I am 34 with 2 kids got diagnosed with RA 2 years ago. I applied for DLA last year and was regected as im not unwell enough (apparently).I'm on Mtx 20 mg a week, Etanercept 50mg,Arcoxia 90mg,folic acid etc. I am a student nurse (year 2) so DLA's sticking point was that if I'm well enough to attend lessons/placement then I am ok, have missed lessons/placement before due to illness and uni is supportive also i have to drag myself out of bed most days and use Arcoxia and Diclofenac to get me thru the day. Rummies says I'm overdosing but hasn't suggested what else i can use during the day to tide me over as I use Arcoxia at night? i have spoken to my new GP (recently moved and new to the area) and she asked if I couldn't get out of bed at 5am for a 7am shift due to lack of motivation. Unbelievable as I suffer from morning aches and stiffness.also I wouldn't be doing this bloody nursing course if I wasn't motivated!!! Right??
Needless to say I haven't been back to see the GP again nor have i reapplied for DLA yet as I think what's the point? . I am seeing my Rummie next month to see how I have been getting on with Etanercept(been on it since dec12.)I really don't want to give up the nurse training but struggling with everything at the mo.
Any advice much appreciated.
Thanks x
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Missbb
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I am so sorry you are struggling so much. Many years ago, pre RA, I was a student nurse for a while and found it a challenge physically even when fully fit. So you have all my admiration for what you are doing.
I was outraged on your behalf by what the GP said about motivation. You really do wonder sometimes what planet they are on don't you?
In terms of advice, the only thing I can suggest is to "push" your rheum when you see them next month, about what they can suggest to help you through your days. It doesn't seem right to me that they can say you are overdosing on NSAIDS (which is worrying in itself) without discussing alternatives with you. Maybe there isn't an obvious answer but I still feel that there is a discussion to be had there. Has anyone suggested oral steroids at a low dose? Speaking as someone with osteoporosis, in which steroids have played a significant part, I know that long-term steroids are not a good thing either but perhaps it's a case of "horses for courses" and if low dose steroids, together with a lower dose of Diclo or Arcoxia make things easier for you, perhaps it is worth considering - or discussing, at the very least. Maybe using steroids to help you through your placements and accepting that, at other times, things will be more of a struggle might be an acceptable "halfway house" for the time being. Or what about periodic steroid injections? Alternatively, perhaps the question is whether the Enbrel is doing enough for you, or whether there would be any merit in trying a different biologic.
I'm sure that I haven't said anything here which you haven't already thought of and I really feel for you. I don't know what else to say, other than to re-iterate that I think you must be an incredibly strong - and contrary to what your GP implied - motivated person to be able to do what you are doing.
I will talk to my consultant next month about possibly trying low dose steroids with Dicloflex or Arcoxia. I do have occasional steroids as top up every 3 months when i see my rhumy,I reckon a discussion wouldn't hurt as GP reluctant to give me steroids long term.
I have already tried Cimzia which didn't work for me unfortunately. Enbrel works,dont think i would be able to keep going if it wasnt.but I'm not sure how much to be honest.
Hopefully things will get better soon.
Bianca x
Hi Bianca. Just to reiterate everything Tilly has said. GP needs to wise up and have a flare of RA and try doing her job then - oh yes and with some MTX at high dose thrown in for good measure. 5am start - that would learn her! Tilda x
Sorry you are having so many problems, but please please please heed your doctors advise about the NSAIDs - if you are taking both arcoxia and diclofenac then you definitely will be overdosing, and the big worry would be that both these are NSAIDs that potentially can cause serious heart problems. If you need pain relief, then keep up the full dose of one of them, and ask your GP to prescribe codeine or tramadol or something like that as an additional med. Even adding in paracetamol can make a significant difference (although pretty useless on its own). NSAIDs, in spite of being available over the counter, can be very nasty meds if taken wrongly.
If you want a med for nighttime, then ask about something like low dose amitryptylline or one of the other antidepressants with pain modifying properties. You'd probably need to start taking them when you had a week or so off so you had time to get used to the initial knock out effects, but it doesn't take long and they can make a really big difference.
Thanks for the advice.will speak to rhumy at next app.GP pretty useless and was the one who prescribed Arcoxia and Declofenac but Rheumy wasn't happy about that as both tablets come from the same group and act the same. I take Arcoxia and Amytriptyline @ night as they make me more tired and drowsy during the day.just need something to help with pain during the day when I'm at work. Tramadol,co-codamol,naproxen etc don't work.have tried them before.
