Biologics for me then!

lindalegs

Since my operation I've been taken off Mtx because my CRP rates were rising and it was becoming less effective plus I've been getting waking headaches for a while now which my Rheumy put down to the drug.

Being 3 months without Dmards and arthur is raising his ugly little head again making life damned difficult at the moment. :roll: I've seen my new consultant this afternoon and she's taking me down the Etanercept (Enbrel) route which I can't decide whether it's the end of the road or the beginning. :???:

I have to be assessed and counselled as it costs £10,000 p.a. and they don't want to go wasting it on an undeserving case. I've had copious amounts of blood taken and a chest x-ray as the first steps and am waiting for a date for the assessment.

Now to ask you, the experts

What side effects have you experienced? How long does it take to feel the benefits? Are you glad you went on it or at least tried it? and when they deliver your meds what happens if you're not in?

I've had a steroid injection in my bottom (glad I put the frillys on!) and I'm waiting for that to kick in now ….meanwhile I look forward to your help and advice.

PS Does CRP stand for CR@P rates?

Luv

dreamdaisy

Enbrel? It helps some and hopefully you will be in that number. I wish you well with it and I sincerely hope it helps. It isn't an end, it is a beginning, especially if it is your first try at these things. Here's to a new start for legs! DD

traluvie

Sorry Legs can't help on the Enbral know nothing about it..I hope that you are able to go down the route and hopefully it will be beneficial to you..
The depo in bum i have..It is slow release so can take longer to kick in sometimes, The first time i noticed benefits in about 2 weeks, second time was almost instant (as i like to wait inbetween for a bit till i can't take much more then i'll go and have it done lol) So hopefully you should feel the benefits from that soon..

Ankyspond

lindalegs wrote:

What side effects have you experienced? How long does it take to feel the benefits? Are you glad you went on it or at least tried it? and when they deliver your meds what happens if you're not in?

Hi Linda,

Well here goes not sure I am an expert but been on it since last November and this is my experience. The assessment is the basdai test how they assess if you can go on it, you basically answer questions on how good bad you can do things or how much they hurt. When you go on it there has to be a significant improvement in your pain score (must be lower) to stay on it. They will teach you how to inject yourself and prob do it in the hospital for the first few times, I never thought I would inject myself but it's second nature now.

I am very fortunate and don't have any side effects only feeling tired. I noticed the benefits within a few weeks, and for me it was amazing the difference it made. Definitely glad I went on it and want to stay on it for as long as it works. They phone me and tell me a date, I can phone in the morning and get a two hour time slot for delivery. If I can't be in I can nominate somebody else to take them but it has to be done in advance and you have to leave a letter of authorisation. You need a fridge as it must go in straight away as has to be kept at between 2-8 at all times.

Hope this helps. Xx

P.s my mum always told us to have nice underwear on cos you never know when you may need a hospital!

and when they deliver your meds what happens if you're

elnafinn

Aw dear Linda, I did not realise you had all this going on, on top of not long getting on track with the "the other man in your life". I cannot help you with your questions but I am sure you will get lots of advice and support on how others have got on with it. I hope you feel you will get on with your new consultant and that you can work together on this new "unknown" for you. Pleased to hear you had your frilly's on and I do hope that the injection works well for you very soon.

Love
Elna x

skezier

Hi Legs,

Well flower at last they are looking for eyes forward that might help with not having a head ache?

I hope the assessment goes well and you can get started soon. Hey it might work first shot eh?!

Hope that jab will soon work for you and tis just as well you were prepared with your best clothes on

Good luck Legs and with luck it will all come good quickly and clobber the arthritis on the head with a giant acme weight Love Cris who has the sensible head on tonight.... scary that xx

Poppyg1rl

Hi Linda,
Apologies for missing your thread yesterday, I was a bit groggy and sleepy so only checking in now.
I've been on enbrel since July, firstly, unlike Humira to which I reacted very badly (I won't go into detail but was very scary) I did not react to enbrel, I tolerate it very well.
I have no side affects at all, the injection (I take it by syringe rather than pen form) is fine provided I leave the syringe out to warm up for half an hour, otherwise it can sting.
Psoriatic arthritis wise, before I started I had 60 tender/sore joints and 35 swollen, I saw my Rheumy on 9th Sept for an update and was cleared to have another 8 weeks on enbrel as there was a slight improvement re the right hand fingers. I have 55 tender/sore joints but still 35 swollen, one of the swollen joints is my shoulder and I'm due a shoulder arthroscopy on 19th Oct. There has been an improvement, only slightly but that's better than nothing and I'm very happy to stay on enbrel for the time being.
Good luck with taking Enbrel Linda, I hope so much that it works for you.
Take care and a one armed hug Xxx

julie47

Morning Linda

I am sorry that you have been having a rotten time, I didn't realize either :oops: I just thought you were doing so well with your new knee.

