Hi all, I know this sounds weird but I have just been diagnosed in March and have had so far Methotrexate, Sulphasalazine then Remicade and now Enbrel plus sulasine and due to go onto as well methotexate injections again. I was so ill the week before christmas that I had to go to the Rheumy in a wheelchair.
They were great (as you can see from the treatment i have had) and gave me a steroid infusion and started me on Enbrel.But i am now wondering as I'm feeling better, only 5 out of 10 for pain, how will I know if the Enbrel is making me feel better or the steroids? I'm scared of going back to work hopefully the dr says if I'm improving in March, to find the other drugs haven't kicked in yet....what do you think?
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allanah
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Hi Allanah, the steroids usually kick in after about 48 hours and you begin to feel better and inflammation goes down. the Enbrel can take up to 12 weeks to get going as can the MTX so it will all take a little bit longer. In the meantime, the steroids should keep you on a more or less even keel until the other drugs get working.
Don't worry about work yet - there is time for that once you feel better. You could also consider decreasing your hours or going part time. Many of us have done that and it is worth it.
You can also get booklets from NRAS about working with RA, one for you and one for your employers. Also other handly booklets about living with RA and how it affects you and family. Have a look at their website.
RA makes you very tired and you need to try and get as much rest as you can. Also pace yourself with anything you are doing and don't overdo things. Many of us have run before we could walk and suffered for it after!
Yes its hard though as they are trying to cut jobs at the moment so I'm not sure how long they would keep a job open for me and incapacity benefit is very small.
I understand the feeling of "how do I know?" very well. I have less obviously active RA than you I think but then if I stop taking full dose of ibuprofen daily I get a much clearer sense of whether the MTX is working or not.
I'm always confused these days - I think it's the main state of play with RA for us all maybe? On good days I think it's gone away perhaps and then today I find myself thinking that my pain threshold has shifted hugely because I have swollen knee that doesn't hurt, nodule on my elbow, sore wrists and when I'm resting for long periods like yesterday and today I feel all achey and joint-sore and just weary. Don't know whether this is the RA, the MTX/ pain meds or the virus I've got just now. Its just a big journey into the unknown!
Thanks Tilda, I think thats my worry even if the steroids hide some of the pain I'm still exhausted and dont know how I'll be one hour to the next. Which is what is making me worry about how i'll manage. Just before christmas i was unable to walk this week with the drip walking but a bit sore and very very tired. Also I'm putting so much faith in this drug working...as you say its the unknown. A,,
Brilliant question Allanah, I am asking that at the minute as well - taken off metx put on to arava and just off a course of steroids. I think the initial pain relief was due to the steroids but i am still not as bad as i was before christmas so i'm wondering if its the after effects of the steroids or if the arava is actually working. But that awful weariness is still hanging around. Gosh you do sound as though you have had an awful flare up there, i hope it is the embrel that is working for you and you continue to improve.
Its so weird I can't believe how active I always was and now I'm so tired! But if I go to bed I'm too uncomfortable and and if I don't I'm too tired!!!! I think you are right I will have to think about cutting hours, thanks xx
Thanks everyone, you've given me a lot to think about. Axx
Hi Allanah
I am an A.S. sufferer with symptoms similar to RA. I recently came across this site because I was looking at Embrel which I have been on for many months. When I saw my Rheumatologist he was amazed at my pain scores being so high. I said that it was just a bad flare up but he thought that the drug was not having the desired effect. I argued and he was happy for me to continue being on it but on the downside as it is so expensive N.I.C.E. monitor these scores and are looking to save money. So like everyone else with these conditions I will have the bad days but when you get measured for pain you need to be mindful of the consequences of bad scores. For me Embrel does work but took a while to kick in. I was on Humiera at first but that drug left me with a bad rash so I came off it and went on to Embrel. I have virtually given up work because of age and fatigue problems and I do feel better now.
Hi Jezza, interested to see Humira gave you a rash. It gave me one as well and I was taken off it and put onto Enbrel which works fine. I hadn't heard of anyone else getting a rash although i expect others must have done. I had quite a battle with the hospital who wanted to know why my consultant was changing me over and did I know how expensive the drug was? So? - I need it - he wouldn't have changed me onto Enbrel if the Humira was working and not causing problems.
God, these admin people drive me mad - no medical training and think they know it all! LavendarLady x
I was given the choice between Humiera and Embrel and I chose Humiera originally based only on the knowledge that you take it once a fortnight. After a number of weeks rashes appeared on my lower back and on my left ankle so I went to see my Anti THF nurse. She said you can't carry on and then said she'd have to apply through NICE for a switch. This took a few weeks so I was back to square one relying on the anti inflammatories. Lets face it they do a bit of good and some harm to. Embrel application went through OK but I do still get the odd spot again on my left ankle. It does itch as well and the best way to treat is with Dovobet cream. Its very greasy and requires a lot of effort to squeeze it out of the tube. Hope this helps
Thanks Jezza for giving me hope the Enbrel will work for me. I still in the back of my mind think the RA will just go away! But I think I will give the Enbrel the time to work then make decisions about work..unless they make them for me !xxx Sorry I dont know either what AS is!?
Glad to have been of use. A.S. is short for Anklylosing Spondilitis. It was first called poker's back and people with it have a stooped posture because part of the spine fuses due to extra bony growth between the vertabrae. AS also affects other parts of the body, neck, knee joints, muscles and in some instances the nervous system. There is no cure and flare ups are common and I get by with exercise, drug thereapy and a visit twice yearly to my Rheumatologist who helps me to be positive. The hospital I go to provide therapy groups but you can only go on them every 18 months or so. The great thing about them is the Hydro therapy. Have you tried this?
Sounds simply horrid for you! But does have similarities to RA so I can see why u get similar drugs. I asked my consultant about swimming but they said no! However I have had this disease since March and haven't really left the flare up stage so I suppose he just wants to get it under a bit of control if possible, but its all the things surrounding it, work, steroids, drug problems and weight gain that have bothered me most.But hoping Embrel is gonna work.....
I can understand where your consultant is coming from but whilst swimming may be too much for you but Hydro certainly isn't. In fact its very beneficial. If you have not done it before then find out where the nearest Hydro pool is. You will need to be supervised as this is not a swimming lesson but a series of exercises in a warm pool. They build you up and if you are lucky you can have relaxation period in the pool in which you float like a log. You just switch off in a manner of speaking and I can't recommend it enough.
i just started embrel and i feel really great on the combo of embrel and methotrexate i have been taken off leflunamide have been told I will be lowering methotrexate anyone else been told same thing
I don't think anyone would give you an answer to that. Only if you stop taking steroids and see improvement in your CRP and ESR over some time you can say smth it's working. When I was diagnosed 6 years ago I asked myself the same question. Now I know when my RA is under control and when I have bad flare up. That knowledge comes with experience.
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