What can I expect?

rebecca1

Hi...

I have been seeing a consultant every six months for about 2 years now. Have been taking Sulphasalazine, and Hydroxy most of that 2 years without problems, other than constipation. (sorry too much information)..lol
Have tried Methotrexate. Tablets and self injecting but had to stop because of the side effects.(sickness was worst)..even injecting didn't stop it.
My Arthritis has been getting worse so this last time my consultant suggested the time was right to explore Anti TNF's but didn't give me any time to ask about it. I have looked up the internet but had to stop because I was frightening myself..lol I'm such a wuss though to be fair I have other health problems (heart attack being one).
I have received a letter from a Rheumy nurse from a different hospital asking me to attend to explore funding for said TNF's.
She stressed it was just to see if I was suitable.
I would like to know from anyone who has been through it all what I can expect to happen at the appointment. The criteria for funding..how safe is it..etc..
Also if i'm accepted what happens next?
Thank you and I hope everyone is feeling as well as can be expected..
Rebecca.x

traluvie

Hi Rebecca,

Sorry I am unable to help with your question, maybe the helpline can offer you assistnace..
I just wanted to drop you a message and say that i'm thinking of you and that i hope you can get some reassurance..
Take care..

Tracy

dreamdaisy

Morning rebecca 1, it's nice to meet you. I am a veteran of the anti-TNFs procedure and treatment, and I have not had any problems with any of them really, apart from the fact that they haven't delivered on their promises. My first attempt was inlfiximab, which stoped working by the fourth dose, so I came off that. My second was enbrel, which I was on for a while without any noticeable difference to my PA, but then that tried to explode my liver, so I stopped that one. (I never once felt ill with that, it was the blood tests that showed the problem, I was fine.) Now I am on humira, together with injected meth, sulphasalzine and oral steroids. The humira is working inasmuch as my inflammatory markers have been in single figures since I began, which I know is a good thing, but I haven't ditched the crutches, haven't lost the pain, and still rely on the steroids to perk me up. Everyone reacts so differently to any of these drugs, no-one can say what will or will not work for you, it is a voyage of exploration that can take some time!

As for the possible side-effects, well, I haven't had any, no headaches, no extra tiredness, no nausea. They have to warn you about what could happen, but it's no guarantee that it will. These are powerful drugs and they do have a powerful effect on the body but if they work for you I suspect you won't be too bothered! I wish you well. DD

spacey

hello,
my case was submitted for funding my gastro consultant so i am afraid I bypassed that bit but was accepted for infliximab which though unfortunatley didnt help me or my colitis ( not for my arthritis) it did not cause me any problems and I had no side effects.

frogmorton

Hi Rebecca

l have not been there so far either, but am sure it will be an ideal oportunity for you to discuss the options available to you and your concerns about tnfs.

Good luck

Love

Toni xx

barbara12

Hi Rebecca
Sorry I cant help with your question, but I wish you luck with it all, and you no where we are when you need to talk or even rant.
Sending you loads of hugs to be going on with, ((((((((())))))
Love
Barbara x

julie47

Hi Rebecca
I am not on anti tnfs either but just wanted to pop in to say good luck with the appointment and hope that you and the rhummy nurse can decide what to do.
Take care
Juliepf x

salamander

Hi Rebecca, I am going through this process right now. You generally need to have two assessments at least one month apart. They will look at your blood results, feel the joints in your fingers to see if they are swollen or painful, ask about other joints and ask your opinion on quality of life. Then they tot it all up and you get what is called a DAS 28 score. You need to be over 5.1 to pass.

They will also check to see whether you have ever had TB and other illnesses. This is because some of them can reactivate TB. It's really a health check and nothing to worry about at all. My nurse told me that passing the DAS 28 score was only a guideline, though I gather some PCTs are stricter than others.

I hope it goes ok for you. I am waiting to start Cimzia and an told it can work in 1-2 weeks. We'll see!

rebecca1

Thank you so much for all your support everyone. I really appreciate it..xx
Salamander..thank you too for the advice on what to expect..
I will let you all know how it goes and again thanks.
Keep well everyone.
Rebecca.xx

tillytop

Hi Rebecca

My experience of the anti-tnf assessment was similar to Salamander's.

I have had two of the anti-tnf's. Infliximab was the first one and it worked absolutely brilliantly for me for about 5 years, until I had an allergic reaction and had to stop. Apart from a headache and feeling as if I had been run over by a steamroller for a few days afterwards I had no problems at all and would go back onto it again tomorrow if they'd let me! I then had Humira for about 3 years. That also worked for me but not so well as the Infliximab but it really didn't agree with me and I had to stop that last year.

Before I started on the anti-tnfs, I had the same problem with methotrexate as you did and, when the nausea did not improve with the injected meth, I was made to feel as if it was all in my head. However, I opted to try methotrexate again recently, rather than another anti-tnf and, to my surprise I have had no real problems with it at all. Minimal nausea and I am now on a higher dose than I could manage before. The only thing different this time is that I am not taking it in conjuntion with Sulphasalazine and Diclofenac so I have come to the conclusion that, for me, the problem was the combination of drugs rather than the meth itself. I just thought that might be helpful for you to know, in case your consultant thought it was worth a try if the meth was helping and if you didn't want to go for an anti-tnf at the moment.

Good luck with it all.

Love Tilly xxx

rebecca1

Hi everyone *waves*...

Thought i'd drop in and let you know how I fared in the assesment for TNF'S

It was a lot easier than I thought it would be (except for the blood tests) they had trouble finding veins..lol They went looking for blood in places I didn't think they would find any.. In the end it was beside my elbow!!!!
Anyway I had the TB xray and the joint exam and was told I would get a phone call in around two weeks.

She said it was going to be Cimzia which she said was popular in Scotland and had exciting results. she said it would be lifelong but also it was a new drug so didn't have the usual twenty year assessments which I found quite scary but she seemed to think it would be good for me...and once established would mean just a fortnightly injection.
So that is how it stands at the moment. I will cross my fingers and hope...

PS...i hope everyone is good.x