biologic therapy

[missmopp]

hi all just got a letter from rheumatology , wots some bloods screen to be considered for biologic therapy , any else on these dugs , as I am worried about this as had so many side affect from the other dugs , jo x

[Hidden]

I am on anti-tnf, Embrel injections and I have had no side effects. All the drugs show the possible side effects that you can get but not all people do. I believe NRAS has a full list of these drugs which would be helpful for you to read on all the different ones.

Have they told you which ones they may be considering as the best course of treatment for you and given you the leaflets regarding those. If they haven't it may be your best option to wait until they do as otherwise you could be stressing yourself too much, which in turn will make your disease activity worse.

Take care. xx

[Hidden]

Hi, I'm not on biologics but I just want to wish you luck. I gather from some of your posts that you've been having a hard time of it. So many people seem to find that biologics work really well and often have fewer side effects than the DMARDs - I do hope that's how it is for you. Don't worry, be happy!

Luce xx

[Hidden]

Hey, I'm on a biologic drug (Simponi = golimumab) and it's worked absolute wonders for me - painfree within days and no side effects so far (been on it since last year in autumn). So don't be scared of biologics, they might work for you and give you back your life! Also, you'll have regular blood tests to pick up any side effects in advance!

Good luck, Christine xx

[Hidden]

Hi, I'm on Enbrel and have been for 18months, my only side effect is low white cell count but thats nothing compared to the pain of RA, I've been in remission for 18 months now I had it confirmed last month that I have no joint damage!

I read the side effects once and decided to bury my head in the sand, worked for me!

As Christine says, it may give you your life back, it has for a lot of us.

Good luck x

[Nantucket in reply to Hidden]

Hi I have just had a first dose humari, feel nervous as I have no luck with dmards, just wondered how enbrel is different than humari. How often do you get your blood checked ? I notice that your white cells get low, how low? Sorry for so many questions , it really helps to speak with others, thanks Carole

[Hidden in reply to Nantucket]

Hi Carole, don't apologise! I think enbrel and humira are very similiar however enbrel uses hamster protein and humira human protein, haha my hubby wonder when I'll invest in a huge wheel and start spinning!! now, where I read that I have no idea, if you posted that question I'm sure you'll get a much better answer

My white cell count dropped to 2.4 and hovered between 3 and 3.4 for months, I was on MTX as well and was told to stop until WCC started to raise but it never did. My consultant said it may have been a viral infection that caused this problem, it went on for 8 months and during that time I had 7 infections.

Looking back the best my wcc ever gets to is around 4.5 so I think I'm just prone to it. Back on MTX and still not fantastic was last 3.6.

When my wcc was low I had bloods done weekly but now monthly.

How are you feeling after your first dose? I've heard of some amazing results on Humira. I was around 6 weeks in when I realised how much better I was feeling, my DAS score went from 7.6 to 1.35.

[Nantucket in reply to Hidden]

Thanks for your reply Wilby, I had a cortisone injection two weeks ago before my first dose which was last Wednesday so I am in a good place a the moment. I have had lots of trouble with low wcc as all the dmards knocked me down so not sure what this will do, I am on a low dose of methotrexate 2.5. It is awful trying to keep away from ill people and you become paranoid if anyone even sneezes . I will let you know how I get on. Anyone out there on humari would love to hear, Carole

[Hidden in reply to Hidden]

Interesting you mention the white cell count, when mine was low they put it down to Leflunomide, which I had to stop for a while, (I blogged about last September as I was just about to go a cruise), this has happened to me before but that was when it was solely dmards. Are you on any Dmards alongside your Embrel?

[Hidden in reply to Hidden]

Hi Georje, yes, all explained above to Carole, I'm not sure really what causes my wcc but when I look back it only started to drop when I started Enbrel, when I stopped MTX it didn't rise. I'm only on a small dose of MTX 7.5mg, even when I was on 25mg the wcc never dropped. It is a side effect but a rare one I think.

In my mind this is what makes us better (the low wcc) It's not too much of a bother consideringhow much better I feel because of it.

Did your wcc improve once you stoppped Leflunomide?

[Hidden in reply to Hidden]

The count went back up and I am now back to Leflunomide and the Embrel. I have mentioned to the team that there appears to be a pattern from when my bloods reduce, as it did the same when on Lef with MTX. It happens in September, which is at the end of my bad phase, I won't call it flare. I am just about to go into the bad phase, whereby it's Spring and Summer when my PsA is at it's worse. Mine appears to lie dormant throughout the Autumn and Winter, with just little niggles and tiredness.

I used to have a similar pattern with my skin with Psoriasis, it would get worse in the Winter and Spring, but ebb through Summer and Autumn. The rhumey team have no answer to it, apart from coincidence. Not too sure if you are PsA or Ra otherwise I would ask if you had a pattern.

[missmopp]

thank you all . I will let you no wot happens , don't see my rheumy till April so not going to be doing any think till after that, just some old thing , doctor bloods , appointment's in my life,x

[Hidden in reply to missmopp]

Hi Missmopp

As the others have mentioned we do have a booklet about all of the biologic drugs which you may find helpful. You can download it from our website, here: nras.org.uk/help_for_you/pu... or give us a call on the helpline if you'd like us to send you a copy in the post or you have any questions. But it sounds like you have a wealthy of experience and lots of brains to pick here on HU!

