Hope

Hi all,

I never start threads these days, mostly I visit to offer my twopenny worth, especially to those of you who have PsA like me. There are always posts from recently diagnosed people who are quite understandably worried about starting on Methotrexate and other drugs.

I started with Methotrexate just over 2 years ago and have been through most of the DMARDs. All of them have helped me to some extent. I was very ill, virtually paralysed, at first but either Mtx sorted that out or possibly it was a severe flare, the like of which I've not experienced since. By nature I'm drug averse, but I've come to see the drug therapy for RD as pretty much the only way forward for many of us. There may be some who find another way that works but my experience is that the drugs have not had any real adverse effects, they've just helped plain & simple.

Last week I started Humira. It's amazing that someone like me is so happy about this, so hopeful. With PsA it's easier to meet the criteria for Biologics than it is for RA - you only needs 3+ swollen/tender joints. I had 10 so that wasn't really an issue. But there's a pay-off in that patients with PsA only have one or possibly 2 shots at Biologics at most. So in just over 10 weeks I need to have made significant improvement in order to be certain of continuing Humira. And if I 'fail' it may be a bit of a palaver to be approved for a second Biologic. The NICE criteria are a straitjacket for all of us I feel.

Never mind all that though, I am so pleased to have a chance of Biologic therapy. And I just want to say to 'newbies' - don't be scared of the drugs. This summer what I see in the mirror is quite a healthy-looking person who has taken quite a cocktail of drugs over the last few years. And more importantly I feel well too - plenty of energy, plenty of hope. If you are newly diagnosed, go forward and don't look back, things change but it's not all bad by a long chalk.

12 Replies

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  • What a lovely positive post for newbies postle, hey that's nearly a tongue twister!! Thank you for posting that & hope it does help. We have had a few who've been particularly concerned at the thought of being on the meds needed to control the disease & have focussed more on the meds than the option of not taking them so do hope it gives them the assurances they need.

  • Thanks heels! I've belonged to a couple of online forums since diagnosis and am increasingly aware that for obvious reasons they reflect the experiences of those of us with fairly severe disease or who are having a bit of a struggle to get the disease under control. I'd never play down the potential severity of RD, far from it, but I meet or hear about so few people who are actually pretty well. Yet they must be very numerous.

    At the moment I've started to envisage a future without pain, excessive stiffness or fatigue. And to realise that it may well happen. No flamenco dancing though, no skiing or working 70 hour weeks, but hey, I can live without those things.

  • Hi all

    Although I am new to the diagnosis of RA (june) I have still been living with it, without it having a name, for now I recognize 5 years. This last three weeks I have learnt that all my experiences, including hospital admissions have been progressively debilitating flares. ( No markers in blood tests)

    So yes the shock of a name to call it and coming to terms with an official diagnosis has taken me to some dark places. All this reading, especially by some of the posts on here have sent me over the edge with worry,but! On the positive side, there is something wrong with me, it is not my imagination , I am not a hypochondriac and one doctor dismissed me as saying my swollen knees and puffy ankles were cosmetic !!!! Some of the posts on here have been reassuring that I am not on my own.

    (Spike Milligan gravestone quote " I told you I was ill")

    There is a huge part we can play in our own lives to give us hope. It is nice that we can make some choices over what we can't control on our own.

    I choose not to say I am in pain. To do so immediate makes me feel Intensely down. Instead I say I am uncomfortable, it's not a lie! Sometimes I am more uncomfortable than others.

    A huge statement I constantly use has had a positive Influence on the way people see me and my abilities.

    I choose not to say I suffer from! Instead I choose to say " I live with".

    This has stopped people from telling me i can't something to asking me what I can.

    No I am not being a martyr,pretending everything is alright when it clearly is not ( especially visually) but using these changes in language has stopped people around me feeling that they either don't know what to say or gushing empathy that is not practiced and makes me feel even worse for myself.

    I have found one or two good friends that I can unload on, tell them about rubbish I feel, how humiliated I am and frustrated I am, how much pain I am in. I have learnt that not everybody who asks how you are does really want to know so choosing my words is better for my moral and theirs .

