Hi

Larrythelathe
Larrythelathe Member Posts: 6
edited 13. Apr 2015, 18:07 in Say Hello Archive
I thought I would try posting on here to talk to people with similar problems as I. Going through a bit of a bad patch.

I have seronegative arthritis, I have been having it treated for the last 9'years or so. I inject a drug called embrel. This drug was a light at the end of the tunnel after having terrible trouble with methotrexate etc.

I have been off work for the last 8 weeks as I got taken into hospital with breathing difficulties. I stayed for 10 days and when 7 weeks with out embrel.

I had a hard time in hos as they struggled to keep me breathing. It was a week before my consultant found out I was there. To be fair when she did find out she done ever thing she could to help me.

I'm wondering if anyone one else has had similar?

I am also wondering what you guys think about pain relief. I seem to play out a daily game where I want to not take pain relief but always do. I take codeien tramadol and anti-trip. I have how they make me feel but it hurts with out!

Anyway that's all rather negative. I am very lucky as my wife is awesome and keeps the kids happy and my morale up.

Comments

  • moderator
    moderator Moderator Posts: 4,085
    edited 30. Nov -1, 00:00
    Hi Larrythelathe

    Welcome to the forums where I'm sure you will get a lot of help and good advice from all the lovely people on here.

    It is a little quiet being the weekend, but I'm sure that someone will be along later to help.

    We are here if you need any support to do with using the forums. Many of the mods have some of the many varieties of arthritis and we all know about the feelings that go along with having it.

    Do read and post across the different topics that you will find here.
    All best wishes

    Mod B
  • stickywicket
    stickywicket Member Posts: 26,248
    edited 30. Nov -1, 00:00
    Hi larrythelathe and welcome from me too.

    That sounds like a nasty and scary episode. I can empathise as I once ended up in re-sus hardly able to breathe. I don't know if it was meds-affected. I was on meth at the time and I guess it played its part in letting a cold really take over my throat. I've never taken enbrel though quite a few on here do or have done. Are you being allowed back on it or is it a matter of finding something else now?

    Pain relief? I take it when I have to (I have RA) but try not to. I've never done anything stronger than cocodamol or, at m y worst, dihydrocodeine (except pre and post op) but that's partly because my stomach doesn't handle them well thanks to years of NSAIDS. Also, unlike you, I'm not trying to hold down a job as I'm now retired.

    I'm sure others will be around tomorrow. I might not as I'm currently on holiday but I wish you well.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you but I am sorry you have had to find us. I have lousy memories of Enbrel, it did nothing to ease my psoriatic arthritis but it did have a jolly good go at exploding my liver; as a result I ended up with three months of nothing which allowed things to get much worse. Whoopee. :wink:

    I am now on the unholy trinity of injected methotrexate, injected humira and tablet sulphasalazine. They control my PsA but do nothing for my osteoarthritis, which rolled up as a result of the joint damage caused by the PsA. Regarding pain relief I prefer to keep mine to the minimum so I can use the pain feedback to judge when I should stop doing things and have a rest. I take between two and four cocodamol 30/500 per day, but at the moment, due to a rough patch, that has been upped to the limit of eight. My unused tramadol was out of date so I have today ordered some more, just in case.

    We are all in very similar boats on here so already you know you are talking to an informed audience. We are very good at offering encouragement and support - I look forward to seeing your name here and there around the boards. I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • theresak
    theresak Member Posts: 1,998
    edited 30. Nov -1, 00:00
    Hello and welcome, though I`m sorry you are having a bad time at present.

    I have RA, and like you, I ended up in hospital in 2008 with respiratory problems. After a series of tests it was decided that the methotrexate was the culprit, so I had to stop taking it. I was taken in as an emergency, and due to a shortage of beds problem was admitted to a gynae ward, where the nurses knew next to nothing about RA. My rheumy never came near the whole week, which is one of the reasons I changed hospitals, and I now have excellent care.

    With regard to painkillers, I rely basically on good old paracetamol, topped up with tramadol when things are really tough. I can take NSAIDS, but try not to as they can cause other problems.
  • Larrythelathe
    Larrythelathe Member Posts: 6
    edited 30. Nov -1, 00:00
    Thanks for the replies it makes me feel better seeing other people in the same boat ( how wrong is that)

    Interesting reading about people's bad times with embrel. Meth caused me liver failure. At the time I was a bit flippant with it and rarely got my blood check... I do now.

    I tried going without pain meds today. Lasted a whole hour. I'm not sure why it bothers me so much. I geuse it's the stigma.

