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PA fingers

Posted , 9 users are following.

carole13351
carole13351

I saw my rhuematologist yesterday and he was most put out that I still am reluctant to take any medication for the PA in my hands. I have researched the drugs and in my case the benefits of taking these powerful life changing drugs is not enough to outway the possible/probable side effects. My fingers started swelling about 4 years ago triggered in my opinion by the menopause and at this moment 3 of my fingers have been through the swelling/ joint damage process but now in these three fingers the swelling has burnt itself out. I am left with 3 slightly bent, slightly stiff fingers which I would say I have 90% normal use from. At this time I have 2 other fingers which are active and look like are going through the same process. So for me it's a case of suck it and see as I do not want to take the risk or have the worry of what methotrexate and other similar drugs are doing to my body. In my opinion NHS docs are too eager to give you drugs and get you out of their rooms than to properly sit down and weigh up the pros and cons. For anyone who is just starting out with PA in their fingers I would say try not to do anything repetitive like using a keyboard to type as I believe this is what has caused my fingers to bend. Good luck everyone x

1 like, 24 replies

24 Replies

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  • mumma58
    mumma58 carole13351

    Posted

    Its a personal  choice!   auto immune suppressants  are not pleasant

    but if your generlized body pain is over the top   and joint  destruction

    is rapid  and  very  dibilitating   you will try  something  in order to have some quality of life! 

  • anneporter
    anneporter carole13351

    Posted

    You always have to consider the pros and cons of any treatment. To be fair some doctors want to hurry you out. Some doctors dont have enough time to discuss.-what can you discuss in ten minutes? We need more doctors, waiting lists for appointments are too long, hence the time limit! People who are able to intelligently explore the internet and decide for themselves (and some doctorsw encourage this!!) are at an advantage. I pity those who cant. I am glad to hear that sometimes the PA stops, because I too suffer from it.
  • david12607
    david12607 carole13351

    Posted

    Everyone must come to their own decision, my view, is the one of preventative care. General facts and figures are exactly that, it wont gurantee an individuals outcome. Sadly 2,500 people per year die from asprin induced bleeding, its a shocking figure but the majority of people will benefit from the drug. No drug is side effect free.

    With respect to PA, my personal view is that of preventative care, i am under a watchful waiting approach just now, and will look to my DMARD options very soon.

    Once damage is done, it cannot be reversed, and with the majority of people able to benefit from DMARDs with minimal or no side effects i assume thats why its still a go to option.

  • donna87489
    donna87489 carole13351

    Posted

    I can only speak for myself but I wish that I had listened to my doctor when he told me I should start the biologics.  I may have prevented the permanent damage I have in both my hands now.   Eventually it became a quality of life issue and I decided I would rather risk the side effects than continue to live in pain or perhaps end up in a wheelchair.    It took ahwile to fine the one that worked for me and I still have flares but nothing like before.    I would rather have 10 years of quality life than 20 years of pain and suffering.  
    • david12607
      david12607 donna87489

      Posted

      Donna, sorry to hear about your pain but i am glad to hear you say that you found a treatment that worked for you. Can you tell me, what treatment worked for you? Also, with flares are these ok in terms of long term damage as long as they are transient? So the main thing is coping with the temporary discomfort. I dont know but i assume its the long term, even if low grade, inflammation that does the damage to the joints.
    • donna87489
      donna87489 david12607

      Posted

      I have been on Humira for quite a few years.   At first it was a miracle but after awhile it wasn't working as well so I had to take it weekly instead of biu-weekly.   Got off it for awhile and tried several other drugs (had side effects with most or they just didn't work). m  So now I take the Humira bi-weekly and have been on various doses of prednisone.  I was doing really well alternating 4mg/3mg of pred but then had a flare so took 20mg/15mg/10mg for three days and now am on 5mg daily till I see my Dr. next week.   Hate taking the pred because I know the damage it can cause so I try to get down to the lowest dose possible as soon as I can.   Unfortunately that is the only thing that will get a flare under control.
  • liz62474
    liz62474 carole13351

    Posted

    Hi Carole. You have given my faith in myself back!! I have been extremly unhappy taking medication for my condition, (fingers) and have made the decision to stop taking it. To read your post made me feel a lot better. I can stand the pain, but the fact that the medication is presenting other things in my body, not to mention trying to find life insurance!! 50% extra premiums. Also, after 9 months on it, there is no decrease and he now wants me to take steroids and another medication I just want to scream, so I AM going to stop. Thank you for helping me make the decision.
    • donna87489
      donna87489 liz62474

      Posted

      Not every med works for everyone.  I had to try several (with some minor side effects etc) before I found what works for me.   Had a bad site reaction form Enbrel, broke out in a rash from Remicade etc. etc.  Humira is the only one that has helped me w/o any side effectws but because I have been on it for so long I now need a low dose of prednisone too.   Holding my own and doing pretty well except for the occasional flair.
  • donna87489
    donna87489 carole13351

