hi every one , I am now 4 weeks in to prednisolone .can I ask will I feel this low ,sad ,scared all the way

through treatment or do you think I should ask the doc for maybe some help ? I am not sure if you can take antidepressants on pred, has anyone else ? also I don't feel I have chest pain ,or other symptoms of the illness now so could I be cured alone of the pred or is it all just a mask has anyone else had the follow up results after pred and the is no real change ? hope this all ok to ask , my mind is all over the place xx

17 Replies

  • Ive been on predisilone high doses for 15 weeks now.Its atrade off sorts out symptoms but presents side effects like you I get them,rabbitin on euphoric one min then down.The longer your on it you get a bit more mentally able to cope with these effects ive had some awful thoughts was going to strangle the missus but told her and we had a laugh about it.Share you thoughts with family,friends more the better.They should reduce your dosage gradually incase you get a flare up of your probs.Dont be shy if any doubts see gp or consultant preferably if your under one,gps are limited in knowledge and aren't specialists.Take someone with you as 4 ears are better than 2.Make a list of questions to ask with your queries.Consultants will send you copies of all that is discussed about yourself, to yourself aswell as your gp.Youll be ok its a pain but try and stay positive its hard I know at times,frustrating but hopefully light at the end of the tunnel for you im sure.

  • Hi, I was on 80mg of prednisolone for over a month & have been slowly reducing them . I am now on 15mg. I too felt really miserable & low. I made a major descision not to take any more drugs than I had to. So instead I went in search of my sense of humour . I have always been a cheerful person so I looked in the mirror and smiled at hamster looking back at me (or was it my steroid face) Yes I did cry , I did have miserable days. But I have great friends & family who can't understand how I keep smiling but it keeps them visiting. It takes a lot of effort but it is worth it. My answer is to have at least two good things too look forward to each week (afternoon tea being the current favourite). I only dwell on the positive & the negative I file away in the back of my brain. Good luck & keep smiling. I will be thinking of you, it does get easier as time goes on.

  • After four weeks on 60mg, I rang the rheumatologist's senior nurse - she talked to him, and I was able to reduce to 50mg. Do you have a number to ring for advice? To be fair, he had warned me that the first few weeks would be 'very unpleasant', and that's doctor-speak! Soon after that they added in methotrexate and I was able to reduce the prenisone even more. But it is a long, slow road, and Valwood is so right in saying that you need to build in occasional treats.

    There's a book by an American called Sheri Schwar about suffering from TAK, coping with family life etc. I found it quite reassuring as she talked about a lot of the silly little symptoms that I'd got, but not thought worth mentioning to,anyone. She also made me very glad to be treated by the NHS!

  • thanks guys I have never felt so low , I really needed this hope you kind people share and I am going to def take time out for me.i think that having 5 year old twins and a teenager off school has added to my stress so I am going to aim for school return and work through things x

  • Hi Lisaains,

    Just to answer your question re antidepressants whilst on pred... I take Sertraline 100mg daily with no problems at all along with pred usually at 15mg daily but at the moment 40mg daily because of some particularly nasty symptoms. My experience with Sertraline has been very positive... A massive help with feeling so low.

    Hope that helps!

    Will x

  • hi , I think I will give my gp a call today and ask for his help . it cant be easy living with me at the mo if they lifted your mood maybe they can help for me too will xx

  • Hello Lisaains,

    20 months ago, I was given 3 days of intravenous prednisilone followed by pred. tabs. going down to 80mg per day right down to 5mg per day which I now take together with weekly Methotrexate injections. In the beginning I felt very strange and low and was unable to sleep hardly at all at nights. My G.P.gave me an anti-depressant called Citalopram 10mg per day (low dose). It made me feel less anxious and he told me if the Citalopram was taken in the morning - it would help me sleep at night - which it did! I am unsure if this will help you at all - but I took this drug for just 3 months. we are all "made differently" - I hope you find something that suits and hope you feel a lot brighter soon - best wishes.