I'm just fed up of pain and I seem to be hitting a brick wall at the mo.but I'm not giving up yet.will discuss further at my next hospital app. X
Have you applied for DWA, Disability Working Allowance. You'll have to check that it's still out there but I have known a few people who found it invaluable as it then helped them later on to switch over to DLA. I hope that you get your benefits sorted, if the NRAS can't help you I know that CAB (citizens advise bureau) are really helpful on benefits. If however you really want to get DLA you can ask for a review. Get as much back up as you can, get every doctor you see to write a supporting letter for your application.
I was a nurse but had to give up unfortunately. But I actually found occupational therapy a brilliant help when I got diagnosed. If you tell them what is wrong and explain your problems they are so good, they can help by , as the disability act suggests, changing your hours ie letting you start later or not doing nights, letting you have rest periods and loads of other things including gadgets to help you work.
I would also advise getting hold of your RCN or union rep,and ask for the disability rep, mine was wonderful and fought my corner at every step of the way. Also and this may seem strange but Personell were amazing, they realised I had a problem and gave me time to recover, one lady on here fort a career break till the meds kick in and help you.
I think you are brave and courageous and having this will give you so much more empathy with your patients, I found it helped me to work more holistically.
So for me get the help the NHS has to offer its staff, if you try to hide it they get upset and start calling you for meetings. My experience of going to them and getting help from Occy health and Personell and union was terrific. Good luck, let us know how u get on hugs xx
Thanks for all your advice.i will make appointment with occ health,union rep etc.
I have never heard of DWA but will look into it.
Will also make an appointment with CAB.
It's nice to get so much empathy,advice and positive understanding from you guys.glad I found this website.you guys are truly inspirational.thank you xx
I can sympathise - I'm sure that nursing hasn't helped my RA & OA!! The thoght of working now for me doesn't bear thinking about but then I am old enough to have retired!
I have just been given Bustran patches for pain as solpadol 500/30mgs wasn't working, Tramadol helped but not enough. I used Amityriptiline 50mgs but it doesn't do much for me not even make me sleepy!
I think Occy health is a good idea - keep pushing & good luck!
Did 2 13 hours shifts this week just to try.NEVER AGAIN.spent the weekend in bed.Im still aching.sometimes I wonder why I'm doing this to myself,it's not as if I will be doing full time job when I qualify .think this in my darkest hours--GP wants to put me on antidepressant, I'm not depressed(mental health student so know a lot about depression)just annoyed,filled with despair at the hand I have been dealt with.
also I'm only 34 what am I going to do for the next 30 years if I give in? People look at me and think I'm ok but I'm not. I'm good at hiding pain.
Apologies fr the rant but things are hard at the mo.
What are Bustran patches?are they pain patches(controlled drugs you only get on a ward with 2 nurse signatures?)how do I get them?GP or Consultant?I'm seeing my Rhumy next month so will mention them.
You need to go through occupational health and uni student well being department to help you negotiate. they will support you as a student nurse you don't have to work 12hour shifts
Also my daughter is doing SLT,similar course,and she has been supported by the nhs Dsa which is for supporting students.she suffers with adult stills and relatively newly diagnosed.the uni / Dsa (disabled students allowance)have agreed taxi ,new computer with dragon softwear to talk into so can do her assignments etc as she has a lot of pain in her hands,fingers ,neck and head
DLA has to be done with you on a bad day..not good you can still work whilst receiving it.itis now changing and an assessment is required
Hope this helps as if you keep going you will succeed and I work with other nurses who have inflammatory conditions and they pick roles best suited to them when they qualifyxxx
Uni has been really supportive.i too got a computer etc and they don't give any hassle if I can't do my assignments on time or when I'm off sick.
I never had an assessment for DLA. They booked an assessment and then cancelled and wrote to me saying I don't qualify.have made app with occ health.its reassuring to know that there are some nurses with RA/OA etc out there who still work.gives me hope as I was thinking of quitting the course
Hope everything goes ok for your daughter.is she on DLA? I will reapply for DLA.
My daughter does get dla ..this will be reassessed in jan .she has had to take time off work for 6months whilst we sort her out...I think need to reapply but think of yourself on a bad day.xxxx
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as I was thinking of quitting the course 
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