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Date: 14.11.2014
From: Julie

Subject: weekly Toc trial

Hi, is anybody on the weekly injection of toc? I had my first one on Wednesday - cant say any change up to now.
My problem now is that the day after I had injection I got letter saying that I am positive for latent tuberculosis. Consultant says not to worry and that I can still do trial. Easy to say not to worry, but I know if you are on immune suppressants they can wake up the tb, I am still taking mtx weekly aswell.
As a lot of people know I am hopeless doing my own injections and this is going to be a real challenge - again - they don't have this in pen form I did ask. I was hoping for an immediate miracle because I have been in bed now for about 6 weeks with horrendous knees only getting downstairs to go to hospital or doctors. We also move on 28th into a bungalow which is going to be really hard to do but will be better to get rid of stairs.
Any comments will be appreciated. Hope everyone is coping and not in too much pain.
Julie
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Date: 14.11.2014
From: Colin W

Subject: Re: weekly Toc trial

realy feel for you Julie , know little about the TB apart from what I seen on wiki , dont know if its because the giving us live vaccines at schools

as for the weekly Toc injections , its realy bad that you have not got the pens , myself would refuse to do them unless someone gave me the injection , just could not do that myself after trying with MTX

gl with the move , wish we had a bungalow but not going to happen , grew up in one so dont seem strange to me , just hope Toc works alot better for you than it has for me , still on high steriods & changing drug in new year
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Date: 15.11.2014
From: Julie

Subject: Re: weekly Toc trial

sorry its not working for you Colin after all you have been through you deserve something to happen. Didn't you get any relief from it at all. Maybe the weekly dose would help better, but I think that is only on the trials. What will you be going onto?

I am not on steroids now although I did find they helped a lot. I had a call from my nurse yesterday and she said if I couldn't do the injections would Dave be able to do them for me, he actually hates hospitals and anything medical, but he said he would do it if I wanted him to.

I told her that I thought it was really unfair of them to ask that, I said I was doing this trial for their benefit (well mine aswell) and the least they could do would be to do the injection for me, she did agree and said that when I go on Wednesday she would do it if I wanted her to.

I keep getting phone calls from daughters I think they were hoping for immediate results as well, wish I could have said yes, the only thing I have noticed is my knuckles are not red, but my middle finger has a life of its own, again they know that but still say about me injecting myself.

I wondered about the vaccine we got at school, but I am 64 and would have thought it would not be in my system still, will ask when I go to TB clinic, gosh that sounds really horrible.

I just haven't got the slightest bit of excitement in me about moving but its got to be done, I am sure it will be better for me.
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Date: 15.11.2014
From: Paula

Subject: Re: weekly Toc trial

Hi Julie , that must be a real worry for you, and with moving house and thing you have a lot on your plate, you should ask your drs to see if there is anything they can give you to stop tb activating again, and if they don't give you a pen then they should be giving you the injection, I am sorry to here you have been house bound for 6 weeks, is it better to have injection than the tablets, I am on 10mgs but I am just getting over the flu so am off my tabs at the moment and am really scared I will be back in terrible joint pain again, I have only been on my tabs for 3 weeks so not helping at rhe moment xx
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Date: 15.11.2014
From: Julie

Subject: Re: weekly Toc trial

Hi Paula, cant have this med in tablet form its either injection or infusion, wish I had gone for the infusion one when they asked me last year!! I am wondering if they will put me on long term antibiotics to stop it activating, although it never has been active, apparently hundreds of people have the 'sleeping' tb and never even know, its just that I was screened so well to go on trial it showed up. To be honest with you it is 3 years October gone when I first said about my symptoms, and 20 months since treatment started and I am no different to day I went first time, so this trial on toc hopefully will do something.

Hope you feel better after being with flu and you get relief from your meds. we are all different what works for one doesn't for another, I suppose we are all guinea pigs for NHS.
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Date: 16.11.2014
From: Sean

Subject: Re: weekly Toc trial

Just wondered if the tuberculosis bacteria is part of the cause and severity of RA - and found this.

"it is estimated that almost one-third of the population is infected with M. tuberculosis [11]. Interestingly, an abundant presence of autoimmune diseases has been reported in these populations"

It appears that research is showing that the mechanism for RA might be similar to AS - just a different bacteria - and different genes in the people.

http://www.biomedcentral.com/1471-2172/13/13

I know other bacteria have also been implicated in RA - Proteus Mirabilis especially - and again we are not talking infection - this is smouldering / dormant infection that we think is not doing any damage. Also these bacteria make up a small percentage of the gut bacteria in everyone
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Date: 16.11.2014
From: Sean

Subject: Re: weekly Toc trial

Interesting that the antibiotic widely used in Antiobitic Protocol for RA is effective against Mycobacterium Tuberculosis -

http://astp.jst.go.jp/modules/search/DocumentDetail/0022-9776_60_5_Antimycobacterial%2Bactivities%2Bof%2Bminocycline%2Band%2Bciprofloxacin._N%252FA
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Date: 16.11.2014
From: Julie

Subject: Re: weekly Toc trial

that is really interesting Sean and thank for posting the link.

If you remember couple of months ago they did say I was going to go on Minocycline, which I was really pleased about but then all of a sudden they asked me about this trial. Oh I only wish they had put me on minocycline. It is only classed as sleeping TB but when I go see the TB doctor I am going to push to go on antibiotics and see what they say.

