Just diagnosed with PsA, equally terrified of illness and treatment!

Hello,

I've just been diagnosed with PsA, which is affecting mostly my elbows, neck and jaw so far with some more minor problems with lower back and knees.

I'm sure this is normal but I'm absolutely terrified. I'm only 30 and I'm just so frightened of how bad this is going to get as it progresses over the years. I keep looking for hopeful stories but everything I read is just about how much pain everyone is in and how badly everyone seems to respond to treatment.

Tomorrow I start etoricoxib, which as far as I can tell is banned in the US for causing heart failure? Then onto Methotrexate in a few months, which just looks so risky and I've yet to read about a single good experience with it. Doctors are very dismissive of my concerns about the drugs and I haven't been offered any support or anyone to ask questions about any of it.

Sorry for the doom and gloom, I wanted to get that off my chest as I'm feeling very alone not knowing anyone else who's going through this.

Comments

  • Brynmor
    Brynmor Administrator Posts: 1,250

    Hi @CuriousSquirrel and welcome to the Online Community, great to have you here.

    With a new diagnosis of Psoriatic Arthritis it is no wonder that you are upset and frightened by the outlook. We have a very informative page on our website that gives full details and also includes information on managing your symptoms, exercise, diet and staying positively active.

    The page also includes Siobhan’s story, who was diagnosed at age 23.


    You also may like to meet 5 other people who live with psoriatic arthritis:

    There are quite a few people with the Online Community who also have the disease and I hope will be posting messages of support and advice.

    I also found information regarding Etoricoxib on the NHS/NICE website which details its use and the usual alarming contraindications but nothing regarding its banning from use. It is a non-steroidal anti-inflammatory drug (NSAID) and you can read all about those here.

    Methotrexate is a type of disease-modifying anti-rheumatic drug (DMARD). It’s used to reduce activity of the immune system for people who have certain conditions, including psoriatic arthritis:

    OK, quite a long reply! Do join in across the Online Community, ask questions and say how you are getting on: we are all here for you and you are definitely not alone.

    All best wishes

    Brynmor

  • stickywicket
    stickywicket Member Posts: 26,271

    OK, here is 'a single good experience' of methotrexate😉 but, first, an important reminder - no-one posts good news: everyone rushes to post bad news. People who are having a rough time want to tell others about it: people who find the drugs work just want to get on with life not talk about medication.

    So, why am I posting???

    Well, I was diagnosed with RA at 15. Back then there were no modern DMARDS. I had brief periods of remission but, with every flare, things remained worse. Which is not to say I had a bad life. I've had a very good life, 60 years of it with RA. But, once I was put on methotrexate and hydroxychloroquine, 20 years ago, things have been so much better. You should remember that, while we're on these meds, we're carefully and regularly monitored by blood tests so that any potential problems can be spotted before they become actual ones. The worst I've had is requiring a course of iron tablets two or maybe three times - in 20+ years.

    My advice would be to fear the disease if it's not controlled. Don't fear the meds.

    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Thank you for your reply, it's great to know you've found methotrexate helpful and having a good life! Yours is still the only good experience I have heard about, but that's more reassuring than none!

    I know rationally that a forum like this skews towards the negative experiences, because people are often looking for help with problems or worries (like me) but I had hoped to be able to prove myself wrong, show myself I was being silly worrying about methotrexate. So far I've not found very much evidence of that.

    I'm also frightened the monitoring won't happen because access to so many NHS services is still limited. My husband was diagnosed with diabetes last year and although his care has been so much better than mine (specific nurses he can get in touch with any time, dietary advice, free prescriptions, loads of literature and technology provided) he hasn't had a proper diabetic review yet. Since this disease is obviously not taken anywhere near as seriously, I don't hold much hope for getting proper care once I start the drugs!

  • Thanks @Brynmor for your reply. I see from both Siobhan's story and Daniel's on the video that anti-TNF medication has helped them. Also on the versus arthritis site there are lots of positive stories from people who have seen a huge improvement on anti-TNF after methotrexate failed. Is this something we can ask for instead?

  • YvonneH
    YvonneH Administrator Posts: 785

    Hi @CuriousSquirrel

    Welcome from me too. You will need to start with Methotrexate initially as it's one of the first control drugs for inflammatory arthritis along with hydroxychloroquine and sulfasalazine. You are probably right to think that most people who react well to these meds aren't members of this community, they are busy getting on with their lives.

    Here's a link to a previous discussion about members starting methotrexate

    The best thing might be to share these fears with your consultant/rheumy team. I haven't heard of anyone not having the regular checks, in the link to our website information on Methotrexate you will see how often you should be being tested and for what so you can keep an eye on this.

