Steroid withdrawal cont. Plus Hernia

Hi there again, well I have had to give in and, after discussing with my consultant, I have gone back on 1mg of Prednisolone again. it was just getting too much. I now have a bit more energy but I still have some pain in my joints but it is so much better than it was. To any one else out there thinking of coming off there Prednisolone steroid do it really slowly. I went from 5mg per day (which I had been on for over 2 years) to 5mg every other day for 4 weeks to stopping completely. Not recommended at all. I will now wean myself of the 1Mg very slowly.

My other news is, I will be going In St James this Friday 29/07/16 to have my Incisional Hernia sorted out. I am feeling quite nervous about this as I have read into it far too much and scaring myself thinking I won't heal very well. I have discussed my fears with consultant who have assured me (as much as they can) that everything will be fine. So I have told myself to be positive about it and I will be OK. Wish me luck everybody and I will let you know how I am asap. Please no negative comments about this at the moment as it will just make me worse. you can tell me what you want after Friday lol. Stay strong and keep smiling x :)

8 Replies

  • good luck dizzieme i hope everything goes well for you. i know what you mean about negative information its just not helpful at times. and try not to read anything negative or about what could go wrong as thats what i was doing and i just made myself worry about what " might" or might not happen so i'v stopped doing that. i dont think the consultant would be going ahead with the operation if he didnt think that your body could heal from it after all they do all kinds of blood tests to make sure that your body can cope. i had to get heart traces or what ever it was before my operation as they said it would last at least 3 hours and lasted 5 hours.. the stick pads all over your chest and feet and ankles and it came out fine. so it will be good to get this hernia sorted once and for all. god bless you love grace xoxoxo❤️

  • Ahh thanks for that Grace, I know, dammed internet good for somethings and scare the hell out of you for others .Yes, I think you are right they wouldn't do it if it was not necessary or if it wouldn't be right for me. 5 hours that seems a long time. I haven't discussed with them how long. Will probably find out on the day.

    It will all be done by Friday night then no more worrying. keep smiling xx :)

  • Good advice about the steroids dizzi. When you have been on them for years your adrenal glands have stopped working so it can involve a bit of tweaking of meds to get them to kick start again. I'm back on 5mg of Pred and seem to be one of the lucky few who feel better not worse on low dose steroids.

  • Cheers Bolly. The reason I wanted to get off the Pred is because they gave me steroid induced diabeties. I have been really strict with my low carbing diet and got my insulin quite low. The good news is dince coming off the Pred I have only been taking my night time insulin (Lantus) and no Humolog fast acting Insulin during the day which I am really happy about. This seems to be staying the same on the 1mg Pred. Hopefully I will get rid of the diabetes totally in the furure. Here's hoping x stay strong and positive. X :-D

  • Hi dizzime, Don't worry about your hernia operation, I had two with mesh done last year January after my liver resection and I am ok.

    I am not giving any negative comments but I thought I would tell about my appointment yesterday. I saw Rheumatologist and explained about my pain ( everyone is different). I told her (my consultant away on holiday) about my pain and that I was on third week of 3 mg daily. I had to have blood test but at 5 pm they closed so I went today. The Rheumatologist promised to phone me with my results today? and if they were good, I should stay on 3 mg Pred until October and, if they were not good, I have to sort of permanently? (Bolly you know what she means). I am waiting for the phone call but I had to go out and may have missed it.

    Dizzime there is no need to wish you luck, you will be fine. Stay positive, you can do it! X

  • Cheers Tatjana. Thank you for your kind words and your encouragement. Much appreciated. I hope all goes well with your tests and your pain gets better. Stay strong and positive. Keep smiling x:-D

  • Dear Dizzi,

    As you may recall - my husband also has a hernia waiting for repair...

    Looking at the research we had to do to find out what's what - the operation itself is relatively simple - all it really strongly suggests is that your surgeon must be an experienced one as he/she must be able to carry it out effectively...

    You have been through so much and managed to overcome equally that many obstacles. You have stood by me through my darkest days and given me hope alongside the other wonderful people here...

    I want to wish you all the best with this repair and a speedy recovery.

    Do keep us updated.

    Yours truly,


  • Thank you Pear. I am having my Hernia surgery done back at St James where I had my transplant done. My transplant consultant sugested that it would be better to have it there so they can keep an eye on me. They are also keeping me in a few days to check on me. Usually patients are in and out on the same day. Getting a little bit nervous now but I am sure I am in safe hands. Thank you for your support and words of encouragement. Much appreciated. Will keep you updated asap. Staying positive as ever. Xx :-D

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