you mad man that is way to quick. But it did work. My body started to get back to normal although it did take about 6 weeks for the dizziness to go. And i think the anxiety caused by the adrenal glands is slowly slipping away. Your on a much higher does than I was so take it really really slow I'd try dropping one tablet a week or 10 days untill you get to 10mg then try the every other day approach. Going to quick can have huge effects that I didn't think could have happened. Dean

[hallentine47]

I have used up to 40 mg a day when with infection or exacerbation. I was able to reduce to 8 mg during the summer last year but since needed to increase the dose again to 30 mg a day. Currently stuck on 14 mg and simply cannot reduce. If I do I get all the symptoms mentioned by Deansamson. My respiratory nurse tells me that she has patients who will never come off steroids and I am probably one of them. Talk to your consultant. Steroids have been wonderful in helping me to breathe but the pay off includes induced cataracts and hearing problems, skin problems and teeth and gum problems. I have lost most of my teeth as a result of using steroids over the past 12 years and Osteoporosis has recently been diagnosed so I use Allendronic Acid once a week along with DCal Vit B. Best of luck.

[undine]

I am currently on 15 mg a day and am staying there it is the best dose for me but while I was reducing I was told to reduce by 1 mg every three days - good luck xx

[Silver252]

Thank you all for your replies, as always really good advice, got my appointment letter through for my private consultation it’s Tuesday morning at 10.25 so pleased it’s not long to wait and more importantly he will see me while I’m still unwell and into my 8th week of steroids, nebuliser and other chest meds, which I think is very important.

If he wants me to have CT scan bloods and X-ray on the day my bill will be about £1000, my husband is 100% for this as he says we could get an early diagnosis. We are both retired, on pensions, but I do have a credit card with no balance that I keep for emergencies so I think it will be money well spent.

If I am honest I feel so poorly spending the money is secondary, we don’t drink, smoke or go out and only spend money on our two beautiful granddaughters, my chest has never been right since I had pneumonia and sepsis 15 months ago and to have this episode of borderline pneumonia again has just floored me. When I was in hospital last year with pneumonia and sepsis they messed up my Warfarin ( on it for life due to repeat Pulmonary embolisms) and this resulted in me having NO anticoagulant in my system for 30hrs and bearing in mind that when my INR fell to 1.5 previously I had repeat Pulmonary Embolisms.

This mistake resulted in a suspected blood clot on my lungs three days later which when your already very sick made matters a whole lot worse. So I think since 2012 when I had the blood clots for the first time, and then more and then 3 bouts of pneumonia Aswell the G P should have referred me to chest specialist then, but I think I’ve just fallen through the system. Thank you again for all your advice x