Hi

MarkC
MarkC Member Posts: 16
edited 6. Mar 2011, 04:24 in Say Hello Archive
Hi,

My name's Mark and I was diagnosed with rheumatoid arthritis in December after having symptoms since early last year and pain since August.

I'm 26, previously enjoyed my job, but am currently struggling to get everything under control, so I've decided to seek the support of the online community!

Basically, most people have been very supportive, from my fianceé to the NHS, but I still feel pretty alone as I have no-one for me to talk to who has the experience of going through what I'm currently going through.

When I was first diagnose, I had pain in my feet, ankles, knees, elbows, wrists and fingers and the only time I've shown any improvement is when I was taking 20mg a day of prednisilone for a week, which was at the start of December. I've had two general steroid jabs in my backside and one directly in my wrist, all of which had zero impact in controlling the pain.

I recently had to have 2 weeks off work as I just couldn't cope with the pain in my right wrist and ankle anymore and have come back to work in the hope that now I've been put back on 20mg of prednisilone a day for a week, I will show improvements again. I've also had my methotrexate upped to 25mg a week and have started taking sulfasalazine this week, along with paracetamol and Arcoxia.

The hospital do seem a little confused as to why the steroid jabs are having no impact and why I am still suffering such a high level of pain, given that my joints are not showing any actual damage yet, just severe swelling.

Also, I've been to have tests on my lungs, which I seemed to pass with flying colours, but was told that I would have to go back for more to make sure my body is taking in the oxygen from the air. At my first appointment, I was told that if they spotted anything on the x-ray of my lungs 'to be worried about', I would get a third appointment for a CT scan, a letter for which I received yesterday.

Has anybody else had problems getting the pain down to a manageable level to start with? I am aware that I may have to put up with some pain going forward, but I can barely use my right wrist, the pain is very strong even when taking tramadol.

And does anybody have any info/experience on the possible things they might have seen on my x-ray on my lungs?

Sorry, quite a long introduction about myself, it's just that I'm really struggling at the moment and every time I seem to be on the up, I get knocked back down again.

Many thanks!

Comments

  • seamonkey
    seamonkey Member Posts: 323
    edited 30. Nov -1, 00:00
    Hi Mark,
    welcome to the online forums i joined a few weeks ago and have had nothing but great support, advice and understanding from others on here. I dont have RA but im sure someone will be along soon who can offer you help with that, i just wanted to welcome you and to say your not alone in finding it difficult to manage especially at the start. I too am taking tramadol for pain and despite this am still having a constant battle to keep my mind on top of it. I am 32 with 4 kids who are brilliant and am just going through diagnosis stage of some kind or arthritis. The Consultant i saw last didnt understand how i could be in so much pain when there didnt seem to be overly damaged vertabre. Pain is pain though and boy do we feel it!
    The helpline team are great to answer any specific questions and as i say someone who is experienced in RA will be along to offer you support soon,
    All the best and i hope today is a good day pain wise.
    seamonkey
  • frogmorton
    frogmorton Member Posts: 28,049
    edited 30. Nov -1, 00:00
    Hi mark

    It Is good to meet you.

    think I just saw you on LWA :grin:

    they are struggling to get your symptoms under control aren't they? Mind it IS early days for you. You may well find the pred does do teh job again for you, but they dont like us on it for any length of time as it's not good for us in other ways is it?

    I am sure I read somewhere that men are more difficult to 'sort' than us women as far as this is concerned so i very much hope it IS a cse of getting your medication sorted out and cahnged until they find teh right combination and levels for you.

    My chest xrays all came back fine, so I can't help with the issue around your scan, but I do hope all goes well for you with it.

    I am so glad you have such great support including your fiancee - I know our OHs often struggle with us being in pain and suffering.

    I hope you find this site as helpful as l have and look forward to seeing you around.

    Love

    toni xx
  • traluvie
    traluvie Member Posts: 2,579
    edited 30. Nov -1, 00:00
    Hi Mark,,,,

    Welcome to the forum..
    I have recently been diagnosed mith RA,,, luckily they caught mine early on so it is only mild and have started Hydroxychloroquine..
    I currently take diclofenac50mg 3x, Tramadol 50mg 4x, Depo mendone injection 22nd dec, amtriptyline 20mg at night and paracetamol in between if need be...
    I have had a gd few days my ankle playing up a bit now but have loeved doing things with the kids and visisting my friends.. really cheered me up.. am even going out tomorrow so am really looking forward to that..
    If you are still struggling with the pain maybe you should speak to your gp again and say you are still feeling no benefits... everyone is different and what works for some doesn;t always for someone else, sometimes it can be trial and error..
    All the people on here are great and there will be a few more people who have more experience with RA who can maybe offer some better advice..
    Keep us posted on how you are getting on..
    Look forward to seeing you around...
  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
    Hi Mark, welcome from me too Rkid... Hope you are not suffering too much tonight..

    I have Osteo Arthritis mainly and possibly rheumatoid in hands and wrists but that's still to be determined, so on different meds altogether, can't advise really but wanted to say hello and I hope you feel at home like I do here...