I hope the embrel is successful for you. I don't know anything about embrel so I can not comment.
I have my fingers crossed that the chest xray is good and they can start you on it as soon as possible, and that you don't experience any side effect. I am pretty sure you wont and this med will be good for you.

Take care
Sending hugs
Love Juliepf x

kathbee

Hi Legs

I cant help with Enbrel but just to say that 18 months ago I was put on Humira, one of the other anti-tnf's. I tried it for 6 months but had a few side effects. So now am on Rituximab, yes, another Anti, thats the one where you have two infusions in hospital 2 weeks apart and its supposed to last for months.

Have to say I had the first and second infusion June/July and do feel a bit brighter, not so much exhaustion and not so much of the feeling poorly with RA like I usually feel.

So its goodish news for me at last.
I have my rheumy appt next week so I will see what they have to say about my bloods etc.

Hope if you get the Enbrel it will help such a lot.
And hope you are feeling stronger after your op.
Love Kath

lindalegs

dreamdaisy wrote:

Enbrel? It helps some and hopefully you will be in that number. I wish you well with it and I sincerely hope it helps. It isn't an end, it is a beginning, especially if it is your first try at these things. Here's to a new start for legs! DD

Thank you, I think it's a new start too.

I just have to pass the assessment first ......so fingers crossed.

lindalegs

collywobble wrote:

Hi Legs

Well, I can't advise about the Enbrel, as you know, but I do know for certain that you are not an undeserving case!................Hope the jab kicks in soon flower, and I wish you well with all of this.
Love and hugs,
Lynn xxx

I think the downside for me is the assessment. Apparently when you've had arthur as long as moi and the disease is active I don't get the heated and inflamed joints as the damage is already done. I just get the soreness and pain so it's convincing Mrs Assessor my RA is active and kicking, though my CRP rate should help there.

Talk soon Mrs.

lindalegs

traluvie wrote:

...............The depo in bum i have..It is slow release so can take longer to kick in sometimes, The first time i noticed benefits in about 2 weeks, second time was almost instant (as i like to wait inbetween for a bit till i can't take much more then i'll go and have it done lol) So hopefully you should feel the benefits from that soon..

Hi Tracy,

I'm so glad you told me about the slow release. I don't know which mine is but I'm only feeling a slight improvement at the moment, maybe I have to give it some more time. As usual I'm expecting too much too soon :roll:

Hope you're well.

lindalegs

elnafinn wrote:

Aw dear Linda, I did not realise you had all this going on, .....................I hope you feel you will get on with your new consultant and that you can work together on this new "unknown" for you.
Love
Elna x

Hi Elna,

I was really worried about my new consultant especially as my retiring one has been the best I've ever had. She was brilliant and left me feeling she really cared which is such a relief.

So glad you're around as usual, but don't overdo things

Luv

lindalegs

skezier wrote:

Hi Legs,

Well flower at last they are looking for eyes forward that might help with not having a head ache?.....................Good luck Legs and with luck it will all come good quickly and clobber the arthritis on the head with a giant acme weight Love Cris who has the sensible head on tonight.... scary that xx

I'm taking the luck in both hands Cris because I have to get through the assessment first........................by the way are you sure you're Cris this post is a bit sensible for you! :shock:

Luv

lindalegs

Poppyg1rl wrote:

Hi Linda,
Apologies for missing your thread yesterday, I was a bit groggy and sleepy so only checking in now.
I've been on enbrel since July, firstly, unlike Humira to which I reacted very badly (I won't go into detail but was very scary) I did not react to enbrel, I tolerate it very well.......................Good luck with taking Enbrel Linda, I hope so much that it works for you.
Take care and a one armed hug Xxx

Thanks for this Poppy, it helps so much to read other peeps experiences. I didn't realise they count your sore and swollen joints .....this is where I could miss out because it'll just be my word.

I'll keep you posted and no need to apologise I'm grateful for your post.

Thanks again.

lindalegs

Ankyspond wrote:

Hi Linda,

Well here goes not sure I am an expert but been on it since last November and this is my experience. The assessment is the basdai test how they assess if you can go on it, you basically answer questions on how good bad you can do ..................................... but it has to be done in advance and you have to leave a letter of authorisation. You need a fridge as it must go in straight away as has to be kept at between 2-8 at all times.

Hope this helps. Xx

It most definitely helps Anky and you are an expert as you've experienced the drug and the disease.

I'm hoping I get the drug and respond as quickly as you have.

Brill advice.

Thanks

lindalegs

julie47 wrote:

Morning Linda

I am sorry that you have been having a rotten time, I didn't realize either :oops: I just thought you were doing so well with your new knee..............Take care
Sending hugs
Love Juliepf x

Hi Julie,

We all get rotten times on and off with this disease but this is when we prop each other up.

I hope you're feeling better about your postponed op.

Luv

lindalegs

kathbee wrote:

Hi Legs

I cant help with Enbrel but just to say that 18 months ago I was put on Humira, one of the other anti-tnf's. I tried it for 6 months but had a few side effects. ....................I have my rheumy appt next week so I will see what they have to say about my bloods etc..........Hope if you get the Enbrel it will help such a lot.
And hope you are feeling stronger after your op.
Love Kath

I'm much recovered from the op Kath but arthur has to come along and kick my bottom :roll: I want to get the RA under control so that I can get the best from having my newest knee.

My Rheumy told me about Rituximab and said it might be an option if Enbrel doesn't work.

Hope your bloods show improvement next week.

dorcas

Hi Linda

I'm sorry that bl**p arther is attacking you again. :x not what you were needing at this stage post op!

Enbrel was the first anti-tnf that I was on.... and it worked extremely quickly in dampening down arther.(within weeks not months)

It was delivered by 'Healthcare at Home' and it was easy to make arrangements to have it delivered elsewhere if I wasn't going to be at home. (had it delivered to me once, 60mls from home, where I was working ) It does have to be kept refrigerated though...

H at H also send out dates for delivery 6mths in advance, so you'll know when to expect them.... and can change dates, delivery address / any arrangements that need to be changed. They will also send out extra jabs if you make a mistake or damage the syringe. (guess who :roll: :oops: )

You will also be trained in injecting Enbrel and supported until you're confident in doing the injecting... :!:

I would have loved to have stayed on Enbrel..... but had a reaction to it and had to come off it. :roll:

I'd see it as a beginning Linda.... if it works for you it could make such a huge difference ... I really do hope so. :!:

Iris xxx

ps... you'll be carefully monitored while on it too.

barbara12

Hi Legs
Sorry I cant help, but I really do wish you well with it, and yes it will be a new beginning for you....I feel it in these bones of mine... :roll:

lindalegs

dorcas wrote:

Hi Linda

I'm sorry that bl**p arther is attacking you again. :x not what you were needing at this stage post op!...................I'd see it as a beginning Linda.... if it works for you it could make such a huge difference ... I really do hope so. :!:

Iris xxx

ps... you'll be carefully monitored while on it too.

Thanks Iris for taking the time to answer in detail. What a pity you had a reaction to it.

I do see it as a new beginning ..........pity it's a bit late in my life to hey-ho better late than never ..............if I pass the test.

I shall take hubby to the training with me and I'll make sure he puts his nurses uniform on in case I can't face doing the jabs. :roll: (Trust you to be the one who needs extra syringes )

Good luck again for your op on Thursday.

lindalegs

barbara12 wrote:

Hi Legs
Sorry I cant help, but I really do wish you well with it, and yes it will be a new beginning for you....I feel it in these bones of mine... :roll:

Hi Barbara, nearly missed you as you snucked in at the bottom

I'm glad you feel it in your bones, all I feel at the moment is lots of 'ouch'

Thanks for your support.

Firemanphil_39

I've just had my first dose of Anti TNF less than a week ago... Well friday morning to be exact... Now i'm planning on going out on my bike tommorrow for a 30 miler! The inflamation that has been plaugeing my knee has all disapeared over night!!!
I can't beleive it...
The company whom deliver it to me arranged with me a suitable time to deliver, so no problem..
Even the nurse who came out to 'show me' how to inject was happy to re arrange and come at 8am instead of 10am ( rearranged the night before the day!)
Most agreeable....

I chose Golimumab... being delivered/managed by medco.. Top marks

ironic

Hi Linda,
I was wondering how you were getting on with the mtx as you were thinking about increasing it before the op.
Sorry the headaches where caused by it. :sad:

Of no use whatsoever to you re the Bio’s but I do wish you well and hope you get a good result from it. You deserve some luck and are definitely “worth it”, I have everything crossed for you let us know when the assessment is and I will send some positive vibes.

Gentle hugs,
Lv, I x

tkachev

Good evening Linda. I have to say I have been getting headaches with Methotrexate, although this weeks dose behaved itself.

I'm still on MTX despite it losing its effectiveness 3 years ago so they added Humira (Iwas offered humira or enbrel)For me biologics were the beggining of a welcome relief from the overall pain. Itworked from the first injection, although it seems I am a rare case and finally you HAVE to be in. You can phone and cancel a delivery up to the night before, ring to check within a 2 hour slot when they are in your area and if you do forget and go out they won't leave it on your doorstep in the midday sun!

Elizabeth

tkachev

lindalegs wrote:

collywobble wrote:

Hi Legs

Well, I can't advise about the Enbrel, as you know, but I do know for certain that you are not an undeserving case!................Hope the jab kicks in soon flower, and I wish you well with all of this.
Love and hugs,
Lynn xxx

I think the downside for me is the assessment. Apparently when you've had arthur as long as moi and the disease is active I don't get the heated and inflamed joints as the damage is already done. I just get the soreness and pain so it's convincing Mrs Assessor my RA is active and kicking, though my CRP rate should help there.

Talk soon Mrs.

I remember they put me on Humira because I had so much damage and nothing else was working . They wouldn't operate on my hip until they had the R.A under control, which, thankfully , happened very soon after starting.

Elizabeth