Lots of reading to do, chest x-ray, feet x-ray, blood tests .......

[petalnumber2]

Hello everyone, well I got myself all psyched up with list in hand to see Rheumy Doc this morning. I was determined to ask some questions about my high Das score and talk about my painful feet and ankles, but it was the Clinical Nurse who called me into her room and not the doctor. She is a lovely person and so good at her job, and I haven't seen her since 2011 during the early days after diagnosis. On fist meeting her she let me loose with her box of tissues, because I was beside myself with worry about how I was going to continue to care for my sick husband. But she had lots of sensible suggestions to make, most of which I have taken up, so I was pleased to see her again.

Anyway, she asked some questions, went through the Das routine and then told me that today my Das score was 6.1 which suggests high disease activity. Then she started telling me about ANTI-TNF treatment and said that I met all the criteria.

So, I have lots of reading to do, including information on the newest ANTI-TNF drug trial. So now there are blood tests to be done, chest x-ray, an x-ray of my feet, plus a diary to keep of health/pain during next six weeks and an overall health questionaire to fill in and get back to her. I had no idea how thorough the lead up to starting one of these drugs is. So, I think I might get a bit of eye strain doing all this reading, don't you! Let alone taking it all in too!!

It's a comfort to know that the NRAS helpline is there if I have any questions, also my clinical nurse.

Well, I got myself all psyched up for nothing didn't I, but there is of course a serious side to these and other medications we are on, and the nurse touched on this subject with me. So there is relief and a little trepidation, but then you have to focus on the alternative which isn't worth thinking about, is it.

Thankyou for your listening ears and your caring. Lots of hugs for anyone who is having a bad day, hope no one is xxx

P.S I've read through this blog before I click on that yellow PUBLISH button, and I don't think that I have said anything untoward here. Always best to check though.

[Hidden]

Dont be scared.. read , ask and research and good luck xxx

[sylvi]

Petal you will need glasses after all that reading. It is good you have a rheumy nurse that understands you.Don't worry about the effects these drugs do to your system look at what they will do in terms of easing your systems. I here a lot of people worry more about the drugs than how they will help them get better. Don't worry we are all here to support one another and as summer says good luck.xxx

[petalnumber2 in reply to sylvi]

Thank you for your wise words sylvi. I will do my darndest to stay positive. I put my hands together that I was spared this disease until reaching 64yrs. It's the youngsters I feel for. xxx

[petalnumber2 in reply to petalnumber2]

P.S. I really love the little games you come up with from time to time, especially the last one about favourite clothes we wore in days gone by. Really positive

[petalnumber2]

Thank you Summer, I'm sorry to know that you are in pain today! I've just read your comment on the other new blog, that's how I know in case you are wondering. Take care xx

[Hidden]

Well that really sounds like a very productive consultation to me and I'm really pleased that you have been offered these drugs because they are supposed to have really good results and I'm sure will have for you too.

The way I see it re long term effects is that none of us are going to be here forever so it's quality of life in the here and now that counts. Like you say it's youngsters in their teens, twenties and thirties I really feel the most for because they do have to consider the long term effects of drugs which haven't yet been around long enough to really know.

Don't you go worrying about that though - just do your reading and feel excited that you are going to get onto the best drugs for RA. I just wish everyone who needed them could have them too but that's not your problem and you have yourself and your husband's welfare to consider. Good luck! Tilda xxx

[petalnumber2]

Thank you so much Tilda, I'd love to share them with everyone, or even better, win a few million on the lotto and then everyone could have a private Rheumy Doc and get the best individual treatment. Pie in the sky I know. June xxx

[Hidden]

Just concentrate on getting yourself better June - that's the important thing. Some are very lucky and have extremely good NHS rheumatologists - private aren't always best. Mine seems good when I've actually gotten to see him! x

[petalnumber2 in reply to Hidden]

You are absolutely right Tilda, money can'not buy everything. It certainly helps to have a good and aproachable specialist, mine is not very aproachable, but he has a very good team around him, which makes up for that. My own GP has been really good this last couple of weeks. I have always seen Dr Mike in our practice, but about 10 months ago someone told me about this other doctor in the practice who has an interest in RA, so I changed over to him. I must say that I found him a bit stiff and starchy at first, but as he got to know me better he has relaxed, (we're all human after all). He is very thorough and on the ball, he also has quite a sense of humour, Ive discovered.

