Prednisolone...... advice pleasee

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Hello lovley people

So today i saw my specialist and she gave me prednisolone? Worried about taking steroids and im wondering if ths is rash..my lungs are very inflamed and so are my lym nodes around my heart.

So can people tell me there views and experiences on this drug? Any tips?? Or advice would be great..... what about sleeping if it affects your sleep can you take something to help with that?

So a little more info im taking 6(tablets a day) x pred for the first week. 5 x tablets a day for the second week 4 x tablets a day for 3rd week and so and so on. Im sure you get the picture. First day tomorrow morning. And now i cant sleep meh!

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  • Posted

    Hi

    I have been on these steroids for over a year now I started on 40 mg for the first 5 months then was weaned off slowly however I dropped to low to quick and then went back up I'm currently back on 15 mg a day.

    After 2 months of starting them my face and body bloated, my mood really changed I became very temperamental, my appetite became bigger and I was very tired all the time. After 8 months my hair started to fall out and become thinner however no bald patches. But they reduced the swelling in my spleen liver lungs. They have done what the were supposed to do and I'm very grateful for that because they were my last resort.

    Every person reacts differently so you might not get any of the side effects I did, or maybe only one or two. It's only if your on them as a high dose and for long time.

    What mg are you starting on?

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  • Posted

    Don't worry or be stressed about it, think positive that they are going to help you and the sarcoid. I'm back in hospital tomorrow, I am awaiting an mri to but I'm just trying to take it in my stride because trust me stress is not a good thing.

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    • Posted

      Hi katId,

      Yes that is a high dose but hopefully you won't be on that very long by sounds of it its a short term dose.

      I live in Ireland so I visit my local hospital.

      This is my 2nd time round with sarcoidosis however it has been flared up for the best part of 2 years.

      I can sympathise with you I have a 14 month old daughter and I also work, I get very tired and fatigued all the time but somehow when you know things need to be done you just find the energy lol

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  • Posted

    Hi katld,

    I was very concerned before I began the steroids too, the medication is strong and it does have side affects. However, I found that I got used to some of the side affects (although not all) and the improvement to my health, by slowing and then stopping the Sarcoidosis, made the risks and side affects justifiable.

    I remember not being able to sleep when I began the steroids, I think I may have taken something to help me sleep sometimes in the beginning, and eventually my body adjusted.

    It sounds as though your course will be reasonably short (a month or two...?) this may mean you don't have enough time to adjust - but then you'll be done, which will hopefully be better!

    Doing as much reading as you can online, to learn about the disease, so you can be as proactive as possible in making these decisions With your Dr. helps to ease anxiety.

    Best of luck to you x x

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    • Posted

      Hello, thankyou for your reply

      How long have you had sarcoidosis. I never understand in remission does that mean your cure or just waiting for the next flare up? Maybe take my first dose today! And i have a 2 year old and work and already takes me ages to sleep so could do with no loosing anymore haha!!! Hope your well x

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  • Posted

    Hi there,

    I have been on steroids since March this year. I started on 30mgs and it reduced over time. I have come down to 5mgs but I'm on a higher dose at the mo as I have bronchitis for 5 days but will go back down again.

    Side effects are different for everyone. Myself the weight gain didn't start until I was taking them for four months. My mood and temperament have been affected quite badly. I can be fine and then its like a switch goes off and I'm like a demon. Its scary sometimes. My sleep pattern wasn't really affected.

    They have helped and I only have it in my lungs. I wish you luck and hope you make a speedy recovery.

    Regards,

    Polly.

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  • Posted

    HI Katld, I know there are so many worries about taking steroids, but they worked for me. I was unable to walk a few steps without coughing and breathlessness, felt tired all the time. Was prescribed 30mgs daily for 1 year, ok I put on weight, but that was easy to lose when I stopped the steroids. I can now walk, swim, yes even breathe and talk at the same time! So trust your doctor they have the experience.
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  • Posted

    Steroids are your best & only hope for Sarcoidosis. I was on the 7 day pack, then 20mg for a week now down to 10 until they take me off. 

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    • Posted

      Hi

      That really is very true I was told 13 months ago they were my last resort, so I had no choice.

      Currently I am suffering with a throat infection which is not good and I get infections quite alot due to taking them for so long which has weakened my immune system, but they are doing the job they are suppose to do so I can't complain.

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  • Posted

    So do yiu guys take steroids all the time? Or just when you get flare ups? Basically my doctor said i take them or risk permanent scarring to my lungs which would have a bigger effect later on. So ibe taken them and tbh it hasnt been to bad yet felt abit sick and everywhere is achey and felt a little bit strange but nothing that hasnt been very easily managed ive still worked ect ect even though i dod have 1 day off due to feeling like i had vertigo but that subsided very quickly x
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    • Posted

      Hey

      Yes I take them everyday for the last 13 months.

      I get palpitations at night sometimes, I get bad night sweats, my hair has thinned but only the last 5-6 months.

      I have gained weight and bloating but for some not all these are some of the side effects.

      This is my second time round with sarcoid but 1St I didn't need steroids that was 2010

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    • Posted

      Also my eyesight has deteriorated, blurry eyesight, my optician has said that the steroids can cause your eyes to weaken, so I got a stronger prescription.

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    • Posted

      So why have you been on them so long? Is there no way they can take you off? Im wondering if anyone has looked at alternative medication with less long term side affects?
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    • Posted

      It was diagnosed last year and by August 2015 my spleen had doubled in size, it was on my.liver, my lungs and my leg. It had got to a stage where it had spread so quickly that it was my last resort to take them.

      I have been weaning off them as I started on 35-40 mg a day to start then after 5 months starting coming off them. I got to a stage where I came off them to fast and the sarcoid flared up just as bad so the dose went back.up.

      If you read my posts there are some things I take that help me with energy and anti inflammatory. The latest news now is that I.could have inflammatory disease.

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    • Posted

      Hey if you click onto my name, my replies come up.to different posts. If you go down to at least 3 months ago I have replies to people but some info about what I do and take to help me.

      I hope it helps you it has helped me. Let me know if you find it. :-)

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