    Anyone ever had a bad pox type rash? My GP and consultants don't seem to know or worry about it. I reckon it's steroids as I have been taking them for months
  • daffy2
    daffy2 Member Posts: 1,713
    edited 30. Nov -1, 00:00
    Sorry to hear you've been having a bad time. Skin eruptions can be the body's way of dealing with something that's causing problems. A viral infection can cause spots, and eczema can flare up in response to med problems - as a friend of mine has been discovering recently - so that may be why your medics are not unduly concerned. The skin has been described as the body's largest excretory organ, and there is a view that it is better to let it get on with it, rather than suppress spots etc., assuming that there isn't any infection involved.
    Have you had any advice about non-med approaches to pain management - distraction, heat/cold application etc. If not might be worth asking about it, and looking on the AC website for info - or talking to the helpline.
  • Larrythelathe
    Larrythelathe Member Posts: 6
    edited 30. Nov -1, 00:00
    I have been to see a pain management specialist. The biggest thing I learned was I have the choice to say no. I guess I was unwilling to throttle back when I had to. I used to ride bikes in the alps etc giving me a good going over and then suffer.

    She slowly got me to stop doing feast and suffer. I am much happier saying no I can't do that but I can do 80 percent of that everyday.

    Today for example I had a great day in the sun flying my model planes it felt great. now though my feet are the twice their size and killing me. But I stopped before the no return mark so I will be back tomorrow.

    It's more the side effects of pain meds and the fact I know I have not taken them due to the withdrawal effect. Again the pain lady thinks I unduly worry about it.
  • OdamL
    OdamL Bots Posts: 11
    edited 30. Nov -1, 00:00
    There is nothing wrong is satisfying your body’s need for pain relief. Flares and unbearable pain is a part and parcel of arthritis, we need to live with it sadly. NSAIDs are often gold standard treatment for pain management. I rely on naproxen in case of flares. My joints are most of the times swollen, heated and even I am off to work like you, due to my ReA. I am glad you've wonderful family support, it does make a difference!!

    Odam.
  • barbara12
    barbara12 Member Posts: 21,093
    edited 30. Nov -1, 00:00
    Hello Larrythelathe
    And welcome to the forum,
    I see the others have given you lots to go on, what a rotten time you have had, but so glad to hear you have such a supportive wife, it wont be easy on her seeing you in pain like this.
    Like you I try and not take all my pain relief, I think if I do were do I go from there..distraction is a good way of dealing with things and talking to us lot really can help.
    I hope to see you name around the forum..take care..
    And welcome to Odam I don't think we have met.. :)
    Love
    Barbara
  • Larrythelathe
    Larrythelathe Member Posts: 6
    edited 30. Nov -1, 00:00
    This sucks 3am and my joints are screaming. I gave in to pain killers hours ago. Not got me very far.

    On the plus side. I have been lifted finding this virtual world. The wife had a sneaky look.

    Going to see if I can convince my GP I can go back to work. I'll let you know how that goes.
  • OdamL
    OdamL Bots Posts: 11
    edited 30. Nov -1, 00:00
    barbara12 wrote:
    And welcome to Odam I don't think we have met.. :)

    Thank you Barbara, for warm welcome, you are right, I am new guy here with reactive arthritis (though introduced and posted on few threads already on living with arthritis) , seeking some help/advice/support in this painful journey called life. It feels great to hear practical advises from fellow sufferers, isn’t it :D ?

    Hi Larrythelathe
    Have you tried acupuncture, ever for pain management? Personally I don’t think it makes a difference for pain relief apart from short time relaxation, but there are many who vouch for same. Aromatherapy is another one to think for.

    Odam.
  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Larry, if you deny yourself pain relief then it has much more to tackle when you do take it, hence the feeling of not much being achieved. In truth not a lot is achieved but, if one takes it regularly (say at five or six hour intervals) it does build in the system and dulls things more effectively.

    I need the pain relief and I take it because there are still things to be done. My life as a housewife hasn't stopped because I have arthritis, like me it grinds relentlessly on. :lol: One of the best moves I made was to stop working; I was self-employed so could tailor things to suit me but it did become too much and the relief of not having to worry about letting people down yet again was a true benefit. I wake every ninety minutes or so due to pain (I no longer move naturally in my sleep) but I have found ways of coping with it and the continual tired-all-the-time feeling. 'Do a little then rest a little,' is my mantra, and it serves me well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • Larrythelathe
    Larrythelathe Member Posts: 6
    edited 30. Nov -1, 00:00
    Hi DD
    I'm off work right know, will be until until the 21st. I'm the sole earner in our house. I very lucky though as I work for the government and they really have been first class. Although my boss looks to have age whilst I have been away.

    I should be getting a MRI any day know to see if I have developed a nudgal ( I have no idea if that's spelt correct) in my wind pipe. Apparently the arthritis can develop in the wind pipe. I'm really hoping it's a bingo as it's easy to remove I'm told.
    I had one removed from my hand and that worked well so here's hoping.

    I have gone crazy on pain relief that last few days and I have decided I. Ok with it whilst not working. But I'll go back to be a tight **** when I need to concentrate.

    Started ramping down the steroids this week as well. I am pretty sure the rest of the house is happy to hear that. Will be down to 16 tomorrow. Reduce by one every two days.

    Thanks for all the replies things are feeling my positive.
  • stickywicket
    stickywicket Member Posts: 26,248
    edited 30. Nov -1, 00:00
    Hello again. How's the steroid reduction going? It's often a tricky business. I hope yours is going to plan.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran