My consultant mentioned that when I go back to see him (2 weeks away) that if there is still no improvement then we will go onto a biologic.
I'm wondering what the process is, are there tests to be done beforehand? I'm still in limbo waiting for meds to start working but I'm pretty sure it's not as it's becoming gradually worse.
I am due to start back at work in August (after maternity leave) and a boss asking now what i'll be capable of!
while I'm at it, have some more......
Also, if diagnosed with severe RA is it still possible to keep under control with the right meds?
I had a four month wait from time Rheum requested biologic and actually seeing nurse (Ireland). For Humira, I had a chest xray and a skin biopsy thing. I have to have monthly blood tests & am quite strictly monitored by the results of these. My bloods are all within normal range now for inflammation, this does'nt mean that you are completely pain free or never tired, but over a year on it now twice monthly injection & the improvement is amazing, can go for walks, out at night, and work part time, manage family, house etc. The first time you inject yourself with the pen on your own is a bit daunting, but after that its a doddle! I could do it on the bus if I had to! I have read on here , that Biologics can stop working, but for the moment it has made a huge difference to me, I no longer feel I am becoming disabled. Go for it, what have you got to loose? I got choice of embrel or humira, I chose Humira, as only non animal anti TNF & also most up to date at time. I'm not an expert & don't claim to understand everything do with RA, but glad I started on Biologic, when I had the opportunity. xxx
Thanks for that Gina, I think it was reading your experiences in other blogs that has given me the confidence to accept a biologic and not worry so much about them. I hope Humira will be an option but unsure what i'll get offered.
Oh the thought of going out at night!!! as anyone with RA reading this will understand from around 8pm I turn into a pumkin
take this opportunity i would... alison. painkillers dont stop possible joint problems
only biologics and dmards do.. at the end of the day it is your decision.. god luck xx
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Thanks Summer, I'll take everything going!! whatever helps x
interested to see what happens as I am approaching a similar decision. I am not sure I want to take the next step but do not want to deterioate any further either. Good luck with whatever you decide xxx
Hi Lulu, thanks for that, i'll put an update on when/if it happens. As I said to Gina (above) her blogs/info have helped me overcome some worries x
FOr me from the moment my rheumy told me he wanted me to go on biologics two weeks later I had to see nurse for das results then had to have this done again 6 weeks after and because results were so high on all 3 das results then I qualified for treatment I had too wait a few weeks for the prescriptions to be sorted then health care at home delivered my enbrel and a nurse came a few days later to watch me do my first injection x sorry for the short detail I'm on my phone x
On computer now lol
I was seen by my rheumy he told me he wanted me to go on biologics as other treatments wernt effective enough and my das result was showing severe active RA
He gave me three lealets of choices of them
I was seen two weeks later by rheumy nurse and das result was done again, it had gone up again 7.8 this time 5.1 is classed as severe
Then 6 weeks later I seen rheumy nurse again, the two weeks before I went back I had a major flare and my gp had increased my predisolone to 40mg, the nurse was worried about this and said she thought I would fail the das score with such a high level of steriods however when das was done again it was 7.4 so not much diffrence she was gobsmacked!
Then she said I qualified I was asked which one I prefered, I chose Enbrel (just personal choice no real reason except this one was weekley more chance of remebering lol) then she gave me test injection pens and shown me how to do it
I was given a card to go to the hospital for chest x ray, they had to check with a previous consultant about my barrets osopogus to make sure it wasnt an active problem, they also did more blood tests ect to check for imunity to chicken pox, measels etc.
All these results took about 2 weeks to come back, the rheumy nurse then phoned me to say that I had been given the all clear to start the drug and my rheumy had just signed the prescription.
I was then contacted my health care at home (the company that deliver the drugs) I was told my delivery would be there thursday and to expect the nurse to be out either Friday or Monday and that she would contact me to arrange a suitable date.
