Hi there

johnnyk32uk
johnnyk32uk Member Posts: 41
edited 24. Nov 2018, 11:40 in Say Hello Archive
Hello everyone,

I have been looking for a good forum/website and only found out about this via an ad on twitter, glad I seen it as it's looks great.

I am having Psoriatic Arthritis issues as the moment so I needed somewhere to have a good moan.

I have had Psoriasis since I was 20 and diagnosed with PA in my late 20s (now in my late 40s) . Since then I have been through all the NSAIDs and DMARDs treatments, and even though some have helped the pains but I just couldn't handle the side effects any longer.

The most recent DMARD I tried was Apremilast. I was on this for well over a year. After a few months it did help, not great but it did relieve some pain so as usual I put up with the side effects for as long as I could take. Then pains all started to come back so I stopped this.

From then it took me 6 months to see my rheumy and although I seen nurses and Occupational Therapists in between I was just told to treat the pains with pain killers. I did tell them I also had issues with headaches/migraines but they told me it would be fine on the painkillers. My next step I was told would be biological treatment but after bloods and an MRI scan I have been told I am not bad enough to get this treatment and was just being referred to pain management and I was offered nothing else. I have appealed the decision and also asked to change my rheumy and get a second opinion as I have never been as bad as I am now. I hate going to bed as I know how I will feel when I wake up during the night and have not slept well for a long time.

Up until recently I was taking the max dihydrocodeine and paras, probably more than I should because of the pain. I was told to stop taking these due to my headaches and I am now on meds for Migraines and nothing for my PA pains. The neurologist I seen said there should be no reason biologics would interfere with the migraines but also said I might have to choose between head and body pains! I was a bit shocked.

I have been off work for over 3 months but need to try and get back soon before Christmas but it's going to be hard. My work has been great (it is the NHS ironically) but there is only so much they can help with but they are trying.

My back is really bad, my feet and some toes are swollen, my hands and fingers, my hips as well and I can't even walk far without so much pain the now. I also work on a PC all day which is not good for my hands either!

I am trying to stay positive but it's getting harder each day. I am still waiting to hear back from my appeal with the hospital but I am not overly optimistic.

Anyway this site looks good and although it's never nice to see people in so much pain etc, I know I am not alone.

Cheers,
John

Comments

  • [Deleted User]
    [Deleted User] Posts: 3,636
    edited 30. Nov -1, 00:00
    Hi johnnyk32uk
    Welcome to the forums sorry you are going through a tough time at the moment we understand what you are going through, all here on the forum have Arthritis of some kind, everyone is willing to help and give advice.
    Just choose a forum and get started Living with Arthritis and Chit Chat being the most popular forums.
    All the best Christine
  • johnnyk32uk
    johnnyk32uk Member Posts: 41
    edited 30. Nov -1, 00:00
    thanks very much Christine
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello, It's nice to meet you and I am sorry you have had to find us. I too have psoriatic arthritis, it began back in 1997 but was not accurately diagnosed until 2006. Meds-wise, however, that made no difference, I began with my first DMARD back in 2002 and have worked my way through the majority of those, some of the anti-inflammatories and three anti-TNFs. One positive thing has been achieved in that disease activity is controlled (which is what these meds are supposed to do) but one thing has been constant: pain. It was more apparent in the early days because only one joint was affected from 1997 to 2003, but after that the rot truly set in. My current combination of meds is injected meth and humira, before I began the latter my CRP and ESR were in the 160s, a month after they went into single figures and have stayed there, that's how I know the meds are working. My mobility used to improve too but no longer. I've been using a rollator when shopping, and used to use crutches for ordinary walking, but after working with a personal trainer the latter are gathering dust.

    Constant pain is frightening, isolating, compromising, demoralising and depressing but it's what many of us on here have to deal with because it is part-and-parcel of arthritis of any kind. I tried the stronger pain relief but found it took me away from the pain rather than the other way and of course the pain never went away. I prefer to be in pain and alert, I also find the feedback from my joints useful as it tells me when to stop and rest for a while. Luckily I am female - we have fewer pain receptors then makes (for obvious reasons) so that helps but it is still difficult at times. My pain levels increase at this time of year thanks to the cold and damp weather (OA was diagnosed in 2011) so some joints have one kind, some the other and others both.

