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Date: 08.12.2014
From: SammyO

Subject: Enbrel, Prednisolone and mood swings

Just had my second Enbrel injection and reducing prednisolone. I havent eaten for four days, no appetite, I have spent the last 3 days crying on and off, I feel like Im going a bit mad. I rang rheumatology who directed me to GP, got to GP and they said go back to rheumatology. Not sure what to do any more. I have been managing to go to work for the past two years because of the pred helping me to walk but now I dont feel I can cope any more. GP didnt offer me a sick note so Im stuck. Is this how thinga have to be from now on.
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Date: 08.12.2014
From: Patricia

Subject: Re: Enbrel, Prednisolone and mood swings

SammyO I am so very sorry to hear how sad you feel. This illness certainly tests us in more ways than one. One thing is for sure though you need to be seen by a medical professional :-) This isn't right at all that you are being passed from pillar to post when you are feeling so unwell. I have been taking Prednisolone for four years at varying doses and it can make you extremely emotional at times :-( The pain you are going through, that constant pain that just seems to be there constantly wears us down doesn't it? The fact that you have managed to get yourself into work for the last two years is amazing - and you should be so proud of yourself for that :-) You have been very strong and you are obviously a coper - so don't ever forget that. If it were me I would get back on to the rheumatology department - say your GP can't help and you are really not very well - and need to be seen - explain to them just as you have explained to us here. At a time when we are at our most fragile it seems we have to 'shout the loudest' - very unfair - but please don't give up trying - you need to be seen by someone and given advice and support. Please let us know how you get along. My very best wishes to you xx
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Date: 09.12.2014
From: SammyO

Subject: Re: Enbrel, Prednisolone and mood swings

Hello Patricia, thank you for taking the time to reply. I read your reply last night but sobbed through it and couldnt say thank you. Over the past 3 years, since I got the first arthritis symptoms my marriage has almost disappeared and I think your reply was the first time in those three years where Ive felt someone understood. I feel much better this morning. I rang Rhuematology Nurse and she feels my prednisolone taper was too quick and this might have made be feel bad. I have been on it for 2 year and it has kept me going but maybe the taper should have been slower. She is ringing me tomorrow with an appointment to review everything
I think I got so low I wouldnt have gone back to ask for help, I was ready to give up, but I didnt feel alone this morning and your advice was so good.
Thank you again so much for your kindness x
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Date: 09.12.2014
From: bsk

Subject: Re: Enbrel, Prednisolone and mood swings

Hi Sammy, just read your post. Coming off Pred too quickly can certainly make you feel rotten. I was advised to reduce something like 1mg a week. Hopefully the enbrel will kick in soon but it can be a roller coaster ride. You are not alone, we all get really low points and this forum is brilliant for getting a bit of support.
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Date: 09.12.2014
From: Willis

Subject: Re: Enbrel, Prednisolone and mood swings

Hi Sammy
Just read your post and can understand how you have been feeling, have been there too.
So glad to hear that Patricia's post gave you a little strength and that nurse listened to you.
I hope they help you throughout this as support is definitely needed.
At times I would have been lost without the folks on this forum , their support and words of help and encouragement have been my saving grace .
Lots of hugs , keep going xxxxx
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Date: 12.12.2014
From: Patricia

Subject: Re: Enbrel, Prednisolone and mood swings

SammyO I am sooooo happy to hear that the rheumatology nurse is going to review your treatment plan :-) You were very brave, when feeling so awful and so low, to pick up that phone and ask for the help. I am truly glad you did. As a fellow 'sufferer', along with all here, we well understand the pain both physical and emotional that you are going through. Please don't ever feel alone - because you are not - we are here for you. I am currently doing a prednisolone taper - my rheumatologist (who is fab) said no more than 1mg a month. I felt even that was too much for me having been on it so long - so I found a great taper plan and it takes 7 weeks to go down 1mg. I do 1 day per week at reduction of 1mg for one week. Then week two 2 days at 1mg less for one week. Then week three 3 days at 1mg less for one week - carrying on until week seven you are completely down by 1mg every day. I have managed to get down from 7.5mg to 6mg at the moment. I have stayed on the 6mg for a further month. I have been tapering from 30mg and I wish I was off them - but without them life would have been completely unbearable wouldn't it? I am sad to read of the difficulties with your marriage. I can understand how this happens. Chronic illness means we have no energy and are in constant pain. We can't do the things we used to and although we try to remain positive it takes everything out of us to do the most basic of tasks. Of course, we don't always look as poorly as we feel (which is normally pretty grim isn't it lol) and so the people close to us can't quite grasp what is happening. I suppose they are feeling lost too. However, through no fault of your own this illness has come knocking on your door and I hope with time and patience (and a treatment plan that makes your RA more bearable) your partner will support you and be there for you. I hope your weekend is a better one than last and that life starts picking up for you very soon. Please remember that you have dealt with a lot in the last three years so be kind to yourself and take one step at a time back to wellness. Okay, we may not be exactly the people we were before but it will be our 'new' kind of life and we can be happy <3 I wish you lots of happiness for the future. Please keep in touch xx
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Date: 13.12.2014
From: Suz

Subject: Re: Enbrel, Prednisolone and mood swings

That's such sweet message from 'Patricia' I can relate myself to your words and encouragements, a truly understanding message for fellow R.A sufferer. (sorry I had just had to comment on ur post)x
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Date: 14.12.2014
From: Patricia

Subject: Re: Enbrel, Prednisolone and mood swings

Suz - hello :-) Thank you so very much for taking the time to write - I truly appreciate your note - bless your heart <3
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Date: 15.12.2014
From: SammyO

Subject: Re: Enbrel, Prednisolone and mood swings

Hello Patricia
I had my appointment with the Nurse who has advised no more Enbrel and a much slower prednisolone taper, which is almost identical to the one you described. I honestly did feel like I was going mad, it was like one thing after the other and I just felt like giving up. But like Suz said your words and encouragement came at just the right time to get me back up again and not to give up and I appreciate your help so much. There was just something in what you were saying that fit with everything I had felt for such a long time but never felt anyone else could understand. I will keep checking back in to see how you an everyone else is doing too. Thank you again so much xx
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Date: 15.12.2014
From: Patricia

Subject: Re: Enbrel, Prednisolone and mood swings

Oh SammyO best news ever :-) I am so very happy to hear the nurse is helping you and supporting you. You have been very strong and brave <3 Please do keep in touch because I would love to know how you are getting along. You take gentle care - it has been a pleasure getting to know you xx
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