I don’t post often as I feel all I do is complain but I have been floored by a flare which started in March and has clearly outstayed it’s welcome.
I was diagnosed with Psoriatic Arthritis almost 15 years ago (no skin issues for over 10 years). My treatment regime has been fairly standard: oral MTX then injections due to constant nausea, then sulfasalazine and now sulfasalazine and leflunomide along with reducing dose of prednisolone. Long story short, nothing is helping. I was at hospital again yesterday and have been set up for Adalimumab (waiting to hear about delivery) as disease activity remains high. I am at the end of my tether. I am exhausted and in pain all the time, can no longer drive and I can only leave the house if my husband is with me. I feel as though I’ve lost who I was.
I am awaiting a home visit on Thursday from my employer’s HR rep along with my direct line manager and I fear this is the start of a dismissal process as I have been off work since March and can’t give them a firm timescale for returning. The occupational health provider (work place initiated) has conducted 2 telephone meetings with me and the reports have both said I am currently unfit for any type of work and that the disability section of the Equality Act maybe relevant. As a result the occupational health service says they will not do any other follow up until I feel ready to return. I think this may have initiated the HR visit.
Sorry for going on but I am so low and can’t tell anyone just how bad I feel because they must be sick hearing from me that I’m tired and I’m in pain.
So not really a question more a stream of consciousness...
Angela, this forum is exactly the right place for you to come and have a rant. So don't feel we are sick of hearing from you, we're not. After all you have to put up with our moans. It works both ways. And there's nothing wrong with stream of consciousness, Virginia Woolf made a brilliant career from it.
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Thanks for that. Maybe I should start recording it and see if I can organise a room of my own to do so 💕
Rant away girl as we all know on here what it feels like to be in constant pain and the added burden off your work on your back, hope the new drug helps but if it doesn’t it’s on to the next biologic,I’m on my 4th one now hoping it’s the magic one Toximilumumb, sending hugs xxx
Thanks rab1874, there are days where I can’t even listen to,HS elf any longer 🙂
Rant away I do. I had a flare from February till mid September nothing made a difference then suddenly it disappeared it just burnt itself out. It does get you down and you see no end to it. BUT THERE WILL BE AN END. I do understand how you feel and other than venting ( this is the best place) there’s nothing you can do you feel rather useless . Hope things change for the better.
Sorry you’re feeling so low: I have no experience of adalimumab but friend on it is doing really well & far less side effects than dmards so 🤞for you. As for work, have you thought about ill health retirement, esa or pip could help too. Good leaflets on all from nras; at my best I cannot imagine working full time with this. Hope things improve for you soon x
Good luck with it all. Felt like you a year ago: it can get better than this, honestly. Take care.
Hidden just sending a hello and thinking of you. My flare was constant and I think at a lesser level than you by the sound of it but I think this whole process of RD is potentially soul destroying if things are bad. Try to find something good out of all this. Do lots of research and calls before your Occ Health and HR visit to make sure you have as much info and questions ready to hand and also think about what you want as they will probably ask.
Feel for you . I have just had a tough week after my first MTX pills and its been a huge struggle working every day . I have done it but wow.
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Thank you so much Deeb2908. I’m researching like crazy just now but with a very foggy head it’s hard to concentrate. Hopefully the meeting won’t be as bad as I’m imagining but I will post an update afterwards.
It is tough going at times. This network is good for understanding so please continue to share your issues and get some virtual support. Is anyone going to be with you to support you when these folk visit - if you are not feeling great might be an idea ?
Thanks AuroraB that is really useful advice. Other than my union rep I’m not allowed anyone else at this meeting so hopeful that they will be helpful x
Sounds like you're having a terrible time of it. I just wanted to say that your treatment plan has been almost identical to mine, and that things can still get better for you.
Like you I started on oral methotrexate, then injectable due to nausea, then sulfasalazine and an addition of leflunomide, followed by a course of prednisolone. Then when all this didn't help I was finally put forward for adalimumab (Amgevita), and since I have been on that I have been great!
The pain disappeared within a month, and I was able to do things that I haven't been able to do for months! Ever since I was a kid I wanted to do one of those GoApe courses (you know the zip-lines and tree climbing!) and I finally managed to do it! Honestly, the adalimumab has been a life-saver! Going from being unable to even dress myself, I've found myself climbing rope ladders, wearing heels for a night out, walking miles without problem, the improvement is astounding.
I hope this helps to give you a bit of hope for the future, I know how bad it can be when nothing is working. You just have to keep on keeping on, things can get better.
I sincerely hope that the adalimumab brings you some relief, keep us updated on how it goes!
Oh my goodness Sarah_89 that sounds amazing. I am so glad that the treatment has been successful for you. The thought of being mobile and pain free is wonderful. Fingers crossed for me and I’m feeling quite hopeful after reading your response. Thank you so much xx
Hello. Sorry to hear you've been in such pain. I know it feels like there's no end to it, and you just want to feel your old self again. You could just curl up in a ball and cry. I know I did and believe me, I'm no wimp. After 20 odd years in various meds, mtx stopped working, the extra dose made me feel like I was going to die. I felt like I had no energy at all. I was wiped out for the first 2 days. My blood white cells dropped to 0.6. I've had my 3rd biologic now plus 5mg prednisolone. After a few weeks I felt fab. I couldn't believe it. My fingers stopped swelling, my ankles stopped hurting, my arms and back also. Don't give up, there will be something. I'm grateful for now, who knows how long it will last. When they hit on the right med it makes a massive difference.
