About etanercept.

[Suki63]

Hi everyone. This is my 1st post so bear with me please. On my 2nd dose on self injection of etanercept(weekly 50mg).1st week was fine. Quite an inprovement considering was having all over flare. No meds since September due to positive tests for tb. This 2nd week seems to have gone backwards somewhat pain in hips hands lower spine and shoulders. Just wondering if this normal for the drug? Since on etanercept also on prednisolone. 20mg daily tapering to eventually 5mg on week. This week on 10mg.many thanks for any answers. All the best. Ivan.

[Biofreak]

Please bear in mind Ivan that it generally takes several weeks for the Etanercept to become fully effective. I have been on etanercept in the past and it was very effective for me for five years. However, it took about 6 weeks for me to start feeling the benefit. I think that the increased pain you are experiencing is probably more to do with you tapering off the prednisone. If you can persevere I think you will be fine eventually. Good luck.

[Suki63 in reply to Biofreak]

Hi biofreak. Great name!!

I understand it takes a few weeks for my body get used to the etanercept it was just that I was wondering if it common to take a step back. Not really had much trouble when starting new drug once improvement has started. Was wondering if you know if it possible get naproxen from my gp or would I have to wait to see my consultant again to get them. Never had naproxen before. And it's 5 months before I see consultant again. Many thanks. Ivan.

[Biofreak in reply to Suki63]

Yes. I get Naproxen from my GP but not on repeat prescription. I only take it as and when necessary if I get breakthrough inflammation and I don't take it long term as it's not very kind to your stomach. However I find it useful on those occasions. I did use it during the time I was waiting for the etanercept to become effective but after 6 weeks I rarely needed it.

[Hidden in reply to Suki63]

I take naproxen but only use it when I really need it. My Gp prescribed it

[Barrister]

It took nearly a year before I felt proper benefit from Benepali and then only once Methotrexate was added into the mix.

Clemmie

[Eiram50 in reply to Barrister]

Yes. I too was similar. Various biologics and never any real affect until methotrexate and leflunomide added.

[Barrister in reply to Eiram50]

I had a really good effect from Humira, by the second injection, unfortunately it stopped working after 14 months so I then changed to Enbrel. Again, this worked well pretty quickly but started to fail until MTX was added. Then when I was changed to Benepali, it took a long long time to start to work. Even so, my hands, wrists, fingers, elbows and shoulders are constantly stiff and sometimes very sore. Not sure what’s going on. All I get told is that my bloods are good but as I’m PsA that’s not really relevant!

Clemmie

[Eiram50 in reply to Barrister]

I totally understand. It must be so frustrating when things don’t show up in your bloods and professionals use this consistently as a measure.

It’s also very difficult when you’ve tried everything and no one seems quite sure what to do next - whilst your body just crumbles.

It’s a hard one!!

[Barrister in reply to Eiram50]

Don’t get me wrong, I am so much better than I would be without the medication, I know that, but I would love just one week, even one day, where I wake up and feel on top of the world with no pain ( a big ask, I know 😆, obviously too much of an ask really!)

Clemmie

[Eiram50 in reply to Barrister]

I will keep my fingers crossed for you, that this day soon comes.

[medway-lady]

I echo previous comments and would just add coming off steroids will have an impact until the body is used to less of it. Be patient I'm 8 weeks in and only just noticing a difference.

[Suki63 in reply to medway-lady]

Hi lady.

Thanks for the reply. Just wondering though did your rheumy give you anything at all for the pain, while the etanercept kicked in or did you manage without? Thanks again, Ivan.

[medway-lady in reply to Suki63]

I've kidney failure so been up and down on steroids for over a year. So yes I was asked if I wanted Prednisolerone but said no and I've been taking Azathoprine for about six months. I said no to the Pred. but can always go back and I'd prefer an injection rather than pills as easier to get off of. I'm now trying to avoid Pred. as coming off once was ok , twice was hard but the third time it took months. Be patient please its hard but Pred is the drug from hell yes it makes you feel good but coming off it is difficult.

Let us know how it goes and perhaps your coming off the Pred. too quickly. I'd say contact your GP for help as I did 20, 10 then 5 then 4 32 1 for a month each.

[Hidden]

Hi Ivan. I’m on elerzi a bio similar of etanercept. I had my second injection this week. I’ve noticed my swelling has gone down but my joints hurt more and I’m also getting burning in my feet and legs. Spoke to my clinic yesterday they said it’s too early to notice if my meds are working and the pain and burning is likely a flare and just a coincidence . If My joints are still hurting next week they will give me a steroid injection.Told to keep a diary too see if there is a pattern. Hope this helps