Anti TNF Sceening ?

mmarshall

Hi everyone
I posted a few weeks ago to say that I was to go for a anti-tnf screening.
My appointment was yesterday and there was a few things that came up that I am worried about.
Firstly it is my Rhuemy consultant that said that I need to go onto the biological drugs as my current drugs are not working properly.
I have been struggling for a good few months mainly my feet are the problem.
When the nurse checked my joints ( shoulders, knees and hands) yesterday they were not as swollen as normal and she commented on this but I think this is due to having a steriod injection in my bum on 24/8.
I informated the nurse of this and she said that they will see how they are when I go back in 3 weeks time.
I told her that it is mainly my feet that cause me problems as sometimes I can hardly walk.
I got the bloods done for the TB screening and she asked me various questions.
She then went through all the side effects of the drugs which are very scarry to hear.
Then said that my recent chest xray was okay but did show inflamation on my lung, I know at this point I should have said what does this mean but she then went on to speak about my eyes as when I get a flare up I get ulcers in my eyes so I went on to answer her questions about this.
She then gave me a box containing info on Enbrel and told me to look through this and watch the DVDs as my consultant wanted me to start on Enbrel.
She also gave me forms to fill in and said that I should bring them back in 3 weeks along with any questions that I have.
At the end of the appointment she said that she would need to speak to my consultant as I had mentioned to her that my sister had just been diagnosed with MS and she said that could cause a problem with me going on the biological drugs but then never said anything else other than right you can go.
I feel really stupid not asking more questions but I just want to ask your advice if any of you have family with MS and how does that affect your treatment.
Also inflamation in your lung have any of you had that and does it just go away.

Thanks

Mary

valval

hi not got this so just what have picked up from others and looking into things but some of the inflimation arthers can affect organs as well from what i have read and treatment should treat this as well but as for rest some one else will have to answer.
i also come out wishing i had asked this that and the other but it was probabully a shock and wiped your mind so do not worry just write a list or phone her if nessecery val

frogmorton

Hi mary

l too am wondering what having MS in the family might mean for your treatment.????

Mind Ms is thought to be maybe auto-immune too....is she on anti tnf as well??

How odd and yes l agree that the steroid jab likely made you look better than you actaully are.

They do that DAS score don't they? How many joints are affected.

Good luck with your reading matter and DVD veiwing.

Love

toni xx

lindalegs

Hi Mary,

I'll have to go for my assessment soon so I'm interested in what you've said.

I was told by my consultant that they won't put you on Biologics if you've had cancer in the last 5 years, melanoma in the last 10 years or if you have MS.

Maybe it would be wise to ring your Rheumy nurse or talk to your GP about your worries. The answer might also lie in the leaflets and information you've been given to read.

Hopefully someone will come along who can answer your questions.

Ankyspond

Hi,

As some know I am n Enbrel, cant comment on your case but I have never had any side effects and it's amazing. They have to tell you about the side effects but don't be too alarmed, it's about the quality of life here and now. Xx

mmarshall

Thanks for the replies.

I read the info I got about Enbrel and it does mention MS.
I did not think my sister having MS would affect my treatment but maybe because it is in the family it is risky to use this in case it brings on MS.

My older brother has Lupus but I am not sure what treatment he is on as we have not saw each other for a few years, but I know it took them years to diagnose him.

I go back to the hospital on the 25th Oct so I will go with loads of questions.

I don't know why I did not ask questions at the time, it is as if your mind shuts down with all the other infomation that was given.
I am angry at myself for not asking more.

Mary

dreamdaisy

Never, ever be angry with yourself about not asking questions, Mary. The doctors bombard us with info and expect us to know exactly what they are talking about simply because they do. :roll: Minds often go blank in appointments, I know mine does.

When I began the anti TNFs etc I was warned about the risk of side-effects. but as one is so carefully monitored I was never bothered about that. Everyone's circumstances are different however, and these meds are not to everyone's liking. I wish you well with whatever happens and/or whatever you decide. DD

mmarshall

Thanks again for the replies.

I will wait and see what they say on 25th Oct.

I am going to write all my questions down before I go so that I do not forgot to ask anything.

I trust my consultant on what he may decide to do on going forward and as DD said they do monitor you.

I know the drugs I am taking just now ( meth, sulpha & hydroxy) are not working as they should so we will wait and see what happens next.

I am really glad that I can come and ask questions on here as it makes you feel better.

I will post again after my next appointment and see what they say as it may help others in the same situation as me.

Thanks

Mary