Advice on Anti TNF please....

[Mel_]

When I saw my consultant last week he said that i should start reading up on Anti TNF treatments as this is something he wants to discuss with my at my next appointment, November. He said that he is still not happy with my blood results (even though I've been feeling semi normal due to MTX) and that he wants to look into alternative treatments for me. I've ordered the leaflet from NRAS but I've also been reading up on the internet and now I'm freaking out! I know I should be really grateful that I am being considered (and I am promise) but there seems to be a lot of risk involved. There seems to be mention on here from time to time about Anti TNF treatments only working for a period of time and I don't want to exhaust my medical treatments for later on in life if needed. I've already put on half a stone on mtx (all around my tummy) and as I can't do sit ups any more I don't want to put on any more weight, I'm not worried about image more about risks of extra weight. Any advice please on choices of Anti TNF treatments would be most welcome. Thank you. Mel

[LavendarLady]

Hi Mel. I have been on anti tnf for nearly 3 years, first on Humira for a year but taken off that as came out in a rash on my legs. Consultant not sure if connected with the RA but changed me to Enbrel, another anti tnf instead. I have had no problems with that at all. It doesn't seem to cause weight gain as such. My weight gain has been down to steroids to bring the pain and inflammation under control from time to time. I understand that if one tnf does not work so well over a period of time, you can be switched to another one. The Humira is an injection every 2 weeks, the Enbrel every week and the other one I was told about means going to the hospital to have it dripped in over 2 hours which is done twice in 2 weeks and can last anything up to 3 years without needing more. Some of the bloggers are on that one and results seems to be pretty good varying from 9 months before having another treatment to over 2 years. There are several anti tnfs not just the 3 I have mentioned and new variations are being found all the time. So don't lose hope - speak to your consultant about the various options as he is the best one to advise you about it. In combination with MTX it works really well.

Good Luck. LavendarLady xx

[Mel_ in reply to LavendarLady]

Thanks for your reply. This may sound really vain but it's the weight gain that worries me, I currently look about 6 months pregnant due to half a stone weight gain which all seems to have gone on my tummy; but as you say this may well be steroids. The very thought of having to inject myself is a bit scary but I'm sure my other half will be happy to oblige and do it for me! x

[Gina_K]

Hi There,

I am on Humira 2 years , with MTX & plaquinil the disease is under control for moment, I would'nt wait until you are older as the damage to your joints will be done by then, all I can say is I have had no problems, other than the damage that was done prior to anti tnf. The weight gain I had, was due to steroids and inactivity.It is an incurable disease and you will always have it, however control is more possible with anti tnfs, I say go for it, worry about it not working when it does'nt.

Ps. you are very well monitored when on anti tnf with a series of bloods every month, so maybe that will allay your fears a bit?

xx Gina.

[Mel_ in reply to Gina_K]

Thanks Gina. Blood tests are one area where my local hospital are very good so as you say if anything started to go wrong my bloods would show that. I know it makes sense to think about the 'now' and worry about the later when I need to but I've always liked to be in control and I surpose this is one area that I can't be. x

[lulul]

I was in your position a month ago and shared your concerns . i was worried about all the long term side effects esp MS etc but now I have had the first injection I just concentrate on the positive. I would rather have ten years of good active life than live like this any longer regardless of what happens in the future. I have joint damage already and don't want anymore .

Take a big breath and jump honey! I am sure it will be worth it. I have heard so many fantastic stories of people on these drugs. Good luck x

[Mel_ in reply to lulul]

Thank you, yes I'm sure I will take the jump and I'm sure nearer the time I'll have losts more questions!

[Hidden]

I would take the opportunity, but explain your fears.. dont get bogged down with the scary and misinformation that can be on the internet.. speak to the people on here that have anti tnf.. yes in some people they can sometimes stop working.. but not in everyone, and there are several different treatments available.

[Hidden]

Hi Mel. It is your choice remember whether or not you progress onto Anti-tnf treatments. I know the consultant generally knows best but if you are feeling ok at the moment you can always wait a while.