    Posted

    Taking theses scary drugs is a personal decision but for myself I can only say that I wish I had started on them earlier.   My right hand/fingers have permanent damage to the point that it is difficult at times to do things   For me, the fear of being in a wheelchair or not being able to care for myself is far greater than the side effects from the drugs, including death.   I would raher have some quality of life for a shorter time than be here longer but be an invalid.  I have been on Humira for quite a few years now as well as a low dose of prednisone.  I was told that the earlie you start on the biologics the less joint damage you will have.  I wish you well with whatever course you take
  • Guest
    Guest carole13351

    Posted

    Hi.  I don't like drugs either and strongly recommend you google celadrin - it is a natural fatty acid that helps stop the autoimmune response from happening in the first place.  Hope that helps.   Sue
  • liz62474
    liz62474 carole13351

    Posted

    Hi Carole, after my rant the other day, as my blood pressure had risen significantly, I sat down and wrote down the pros and cons. In the first list were , painful and possibly bent fingers. In the second were all the things I had been feeling all the time I had been on the medication, plus the possible life threatning issues. No contest really! so I immediately stopped taking them. Since then, I have felt free, have more energy, and a peace of mind. I showed my doctor the list and asked him which list he would go for and he had to agree with me. I now feel I can get on with my life, without this awful panic lurking beneath the surface.
    • carole13351
      carole13351 liz62474

      Posted

      Hi liz, that is exactly what I did and my rheumatologist, when I informed him of my decision, had no reasonable argument that could convince me to take anything. I am fortunate that in my case at this present time it is only my fingers that are affected and not the awful conditions that others on here are having to endure. For me personally there is absolutely nothing that can convince me that taking these very powerful liver damaging, cancer causing drugs are worth taking. I have three bent slightly stiff fingers that have been through the process and have two active fingers that look like ending the same way. I try and keep active, eat healthy and am working on trying to sleep well. That I truly believe is the only medicine that will work for me. Good luck and I hope you have made the right choice x
    • liz62474
      liz62474 carole13351

      Posted

      It is only my fingers too, and I completly agree with you. I have quite a few animals, so I have to get up and feed them all. I don't think about the pain, but if it is bad I take painkillers and get on with my day. I have a fairly high pain threshold fortunately, and I feel so much better within myself for having stopped the ticking time bomb, so I am so glad I made the decision. As someone else said if it is found early it is much better, and that is my other complaint although everyone I mention it to just shrugs it off. I was going to the hospital back around 2000, and nothing was suggested or treated and I am really annoyed about that, but hey - you can't depend on anyone else, you have to get the right thinking and go for it. Good luck to you too, we must keep in touch, I think we think along the same lines.  x
  • CA-Lynn
    CA-Lynn carole13351

    Posted

    I was diagnosed 20+ years ago and immediately started on Methotrexate, low dose, then built up the dose over the years.

    I have to tell you, in retrospect, in spite of the side effects, I would do it all over again in a heartbeat. Without it I my quality of life would have been terrible. Just terrible. And that would frustrate me, depress me, and the anxiety would probably have led to a heart attack. Not kidding.

    In the grand scheme of things, you decide for yourself. I personally wanted to maintain as good a life as I could possibly have and if it meant being nauseous one day a week, so be it. At least I was mobile and the pain and inflammation were under control.

    Three years ago the MTX stopped working and I went on Humira [in addition to half dose MTX]. And guess what? I feel better now than I have in 25 years. No pain, no inflammation, no nausea, no side effects whatsoever.

    So the choice is yours. But if you decide to go holistic or do nothing, you WILL pay for it. The inflammation will cause pain and then you'll be shopping for pain killers. Then where are you?

    Maybe it would be worth your time to voice the exact reasons for your reluctance to take the drugs. You think it will do something to your body.....WHAT is it you think will happen to your body?

  • CA-Lynn
    CA-Lynn carole13351

    Posted

    One more thing:

    So how has my body changed over the years?

    I've had blood tests every three months for the last 20 years and my liver is perfectly normal, as are all other systems in my body. No pain, no inflammation.....and I am not the only one in this case. My case is very typical.

    So I'm not sure what you think will happen to your body.....

    About your statement regarding keyboards and repetitive motion.....hmmmmmm.....I'm on multiple computers upwards towards 14 hours a day for the last  30+ years and my fingers aren't bent.

    • carole13351
      carole13351 CA-Lynn

      Posted

      Hi , have you got arthritis in your fingers? If not then they won't bend. Well done that you have been fine all these years but everyone is different and for my condition I prefer not to put my body through the biological changes that drugs can produce. It's a matter of risks out weighing the benefits. Hope you keep well though.  smile
    • CA-Lynn
      CA-Lynn carole13351

      Posted

      I have RA, PsA, and AS, and yes, I have it in my fingers. In fact, it's in most parts of my body.  But I started the DMARDS very early in the disease, which prevented permanent physical deformity.

      Sadly, most people who opt to forego DMARDS end up wishing they had decided otherwise.

      I hope you've taken a really close look at the risks because in the grand scheme of things, drugs are not the enemy here.

       

    • carole13351
      carole13351 CA-Lynn

      Posted

      RA is obviously a more serious condition and would get a different thought process of course! I hope you keep well smile
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