I am sick to death of it all to be honest I cant stand up properly, the agony in my knees is unbearable, I feel as if I am just waiting for some big infection to get me and see me off. I am going to sit now and read all the info you sent me, forewarned is forearmed.
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Date: 17.11.2014
From: Sean

Subject: Re: weekly Toc trial

Yes Julie - I remember you mentioning this about AP therapy.

I just remembered another thread also about a new drug that is in the pipeline for RA - which was again another antibiotic that fights TB bacteria

http://www.redhillbio.com/product-pipeline/rhb-104-ra/

In this article here their trial for crohns for the same drug was that it has proven that crohns was not an autoimmune diease but starts with MAP infection -

http://www.marketwatch.com/story/redhill-biopharmas-rhb-104-combination-achieves-80-remission-in-independent-pediatric-crohns-study-2013-10-15

How can doctors disregard antibiotic therapy - especially when new companies are trialing drugs that highlight that part of the driver of autoimmune diseases is environmental - not just our bodies attacking itself for no reason.

For me automimmune dieases are a case of mistaken identity - when our bodies are doing a bad job of attacking something else other than us. In the medical literature this is called "epitope spreading" - and the same applies to Celiac - remove the original thing that the body was attacking (wheat gluten) and the body then stops attacking your gut, skin, brain, eyes.

The standard drug therapies for my own AS - and RA effectively make the gut more permeable / leaky - in order to make the drugs work better.

Doctors that prescribe drugs should be aware of all current research - I hope they are!
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Date: 18.11.2014
From: Julie

Subject: Re: weekly Toc trial

thanks Sean, I hope you are keeping well.
I followed link and ended up reading lots of info on roadback, very interesting that they are using Minocycline or doxycycline for different auto immune diseases. I know myself whenever I have had doxycycline, during my time with RA, I have been so well and my RA symptoms were minimal for weeks after. I know I could get Minocycline privately from a g.p. in my area but it doesn't feel right to do it while I am being looked after by the rheumatology team.

I just cant understand why they don't use these antibiotics first because they are so cheap, instead they use the most expensive drugs.

I should be happy I have got the chance of using tocizlamub but it does scare me especially as I still take methotrexate as well, so that's two really toxic drugs. I hope it works but still cant understand the reasoning using expensive without trying cheaper.

Do you think doctors are aware of all the current research? They are so overworked I don't think they can have the time.

I go again tomorrow for 2nd injection, don't know yet if I will be able to do it, cant even look at the syringe in box, but nurse will do it for me if I really cant do it. If I see consultant I will ask him why he changed his mind about Minocycline, but to be honest if this works I will be so happy, I haven't had a normal life for 3 years its to long for anyone to wait.
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Date: 10.01.2015
From: Emily

Subject: Re: weekly Toc trial

I'm currently on infusions of toc but I'm starting on the injections next month. It's annoying they don't have the pen injections I agree as these injections are harder to do especially with arthritis in your hands! I'm happy to have them thou and do them if I can if not my husband will have to do it for me. It will be so much easier than going to the hospital each month as it's a fair journey for me.
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Date: 10.01.2015
From: Julie

Subject: Re: weekly Toc trial

Hi Emily, I am now on my 8th week of the toc injection. I don't know if the injections you will be using are the same as I have (I am on a year trial of weekly toc) the syringe is really thick plastic and it has a spring inside so when you release the plunger the needle goes inside syringe. It is a slow plunger which seems to take forever.

To be honest I am surprised how well I am managing them. I feel so well it is worth it. My CRP was 240 at beginning but it is now down to 7, the hospital team are brilliant and so is the consultant they look after me and nothing is too much trouble.

I only hope the well feeling continues. I have even helped with the decorating by painting, to think months ago I was practically bed ridden it is marvellous. I only wish it worked for everyone.
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Date: 12.01.2015
From: Emily

Subject: Re: weekly Toc trial

Wow that's amazing Julie!

I've been having Toc 3 months now (infusion) not noticed a massive difference yet but I'm still on steroids so hard to tell although I am starting to be bake to reduce so I'm thinking it's working!!

Do you get any side effects? I'm feeling very turned after the infusion. I'm also very cloudy headed and forgetful. Worse for a few weeks after infusion but never fully goes. I'm hoping this is better with a weekly injection. I didn't realise it was a trial thou. My rheumy just said it's new. I guess I will find out more when I have the nurse come to show me how to inject etc. I've been shown the injection by my rheumy nurse. Was a plastic style thick casing with needle (not a pen but it did click once it had gone in and retract by itself rather than having to pull the needle out). Is this like yours on the trial? X
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Date: 12.01.2015
From: Julie

Subject: Re: weekly Toc trial

Hi Emily, I hope you do get to go on weekly. I am on Toc as a trial, but if you haven't been asked and filled in all the paperwork and had all the tests I don't think you will be on a trial, some people do get Toc without being on the trial.

I still take methotrexate and plaquenil, being on the trial involves a lot more hospital appointments and a lot more health checks, bloods are taken in larger quantity aswell, all the bloods are sent away to be done by a company, could be Roche I don't know.

All I can say is that I am really looked after and if anything does happen I am taken off it straight away. My joint count is recorded regularly and in beginning I did have joint count of over 28 joints but now she only ticks about 6 of the boxes so it is doing something.

I haven't had any side effects that I can think of. I also have to fill in a diary record which again is from Roche and if I don't do things as they are planned apparently I could be taken off the trial!!

The syringe does sound the same, I am given a thermal bag to take my injections home from the hospital and they have to be taken out of the fridge for 1hour to 2 hours before I use it, if its cold it hurts more.

I hope you get good results. Keep us informed of how you get on.
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