Bless you. It’s horrible feeling like this and work problems just compound it. I can only feel for you. I don’t know if you saw a previous post of mine about Ginger beer. It helped my mother no end when she was very poorly and suffering nausea and retching. It’s like a miracle. You will find it in the supermarket by the cola and lemonade. Comes in a 2 L bottle and not expensive. I had a reply from someone saying they couldn’t drink fizzy drinks so if you are like that my advice is to take the lid off and let it go flat. Might be worth a try for you. It won’t cure your flare but might help with the nausea. I really would be interested to know if you try it and have any success. Quite a lot of people have mentioned nausea on this site. Alternatively check out ginger for nausea on the Internet.
Thanks Esmereld. Ginger has been really useful in managing some of the nausea. Now the weather is a bit colder I like to grate some fresh ginger into hot water and add a little bit of honey. Very yummy especially with a piece of candies ginger on the side. Wishing you well x
Hi AngelaBon - that is a long flare, no wonder you are feeling so low! I think my longest has been about 5 months and that was enough to drive me crazy, so well done for hanging in there.
As someone who understands the brain fog feeling all too well, I wanted to just second the suggestion Aurora B made about having someone with you for the meeting. After all, there will be two of them so why not the same for you? If this is not possible, perhaps you could have a notebook with you to jot down what is being said - explain to your Line Manager and Hr rep that you need to do this because of the brain fog caused by the flare.
If your goal is to remain in employment, I would major heavily at the meeting on the fact that you are soon to start a new course of treatment, as your employers should really give it some time to judge effectiveness before reaching any conclusions. Also, if they are asking you to make any decisions/commitments perhaps it would be best to hold off doing so in the meeting and say you will consider and get back to them, so that you can take your time to chew things over and work out what is truly best for you?
Let us know how the visit goes, and I’ll be keeping my fingers crossed!
Thanks Monkeysmum. I don’t think most people really understand the brain fog if they haven’t experienced it. I can barely remember conversations when it’s bad so your advice to take notes is a great idea for me. Not able to hold a pen very well at the moment so I am going to ask if I can record the meeting. Best wishes x
Bless you.I was in your position three years ago.I was off sick from work for months with no end in sight.Finally HR terminated my contract through long term illness.Im now on disability benefits.Pip etc.The constant tiredness and exhaustion is a killer my friend.Try and stay strong.Listen to your body and do what is right for you.Best of luck to you😀😀
Sorry to hear that you have experienced this picti. I am manager of a children’s services team so have to be one my game’ at all times and currently I’m not! I totally understand that my employer has certain processes to adhere to but it’s still a horrible position to be in. Thank you for your kind words.
I worked in mental health and twenty years in the NHS.I loved my job.Unfortunately it all got too much.My body just gave in.Im struggling to at the moment with chronic exhaustion all the time and constant pain my lovely.My mood has been really low of late and don’t see any end in sight.im being prescribed anatriptlyn .Sorry for the spelling .To help with sleep and pain. I totally get it your not at the top of your game as I was just the same .My work suffered terribly due to the RA and exhaustion.In the end I had to make that decision.listen to what your body tells you sweetheart and I’m sure it will come good for you.Im totally retired now .Best if luck my lovely I wish you wellxx
I am truly sorry you are going thr this. I know I am taking a chance of getting removed but that would be alright. Hope for our ever illnesses and discouragement is beyond ourselves but it is only found in an awesome all loving God. That has been the only way I have been able to withstand the progression of this debilitating illness. It is my utmost desire that you get well and look ☝ up. My dear fellow friend may you find resolution to your work situation and may it be for your advantage. I will surely keep you in my earnest supplications to my Lord in heaven. ☺🌷🌹
I feel for you, I’m in pain all the time too, but I so feel for you having, to try and work
With it, hopefully they find a conclusion, unless people has suffered them self’s they
can’t know how awful it is , this is the right place to share and shout as much as you
like, people are always listening and understand, I just pray you get your work sorted
out, please don’t worry they can’t shot you , though sometimes you like us all
think it would be the answer, but it’s not ,please hope you get it sorted and you get enough money to live on with out the worry of work hugs Elizabeth
So sorry to hear that you are feeling so poorly and down. Fingers crossed that you will find something soon that does help you. This is such a great site to share your problems and get some support from others who know what your going through. Good luck for tomorrow. Keep us posted. 🤗🤗🤗 xxx
Angela your current situation is eerily familar to me.
I was diagnosed with psoriatic arthritis 15 years ago. I tried sulfasalazine but was taken off it at the first blood test. I opted to forgo treatment until I absolutely needed it. At the time I was generally fit / healthy & only 1 finger was affected by the disease. Its now progressed a lot.
My general health dipped at the end of last year. I had 4 colds from December 2018 to April this year, when I suffered a flair in my arthritis.
I didn't even know it could do this & make me feel this way. I have been off work for months on stat sick pay (which doesn't even cover my mortgage).
My mental health has also suffered. I have no confidence in my body, even though my flair seems to be settling. I can feel anxiety building to panic standing in a 2 person queue or even knowing I will have to queue.
Work have been surprisingly patient but... it can't last. So I have more anxiety over that.
Finally had an MRI on Sunday, Rheumatology appointment is mid November... now I am shi!!ing myself about starting a life long course of very powerful pharmaceuticals.
Bless you huney, I hope you find some relief with yr new drug, this RD is a terrible disease as we all know 🙈
Big hugs sent to you, and as previously said rant away!
Can you be legally let go under the equality act for disability? I’m not sure, you could look into being medically retired so u can start receiving yr pension?
Forgive me if this is a stupid option for you but trying to think of options for you so u don’t have to worry about yr job 🥰🥰
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Anyone has had an appointment with occupational health?