  • thanks ,I to am struggling to sleep and this adds to the sadness I feel ,2 hrs sleep and I am back up , I really don't want to feel like this no more .xx

  • Dear lisaains,

    Sorry that your having problems. My advice is ; apart from all that is said above- which I fully agree with-, be thankful that you are alive; no small feet, for someone in your (our) condition!! You have already beaten the 'odds', by a long way, is being a 'hamster', for a while, really THAT bad? Don't get me wrong I'm not unsympathetic, not at all, just trying to give you a sense of proportion! Look on the bright side, at least, your not turning into an elephant- that would mean a whole new wardrobe, bed, and probably house too! (See I have a sense of humour too, bad jokes in the wrong place- a speciality of mine!).

    I hope you are not offended, by my comments, just trying to raise a smile, that's all.

    Please do let me, us all, know how you are getting on- my prayers, and best wishes, are with you.

    Take care


  • thanks Andrew every smile helps at the mo ,x

  • Hello lisaains,

    I just wanted to reassure you that steroids do not necessarily alter your mood they may make you feel 'hyper' a bit in big doses. I have been on 60mgs at most (short period) and then put on mycophenalate mofetil for WG/GPA and am now on just 5 mgs of preds.(took 2 yrs to get down to that)

    Throughout this time I have changed antidepressants a few times and now do not want to take them anymore (that is just my decision...and I feel normal again....ok I sweat at night and still feel anxious but not as much as when I was on SSRI's...in fact I feel better. I feel normal again. Maybe these sort of chemical supports can help in the short term....I was on them for too long and now so glad to be off them....feeling great , despite all the medication I have to ingest to ward off the 'beast'.

    Best of luck and take care,

    Sheila&Jessie (my sweet dog)

  • When I was first diagnosed, over 20 years ago, I was put on prednisolone and cyclophosphamide [now it's pred & mtx].

    I became so depressed - I used to be so laid back and a very positive person.

    apparently the fax from the consultant suggesting an anti-depressant and an anti-nausea tablet had gone astray.

  • Heyy,.

    I been on predisnolone now for 5 months started on 60mg and now on 12.5. (GPA vasculitis)My family have mentioned Than I have become a lot sharper in my tone and quick tempered now...and I know I never used to let things get to me. But it definitely.takes adjusting to taking meds every day coming to.terms with the iillness itself. Although I must admit my mood swings are the least of my concern...as the side effects such as cushingoid and losing no hair is depressin me more. I try n be conscious about the way I talk to people and quickly apologise as I know I've been rude or really blunt. In some ways definitely I think my personality has changed.

  • thanks xxx

  • Hi I have been on antidepressants for 2 weeks now after having been treated for wg for 6 years. i have had quite a lot of other things going on and in hind sight should probably have done it about a year ago As i have not been sleeping properly for months and getting really easily upset at work.due to being tired from lack of sleep and the tiredness the meds and illness itself takes.Hopefully I wont be on them for long but am enjoying going to sleep rather than clock watching till 4am. Good luck discuss how you are feeling with gp or specialist nurse. Having sometime to talk with a counsellor might help sometimes we put a face on for family and friends and we need to off load. Good luck

  • Hi lisaains,

    Regarding the second part of your question, that nobody has answered so far, since most replies have addressed the 'depression' issue ....

    "also I don't feel I have chest pain ,or other symptoms of the illness now so could I be cured alone of the pred or is it all just a mask has anyone else had the follow up results after pred and the is no real change ?"

    Soon after starting on prednisolone you should find that many of the initial symptoms will reduce or even seem to 'disappear'. However this is merely the pred reducing the inflammation and the vasculitis activity level, so the disease becomes less active, and is being masked as you suggested. There is no 'cure' for vasculitis, so if you stopped the medication, the the symptoms would reappear, and the active disease would then run uncontrolled.

    I guess you are taking both pred and an immuno-suppressant drug, and it is this last one which you normally take for longer period to ensure that your immune system is 'calmed down' to prevent it from attacking your body, which is the root cause of this disease. Once the drugs have been successful in controlling the symptoms, his is called being in Remission status and you will be on a low level of pred, which is known as the maintenance level.

    I suggest that you read more about the various aspect of vasculitis by reading an excellent document created by Vasculitis UK called "Route Map". This brings together all aspects about the many variants and lists their particular symptoms, treatments and outlooks for the future etc,


    Good luck ..... JontyW

  • thanks jontyw this has helped a lot , thanks to all you wonderful people for taking the time out to help me xx

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