Does anyone understand the relationship between antibody profile and Auto immune conditions such as RA ??

PLease can any one explain why my consult wants to look at my antibody profile before deciding which biologic is best????

thanks xx

[Hidden]

Hi sparkle, I'm on Rituximab a Biologic that knocks out the B cell's, I believe some are a little different to others so that's why he may need to look at your antibody profile first.

I think that's about right but I'm sure Lyn will tell you more.

I'm sure you will be put on the right drug to suit you.

mand xx

[Tricia-P]

Hi Sparkle

I'm not100% sure but I believe the antibodies he may be talking about are the CCp's which are the platelets that form when you have more inflamation with in your blood.

There are Anti TNFs that work better so said I'm sero - negative and have Humira.

There is a trial called BRAGGS which is looking at our Genes and is one Anti TNF more likely to work with a common gene so if you have a ABCD gene and have RA they will be able to to prescribe xyz anti TNF and know it will work.

Hope I've not confused you too much.

Love

Tx

[Hidden]

Hi! I am in a similar position and awaiting the return of the results.

Biologic drugs are made from synthetic proteins engineered in laboratories. They work by blocking the activity of a key chemical or cell involved in the inflammation that gives rise to joint swelling, pain and other symptoms. They are powerful and specific therapies which target particular chemicals

Anti-tnf were the first biologic drugs developed and they work by blocking the activity of anti-tnf. Other newer biologics target other areas of the immune system such as Interleukin 1 (IL-1), interleukin 6 (IL-6) and B and T lymphocytes. They don't work for everyone but usually after 6 months or so 2/3rds of people have usually improved. By checking the antibody profile it may give better guidance about which biologic therapy is likely to be a successful treatment for you.

For example I am (until the results come back!) sero-negative. This means Rituximab, which works by depleting B-cells is far less likely to work for me as I do not have Rheumatoid Factor or anti-CCP in my blood (although I suspect I will have by the end of the week!). Tocilizumab works on Interleukin -6 (IL6), a small protein in the body that causes inflammation.

So basically, depending on the blood assay and the make up of your individual profile, different Biologic therapies will offer alternative ways of treating RA. NRAS have a really good publication with loads of information about this, "Biologics - The story so far". Do ask them for a copy, it is interesting and very informative.

Hope this helps

Lyn x

[Hidden]

Hi Girls

Thankyou. I think it will take me a while to get my head around this information.

Whats slightly concerning me is that my consultant said that I might be a candidate for Mabthira but my lymphocytes are always really low ( they were before I was methotrexate too) about 1 to 1.4. Are the B cells Lymphocytes? I know t cells are at least i think so.

I am sero positive ( I dont think strongly ) what is strong?

My count was I think 15 but not sure. What happens if you have low lymphocytes does it make you more prone to Lymphoma?/other things Just trying to cover all angles so that I can try to go for the right thing. Ive been given aload of leaflets at ther moment about all the different ones but not sure yet how much say I have in the final choice eg cost led? I think I have antibodies RA and Lo whatever that means????? Does anyone else. I have to say lynn/Tricia your wealth of knowledge is Fabulaaaas!!!!

xxxx

[Hidden]

ps lyn just seen that you confirmed above that lymphocyates were B and T.

By the way I dont get why knocking out just one type of Lymphocyte helps RA?

Whats wrong with B lymphocytes what do they do to cause/affect RA in people like me?

Does that mean that the T lymphs have to do all the work of the B`s? What was the Job of the B`s any way?

Oh dear now Ive gone on one.......... Sorry all Hope its not too boring...........

[Hidden]

Oh crikey! Where to start!!

The ideal/normal range for Lymphocytes is between 1 and 3. Have a look at this answers.com/topic/how-do-t-... which explains the jobs the 'B' and 'T' cells do. They are quite different from one another and have specific jobs; I don't think they job share!! Depleting one lot of cells will only work if you are knocking out the right ones! Which is where treating RA becomes so difficult; our profiles, like our disease responses, can be very different.

Rituximab (Mabthera) targets a molecule called CD20, found on many B-cell lymphocytes. These cells develop into anti-body producing cells. Rituximab works by depleting these cells and therefore improving inflammation, joint pain and fatigue. To be a good candidate for Rituximab your bloodwork needs to show the presence of this particular type of B-cell. It is far less likely to work if the patient is sero-negative as these cells are not present in large enough numbers.

My rheumatoid factor has come back 'weakly positive', haven't yet asked what this means as I'm still waiting on anti-CCP results. I assume I have a small number of antibodies present. I think 15 might be quite weak as I know people with RF up in the hundreds!