Kind regards

Sarah Kate

NRAS

[petalnumber2]

Hello Jo,

I'm in the same position as you, because I've just been offered the chance of Anti-tnf drugs and was given 4 different types to read about. Like you I've had some bad experiences with different DMARDS and I felt a bit concerned about the side effects too. But, I phoned the NRAS helpline last week and had a chat with Victoria who put my mind at rest by explaining things more clearly to me. She also told me about the success of these treatments.

We think of Anti-tnf or biolgics as new, because they are new compared to DMARDS, but they have generally been in use for 10 years or so, and a lot of the initial concerns have proved to be limited. So, I feel happier and much more enthusiastic about being offered the treatment.

So, I hope what I have said helps a bit, but you could phone the helpline yourself and have a chat about your own concerns. They are very understanding and helpful.

NRAS helpline is open between 9.30 -4.30 Mon - Fri Tel: [phone]

Take care and keep in touch. Perhaps we could do this together June xx

[Neonkitty]

Missmop - I am worried too about biologics - wouldn't be be honest if I said otherwise, but encouraged and pleased to see here that people have had some great results on the biologics. I too spoke to (Kate) NRAS very recently and had replies on here from NRAS, and thone done a boatload of research and spoken to the people here and I decided can't spend my life bed bound and house bound with the level of RA I have and the madness of seizures in my joints and immobility. Going to see my Rheumy nurse Wednesday! I am allergic to Aspirin and some antibiotics but tolerated very well several DMARDS no prob, so it is a strange thing how one can be allergic to something considered fairly innocuous and then something more potent doesn't have side effects to stop you taking it. We are all different. I am sure though come that first biologic injection I shall be feeling pretty nervous.

Petal2 - true .... Some of the biologics have been around quite some time now over ten years and I do think the Rheumy nurse will suggest Enbrel for me. I have to have my screening of course (but I am approved for it already, apparently, due to high DAS and visible joint inflammation activity and having had other DMARDS.) I wish you well and do let me know how it is going as we will likely commence at a similar time. I was told I should be on a biologic in a month.

Missmop - someone here earlier in the month wrote to me when I was agonising over biologics that if they were offered them they would take them with open arms. That also made me think differently too. My consultant also said we had been "tinkering around too long" with some DMARDS not holding it. I think my overly patient nature has not helped me admit I needed something more than what I have been on. Hope you hear soon what they plan to do for you and that you are not in pain.

Nantucket - good luck with your Humira. Hope you soon feeling much improved

Wiliby, Swissmiss, Georje - it is great to hear your biologics are working. So very encouraging thank you. Swiss .... Pain free within days .... fantastic!

Finally, I do think trying to eliminate potential sources of stress is vital with RA. I am a very patient person and put up with a lot hence probably why I have resisted biologics thinking I might improve. Er not really. I have recently had to be very assertive with some most unpleasant people with no regard for my condition or day to day problems, taking advantage of me asking me to do lots of voluntary work and even "friends" and family taking advantage too. I was putting everybody before my own condition and well being. Never good for someone with RA. We need to be kind to ourselves.

[Hidden in reply to Neonkitty]

Yes it is very daunting at first especially the thought of having to inject yourself. With all that we hear and read, we never become complacent about our drug therapies, which is all to the good. At least here we can air our worries, and someone who has already got the 'T-shirt' can advice and help to alleviate those concerns and worries.

If I had to change my ant-tnf to another I would be back to square one and be in the boat that you three are in at the moment. This would be the first place that I would air my worries hoping that someone would be able to alleviate them.

Good Luck to you all and take care. xxx

[Hidden in reply to Neonkitty]

Heya, I was just terrified of biologics and had had bad experience with MTX and inflammation levels through the roof! However, I would just force myself to keep living as if there was nothing wrong until my consultant was practically begging for me to take the biologics. I ended up having such limited mobility that I had to confront the fact that improvement won't come with just stoically bearing the pain and limiting myself and cracking jokes about my condition. Sometimes what's needed if the usual DMARDs aren't working is something big & scary like biological treatment. I sometimes still can't believe how well they're working and it's even difficult for me to remember what it was like when the disease was still active! Similarly, when it was active I'd pretty much forgotten what it was like to live like a healthy person, I was just so used to it all. I think maybe that's sometimes a bit of a danger with RA, you just get used to it and think that this is what life is like. But now there are better options out there!

It's wonderful you get the chance to go on biologics and I really, really hope it will work wonders for you as well!

Christine xx

PS: I realise I might sound a bit like a PR agent for the pharma industry haha

[Neonkitty]

Thank you Georje - I am not needle phobic and been doing sub cut MTX but it is that new med/injection which makes us go a bit nervy! We are all human (well most of us - ha ha ... We have some super humans here I know!!)

Glad to know you are doing so well

[Neonkitty]

Thank you Swiss Miss. So great as I said to hear success stories. I too have been in that place called a denial also. I am a trooper also and battled on. Same as you. Inflammation levels gaga. Hobbling round. My consultant said last visit in January .... I may have to resort to bullying you to biologics. Get your mobility back. Get some relief.

It is so very true what you have said ... You get used to feeling bad and and kind of accept it. I am much encouraged, as i said, that you and others are benefitting so much.

Neonkitty xx

[Nantucket]

Hi anyone out there had side effects of humari, this is my second week and feel a bit rough not sure if it a bug but feel nausea off and on and achy, there have been lots of sickness bugs, I pray it is the drug, look forward to hearing, Carole

[Hidden]

I am on anti TNF treatment have been for years, I have been on Embrell, Humira and now im on Simponi (golimumab) I haven't had any bad side effects from the anti TNF treatment at all, after 2yrs on simponi im in remission.