I am so sorry you are feeling so low. You do seem to have such a lot on your plate.

Do you have a rheum nurse helpline at your hospital you can ring for some advice? They usually phone you back if you leave a message... that would be a good place to start as they may be able to give you some extra steroids - which would help in the short-term. Alternatively ask to speak to your consultant's secretary - as they can be key to getting help quickly.

I am interested that you were told to go back on the aziathioprin. I have lung problems too and was told to come off it and stay off it!! I have bronchietasis. My rheumatologist wants me to go back on sulphasalazine again... to see if that will help. I am also on the new anti-tnfs (humira) but am still on steroids.. which we are hoping to reduce as they think it might have caused liver problems!

I think it is a fine balance between the drugs... I would double check with rheumatology if going on the azathioprine is really the right advice. Then when you next go to see the respiratory clinic you can double check again with them. The RA drugs do also help keep the RA generally under control - which in turn would help the lungs - this is what I was told yesterday at the respiratory clinic!

I did find Aziathioprin negatively affected my mood as well... so that may be partly the problem - although it is fair to say that RA itself gives us a low mood. My consultant said that is why she wanted me on the anti-TNF's (biologics) - as that it would also help my mood. I would also ask the Rheumatologist about the newer drugs and the availability in your area.

It can take a while to get the drugs right - as they take a while to kick in - so we all have found that very frustrating.

The best advice I was given was: Try and do something small for yourself each day... (eg watch TV programme, read, go for short walk) and something bigger once a week (eg a walk/meal with a friend, shopping - if you like that!). Making sure I do this has helped too. But be reassured you are not alone feeling low... there are many of us on here who have dark times too. I try to look for little pleasures - coffee with a friend. Maybe someone can sit with your husband for a little while so you can go out.

All the drugs have side effect - so it is worth seeing if you can get a rheumatology appointment (even with the nurse) to chat through your options. Was there a reason they didn't use methotrexate as that is usually the first option - I didn't get on with it, but it works really well on my daughter.

Hope that help a bit... but there is light at the end of the tunnel - it can just take a while getting the drugs right.

Anne x

please don't be sad Gogs - you have us to off load what is on your mind.
How have you been feeling after typing the thread?

I read this earlier when I was in hospital and been thinking of you all day, now I have tucked myself up in bed with no interuptions I wanted to say you have support and guidence on her, I read Anne's & Jenni's reply. Hopefully they have mentiomed things that you are interested in from their ideas.

I wish you well, and am thinking of you.

Sorry I cannot put more down as have been dosed up with meds from the hospital and on a floaty cloud somewhere & dozing off too.

Take care
Hugs to you
Jane
Xxx

So sorry you're feeling down in the dumps. you've had so much to deal with so it could be life stresses that have triggered this or it could be the drugs or the illness itself or some combination. Eventually I'm sure you will work out which is/are the culprit/s. Meanwhile though I think a call to the nurse or a discussion with the GP is in order. There are lots of things to try to resolve this and you will know what's right for you once you know what's on offer. If it does turn out to be the drugs that you're on then I'm sure there are other options. I felt the same as you last year and I had some counselling which helped me. I just needed some time and space to come to terms with life changing illness and to get my head round the new me.
There are better times ahead for you, just remember that. xxxxx

How are you doing today gogs?

YOU ARE ALL FABULOUS AND INCREDIBLY SUPPORTIVE
I've pulled myself up from the pit and I'm trying to fight the good fight again. All the advice you have all given me is very sound. I think I hate the Azathioprine as it really upsets my
digestive system, and the foul taste in my mouth means that I'm constantly throwing food in the bin I've bought because it suddenly tastes horrible and I no longer like it.
I'm also fed up of being this full-time carer to my husband now. I know I should be pleased that things are not worse - and I am, but the daily demands are huge.
Today I got to speak with two other carers who's wives have had strokes and it did help, luckily for them they have their health but they still expressed a lot of the feelings I have.
I go back to the chest consultant in ten days and will talk with him again about the medication, the rheumy consultant has left it to him because of how the RA has affected my lungs.
I also realised just a few days ago that I am grieving the loss of my career. I've done some reading and realise that very many people get seriously depressed by retiring - I think that's where I am!
Within a matter of months I went from being a person with a profession who was still working and therefore had my title , to being someone who suddenly had become sick and was also a full-time carer.
I could say 'I am Gogs and I am a....................' to being a nobody, someone with no identity. You see I now realise just how identified I was with my work, how important it was

Back to Rheumatology, I have in the past tried the help line for the nurse at the hospital I go to but I have to say I didn't find it very useful. The rule is you phone and leave your message, the understanding is they will try twice to contact you. The first time I gave them my cell phone but unfortunately didn't get to it quick enough in my handbag and they phoned off. The second time I gave them my landline and they left me a message to phone them again - see the start 'leave your message!' and we're back to square one. Also when I last mentioned this to the consultant because she said I should have phoned for a steroid injection (that was before I started on oral steroids), she told me in no uncertain words that me leaving a message then not getting to answer my phone quick enough was not good enough!!

One last question I would like to ask - 'does anyone else find oral steroids horrible tasting?' They leave a very nasty taste in my mouth and I wondered if any of you might be taking enteric coated prednisolone, and more importantly did your GP agree to prescribe it as it's more expensive than non-enteric.

Thanks again to all of you, you're all such a tonic to have contact with
Gogs xxxxxxxx

HI Gogs - it's good to know that "you've pulled yourself up from the pit"- it's not a nice place to be. I haven't got any experience of foul aftertaste, but it sounds very unpleasant - I suppose you must have extra sensitive taste buds - are there any sweeties or mints that can help to take the taste way? You know the old "spoonful of sugar makes the medicine go down, the medicine go dooooowwwwn , med ....." - sorry getting carried way with Mary Poppins then!

It's tough adjusting to life out of work - but you are more than a job title! You are a special person in your own right. You're also a lot more than just an RA sufferer - that's only one part of an interesting and complete individual. It sounds like you have lots of roles at the moment, and some of them you'd not choose if you had the choice - sadly life doesn't always follow the path you want it to, but hopefully you can steer yourself back given time. At the moment, you've got a lot to deal with, especially with being a full time carer - that is a relentless task. Have you tried breaking up the routine by setting little goals for things that you (and maybe hubbie) can achieve. I use a system called Mindstore, and I draw a page for a goal that I want to achieve - at the moment it's being mindful and relaxing for a few minutes several times each day, for one whole month - then each day I tick it off and at the end of the month I feel good that I did it, and of course simply learning how to relax is very helpful for my mood.

There's lots of different approaches to relaxation and positive self development, perhaps you'd like to explore some and find what suits you.

I find this helps me Mindstore

Very best wishes - Sylvia xxxxx

Very best wishes Gogs - thinking of you - Sylvia xx