When to say YES to BIologics?

My ESR is consistently about 40 and my CRP is around 57.

I have generalised joint pain and acute fatigue.

I have recently come across studies to do with raised CRP and associated risk of heart attacks. Therefore my question/qestions are around this.

How important in the grand scheme of things is it to reduce CRP levels? Are the risks of Biologics less definate than the risk from uncontrolled body inflamation? What exactly is the statistical risk from uncontrolled body inflamation? eg Heart /cancer/joint damage etc.

Presumably NICE thinks early intervention is a positive thing so or they would not have approved these drugs? Is the prescribing process for Biologics well rationalised? What about those studies which say that CRP and ESR are random results for People with RA- that is people with active disease can have low levels of CRP and ESR and people with minmal Disease activity can have elevated levels! ?

How do we make individual Risk assessments for ourselves? What are the main criteria we would need to involved in drawing up our own risk assessemnt and saying YES to Biologics? High ESR CRP? How much joint involvement?

MY hospital say my disease is aggressive? How do they know? what is the Science behind that statement ? I dont disagree I just dont understand the full rationale for what makes it wise to give Biologics?

I am very mindful of the opinions of some of the Patient experts on here who have questioned whether early intervention with Biologics is always a good thing? Why do others feel like that?

Thanks for any contributions and links !!! ( I still cant insert links to things Ive read so I can include them in my bloggs !- Doh !)

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Hi Fiona, I've always been told my RA is aggressive too but also I like to get involved in my treatment to a certain extent so that I know what my options are.

After 17 years I still don't know all the ins and outs of RA, especially with all the new drugs that are coming out but what i do know is that in all that time I have had total faith in my consultant in giving me the right treatment.

Sometimes I have been so ill I don't think at that time I even cared what I was having I just wanted to feel better, asking if this drug or that drug was the right one for me never entered my mind at that time I had enough to cope with then and didn't get so involved.

I have always been very well informed of the "new" drug I was going on and always given the literature to read and to ask any questions I needed.

But at the end of the day I don't feel I had much choice but to go onto new drugs such as biologics other drugs stopped working for me so my options were limited. As my RA was so aggressive and already well into the surgery and joint replacement route I needed to get control of my RA to give me quality of life! Something which I was not getting.

Sometimes I feel we can have to much information on the long term effects of RA and then get confused, do we say no to treatments that we feel are to dangerous for us long term? and then suffer the damage the inflammation causes etc Or do we want a better quality of life? I know what I want.

It's good to get involved in your treatment and we can of course say no to any of the drugs, but is that always the best thing after all were not the experts but it is our body!! mmm

Take care

mand

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I think you are lucky to have a consultant that you have total faith in and can access ok. I am unable to see my consultant very often and recently had to pay privately to see him in a flare because there were no emergency appointments in the following 2-3 weeks and I was in unbearable pain.

Also I think I am more cynical than most about trusting the system as I feel that lots of other factors affect the treatment we get offered /given and it is not necessarily based on our best interests.

I guess thats why NRAS and all health charities have a political voice too. ie NRAS campaigns about a variety of subjects including drugs etc and the Alzheimers Society for whom I work lobby about drugs available as well as the atrocious state of end of life care in the NHS for people withdementia on the whole. I am sure alot of the Cancer Charities campaign vociferously re the postcode lottery. I wish I could trust the experts but I am afraid I dont. I think no-one can care about our bodies like we do.I think my strong views are prob a minority though. Thanx for your reply Im going to have to trawl British/American Rheumatolgy site for reseach articles I think re then link with HIgh CRP v no Biologics or High CRP and Biologics

Best to you

Fiona

xxx

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Hi Fiona, that's the difference and it does seem so unfair, if I am having problems I have a helpline to call which if I call before 12 midday they will return my call the same day if after 12 it will be the next morning. I will then be seen within a few days, never had any problems in all the 17 years of RA. Probably good job too with all the problems I have had, but it should be the same for us all not post code lottery like you said, so unfair.

Your strong views may well be a minority but that's what makes you who you are, and that's what we need on here people with different views and ideas, if we all felt the same the site wouldn't work so keep on making your point.

My sister works with dementia patients, she loves her job too, and helps me so much don't no where I would be without her help and support.

Take care and good luck trawling!!

luv mand xx

[Gina_K]

Hi Sparkle,

I don't know if you are on facebook, if you make friends with Rheumatoid Warrior, she has access to the latest RA information in U.S. most recently ultrasound for RA. There is also a lot of info on internet about RA that is not substantiated by research. I have had to pay for all my consultants visit as we have a very different health system here than in the U.K. In some ways I miss the support of a nurse at times, but because I am paying my Consultant (or I should say her thru her secretary) will answer me on the day I need her. Initial cons cost me €250 & subsequently €170 a visit. I then pay a max of €120 for prescribed drugs for my family per month including Humira injections. At this point I am working to pay medical bills. From what I read here, I think my treatment is OK. I have no support as a private patient, nurse, help, hydrotherapy/ physical therapy podiatry/ etc. So you weigh it up.

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HI GIna

Thanks for that.

Glad you are happy with your treatment and it is working for you.

There are big differences in the health system between the US and UK. People in the UK are lucky to be able to access biologics when others in different parts of the world are having to work just to access these drugs. That said I pay my taxes.

I have recently accessed a research Paper from Leeds University in the UK. Entitled: Aspects of Early arthritis. Biological Therapy in Early Arthritis- overtreatment or the way to go? I think it is evidence based and from a trusted site. However it is a bit old ( 2007) and I need to do a wider search to see if there is something more up to date.

The article seems to imply that there is a significant risk of malignacy /infection when you block TNF-a which has an important role in fighting infectioin and regulating tumours. That said- when you do not control inflammation levels in the body you are at increased risk of heart attack and cancer as well as disability etc.. I am sorry if I am saying what most people know already. Its just new to me.

I feel very much as if I am in between the devil and the deep blue Sea.

I wish it could be predicted what our individual risks were . Much like a system has been devoped for evaluating cardio vascular risk.

In an ideal world my own rational for saying Yes to Biologics would prob be after Medics had assessed the following :

I am more at risk of having a a heart attack or some other life limiting complication from active RA/ inflammation etc than I am of deveolping cancer or a serious fatal infection from TNF treatment.

I think I would rather be alive, in pain and disabled ( assuming surgeries are also less of a risk than TNF) than I would have a prematurely shortened life from taking TNF.

I think I would rather be poor/jobless and alive than have no life at all. But I dont know until I am living that life that I really would. These are not easy decisions and everyone has to weigh it up for them selves.

If the pain became so intolerable (which I can believe from the problems I have had already) and I could not endure it- I would opt for TNF on the basis of quality of life rather than quantity.

Maybe I would be one of the majority lucky ones who get increased quality and longevity of life and maintain my income.