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Date: 19.09.2014
From: Julie

Subject: Sooo so disappoined

I was at rheumy last week, waited 12 weeks for appointment which was supposed to see head rheumy about going onto Minocycline. Guess what never saw him just usual rheumy who I don't like at all and all I got was another appointment for 12 weeks time and she said exactly same again, she didn't even give me any help with the pain I am in.

Yesterday got a phone call from hospital asking if I would like to go on the tocilizumab trial, I refused this early this year, but this time it is for weekly injections but don't go while 22 October. I was really looking forward to going onto antibiotics just to see if they would have worked plus they are tablets.

Is anyone out there doing this trial with weekly injections? I hope I don't have to do them myself I remember doing the mtx ones for a few months it has totally put me off doing them myself to a point where I actually feel sick thinking of them.
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Date: 19.09.2014
From: Jackie

Subject: Re: Sooo so disappoined

Julie I gave you the name of the clinic near you that will treat you with AP. I promise I am not a fruit cake advocating AP, I am an RA sufferer like you that has reached remission on Minocin alone. Give the clinic a ring and apparently the lady doctor there keeps the fees way down, much cheaper than the clinic I go to in Surrey.
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Date: 19.09.2014
From: Colin W

Subject: Re: Sooo so disappoined

hi julie , u should give tocilizumab a try , its one of the better biologics around , in the UK they dont like us using antibiotics& anyway those of us with severe RA needs the stonger drugs

its a shame they dont let us try Minocycline as people with milder RA it does work , I am staying on Tocilizumab until early next year & my CRP is brilliant , & the injections will be a pen which is very easy & not like the old methojet injection
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Date: 21.09.2014
From: Colin W

Subject: Re: Sooo so disappoined

Julie , dont know anything about this place , but its what some people use to try Minocycline on the roadback forum , would still recommend you try Tocilizumab

http://www.burghwoodclinic.co.uk/
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Date: 21.09.2014
From: Caroline

Subject: Re: Sooo so disappoined

Colin this clinic has changed hands and is no longer called the Burghwood clinic. There is another one in Belgravia, London one in Beverely and two more in the south of England. Minocin is recommended as a DMARD by the American college of rheumatology in the treatment of inflammatory arthritis.
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Date: 21.09.2014
From: Julie

Subject: Re: Sooo so disappoined

Hi, thanks everybody for advice.
Jackie Hi, yes I do have the clinic and the doctors name and its only a couple of miles from where I live. My problem is I don't want to 'offend' for want of a better word the doctors who are trying to treat me now, they might not accept me back if I do go see her. But thanks to you I do know how good it is and where to go if things don't go to plan. Who knows I might not be eligible for this trial, I did have pre cancerous cells many years ago and have had kidney stones in the past, I just wish appointment was closer I am in so much pain.

Hi Colin, I have been given all the details of the drug and I am going to go see the team but I have got a lot of questions that I need reassurance for. I really need help now, life is just not life anymore. We are in middle of selling house and I just sit in middle of it all while my hubby does everything and I really want to be involved, more than that I want the pain to go away. So I will seriously consider what they are offering. Glad your crp is brilliant I think mine must have gone off the scale!!!
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