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Wits end

I was diagnosed with RA about 15 yrs past.
Started on all the usual drugs, methotrexate, sulphasalazine etc.
Nothing worked with the exception of steroid injections (slow release 120mg)
Which would last approx 12 wks.
About 3 yrs ago my disease was changed to psoriatic arthritis, more changes of meds, adminulmab, golinumab, uskeskumab, excuse my spelling. These last 3 drugs as biological. Again, no effect.
This last year I have suffered 2 heart attacks and now consultant is trying to stop/cut back my steroids.
This is causing me a lot of pain and distress as all I am on at present is painkillers.
Add to this my joints are not swollen as before but I can tell you they are as painful and stiff as before.
It is like they do not believe me when I tell them the pain I am in.
My quality of life has gone downhill fast, I find doing simple tasks very difficult and sore.
I am so hacked off at present and just cannot see a way out of this, thinking of trying an alternative medicine myself.
Sorry for the rant I am just so down at present.

Should have said I am male 61 and live in the uk.
Other ailments are u.c. With the removal of my large intestine 3yrs ago,
Heart attack 1 yrs ago and 3 months ago.

Thanks for listening.
Regards
Bobby

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Comments

  • VickiN moderator
    2 years ago

    Hi Bobby!
    Thanks so much for taking the time to stop by and share a bit of your journey with us. There are so many of us that can appreciate what you mean when you say if feels like the Doctors don’t believe that you’re in pain. It’s especially hard for those of who struggle with chronic pain… just because we can cope with it, doesn’t mean we are pain-free.

    What sort of alternative medicines were you thinking about trying? I can understand that it’s difficult to find PsA medicines that don’t exacerbate heart conditions. Did your Docs recommend anything for reducing your heart attack risk?

    We’re always here to listen and support you. Warm wishes,
    -Victoria, Community Moderator

  • bros author
    2 years ago

    Hi Victoria,

    Many thanks for the reply.
    Re the heart, I have been given a beta blocker long term I also take aspirin.
    Short term I am on an anti clotting drug for 6 months.
    At the present they seem to be terrified to give me the steroid injection I usually get which is every 10/12 weeks, this drug does make a great deal of difference but we are at loggerheads at present.
    As far as I know I will be going on inflixumab infusions next, this is another biological from the “mab” family so I dont really hold out much hope tbh.
    I am getting to the stage now that I will try anything to get my life back.
    I would love to try medical marijuana but it is not available in the uk.
    I have read a bit about the CBD hemp which is available here and have just order some (paste) I’m told it doesn’t taste very nice but has high cbd levels in it.
    So here goes hope it arrives today.
    Ah well away to get my toast and another batch of pain killers.

    All the best and thanks
    Bobby

  • VickiN moderator
    2 years ago

    Hi Bobby,
    Do you also suffer from psoriasis? I know that beta-blockers can make existing psoriasis worse, so I hope your skin is staying happy.
    I would still be hopeful about the infliximab (Remicade). The “mab” means that it’s an antibody, but all of these biologics target different parts of the immune system. Sometimes it takes going through a few to find one that works, so hopefully the Remicade targets the right thing for you.
    We have a number of people here that use the CBD (oral and topical oils) with great success, so fingers crossed that also does the trick! We have some more info here if you’re interested:
    https://psoriatic-arthritis.com/clinical/marijuana-help-relieve-symptoms/
    Medical marijuana is currently illegal here in Canada, but they are gearing up to decriminalize it on Canada Day (July/01) 2018. I think many countries will follow suit over the coming years.
    Best wishes to you today, I hope it’s a restful one.
    -Victoria, Community Moderator

  • bros author
    2 years ago

    Hi Victoria,
    Yes I also suffer psoriasis, scalp,elbows and ankles seem to be the worst. (Scratches itchy head!
    Thanks for keeping me right on the mab biological medication, I thought they were from the same family of biologicals.
    Makes sense what you say working in different ways, this gives me renewed hope for Inflixumab.
    My CPD package arrived an hour ago.
    It is 26% CPD full spectrum hemp extract so we will see how well this goes.
    I will let you know in due course If I feel any benefit from it.
    Thanks for the link to the CBD thread, will be sure to read through that.
    All the best.
    Bobby

  • CathyD moderator
    2 years ago

    That sounds promising, Bobby! Thanks for checking back in and updating us. Hope you have a great weekend! 🙂

  • bros author
    2 years ago

    Hey Cathy,

    Well that’s me been on the CPD paste and oil for a few days now.
    Within a few hours a fair bit of stiffness eased from both my hands and wrists, this as you can image was a great feeling.
    The stiffness and pain is back but does ease after someCPD.
    My psoriasis is certain not as itchy as before.

    Early days will report back soon.
    All the best
    Bobby

  • CathyD moderator
    2 years ago

    Hey Bobby! I am in the UK too – I am super interested to hear how you get on with the CBD. Hoping that the Remicade brings you some relief, do keep us posted!

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