    Great bunch, very knowledgable and friendly

    :grin:

    Be well and hope to see you around

    :grin:
  • caterina57
    caterina57 Member Posts: 1,424
    edited 30. Nov -1, 00:00
    Hi Mark.
    Welcome to our forum, although I am sorry that you have had to find us.
    You will find that there is a lot of support from people here, who have lots of experience and knowledge, Hope that you manage to get your meds sorted out as that could be very important.
    Hope to see you around on the site
    Cath
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    Hi MarkC, welcome to the forum though I am sad you have had to find us. I have PA (it's like RA but with the added bonus of psoriasis) and I am on very similar meds to you. Like you I find the oral steroids make a difference but the injected ones don't. This is not unusual - steroids can be quite temperamental in whether they 'choose' to work for one or not, I have had depo jabs in my backside and steroids injected into my knees and ankles and none of them has really made any difference to things, but a nice steady dose of 20 mgs daily? Oh yeah, baby! :grin: Oh and of course your joints hurt - they are ful of fluid and that is damaging in itself. DUH. It's not rocket science, is it? I do wonder about the doctors sometimes, I really do.

    Over the years I have found that the meth and sulph have made very little difference to the arthritis, I was taken off the effective arcoxia due to cost and given naproxen instead (pointless drug for me). I have cocodamol 30/500 for pain, as well as 50mg tramadol and 100mg slow-release trammies. Pain killer is a complete mis-nomer, pain duller is far more accurate. I no longer bother with paracetamol as it does not have the required 'clout'. I note that you mention a chest Xray - are you being assessed for an anti TNF treatment? That was the only time I had them. Has anyone mentioned that term to you? How long have you been on the meth etc and have they made any difference at all? From the general tenor of your post I would guess not.

    I cannot remember what else I wanted to say - if it comes back to me I'll post again! I do know what this all feels like, I have many affected joints now and cannot actually remember when I had my last pain-free day but it's a good many years ago now. One adjusts over time to living with the pain, honestly, you do. I wish you well. DD
  • MarkC
    MarkC Member Posts: 16
    edited 30. Nov -1, 00:00
    Thank you all for replying!

    I actually found out yesterday that the 3rd appointment is to get the results from the tests they're doing next week on me, so nothing to worry about apparently. Just wish the appointment letter said that in the first place and would have saved me a weekend of worrying!

    DD - I think they might have mentioned anti-TNF treatment at my appointment last week but I've got to wait another 3 months at least to be eligible for it. I've been put in touch with a friend of a friend this weekend and she's on them and say they are really good, so there's hope yet!

    My family have been looking into (and maybe obsessing over) how my diet can impact it and suggested stopping eating somethings, such as tomatoes, dairy, wheat etc., as I might be having a mild allergic reaction to some of them. As yet it's complete speculation but has anyone else tried altering their diet in such a way? Any success?

    I know it's silly, but it is really helpful to have somewhere I can ask questions and explain this and that, it's quite hard to explain to "normal" people isn't it?!
  • tjt6768
    tjt6768 Member Posts: 12,170
    edited 30. Nov -1, 00:00
    Hi Mark, don't have the answers for ya matey but you should try posting the questions on the living with section, not too many folks bother to check this bit...
    Best of luck, I am sure that someone will be able to advise


    Be well

    :grin:
  • janie68
    janie68 Member Posts: 1,186
    edited 30. Nov -1, 00:00
    Hi Mark

    I have RA too and have a lot of trouble controlling the pain. I use morphine, DF118's, paracetamol which enhance efficacy of DF118's, and can still get pain. You are as Toni says in the early stages and that you are being conisdered for anti-tnf's is great. Some people don't get that opportunity even though research suggests that to treat it aggressively is best.

    Diet- well what works for one doesn't work for another, some people on this forum have gone that route, it doesn't seem to have any real impact in helping.

    Steriods can be a bit hit and miss, what are your ESR and CRP levels? If they are high, it can take long time for them to help and a good dose too. I have had depot which have worked and more recently, they don't work. But I have had steroid infusions and the 2nd one I had gave me 3 weeks respite.

    I hope you are taking it each day as it comes and sounds as though you've got a good support network around you.

    See you around on the forum

    Janie
  • MarkC
    MarkC Member Posts: 16
    edited 30. Nov -1, 00:00
    Cheers guys.

    To be honest Janie, I can't remember my ESR and CRP levels and I haven't been updating my little book with them, although I plan to do so going forward!

    I do remember saying my rheumatoid factor is boderline but my antidbody levels are high, but to be honest I don't really know what that means, I wasn't really ready to take a lot of stuff in when they first diagnosed me but I am going to find out at my next appointment.

    How do you get on if you're on morphine?! I find myself unable to do much at all if I'm on tramadol - it spaces me out way too much! At the moment I'm putting up with the pain so I can go to work, if I had tramadol I can't go as I'm probably more harm than good!
  • dreamdaisy
    dreamdaisy Member Posts: 31,520
    edited 30. Nov -1, 00:00
    I can cope with every-day life with the slow-release tramadol, but I do keep those for the really bad times as I don't want to run out of pain duller options. The rest of the time it's the cocos, and maybe a 50mg trammy at bed time to help me settle aas they can make me feel a little dopey. I don't sleep thro the night tho as pain wakes me (frequently) as do the night sweats (a side effect of the anti TNF and the pred). For the most part I ignore the pain but I am an old hand at this now: I have nearly completed my 14th year of this dross. You get used to it.

    The anti TNFs can be very effective for some and I really think the sooner you get them the better they work. I hope this is the case for you. I am on my third and final version and the results on all three have been disapppointing, to say the least. I wish you well. DD
  • janie68
    janie68 Member Posts: 1,186
    edited 30. Nov -1, 00:00
    Hello again

    I get on very well with morphine. I take a sub lingual morphine tablet for work to help me through my shift. I also have oramorph but obviously don't take that as well!! Then I would be spaced out!

    You have to get used to morphine, it takes a while but I am very tolerant to opiates. There is also a pain patch which releases morphine slowly over a week.

    Mark, maybe see your GP and talk over options. Getting your pain under control is half the battle I think!

    Good luck Janie

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