    Pain is very individual and hard to gauge, one man's agony is another's mild twinge. I attended a pain clinic and found it less than helpful as I was already doing their main suggestions (a little and often on the pain relief front and plenty of mental distraction) and I found the idea of joining their discussion groups horrendous: sit around and talk about it thus focussing on the problem? Why? Other people are not me, do not have my set of conditions or my life experience (they haven't missed anything on that front, I was born with auto-immune nonsense), I regard it all very much as my problem and it is up to me to make the most of what I have whilst I have it.

    The docs can only do so much, any form of arthritis is progressive, degenerative and painful. I managed to work for seventeen years but I was fortunate in that I was self-employed so could tailor things to suit. Pain drains our emotional as well as physical resources, I am used to functioning at a low level but it's my level, there is nothing to be gained in comparing myself to others or how I used to be. The reality is I am in my twenty-second year of it, I will be 60 next year and it is naturally getting harder thanks to ageing. My rheumatologist has given me all there is and it's working (although not in a way many would recognise as a positive) the GPs cannot do much for the OA, I'm between a rock and a hard place, up a stinky creek with a melting paddle but the disease does not define me, it has affected and changed me but it hasn't - and will not - beat me. DD
  • stickywicket
    stickywicket Member Posts: 27,101
    edited 30. Nov -1, 00:00
    You are certainly not alone, John. As you can see there are a lot of us in similar boats to you. I have RA which was diagnosed before modern DMARDS (let alone biologics) appeared on the scene. For me, for many years it was just NSAIDS with the occasional burst of steroids. Because of the lack of DMARDS, OA then set in and I had my knee joints replaced 20 years in. The hips followed later. The wrists and ankles fused themselves and, while it's great now (no pain there) it was very tough while it was all happening.

    I hope you'll be allowed access to a biologic. I've never needed them. Once I got onto methotrexate and hydroxychloroquine my life got considerably better. I wonder how your bloods have been all these years. The purpose of the meds is in the name – Disease Modifying Anti-Rheumatic Drugs ie they hold back the disease and, although this usually means less pain, it doesn't always. They can't take away damage done only prevent more damage happening or, at least, happening quickly. I think most of us on DMARDS still have to take pain relief.

    The trouble with 'painkillers' is that they're a misnomer. They don't kill the pain: they only lessen it. Painfree is not a good option to aim for as we develop a tolerance to painkillers so we need more and more to get the same result. I go for as few as possible as that gives me some leeway for the truly bad times. Normally I take only two co-codamol going to bed but I'm currently sitting on a hip replacement that's failing and has slid out of position so I'm on considerably more until that's sorted. Please don't take more than the guidelines say. It's very dangerous and the last thing you need is kidney problems. Besides, paracetamol can actually give people headaches if they take a lot.

    Anyway, let's hope you can have a biologic. If not, if might be worth trying to revisit one of the DMARDS. You really need one or the other. Painkillers will only deal with the pain, not the disease.
  • johnnyk32uk
    johnnyk32uk Member Posts: 41
    edited 30. Nov -1, 00:00
    Nice to meet yous also.

    Thanks for these replies, very inspiring, but obviously not great to hear about others in so much pain and for so long!

    I am now off the pain killers, or take very little due to me being on my migraine meds now, as said they did make my headaches worse. But of course all my PA pains are now back, I've got heat pads which help and hot baths help also for a bit and I just try to watch what I am doing but easier said than done sometimes. I would also rather have body pains than head pains......

    I hope to hear back from the hospital soon, and if I don't get on the biologics I think I will ask to try one of the DMARDs again, I've tried meth injections twice, first time they were OK, second time horrible side effects but they did help my joints but the other DMARDs were a lot worse so meth would be my best choice if I had to pick. I wasn't even given that option the last time I seen a consultant, they just referred me to pain management and I actually walked out before I said something I shouldn't have, and that is not like me at all but I was very upset the way I was and am being treated.

    Thanks again for your replies, advice and to hear others stories :D
  • barbara12
    barbara12 Member Posts: 21,276
    edited 30. Nov -1, 00:00
    Hello johnnyk32uk and welcome to the forum
    Boy you are having a rough time, sorry I cant help with the meds but the one thing we can do is listen, its good to get things off your chest..and I do hope you get the help you need very soon..
  • johnnyk32uk
    johnnyk32uk Member Posts: 41
    edited 30. Nov -1, 00:00
    thanks Barbara,

    i have been looking for a good forum and website for a while, glad to have found this, sure I will get some ideas that might help me and if I can help others as well even better.

    Cheers

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