rheumy nurse arrggg!!!

dee2010

hi hope all are well and not in to much pain

sorry to rant but the rheumy nurse has upset and pissed me off!!!
i have been in so much pain lately and my knee and elbow are so worse so i called the nurse for new blood forms and told her i feel that i'm still not doing much better than before i started the enbral she said my last bloods looked great, so i asked what could be wrong or is my blood not picking up how active my RA is. she said she thinks i'm not giving enbral a chance (been on it 3 months now) and that i properly just over done it.

if i had over done it i'll would know and 2nd my next appointment for rheumy is october so it will be 6 months between appointments and i need help now not in 3 months!!!

i'm so angry at her and my knees and elbow is so painful and resticted at the mo, i can't straighten my left elbow at all and it feels like its stuck most of the time, my knees just so painful all the time and just walking to my front door is hard work

sorry to rant just so angry and in pain xxx

dreamdaisy

Anti TNFs are not the wonder drugs that people think. They can work extremely well for some, not so well for others and not at all for a few. How many enbrel jabs do you have per week? When I was on it I had two per week and, like all these things, it can take a while to build up in your system. I assumed when I started my anti TNF journey that all symptoms would be removed and I would be arthritis-free, and given the various promises I was told my the medicos that was a reasonable assumption. Only for a very privileged few is that the case. The usual time scale for a new drug to be effective is 2-12 weeks, but for some it can take longer. DD

julie47

Hi Dee

I am not on the anti tnfs so I can not comment.

I just wanted to say I am sorry that you are having such a bad time at the moment. I wonder, if after giving the embrel another couple of weeks you could ring for an earlier appointment rather than waiting for october.

I do hope that you feel some improvement soon

Take care
Juliepf x

Grizelda

Hi Dee

Sorry to hear you're feeling grot. You could always ask to see the consultant sooner - that decision is surely for him to make and not the rheumy nurse. They are usually good but even rheumy nurses are human and have bad days! I'd encourage you to ask for an earlier appointment and stress that you're struggling.

Despite having quite severe RA or PsA, my bloods apparently never showed huge levels of inflammation and weren't always indicative of what was actually going on in my body. I'm on both Enbrel and Methotrexate. When I started the Enbrel, I'd been told I'd be able to come off the Methotrexate but that hasn't been the case and I would be very wary of doing so now. As dreamdaisy said, people have varying responses to Enbrel. It's often prescribed with Methotrexate as well - apparently that is proven to have a better outcome than one med alone. I was already on Methotrexate when I started Enbrel but still kept having big breakthrough flare-ups. It's therefore hard to tell how long it took to have an effect but certainly I haven't had any more major flare-ups since starting it in May 2007 so I've been very grateful for it. However, I still regularly have odd joints play up and carpal tunnel problems. The last year my swollen glands have returned with a vengeance and more recently the overwhelming tiredness of full-on arthritis.

Another thing worth considering is having a steroid injection into the affected joints. When I was first unwell, I cringed at the thought of this! But after going on two meds, I was told that was my only option as they can't give steroid infusions (via a drip) to you unless a great deal of your body is inflamed. After experiencing a lot of pain in my fingers, I finally gave in and I'm really glad I did. Apart from a pin prick and slight swelling feeling, there was no discomfort and it gave me a lot of relief. They usually administer a local anaesthetic with it to give more instant relief, too. I've had quite a few done since then, in fingers, carpal tunnel and wrists. I also had one in my foot under ultrasound guidance and that one hurt but only because the inflammation had gone undetected for a long time as the pain was thought to be from damage rather than inflammation. I would whole heartedly recommend this treatment as it gave me enormous relief. You may have to wait a week or two to get into a clinic at the hospital, which is a bit of a down side, especially as often the joints have calmed down by then!

Hope this helps and good luck with getting more support from your rheumy team.

Best wishes,
Grizelda