I think several of the biologics may suggest 'cancer risks' because of the nature of the therapies. They are, after all, mucking about with the very core cells of our being and I suppose it is risky. However, all treatments are well monitored for side effects etc. One of my main concerns is the inevitably that as time moves on more and more people are being given biologic therapy earlier in the disease as a way to halt the progression. I would suggest that sometimes these people would have responded equally well on a less invasive, toxic and aggressive treatment.

Handing out leaflets right, left and centre, many to people who really wouldn't have the first idea where to start, is I think quite irresponsible. I agree we need the information of what is available but without detailed analysis of our blood profiles and the knowledge to correlate that with the information we have how are we supposed to make a choice of which treatment is right for us?

What drugs have you already had Sparkle?

Lyn x

[Hidden]

Oh, just found what treatments you have already had on your profile!

Arcoxia is a common or garden anti-inflammatory only any use for getting rid of swelling, temporarily. Plaquenil (Hydroxychloroquine) is a DMARD as is Methotrexate. So far you have failed on one DMARD, or are you failing on methotrexate too?

Current NICE guidelines set out a recommended order in which Biologics should be prescribed. After failure on two DMARDs (one is usually Methotrexate) you can be considered for anti-tnf therapy.

Normally the drugs available are Etanercept (Enbrel), Adalimumab (Humira) or Remicade (Infliximab). Again your blood profile might suggest that one may be more effective over another. Then there's personal choice, subcut or intravenous. lots of considerations! I think Cimzia can be given in certain circumstances too.

Rituximab (Mabthera) is only given n cases of severe active RA where there has been an inadequate response to DMARDS and at least one anti-tnf inhibitor.

After that Tocilizumab can be brought into play (earlier in Scotland!).

Rituximab and Tocilizumab are both very aggressive therapies which is why others are tried first. I wonder why your consultant has homed in on Rituximab without first trying anti-tnf agents? I think I would be concerned about this and asking pertinent questions!!

Good luck

Lyn x

[Hidden]

Lyn

Actually you are like a breath of fresh air!

Honestly I am getting really stressed at the minute. My relationship with my GPs has just totally broken down because they have refused to let me ring up and get my blood counts from admin.

My GP slammed the phone down on me because I argued with her and said that I did not think that any interpretation was required in reading out results/numbers. The bit she objected too was me saying that if they were employing people who could not read the word Lymphocyte and then the corresponding number then it begged the question whether they were fit for the job!

I know its inflamatory to have said it but Im so fed up and frustrated. The shared care protocol has completely broken down between my GP and Rheumatology. For example this morning my rheumy nurse rang and said

my bloods were fine and then 15 mins later my GP Admin rang and said that it was not. I pushed and she said it was low lymphocytes point 7 at last count.

Also I wasnt told who was responsible for monitoring my Methotrexate in the beginning so I didnt comply. Luckily no adverse effects.

Im going to change practice but will anyone give me the info I need to feel in control and reassured or are all practices the same. Who is responsible for monitoring Methotrexate Hospital or GP???

In answer to your question I have failed at Plaquenil, Arcoxia, am now on Methotrexate but TWBC has dropped to 3.5 so am not sure if it will be suitable

I am not stable. Today my GP said what are you on 3 monthly monitoring?????

Sorry you have just got it full in the face but I feel really scared and alone tonite....All because I want control of my bloods.... Oh god.....I dont trust anyone except myself in partnership with an expert to manage the situation. Problem is I want to be in the driving seat...........

I have no idea about what bilogic and I will only get5 to see the consukltant by paying to go privately which was I just had to do for emergency follow up app.

My trust is targetting new patients. Its good to get them diagnosed early but so depressing for established RA trying to have some kind of life... Guess you know all about that ....Have the t shirt etcetc

I have to say I have never blogged before but I am getting totally adicted to this site

Thanks for your advice its ever so welcome. Hope you are feeling ok I felt for you when I read that you have beeb struggling since August with flare etc

xxxxxxxxx

[Hidden in reply to Hidden]

Hang on in there all is not lost, really!! Please don't feel alone because you aren't. Will get back to you in the morning ... now have to extricate my leg from it's knee brace before I lose all functionality of the lower leg! Need to dig out my frozen petit pois before I hop off to bed Talk with you tomorrow and we'll take it one step at a time Night, night, sleep tight

Lyn xx

[Hidden]

Bless your Heart , Sleep as well as you can under the circumstances xxxx

[Hidden]

Hi all I find the NHS Choices website quite useful too on treatments and it has different ways of presenting information like videos - see nhs.uk/Conditions/Rheumatoi...

It does get better once they find a drug that suits you honest!

All the best

[Hidden in reply to Hidden]

I prefer you to my Rheumatologist

fiona

x

[Hidden in reply to Hidden]

Thanks Skippy going onto it today x

[Hidden]

Hi Sparkle

I have just sent you a message. Thought I'd better not post someone might get the idea I'm setting up as a Rheumatologist ... hmmm now there's a thought

Lyn x