    Etoricoxib is a non steroidal anti inflammatory of a type called cox-2 blocker and is used for pain relief.

    Your discussion title will appeal to others with PsA, many people with rheumatoid arthritis will also be taking MTX for the same reasons as PsA - if you think it would help I could change the title for you to methotrexate worries or something similar.

    Take care

    Yvonne x

  • RogerBill
    RogerBill Member Posts: 65

    Hi @CuriousSquirrel @stickywicket makes a very good point about good news/bad news. There's a true saying that bad news sells newspapers and unfortunately as a result they tend to present a negative and depressing view of the world. Most people with arthritis have good days and bad days and I know that I spent more time on this forum and other internet sites on the bad days. On the good days I was doing other things and trying to forget the problems of arthritis.

    Also the drug manufacturers and medics have to warn us of all the potential risks and side effects. Again this can lead to an overly negative impression. In this country I think we are extremely fortunate in having an NHS which isn't driven by the profit motive which seems prevalent in some other countries. I've no medical training so when searching for information on drugs I place more trust in the UK's NHS and NICE websites which I believe present sound and accurate information on risk factors. For example a drug might pose higher risks for someone who is older or who suffers from high blood pressure or who is taking another drug which has adverse interactions.

    Sorry none of this answers your specific questions. Unfortunately with our GPs working under the extreme extra pressure caused by Covid they have less time than usual to discuss issues with their patients. Perhaps a phone call to the Versus Arthritis Helpline might help put your mind at rest.

  • stickywicket
    stickywicket Member Posts: 26,271

    Well, I have three friends also doing well on methotrexate who don't have time to post on here.

    It's a very tried and tested drug which is why it's a usual starting med. With anti-tnfs, people usually have to fail on three regular DMARDS first. That's because (a) they're newer so not quite as tried and tested and (b) They cost tons more money. I've never needed them. I'd had breast cancer some years before I started on meth. It's never returned.

    Once you get started on DMARDS you will have a rheumatology helpline number to call if necessary. In over 20 years I think I've called mine twice. I think rheumatologists take thiese inflammatory forms of arthritis every bit as seriously as endocrinologists take diabetes. It's just that there are far fewer of us.

    You are understandably scared but doing nothing is really not a viable option. Our immune systems are overactive and attacking our own bodies. Only the meds can dàmpen them down and hold them back.

    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • db10
    db10 Member Posts: 3

    Hi, sorry to hear you have been diagnosed with PsA, my mum, son and brother all have this condition. My brother is on a biological drug. My son and mum are both on Methotrexate, it has worked really well for my mum, she has no pain at all and has not had any side effects. My son was only diagnosed in July so it's still early days for him, he has also now been prescribed Sulfasalazine to take along side the Methotrexate. It looks like he will be prescribed a biological drug at his next review as the DMARDS have not been as affective for him as they were for my mum. Biologicals can only be prescribed when you have been on Methotrexate for 3 months and tried another DMARD as well. He has not had any side effects from either of his DMARDS, he has blood tests 2 weekly at the GP surgery, we do have to have this authorised each time due to current the shortage of blood test tubes but we have not had any problems with this so far.

    I hope the Methotrexate works well for you, it is understandable to be scared, we were when my family started on it but it is really important to prevent joint damage in the future.

  • Shell_H
    Shell_H Moderator Posts: 393

    Hi @db10 - welcome to the online community!

    Thank you for spending your time helping other users for your first post! I see you're here as you have 3 very close family members who have all been diagnosed with PsA and you're hoping that being on the forum will give you more of an insight in to helping your loved ones.

    I've found some information which may be of help to you:

    Do have a look around the rest of the community, and don't be worried about joining in any discussion which is of interest. We always welcome new voices and ideas.

    Lovely to meet you!

    Shell

  • Glad to hear your friends are also doing well!

    I thought it might be something to do with the cost of the drugs. Again, this is not like diabetes where all the latest technology seems to be provided for free in this country! I spent almost £200 yesterday on this illness and it's made me miss work many times with no sick pay. There go my plans to save for a house this year.

    Looking for more information and trying to find more people who were doing well on methotrexate yesterday led me into a panicky frenzy, so I'm trying to just stop looking now. Not happy about that as I like to be informed, but everyone I found through the pages Versus Arthritis pointed me to on Instagram there were just more horror stories, many many people saying the meds do more harm than good, and everyone who seemed to be having a good time was on anti-TNF. I feel like this is some sort of sadistic experiment, they make everyone go through months of trial and error so they can try and get away with giving us the cheaper stuff while the condition continues to attack our systems. It feels like an assault on bodily autonomy, not to be able to have a say in our own treatment.