I hope all is well with you and have a nice weekend. June xx

[Hidden in reply to petalnumber2]

That's brave of you as you are friends and neighbours with your gps-I take it they weren't offended? Tilda x

[petalnumber2 in reply to Hidden]

No not at all, in fact when Dr Mike popped in to see how the painting of his horse was coming along just before xmas, he was concerned about how badly I was limping with my painful ankles. He went through my medication with me and suggested that I to go see Dr Akram and ask for a stonger pain killer.

What I havn't mentioned is that Mike was diagnosed with parkinsons back in the autumn and has recently semi retired with a view to complete retirement very soon. So, it's all worked out fine.

In fact that's why His wife Gill came to me for advice on art materials and an easel which she intended buying him for Xmas, a new hobby for him to get absorbed in. June x

[Hidden in reply to petalnumber2]

Well you are well set up with people to ask advice for on choice of anti-tnf then June? That sounds like a nice neighbourly friendship with plenty of quid pro quo! X

[Neverwell]

Snap I have the same pile to read thought and to fill in also DVD to watch

It will make the days go fast ha x

[allanah in reply to Neverwell]

Brill, great stuff!! Xxxxx

[petalnumber2 in reply to Neverwell]

Definately will make the days go fast. I've only read a bit so far,

and I've been advised to do some reading on line at Arthritis Research UK.

Happy reading!! June xx

[gazelleLOL]

All my best wishes to you that this route will enable you to

continue to support your hubby whilst easing your pains.

Many of us have similar fears and sometimes the fear can make

our symptoms worse.

I really do wish you every bit of good luck that the meds do all

you hope for.

Ann

[petalnumber2 in reply to gazelleLOL]

Thank you for your kind words Ann, I really do appreciate them. I hope you are painfree or as best you can be right now. June x

[allanah]

Great news June, at last!!! Well these biological drugs how lucky are we that they are invented. My poor Dad had nothing but Panadol and aspirin and he suffered so much with pain and deformities. So I was so glad when I passed and got them. Yeah it's nerve racking when they give you a list of things that can go wrong! I got a full page of them when having my spinal op, I was terrified, but all went well ad the relief of being able to use,y arms and no pins and needles or nerve pain is priceless!!!

So hang on I there, they will do the tests and often then when u r passed you have to wait on funding! Then they will teach you about how to use and inject the drug or if u start on infusions what the procedure is. So be patient but keep in touch with the department so it takes the shortest time.

Out of interest was the new trial the one of Humira V Roacterma? I had this debate on Thursday with my Rheumy but he said for me to try the Humira first and if no help to go onto Roacterma, so will do what the experts suggest, he's growing on me cos I didn't like him first time, but he now gets me asking cheeky questions all the time!!!!!

So excellent just think this could be "the one" !!!! Hugs Axxx

[petalnumber2]

Hello Allanah,

We are certainly much better off than your poor dad, I can't begin to imagine what awful pain he must have endured. I've not heard of Roacterma, but I've not begun to research yet. The drug trial mentioned by the clinical nurse yesterday is Tocilizumab. she said it has been in excistance for about 10yrs, which is not long by all accounts. Apparently, not enough is known about it yet and they are trying to find out if it is suitable for young people with juvenile idiopathic arthritis. I'd love to do a bit to help young people but I'm far from juvenile!!

It's nice to know that you are already on anti-tnf's and doing well by the sounds of it. I won't ask any questions of course. I hope that I will pass O.K for this treatment, we shall see.

Lots of hugs for you, June xxx

[Hidden in reply to petalnumber2]

Hi June

Just a quick one, RoActemra is the brand name for tocilizumab (so they are in fact the same drug!) It sounds as if you have plenty of information available to you but if you haven't taken a look at our 'Biologics' booklet that might also be useful: nras.org.uk/help_for_you/pu...

I wish you luck with your new treatment, it sounds as if you've got a good rheumy team around you.

Kind regards

Sarah Kate

NRAS

[petalnumber2 in reply to Hidden]

Hello Sarah Kate,

Thank you very much for your for your message. I followed the link and have read the whole booklet on 'Biolgics' and it has helped me better understand what is going when there is inflamation and how biologics work. I found answers to many questions I've had about my own treatment path up to now.

Also, the final pages about the work that is going on now, and what is hoped for in terms of future treatment is very interesting.

I do have some questions to ask about one or two of the drugs that have been suggested to me, so I'll phone the NRAS helpline or my clinical nurse at some point.

Thank you again and best wishes, June x