However a week after delivery of the drugs and I still hadnt heard from the nurse, so I phoned them every day for a week and didnt seem to be getting anywere, I was getting stressed there in the fridge was what could be my miricle drug and I couldnt use it till this nurse shown me how! So I phoned the next day after they still hadnt got back to me as promised it was a Wednesday and I said if I dont get a nurse out this week I am just going to do the injections on my own, to which they started to panic and say you cant do that needless to say the nurse was there first thing Friday morning.
I have 3 injections left out off my first 3 month prescription and I should be due to see the rheumy nurse soon to have my 3 month check up to see how they are working, my blood results crp, esr do seem to be dropping a little which my gp says is good news however I dont feel much difference yet, but Im not giving up hope this could be my miricle drug.
Sorry for the long story, I just know how daunting they are but I see it as anything is worth a try, as for the side effects I see it that if you read every side effect on paracetomol you would be worried about taking so if there is a chance of less disability and even a hint of a chance off less pain it would be so worth it xx
Take care and let us know how you get on Julie xx
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Thanks Julie, glad it is a long story, helps to know as much as possible.
I really hope you feel the benifits soon, I'll keep an eye out for your post;see how your doing.
I spoke to an elderly woman a few weeks ago who was diagnosed with RA 30 years ago, she gave me the best advice also, she said ''don't read the side effects when given any new meds''....... she never had and I get her point totally, ignorance surely helps for sure
Now I'm wondering about the DAS score, the first time I went (3 months ago) I was given the score of 7.6 but with the help of steroid injection I feel much better for the moment, but I do have more swollen joints and bloods aren't showing any improvement, do you know what the score should be for them to go ahead?
I'll keep posting anyhow, it's so good to have this support!
Thank-you x
ps, I'm very impressed by the way, on the phone AND on the computer at the same time!!!lol
Hi Everyone, I also had to have chest x ray before going onto Humira (now on Enbrel). I also have monthly blood tests to monitor what is happening with the RA. My RA consultant very pleased with the tests over the last 3 months which are fairly stable. I must admit since being on anti tnf for 3 years, the improvement is nothing short of a miracle (having been in a wheelchair I can now walk some, dance a little (nothing too strenous, it has to be a slow one and I do get tired quickly) work 3 days a week - a very busy trial lawyer. Don't let your boss intimidate you about what you can and can't do. You come under the Disability Discrimination Act - your firm has to adjust to accommodate you not the other way round! I was given a special chair both at work and in court to assist with getting up and down. Took plenty of breaks for a short rest (not so easy in court but the Judges and Magistrates were very good), a foot rest for my feet, and wrist supports for my computer and mouse mat. I always let my office know if I was feeling unwell and in pain and discomfort - everyone was very supportive once they knew. And if I had a flare up I would let them know as soon as it started so alternate arrangements could be made to cover my cases for the day. Although i usually staggered in regardless and made the best of it! Lavendar Lady
Thanks Lavender Lady, hearing the positive really helps.
At work I have 2 bosses, one very understanding and the other isn't! I love my job and am determined to keep going.
I know they can adapt quite easily without too much trouble, there's a bit of mountain out of molehills going on!! I teach, so like yourself, a chair, wrist supports and not putting my classes on the top floor is all feasable.
I'm very hopeful of a great response to an anti tnf
was given a special chair when poorly/ first diagnosed nearly two years ago! my colleagues think its ok to"share my chair" with me when im at work??!!, hot chair
I am also at the stage where biologics are the next step and I am scared of changing to something else. In will put it off as long as I have to. Glad to hear that humira is animal free. That makes my mind up for me. If I do need something else I will ask for that if it suitable for me. Will be very interested to hear how you go on.
Sheila, not really sure about animal free, and certainly mention of pigs & mice in anti tnf is sure to put us off. We now scientifically qualified to decide these things, plenty of info out there! The main fear with Humira is TB, so if you have had TB you won't get it that includes exposure ever, hence the skin punch thing. just remembered that!
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