Psoriatic arthritis and biologics

kbru75
kbru75 Member Posts: 4
edited 23. Jun 2018, 16:00 in Say Hello Archive
Hi everyone,

I’m 42 and was diagnosed with PSA at 21, remained reasonably well apart from the occasional flare up, until now. Last year I was diagnosed with cancer in the mouth! Which I’m told from medical professionals, given my age and gender, that it’s quite rare. I never smoked and didn’t even have a filling. A year prior to the cancer, I was put on a biological drug called Benepali (Etanercept). Now I know I can’t blame the cancer on that, but the problem is, my arthritis has gotten so bad that Rheumatolgy think it’s best that I start on a different biologic drug having already been on many different DMARD that haven’t worked.
I’ve been doing research on the biologics and I don’t know what todo. I’m scared I get cancer again, but then as it stands, with the arthritis as bad as it is in both knee joints, both feet and ankles, right wrist, fingers and elbow, my quality of life has dramatically changed. Will this flare ever go away if I don’t take biologics? I’m really struggling. Sorry to be so morbid. Any advice would be great. Hope you’re all as well as can be x


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Comments

  • [Deleted User]
    [Deleted User] Posts: 3,635
    edited 30. Nov -1, 00:00
    Hi and welcome to the forums,seems like youre having a tough time - there are many on here that will share experiences/recommend - if any help is needed just ask,we are here
    Al
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    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 PsA which has led to OA and have taken biologics for some years: none has worked (as people who are lucky enough to equate medical drugs with cure might define that word) but my current mix of humira and injected meth is controlling matters. I know that because my blood results are far better than I actually feel. :lol:

    People fret mightily about the potential side-effects from medical drugs but as I see it disease in all shapes and forms is a side-effect of life. It was thought that biologics may slightly increase the risk of contracting a cancer but who knows? These drugs are still too new for their long-term impact to be assessed and, as life is a lottery anyway, who knows if that is the case? I am sorry that you have already had to deal with so much so young but I would say listen to your rheumatologist, don't research too much on the net because that is generally not renowned for it's accuracy or honesty (other people's experiences are far from relevant to yours) and I hope that whatever you decide to do the quality of your life is improved.

    I had to fail on at least three DMARDs (individually and in various combinations) before I was allowed my first biologic back in 2004, humira is my third and final one. For me it's all been too little too late; a friend of mine who also has PsA is wonderfully controlled on six sulphasalazine tablets per day which must be nice. :lol: He doesn't understand my version of the disease, I don't understand his (talk about PsA lite :wink: ) I began back in 1997 (with one affected joint) aged 37,. I started sulph in 2002 then worked my way through meth, lef, cyclosporin, infliximab, enbrel and then humira. I am now 59 and have around forty affected joints, some with one, some with the other and others with both.

    I'm sorry, I doubt I have helped at all:. it's not been a good day but I wanted to acknowledge your post with more than a 'hello'! DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 27,697
    edited 30. Nov -1, 00:00
    Hello and welcome from me too.

    What a difficult dilemma! Please don't think you're being morbid. This is your situation and must be described clearly.

    I've never taken biologics for my RA which is well-controlled by a combination of methotrexate and hydroxychloroquine. I have had cancer (breast) before taking the latter two meds so they can't be blamed and I've now been clear for....oh about 25 years.

    I've been thinking what I would do in your situation. Firstly, I think I'd want to check out (on a reliable site) what else could possibly have caused my cancer. The NHS has a good page on mouth cancer. It seems there are other causes besides smoking and drinking. https://www.nhs.uk/conditions/mouth-cancer/causes/

    Then I'd want to check out, as you say you have done, the other biologics. But, again, I'd only check on reliable sites. I'd guess ARUK would have some info and manufacturers' leaflets are bound, by law, to list all potential side-effects. I'm guessing that cancer, of one sort or another, is a potential side-effect of most if not all but worth assessing them against each other. I certainly wouldn't go by anecdotal evidence.

    To be honest, I think, in your situation, I'd be expecting my rheumatologist and oncologist to liaise. If this isn't happening maybe your GP could help.

    Just a footnote. I was diagnosed with RA in 1961 and, apart from gold injections and penicillamine, didn't get any decent DMARDS until 2,000. By then I had two new knees and RA in virtually every other joint. Painful? Oh yes! I tell you this so that you will know that, if you feel you have to do it, it can be done. I wouldn't recommend it but I would also hate to have to make your choice.