    When I tell people I've been diagnosed they seem to think it's great because it will all be solved by magical drugs, but I've nearly missed work again because I'm out of my mind worrying about the treatment now.

    Sorry for ranting, I don't even need a reply to this, I just feel so depressed and alone and my husband is probably as worried as I am so I'm trying not to keep crying at him.

  • stickywicket
    stickywicket Member Posts: 26,271

    It's not surprising that you're feeling depressed. A diagnosis comes as a shock to many. But you're not alone. Lots of us have learned to live with arthritis and, indeed, to live well with it even if it doesn't seem so right now.

    I never do Instagram, Facebook or any other such sites as there's so much scary misinformation but, as for your friends thinking that all will be well once you're on the meds.....things will certainly be better but, with a disease like arthritis, we have to be mentally flexible and prepared to adapt. We can't have much of a say in our treatments', though. The 'starting DMARDS' such as methotrexate cost approximately £1-£2 per patient per week. Anti-tnfs cost approximately £600 per patient per week. And, if you read their leaflets, can seem even more worrying than methotrexate. It would make no sense to give people like me an anti-tnf when I'm doing well on a combination of methotrexate and hydroxychloroquine.

    I'm a bit concerned about the £200 you've spent 'on this illness'. If you need aids such as a pick-up stick, sock aid, kettle tipper these can be provided if you ask your local Adult Social Care for an assessment. The number will be under your local council's site. Don't do the alleged miracle cures on the internet. They're not and they don't and, when you are prescribed proper meds, might clash with them.

    Why not ring our Helpline people for a chat about it? They're very good.

    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Grace111
    Grace111 Member Posts: 24

    Hi @CuriousSquirrel

    as Stickywicket says, I am not surprised you are feeling depressed and stressed out, I was diagnosed with Psa when I was 20 and it is terrifying to hear that news. The good news is the treatments now are so much better and keeping a good dialogue with your health care team will really help. I was on methotrexate for years with no bad side effects and it really helped with both my arthritis and my psoriasis. It's best to start on well tried and tested drugs first as they are often enough for many people.

    My arthritis did eventually need more and different treatments but because I had always been honest with my rheumatologist we got there together. I am baffled that you have spent £200 on treatments? Be very careful of those selling utter rubbish after 40 years I am a total cynic about these things. Also as SW mentioned your local council have a duty to provide you with any aids you need so please ask for an occupational health assessment if you need one.

    If you are worried about money and work apply for PIP, get help to fill in the form it is daunting. Citizens Advice have some great information. Also remember work needs to make reasonable adjustments for you. Have a look here

    But most importantly keep talking, learn as much as you can from trusted sites like the NHS and the Versus arthritis website. Ignore to scare stories, they won't help you. Sending giant hugs

    Grace

  • Thanks @stickywicket and @Grace111. The money I have spent is on prescription certificate, blood pressure monitor, wrist braces, things like that. I know I won't have to pay the prescription costs again for a year now but I have so much more I'll have to spend. I spent money on seeing a nutritionist because the NHS wouldn't give me any help with that, my rheumatologist just told me to look online. I don't think anything I've bought is a nonsense miracle cure. I used to find massage helpful but not been able to afford one of those for ages. I will also have to try and find a way to pay for physio if I don't get an appointment soon because I'm scared to exercise but also scared to stop moving!

    I don't understand why we're not entitled to help with prescriptions when this illness causes so many people to miss work, and many of us don't get sick pay. So many people seem to get help but arthritis doesn't qualify you for anything despite being lifelong and debilitating.

    I can't afford to stop working but work is definitely doing more damage. I work outdoors so it's cold and wet, and a lot of lifting. Already can hardly afford food if I miss a couple of days' work in a month, so there's no way I can survive on less. No choice but to drag myself in so I can at least pay the rent.

    I have been trying to ignore a lot of scare stories, there's enough on Versus Arthritis alone to panic me about methotrexate, and all the inspiring stories are people talking about how much pain they're in despite being on treatment.

  • RogerBill
    RogerBill Member Posts: 65

    @CuriousSquirrel There is an NHS funded physiotherapist service. In my area it's run by Dynamichealth. Earlier this year I was able to self refer myself simply by completing an online form. I had an assessment and fortnightly physio sessions for three months and then they referred me to a local NHS hospital for an x-ray. Then they referred me for a replacement hip operation. All happened more quickly than I think it would if I'd gone via my GP practice which is currently very difficult to access. Hope this helps.