    So to all newbies, read between the lines in the posts and you will see hope.

    If you are not happy, make a note , note of ways you coped that you can pass it on to someone else or hospital,gp to make a difference in their journey.

    These are only a few of the things that have helped me but my hope is in Christ.

    Our journey is unique to every one of us, important to us, we all need to feel valued, hang in there take note of postle2 post I look forward to hopefully other users posting positive encouraging letters to keep my mood lifted.

    Remember be kind to yourselves.

  • I've found there's a very thin line (for me, anyway) between denial and recognising significant improvement and also between fear and acknowledging the seriousness of the disease. That's not an easy path to tread but it sounds as if you're on the case!

    And as you say, the journey is unique to all of us. I'm virtually incapable of summing up how the disease affects me, partly because it has been extremely changeable. As a result, I hardly ever question or doubt others' accounts of their disease. If it was 'just' about swollen, painful joints it'd be ouchy but simple, but oh no, it is so much more complex than that.

    I too have sat in a rheumy consultation reluctantly unveiling my melon-sized knees on skinny legs and been told that they were not swollen. These sorts of experiences happen all too often so we do have to be very honest with ourselves, very clear about what's going on and to be our own advocates. I really wish you well on this journey, thanks for replying too.

  • Hi postle2

    You have cheered me up no end. Like you I am drug adverse, but have learnt to accept the need if I am going to cope with my PsA. You are so right about the pay off, I am on my last chance biologic, etanerept/Enbrel and thankfully it helps me so much. But like you say it is the only way forward. It does not help quite as much as previous meds, but I suffer less side effects. It has been a roller coaster ride for me and your post has reminded me about the long journey, for me to get where I am today. If you said it could take 5/6 years to get you as stable as possible I would have laughed in your face. Patience is most certainly not one of my virtues. That's if I have any at all.

    But as you say to any 'newbies' don't be scared of the drugs. It is almost like a rite of passage to get the right formula for you. We are all so different, that what works for one individual may not be the best option for another. Use this forum, we have all been through hell and high water and will continue to do so on odd occasions. The members here are so supportive, many of them have some understanding of what you are worrying about, or indeed are experiencing. Postle2 is so right you must look forward! I would say for you to keep his post in your mind, one day you will, like me realise that we are all in the same boat.

  • Doesn't it just take a while, to put it mildly! For some of us anyway. I sometimes wonder whether the longer the disease has been lurking, undiagnosed, the longer it takes to get under control? That would make sense, but RD often defies a common sense approach so not sure really.

    So glad I cheered you up. You reminded me of that undoubtedly sexist rhyme:

    patience is a virtue

    possess it if you can

    found seldom in a woman

    never in a man

    Clearly I'm not a typical woman then!

  • Hi postle2,

    Thank you so much for such a positive post and glad to hear you are feeling well :-)

    Regards

    Sally (NRAS helpline)

  • Thank you Sally! And thanks for this great site.

  • Like you I have PsA and am on Enbrel along with Leflunomide for my sins, and I concur with everything that you and others have written in this thread. For me it was not just the drugs that helped but that I got 'my head' around it all. Once the head was in a good place then all things appeared brighter. I also took early retirement from work and have never looked back, as I can rest and play when I want and need to.

    And yes I do know the drugs are working as I had to come off for a few weeks through chest infection and that was when I knew all about them working! Long may it last and Thank God for the Researchers in Medicine, we forget sometimes to thank these people.

  • I couldn't agree more about the importance of 'getting our heads around it all'. That takes time doesn't it? I didn't really believe people who said things would improve, both in terms of adapting and of the disease itself, but they were right.

    So happy to hear that you're in a good place Georje.

  • I'm so happy to hear that you are well and feel positively about drugs. You are right, for those of us that are new to this, the drugs seem daunting and very scary, but lt is very good to hear that they DO work, once you find the right one.

    Thank you for sharing your experience and thoughts and I wish you lots of luck with Humira.

  • Thank you ShellyWelly. Good luck to you too, keep us posted about how things go.

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