How do I now up the anti tnf question ? (if you pardon the pun)

HI All, I'm new to the site and had RA since I had my daughter just over 7 years ago.

Whilst c 3 months pregnant, I was rushed into hospital with excruciating pain, fever etc.(typically I went in the middle of a Saturday night, not recommended) I wasn't diagnosed until the Monday - spent 2 days hallucinating on iv morphine, only to find that the junior doctor had missed 25mg of poison inside my hip! Noone knew how it got there and to this day we still don't.

All was fine until I stopped breastfeeding around 8 months later when I started to get what I thought were niggles but quickly became pain in my foot and knee. A few other place hurst but knee and foot were swollen etc.

I was put on mtx several months later, slowly (I think too slowly) and I've recently been given leflunomide which I now take with 20mgs mtx.

My issue is that although I'm not in direct pain, my joints are most often swollen and my feet and hands are most always tingling. I can see my wrists are swollen therefore I guess this makes the hands tingle. My main symptom is just total exhaustion - I have a job, a lovely husband & a 7 year old daughter. I get lots of rest but I rarely feel rested.

My main question is should I now ask about anti tnf drugs ? Do these help with swollen joint and exhaustion or just pain ?

Sorry for the long winded question but as I'm new I thought I'd add some subtext and got carried away !

Pauline

10 Replies

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  • Hi Pauline

    Have you tried any other DMARDs cos you have to have tried these before anti TNF are considered. Plus you have a DAS score to determine if your a candidate for the drugs.

    I took Methatrexate which worked well for me, but I was getting side effects, I stood it for so long til I could no longer, then I tried Sulfasalazine -never again!

    Now im on Leflunomide which is suiting me- in between my Guinea pig stage, I have had Depo injections to reduce the inflammation.

    hat something

    Yes I know where your coming from regarding the exhaustion.

    Hope this helps a little.

    best wishes Caroline

  • I think it depends where you live but if it's in England you won't be considered for biologics/ anti-tnf unless you've tried and failed the main DMARDs. I'm in the opposite place where I get lots of pain but very rarely get any visible swelling although my inflammatory markers are consistently raised. Have you talked to you consultant about the possibility of other conditions such as Fibro which seems to cause additional fatigue? I find the drugs I'm on make me feel very tired as much as the RA - also some pain somewhere wakes me in the night sometimes and I usually sleep poorly as a result and I'm sure that's why I never wake up feeling properly rested. I often feel things have gone too slowly for me too so I know just how you feel. TTx

  • Thanks Tilda. I had an episode recently that for 3 weeks I was aching all over. It was a differnt kind of pain, but I can only describe it as muscle ache everywhere including my face ! I lost all concentration and found it difficutlt to function. No pain killer shifted it and I did wonder if it was a different kind of flare or indeed fibro. I had no knowledge of fibro until I read some posts on this site. Would you think this sounds like fibro ? P x

  • I don't have fibro myself and I do find flares make me ache all over but in the joints and it's a weird burning ache that feels flu like and goes with extreme stiffness in the joints too. I've only recently learned that these were in fact RA flares ups and they raise my inflammatory markers a lot too. I get very tired think that's the meds and disturbed nights with pain. The fibro "fog" is meant to be much more intense I believe?

    I do also get muscle ache if I've over done it with unfamiliar activity but that seems to be less than you are describing so you need to put on a question about how fibro differs from RA or read about this online? I just know it make sufferers extremely tired and there's a lot of muscle ache in larger limbs and parts which I believe feels different to the RA and not as burning or sharp perhaps? TTx

  • Hi there,

    If you've been taking the Leflu for more than 5 or 6 weeks and it doesn't seem to be making enough of a difference then go back to your hospital doctor/nurse and tell them. They'll probably assume all's well so you need to say it isn't! I think a certain degree of exhaustion is part of this disease, but you should be better than you are. Keep nagging. Polly

  • Polly

    Many thanks. I have an appointment with my rheumy nurse tomorrow, hence my question. As I type, my hands are really tingly and ditto from my knees down to my feet, sore and tingly shoulders and feet. All very bizarre but as I don't have the direct immense pain I feel I should be thankful, but clearly all is not as it should be. However, many thanks for your response and instead of being grateful at my appointment tomorrow I really need to up the anti I think!

    Thanks again, P x

  • Unless the docs say otherwise I think that the aim should be to get back to 100% normal, well maybe 98%. I've got a few bits of permanent damage now, but apart from I still believe I can do better. When the meds first kicked in I was so happy not to be in evil pain all the time, and so excited to be able to walk and get in a shower and not fall off the toilet that I didn't really make a fuss. And I regret that now as if I'd pushed harder I probably wouldn't have damaged feet. But I've nagged a bit more since and it's improved further, although I'm still not stable yet I hope to be soon'ish. So don't put up with half measures. Px

  • Thanks Polly. By yesterday evening my knee area looks like I have elephantitis, horribly swollen, hands swollen etc. Off to show my rheumy nurse at 3pm today. I shall report back if any progress has been made.

    Px

  • They will ask you about anti tnf when they decide other treatment is not working. For the record my R.A started after the birth of my Son (within weeks)and a friends started after breast feeding finished.

    All the best

    Elizabeth

  • HI to all those who've taken the time to read my question and give me some input. I thought I'd update you all post my appointment today.

    The rheumy nurse was very lovely & really listened to all my issues as I was a little upset (i'm usually a go getter) I told her I was worn out. My shoulders are so bad I have restricted neck movement ( she found this out, not me!) My knees are very swollen, ditto lots of other areas. Strangely my bloods were ok ! esr at 15 which she said was low for me.

    She said she needed to speak to my consultant and came back with the news that the Cons thinks I should be looked at for anto TNF treatment. She explained that I was scored today and passed (??) I've to return in 8 weeks to see the consultant and be tested a second time. In the meantime more painkillers plus naproxen alongside leflunomide and 20mg Mtx.

    I think I'm pleased re the treatment but still keep thinking I don't have RA but something else !

    Keep you all posted

    Px

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