Hello!!

Cath
Cath Member Posts: 7
edited 26. Jun 2015, 06:32 in Say Hello Archive
Hello,

I’ve just registered and wanted to introduce myself. I was diagnosed with PsA at 28 (was in severe pain for a couple of years prior to this without the condition being diagnosed)
My pain has been quite well managed with a combination of methotrexate, folic acid and remicade infusions over the past couple of years, however, I’ve had a flare up in one joint (my elbow) which is driving my CRP levels back up through the roof.

My consultant firstly increased my methotrexate with no response, next step is to increase the dosage of my remicade infusions. If that has no effect he suggests the next stages would be self-injection (the cost of which is not covered by my health insurance) and finally surgery on the elbow.
I don’t want to continue any further down this road as I’m relatively young and don’t like to think where it will end up if I’m continuously increasing meds and perhaps considering surgery so I have just undertaken an 8 week diet and fitness program in an attempt to overhaul my lifestyle.

I’ve worked really hard to get active over the past few years as I firmly believe exercise is one of the best things I can do as someone who suffers from arthritis as well as keeping a positive attitude. I’ve been taking part in fitness classes but fingers crossed this fitness program combined with the diet will help.

Is there anyone on here that has undertaken or is in the process of undertaking a similar fitness journey? Are you on social media (Instagram)? It would be so helpful to have a community to support and encourage each other

Thanks and nice to meet you!
Cat

Comments

  • dreamdaisy
    dreamdaisy Member Posts: 31,558
    edited 30. Nov -1, 00:00
    Hello, it's nice to meet you but I am sorry that you have had to find us. I began my PsA in 1997 when I was 37 but wasn't accurately diagnosed until 2006 when my skin helpfully obliged with a bout of P on my soles and palms: I first went to rheumatology in 2002, and between then and 2006 I was classed as having an unspecified auto-immune inflammatory arthritis (my CRP and ESR were in the 160s). I didn't have any meds until 2002 (I began with the sulph) and with hindsight they were too all too little, too late. I am seven years in with the triple therapy of self-injected humira, self-injected methotrexate and tablet sulphasalzine: they have never reduced pain levels but I know they have slowed the progress of my disease which has to be reward enough. I have also gained osteoarthritis thanks to joint damage and now have around forty affected joints, some with both and some with just one or the other. Diet has a part to play but it won't undo the damage already done and won't prevent further. This disease is aggressive and requires aggressive treatment.

    My version of exercise doesn't bear any relation to those without arthritis but it's enough to keep me moving as best I can. I am further down this road than you and I hope you can achieve a better outcome than me: I can see the progress being made with the drugs when I attend my rheumatology clinic (I wasted years trying this, the other, this and the other and then something else because that was the thinking at the time) and wish I was born later than I was! I wish you well. DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • stickywicket
    stickywicket Member Posts: 26,239
    edited 30. Nov -1, 00:00
    Hello Cat and welcome to the forum. I'm sorry you had to find us. Twenty eight is young for diagnosis though I was first diagnosed with RA at 15.

    It must be very frustrating for you if the meds are no longer working as well as previously and also scary if your health insurance won't cover the proposed treatment. I'm guessing this means you do not live in the UK as the NHS pays for our treatment. I have a son in USA though and I know how difficult the health situation can be.

    A healthy diet and exercise which doesn't stress the joints are both essential to living with arthritis. However, we have auto-immune diseases and, even with healthy foods and regular exercise, our immune systems will remain faulty and the diseases will progress. Saying “I don’t want to continue any further down this road “ will not stop them. None of us want that but the meds are the only way to hold the disease back. They are not perfect and, as you have found, the disease keeps breaking through but, without them, we just give it its head.

    If you post on the Living With Arthritis forum you might well find one or two people on here who would also like to deal with their arthritis by diet and fitness alone. We old hands (I'm over 50 years in now) try to persuade them not to because we know the consequences. Because of your insurance problems you have less choice than most. I feel for you.
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • moderator
    moderator Moderator Posts: 4,080
    edited 30. Nov -1, 00:00
    Hi Cath,

    Welcome to the forum from myself and all the Mod team. Good luck with your plan for diet and exercise, I do hope it gives some relief. It will no doubt feel good that you are taking charge of your condition in some way. Do remember though the meds you take could have 'invisible effects' keeping the damage to your joints at bay!

    Us Mods have arthritis on one or more areas too and were here to help with any problems you have on the site

    Take care
    Mod Yx
  • Cath
    Cath Member Posts: 7
    edited 30. Nov -1, 00:00
    Good Morning,
    Thank you all for your replies!

    Sticky wicket.. your message was so sweet I can hear your concern..I'm not from the UK but I have private health insurance. For some reason they won't cover self injection but all other forms of medication/surgery are open to me. I'm not trying to combat arthritis through diet and exercise alone... the diet and exercise are in addition to the methotrexate/folic acid/remicade infusions... gimmie the drugs!! :D:D

    For me, personally, I find when I exercise and eat well I feel better, I sleep better, I'm less stressed and stress has a direct impact on my auto immune disorder so I'm hopeful it may have an impact on how the disorder progresses.. I'm only starting so can't comment on how significant (if at all) that impact may be but it's certainly worth trying for me!
    If it doesn't have any impact and I need to eventually get the surgery, so be it; I'll have tried, I accept it and what have I lost by living a little more healthily.
    I'm proceeding with the increased dosage of remicade infusions as my next step but my next infusion isn't due for another 6 weeks or so, so I'll be completing the diet and exercise in the meantime in conjunction with my normal meds and it'll be interesting to see if it affects my inflammation levels.

    It would be great if there were other people going through similar.

    DD it breaks my heart to hear stories of people going through such pain for so many years like yourself. I was blessed to have responded to the remicade infusions so well.. don't get me wrong it's been a long tough journey especially trying to get back some normal mobility initially.. but I've met so many people with similar stories to yours over the past few years and I genuinely don't know how ye do it.

    Stay well, thank you again for your replies :) xx
  • stickywicket
    stickywicket Member Posts: 26,239
    edited 30. Nov -1, 00:00
    I misunderstood your original post, Cat, and I'm rather pleased ie I'm pleased that the diet and exercise will be in addition to the meds. That, I'm sure, is the optimum way to go and I do wish you every success.

    Stress definitely plays a big part. In fact, my early flares all 'coincided' with exams, from O-levels th rough to finals. Anything that gets on top of it must be good and exercise is a known stress-buster. I still exercise daily though what I do these days would not count as exercise for many :lol:

    I've done the surgery too and it's been of enormous help.

    You are taking control of your disease and that's a good thing. Have you seen Arthritis Care's Pathway Through Arthritis Course? It might be of help. https://www.pathwaythrougharthritis.com/
    "The deeper sorrow carves into your being the more joy you can contain." Kahlil Gibran
  • Cath
    Cath Member Posts: 7
    edited 30. Nov -1, 00:00
    Haha ya the meds have given me my life back.. exactly as you say I'm trying to go for the optimum approach to maintain my current state (or improve it) as much as I can which absolutely includes taking medication!

    Your first reply reminded me of Dara O'Brian's comedy sketch "I'm sorry, 'herbal medicine', "Oh, herbal medicine's been around for thousands of years!" Indeed it has, and then we tested it all, and the stuff that worked became 'medicine'." lol :D:D

    Thank you so much for the well wishes and for the link I'll make sure to check it out :) x
  • barbara12
    barbara12 Member Posts: 21,090
    edited 30. Nov -1, 00:00
    Hello Cat
    And a warm welcome form me
    I was training to be a fitness instructor before OA hit...and I do think that this delayed the worse of it,but I also know that I could have caused my joints to wear out with over doing things..so I would always say gentle and regular exercise is more beneficial...just to keep the joints supple and stretching is good..hope to see more of your name around the forum :)
    Love
    Barbara
  • Cath
    Cath Member Posts: 7
    edited 30. Nov -1, 00:00
    Thanks a mil Barbara :)
    So you had to change your whole career path? That must have been very hard to deal with :(

    Yes definitely agree we have to be so much more concious of not overdoing things!
    Finding a balance between pushing myself and not pushing myself too far is really important

    I've always been guilty of taking on too much so its been a huge change for me to have to listen to my body and just say no I'm sorry but I'm not up to it today - but I'm getting there with that!