Please try not to research to much on the internet as there are some very frightening information on there and if you beleive everything you read about all the drugs you would never take anything. The best place for information is the NRAS, there are lots of leaflets to help you decide. Also on here, HU, this is the best place for straight forward advice as lots of people are on Anti-tnf so you get first hand advice.

I myself have been on Infliximab, which worked well but I suddenly developed a reaction and the treatment had to be stopped. I then went onto Humira, that also worked well for about two years but stopped working. The same happened with Enbrel. I was just unlucky for the treatment to stop working after a few years but some have been on it for years and doing extremely well.

I am now on Rituximab, and doing well on that I'm due for my fourth cycle of treatment soon.

Don't worry about exhausting treatments, at the end of the day it's quality of life you need especially with young children to look after.

In the end the decision is entirely yours and I'm sure you will make the right one for you.

Take care Mel

mand xx

[Mel_ in reply to Hidden]

so right Mand, I need to think about now so I can have some time being a proper mom. I've been fealling semi ok but I'm not sure if that's the steroid still in my system or the MTX. I can't carry on relying on the kenolog though as it's messing with my body, 1/2 stone extra weight and a four week period!!! Thank you for your reply. x

[Hidden]

Hi Mel

It's not so much that the drugs stop working but more to do with changing disease patterns. What has worked previously doesn't work any more. As time goes on our profiles change and something different is needed.

I had been on Infliximab for 12 months when it became less effective. I have had Enbrel for7/8 years and it has been fairly reliable. I'm thinking its now probably passed its best and I should be heading down a different route but holding fire as long as possible. Although there are many more biologic drugs, several work in the same way so that narrows down what's available. Like you, I don't want to unnecessarily use up possible future resources.

I would suggest that if you feel well on methotrexate and don't have undue inflammation or flares perhaps hold off for a while and see how things go. You would need to pass two DAS assessments to get approval anyway and that is perhaps unlikely if the RA is controlled at the moment.

Lyn

[Mel_ in reply to Hidden]

ok, I hadn't actually though about the fact that it's not the drugs not working but the RA changing, makes sense. May I ask (and sorry if I'm being a bit thick here) but who or what is DAS?

[Hidden in reply to Mel_]

DAS=Disease Activity Score. The following blog might help nras.healthunlocked.com/blo...

[Mel_ in reply to Hidden]

Thank you very much indeed Lyn. Have just had a read through and will save the link for later reference too. Really useful. Kind regards Mel

[Hidden in reply to Mel_]

Here's a link to an online DAS assessment; interactive so it's pretty good. You do need to know how to check for joint inflammation (ie by pressing at the side of the joint) but easy to use.

4s-dawn.com/DAS28/DAS28.html

[Mel_ in reply to Hidden]

Very detailed and easy to use, thank you. I notice that the spine is not included and that is one area that seems to be under attack at the moment. I'll show these to my husband later as I think it would be good to sit down and have a proper chat about this. Thank you so much for your help, so good to be able to ask rather than sit at home and worry about it. M x

[Hidden]

Hi Mel - I have not had to make this decision, but I think if I was in your position and having heard the stories of others on here, the best option is go for the best medicine you can. The chances of you running out of options are far lesser than the joint damage from not having "strong enough" medication.All drugs give you side effects. Mr Silagement has been shocked rigid about all the side effects from his blood pressure tablets. He hasn't had any of them, not to say people don't have these, but they are not all common.

I think Lulu has it spot on. Good luck

Julie xxx

[Hidden]

Hi Mel

its a personal decision. However something i learnt is that not everyone is suitable for anti tnf. MY consultant said that some people can be tipped into lupus from ant tnf treatment due to their anti body profile. Providing you are not at risk of that which Im sure you are not or he would not have suggested it ! alot of people seem to opt for enbrel because it comes out of the body quickly if you have problems with your blood or become sick whilst on it. As I say though it is such an individual choice and we can never know your individual clinical situation. Good luck

fiona