Hi everyone, as someone who has had RA for last 30 years, was diagnosed at 34, I have tried most meds, the only one that truly changed my life was embrol. I was one of the first patients within our rheumatology dept to go on it. I had about 8 years on it. I had small flares from time to time, and methotrexate was givenas add onion small dose, I had been on it previously and had the side effects of nausea etc, theusual , but on the whole was well and able to work part time. 2 years ago that changed when I developed pneumonitis, was in hospital for 2 weeks on oxygen. As a result my meds were withdrawn as they were 99% sure it was max that had caused it. Six months on Prednisone, then abatacept, then Baricitinib, and nothing has worked. Been in pain the whole time, particularly wrists,shoulders, one of which has been replaced. The depression has been ongoing since my hospital stay, due to try Rituximab first week of June, should have been May 10th, but they have cancelled owingto my holiday 1st June. Only have 1 year 8 months to state pension retirement, have been told I cannot retire early and claim pension on medical grounds. Why is it that we are left in pain while waiting for treatment? You would not treat an animal this way, My husband is my rock, but it is affecting him seeing me in constant pain. Sorry about length of this post, and the fact I may have posted some of these details before. Just needed to open up, feel useless, and sometimes don’t want to be here anymore.
Depression for last 2 years: Hi everyone, as someone... - NRAS
Depression for last 2 years
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I'm so sorry , rant away so much understanding here , unfortunately not in the general world . At least you have a blessing in your husband . Sending you a hug not much I know , but I wanted you to know I care xx
Like Nessa28 so sorry you’re feeling so terrible, and am 100% with you on why oh why......... you would be prosecuted if you left an animal in such a way, (and rightly so) but we can be left for seemingly an eternity, and other than those whom live with us and this horrible disease others are unable to comprehend the enormity of it all. I think I can speak for most on here when I say that we’re thinking of you, sending BIG hugs and we will try to lift you when you need it most......be kind to yourself x x
Awwww lots of gentle hugs sent to you and your rock of a husband, really hope you get some relief soon, I no it’s hard but keep your chin up and positive thoughts as much as you can xxxx
Given everything you have been through, and for so long, It's really not surprising you are depressed. Have you told your GP how you feel or asked to be referred for counselling? Sometimes just talking things over helps you straighten things out in your mind. In your position I'd also be investigating a way of getting ill health retirement, some form of benefit to help ease things. Have you ever contacted the Citizens Advice or similar organisation as they have a wealth of information which could help you? I sincerely wish you all the best
Thank you, yes been to citizens advice, cannot retire early, on medical grounds.
I'm so sorry you are going through this, I really know how you feel. I get so depressed and it ruins my relationship with my family. They try to understand but it is very difficult for them. I reach retirement age in July 2020, I will be 66yrs old and would have worked for 50years. It is simply immoral and cruel that we have to keep working when some days just getting out of bed is a mammoth task. The pain we are in is truly unbearable most days and yet we get no help. The support on here is amazing, I don't often write a post but I read them daily and it always inspires me. Ranting is always good My best wishes to you.
Callabag64-
I can completely relate to you. Although our diagnoses are different (I have Psoriatic Arthritis, Psoriatic Spondylitis, Fibromyalgia and chronic headaches/migraines), the effect they have on us is the same. Rather than write a lengthy post, I’d like for you to read my story I wrote on PsoriaticArthritis.com. It details my experience with what you are dealing with. I find hearing similar stories lessens the feeling of isolation we all feel and I hope you’ll read it and be comforted by knowing you aren’t alone. I also hope the conclusion will shed some insight as to the mentality I’ve adopted that helps me, and can hopefully help others, get through the really tough and painful times. Also, I started on Embrel, went to Humira and then went Remicade; I highly suggest Remicade.
swimming my body rehab only once a week body says thank you !
I don’t understand why they’ve said you can’t retire on ill health grounds 🤨. At the very least you should be able to claim employment support allowance if you are physically unable to work due to a chronic health condition. If you go and see your consultant and your GP I’m sure they would be in agreement to help you with your claim. I hope you’ve considered or are already getting PIP ? The thing I’ve found is they don’t make things easy to claim anything but if you don’t try you’ll never know. In my case I was lucky I suppose because I worked for the NHS and they made me retire due to ill health I was devastated at 1st because I loved my job but I know they were right. I totally understand the depression you’re feeling I think it’s standard for those of us with RA. My husband also doesn’t like to feel he can’t do anything to help and he’s my rock too. I hope things turn around for you soon and you can feel better soon at least the weather if cheerful at least that’s something. I think you need to buy yourself something nice or just go out for an hour doesn’t have to be expensive and you don’t have to go far. Works for me. Sending you a hug 🤗
Who told you you cannot retire on medical grounds? Have you checked on that? It really sounds as if working even part time is just too much for you. Speak to your doctor or your rheumie nurse and see what they advise.
Good luck with Rituximab.....I have been on it since 2016 & it has made a great difference to my life.....speak to your rheumatology nurse about getting all the tests done & a start date booked.
When I first started on it my infusion dates were booked 6 months ahead....hopefully knowing you have a start date will make you more optimistic.
Thank you for your support.
Don’t know where you live, but here in Derbyshire, I have to phone the nurse advice line, which is an answer phone.you leave a message and they are SUPPOSED to get back to you. I have been in touch with PALS on a number of occasions to complain, and once my husband actually went to the hospital to complain at the department, because no-one had got back to me.