    An afterthought. This is something I very, very rarely say to anyone but might steroids be an answer?
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • kbru75
    kbru75 Member Posts: 4
    edited 30. Nov -1, 00:00
    Thanks DD,

    You’ve been really helpful. It’s nice to be able to reach out to people who know exactly what you’re going through. The cancer stuff is all done and dealt with [emoji2] I hope! I’m just suffering with the PSA now. I thought I was bad, you’ve had a lot of bull to put up with too, you must be strong. At this point I’m struggling with the pain a lot. I was on tramadol along with naproxen but it wasn’t even touching the pain. I’m now on MST with top ups off oramorph and 800mg slow release ibuprofen, still in pain [emoji30] especially when getting up from sitting and walking. Does it get any better?? I always thought flares just lasted a period of time.
    Like you I’ve tried a few diff 1’s was on sulfasalazine but stopped as it’s not helping. Waiting delivery of Cosentyx which’ll take weeks so rhemy said in that time I can decide what to do. I’m gonna take your advice though and stop researching, it’s not helping.
    Thanks for replying and I hope you find some ease x


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  • kbru75
    kbru75 Member Posts: 4
    edited 30. Nov -1, 00:00
    dreamdaisy wrote:
    Hello, it's nice to meet you but I am sorry you have had to find us. I have PsA which has led to OA and have taken biologics for some years: none has worked (as people who are lucky enough to equate medical drugs with cure might define that word) but my current mix of humira and injected meth is controlling matters. I know that because my blood results are far better than I actually feel. :lol:

    People fret mightily about the potential side-effects from medical drugs but as I see it disease in all shapes and forms is a side-effect of life. It was thought that biologics may slightly increase the risk of contracting a cancer but who knows? These drugs are still too new for their long-term impact to be assessed and, as life is a lottery anyway, who knows if that is the case? I am sorry that you have already had to deal with so much so young but I would say listen to your rheumatologist, don't research too much on the net because that is generally not renowned for it's accuracy or honesty (other people's experiences are far from relevant to yours) and I hope that whatever you decide to do the quality of your life is improved.

    I had to fail on at least three DMARDs (individually and in various combinations) before I was allowed my first biologic back in 2004, humira is my third and final one. For me it's all been too little too late; a friend of mine who also has PsA is wonderfully controlled on six sulphasalazine tablets per day which must be nice. :lol: He doesn't understand my version of the disease, I don't understand his (talk about PsA lite :wink: ) I began back in 1997 (with one affected joint) aged 37,. I started sulph in 2002 then worked my way through meth, lef, cyclosporin, infliximab, enbrel and then humira. I am now 59 and have around forty affected joints, some with one, some with the other and others with both.

    I'm sorry, I doubt I have helped at all:. it's not been a good day but I wanted to acknowledge your post with more than a 'hello'! DD


    Thanks DD,

    You’ve been really helpful. It’s nice to reach out to people who know exactly what you’re going through. The cancer stuff is all done and dealt with [emoji2] just suffering with the PSA.

    Thought I was bad, you’ve had a lot of bull to put up with too, you must be strong. At this point I’m struggling with the pain a lot. Was on tramadol along with naproxen but it wasn’t even touching the pain, now on MST with top ups off oramorph and 800mg slow release ibuprofen, still in pain [emoji30] especially when getting up from sitting and walking. Does it get any better?? Always thought flares just lasted a period of time!

    Like you, tried a few diff 1’s was on sulfasalazine but stopped as it’s not helping. Waiting delivery of Cosentyx which’ll take weeks, gives me time to decide. Gonna take your advice and stop researching, it’s not helping.
    Thanks for replying and I hope you find some ease x


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  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hello again, I've had a long day so will be brief. In my experience nothing deals with the pain to any great effect (I call them pain dullers because that is all they do, dull the sharper edges). I have learned over the years to keep my pain relief to the minimum so a) I can guage from the increasing levels when to stop an activity to rest and b) in times of dire need I have room to increase the strength of the relief to dull a little more than usual until I return to my usual levels of pain dross. I can tell which is giving me the most grief because they hurt differently but the only one I can 'control' to a certain extent is that caused by the OA. I have spent eight hours today in a car, sharing the driving from Cornwall to Suffolk so the preparation was one slow-release 100mg tramadol taken at 7am, topped up at 1pm with two 30/500 co-codamol. I am about to take another slow-release to be topped up at 3.30am tomorrow.

    Pain is distressing, frightening, isolating, demoralising and depressing. Things became much easier for me when I was no longer pain-free in my key joints because there was nothing left to remind me about how things could be. Pain is part-and-parcel of arthritis, I know that it is never going to go away, that it can worsen, and I have learned to live with it, not fight it. It took a while though. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben