I really do feel like giving up

As5567
As5567 Member Posts: 665
edited 24. Nov 2014, 06:55 in Living with Arthritis archive
Well I finally got to see my rheumatologist and wish I never did. She is refusing to let me take ANY medication until wounds from a recent abscess and internal tracks heal. The problem is these are not healing and are not going to heal fast if not at all while I'm still on the pred. The only way I can get off the pred is by taking my methotrexate and Anti tnf Drugs. The company that makes Simponi has told me over the phone it's safe to take if the wounds are being cleaned and dressed daily, which they are.

I had an abscess a few years ago while on Humira, at the time I had a different rheumatologist and he was happy for me to continue my weekly injections but to keep a very close eye on the wound and any sings of infections to get antibiotics off the GP, I was happy to comply with this and in total I only had 3 infections over 6 month period which it took to heal.

I really feel like my current rheumatologist is way over cautious about infection. In the summer months she was convinced I had some hidden infection and refused constantly to fill in the paper work for my new TNF drug, after seeing a load of doctors and an infectious disease specialist only then did she compromise to give me half the dose and for me to have weekly blood tests. Now it looks like I'm back at step 1 in a battle to get medication. I have told her over and over that I'm very sensible and any sing of infection I would act upon it right away. I would be willing to continue weekly bloods and even keep a temperature chart 4x a day if that would make her happy but she doesn't want to budge.

I'm beginning to get really concerned about my joints now after almost 9 months with little or no medication, I have already seen a huge deterioration in my hips and spine which could have been avoided. This is also my 3rd attempt at my 3rd year at uni and really is my last chance, so far I haven't attended one single day of term and am currently seriously behind. At this moment in time I feel like giving up on every thing and just not care about anything. I really have been trying to move about as much as I can and try to be more mobile but I truly can't, if its not extreme joint pain and stiffness stopping me then it's muscle spasms that stop me moving. The only time I can truly get slightly more mobile was when I took my TNF drug. Even then I felt highly restricted to how much I can move etc but it was far more than I can do as of right now. I can't even feed myself or manage to lift a drink to my mouth most mornings.

I really hope things do get better soon and my doctor see's sense but I feel like I'm going to be left like this well into the new year and probably failing my final year for the 3rd time and have nothing to show for the endless hours of hard work put into both college and university.

Comments

  • mig
    mig Member Posts: 7,150
    edited 30. Nov -1, 00:00
    Im sorry things are so rough for you at the moment.Im with your rheumatologist for two reasons: any wound must be given time to heal,it can't be left heaven knows how serious it could end up being and secondly should anything happen to you their career could be on the line.All that said i do hope things improve for you.I will be thinking of you (((()))) Mig
  • stickywicket
    stickywicket Member Posts: 26,331
    edited 30. Nov -1, 00:00
    This is such a difficult, complicated time for you and, having struggled through my own finals with RA, I can understand your desperation. The problem is you have two things working against each other - the infections and the arthritis and meds. The pred won't help the infections but I guess the rheumatologist feels the anti-tnfs could make things worse.

    Don't give up but maybe stop fighting it all for a while and just accept that nothing can be rushed. By 'sees sense' you really mean 'sees things the way I do'. I doubt that's going to happen and, as the doc's in charge, you'll only be banging your head against a brick wall. Believe me, I understand your anger but I can't see it helping. My technique would be to tell myself I was going to have some time off to recover from the infection and would only allow myself to worry about meds after that time had elapsed. That's despite the fact that you can't feed yourself early morning. I've been there and done that and it's horrible.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
    I think Sticky is entirely right here and you need to let a bit of time pass. I've said before that my husband has had a similar op to yours and that, on a healthy immune system, took it's toll and was a long time healing (weeks and weeks) so on a depleted immune system it will only take longer. It is a complex wound that has to heal from the inside out and immuno-suppression will not help that happen. All that without an infection. It must feel frustrating but university will be accomodating even if you think they wont - it might be your third go at your third year but it isn't through lack of trying and that is normally the only reason they will not accomodate you - you have serious medical reasons for not being there. Get in touch with them, find out how you can cope with that situation in terms of being behind and put that worry to rest. I spent a lot of time doing post graduate work with arthritis and I can tell you that the system can be very flexible when it needs to be and you are an honest case of need. As for your consultant, she clearly has a strong opinion and yes, it isn't the one you want but she has all that experience and training and she is making those choices for a reason. I feel and can hear your frustration but just let it all go, concentrate on healing the wound, know that things will change and let your body relax and just be for now. I hope things improve soon.
    Hey little fighter, things will get brighter
  • dreamdaisy
    dreamdaisy Member Posts: 31,557
    edited 30. Nov -1, 00:00
    It's not giving up, it's giving yourself a break. You have good reason to defer your final year and, removing that pressure from you, will ensure one thing less to fret about. It will also ensure that you have not wasted your efforts so far.

    Your body is demanding a rest and, unless it's given one, this situation will continue. That wound needs to heal and you need a stronger immune system to effect that. Infection is a clear and present danger so I agree with your rheumatologist. It's a ghastly Hobson's Choice you are facing, there's no doubt about that. :( DD
    Have you got the despatches? No, I always walk like this. Eddie Braben
  • theresak
    theresak Member Posts: 1,998
    edited 30. Nov -1, 00:00
    I'm so very sorry for the dreadful situation in which you find yourself - it must be so difficult for you.

    I can't really add to what others have said, but I fervently hope you can get some improvement soon, and sufficient healing to get back on your anti-TNF treatment.
  • As5567
    As5567 Member Posts: 665
    edited 30. Nov -1, 00:00
    Sorry for the late reply, things have been very busy the last 48 hours!

    Things seem to be going in the right direction for once, I have an 8AM appointment today with my Rheumatologist, my surgeon and a wound healing specialist all rolled into one.

    My rheumatologist is the one who arranged this to my surprise after my last phone call with her. She said we should have a plan in place by today and will go from there. She did say that it might be a case of giving me the tnf drugs or even something else but it will be dependent on what is what today and what can be put in place to keep a very close eye on things.

    I will try to post an update tonight, I also have my PIP assessment today and have yet been to sleep so a very busy and long day for me!
  • barbara12
    barbara12 Member Posts: 21,132
    edited 30. Nov -1, 00:00
    I really felt for you reading your initial post..what a time you have had , I was wondering how the healing was going on..but now I read your latest post and there is light on the horizon..I will have everything crossed that you can start the meds once more..and I do wish you well with uni...
    Love
    Barbara
  • As5567
    As5567 Member Posts: 665
    edited 30. Nov -1, 00:00
    Well the appointment went well, the surgeon and wound healing nurse both had a prod at my wounds and have both said they're healing but at a very slow rate. The wounds are not infected and the gunky stuff that's coming out of them is normal at this stage and no swab result would be accurate because that stuff will always have bacteria.

    The surgeon and wound nurse both said it's safe to take my TNF drug and to try and taper off the steroids as quickly as I can. Apparently steroids are the worst drugs you can take with an open wound as they really stop wounds from healing, that will lack of mobility is a perfect recipe for no healing. The TNF drug will also slow down healing but they say if I can manage to get more mobile, shower the wounds twice a day and get off the pred then things should improve but nothing is going to improve quickly. The estimated time for things to fully heal is 6-8 months at the current state which is what I expected.

    My rheumatologist has agreed to re start my medication on the condition that I see her weekly until things are going in the right direction. I'm happy to do that and happy with the outcome. Hopefully once I take my medication I can get back to university and get on top of things.
  • mig
    mig Member Posts: 7,150
    edited 30. Nov -1, 00:00
    I really hope this plan works out for you,lets hope you get back to uni soon but don't rush too quickly. (((()))) Mig
  • stickywicket
    stickywicket Member Posts: 26,331
    edited 30. Nov -1, 00:00
    Oh that is excellent news! I'm so pleased for you :D You've had such a rough ride for so long, you really were overdue a bit of luck. I do hope things will run a bit more smoothly for this.
    If at first you don't succeed, then skydiving definitely isn't for you.
    Steven Wright
  • LignumVitae
    LignumVitae Member Posts: 1,972
    edited 30. Nov -1, 00:00
    That sounds like things might be looking up. You did really well to get those three parts of your care so well co-ordinated. Very rare. I hope things start to ease soon, you more than deserve them to.
    Hey little fighter, things will get brighter
  • Starburst
    Starburst Member Posts: 2,546
    edited 30. Nov -1, 00:00
    I'm pleased to read your update. You were most certainly due some positive news. I really hope that you're able to get back to university and I know it's important to you. That said, please be kind to yourself and take it easy. You have been through so much lately and it shows your strength that you're still picking yourself up and moving on. I know you will achieve what want and get to where you hope to be. Take good care.