  • stickywicket
    stickywicket Member Posts: 26,271

    The pre-payment certificate is a good investment. A former GP of mine, when my sons were little, was furious that I wasn't eligible but I guess not every longstanding disease can be. Wrist supports are useful but also do exercises to strengthen your muscles as supports encourage muscle wastage and strong muscles do keep joints better supported and so less painful. Try some of the exercises on the 'Let's Move With Leon' forum. Gently, at first, and often is better than giving it too much welly all at once.

    I'm not sure about spending money on a nutritionist, especially if you're struggling to eat at all if you have to miss work. Nutritionists are not necessarily qualified, unlike dieticians, but, in any case, there's no prescribed diet for arthritis (and don't believe any of the snake oil salesmen who'll tell you there is). Just eat a normal, healthy, Mediterranean-type diet - lots of fruit and veg, little sugary or junk food. Once on methotrexate you'll probably need to stay off alcohol for a few months but then drink within UK limits.

    Your employer must, by law, make reasonable adjustments for your disability.

    @Rogerbill - I've seen you mention Dynamic Health before and it sounded great so I checked it out. Unfortunately, I think it's only in the Cambridgeshire area.

    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Thanks, I can't find anything like this in my area but I will keep looking! I think I am back on the list for NHS physio but for some reason they took me off when I first saw the rheumatologists so think I'll be at the bottom again now. Trying to find out how long I'll have to wait.

  • Yes, the pre-payment will definitely save money. I debunked my idea that some people got free prescriptions because they have so much medication though... If there's essentially a price cap, that's obviously not the criteria, and they're judging it based on who they think is more important. Also interesting the drugs they'll give me are only worth a quid or two a week! 🙄

    Thanks for the tip about wrist supports. I only wear them at night because otherwise I wake up hardly able to pick up a cup. I never wear them while I'm doing anything, and I do stretches and some VERY light resistance training every day (so sad my weightlifting days are over, that saved my mental health in the past!)

    I trust the nutritionist I saw far more than doctors who have told me that food makes no difference whatsoever. She has helped me figure out how well my digestive system is working, given tips about anti inflammatory foods and possible things to try eliminating, and helped me understand things like omega 3/6 balance and vitamin needs, as well as given movement and exercise tips too. It was expensive so my visits there will be few and far between but I left feeling much more positive than after seeing any NHS physio or rheumatologist or doctor I have come across so far!

    I eat loads of fruit and veg, very rarely eat sugar and processed stuff, and recently cut out refined sugar altogether.. aside from any unknown intolerances, I think I'm mostly doing the right stuff diet wise! Just trying to make sure I eat enough because I'm already underweight and I don't want to give anyone any more excuses to dismiss me!

    Thanks again for your reply, it's really helpful hearing from you.

  • stickywicket
    stickywicket Member Posts: 26,271

    Methotrexate is cheap because it is widely used having been on the market for so long. Believe me, the anti-tnfs were, until fairly recently, almost double the price until they came out of patent and bio-similars became available.

    It might be worth asking your rheumatologist next time about wrist splints. Some are more suitable for use when working and others when resting. Thank God the days are gone when I used to nearly KO my husband when I turned over in bed.

    If you're happy with your nutritionist fair enough. Just do remember that we have inflammatory ie systemic forms of arthritis. It's our immune systems which are faulty and in overdrive so , although an anti-inflammatory diet might help, we still need the DMARDS to hold back our immune systems.

    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Hermine
    Hermine Member Posts: 3

    Hi@CuriousSquirrel I am sorry that you are so worried. I understand as have been recently diagnosed myself, and have just started on methotrexate. The side effects sound very alarming. But as others have said, there are others who haven’t had a problem. I know it’s a challenge but I am just trying to take one day at a time and not worry too much about the future, which is always uncertain and rarely what you expect! There is a self referral in my area which my GP surgery told me about so it is worth asking your GP practice. As well as attending the Rheumatology dept at local hospital, the referral service have organised some physio for me and sent expertises to do at home, and this only took a few weeks. Good luck and keep us posted.

  • RogerBill
    RogerBill Member Posts: 65

    @Rogerbill - I've seen you mention Dynamic Health before and it sounded great so I checked it out. Unfortunately, I think it's only in the Cambridgeshire area.

    Thanks @stickywicket for checking this out. I was under the mistaken impression that Dynamichealth covered a number of areas. Ten years or so ago the Cambs physiotherapy service was part of the NHS but I guess as part of one of the government reorganisations of the NHS the service was contracted out. It still does work very closely with the NHS using rooms within at least two of our local NHS hospitals. But surely other areas have either an NHS physiotherapy service or a contracted out service similar to Dynamichealth?