Anti-TNF Assessment Today - Question (27 with RA)

lizziebums

Hi all I've only just found this dicussion forum and was wondering if anyone could help me? I have my anti-tnf assessment today after being told last week my disease activity score is 6.25. I was given a choice of 3 anti-tnf's one which I have ruled out as its given by a drip so not got the time to do it, one is fortnightly and one weekly - is anyone on these? anything I should know about what they are like in reality rather than what you can read? I am going on it because Methotrexate isn't working, also on Sulfalazine, Steroids, Diclofenic and Cocodomal when really bad. Apparently carrying on with them all inc methotrexate as well as which ever anti-tnf as my arthritis appears to be very stubborn. Thanks in advance x

page35

Hi Lizziebums (great name )
i dont know about the drugs but just wanted to wish you luck with it and to welcome you to the forum.
sure someone will be on to advise you soon

ichabod6

I was on the same cocktail as you plus meloxicam and folic acid.
In June I went on humira, self injected once a fortnight.
I am now on humira, a weekly dose of methotrexate and a
daily swallow of folic,
Over a two week period I take 96 pills less than before against
one almost painless injection.
I still get swollen joints but my movements are tons freer and
I am very happy. I hope it works for you.

lizziebums

Well it went as well as could be expected - I have been approved just got to wait up to 8 weeks to start due to paperwork etc I am feeling really fed up - its the first time the have discribed it as aggressive and they didn't think the methotrexate would work - so feel bit like why did I have to go through it as although helped my arthritis a tiny bit I got so many side affects. But then when I heard how much the anti-tnf costs I can see why they have to explore everything first. My biggest worry / upset is the affects on fertility / getting pregnant as I am only young and may want more children and although lucky to have one before I had my arthritis flared up feel like a lot of my choices being taken away. Especially when I was hoping to go to Thailand this year but now been told can't have the vacines etc unless I stop but then I'll be in pain. Its frustrating as there are a lot of catch 22's situations with this disease and my personal circumstances, like they keep saying I need to rest and pace myself but its difficult when I have a toddler and need to work full time as a single parent. I have tried to get DLA but was declined as I presume because I don't get any help except from my mum as I can't afford it and pride, also as its alot better than was with the cocktail of drugs I am on, I presume they won't help especially as I moved into a flat to help as I couldn't get upstairs in my house - therefore that problem not there now. Anyway sorry to ramble on but looking on positive I caught the disease early enough that no damage to joints has happened yet and I am better than was a year ago when I couldn't get out bed without an hour spare or even lift duvet! I suppose you just have to weigh up the risks and decide whats more important x

janie68

hI

Which one are you opting for? I started enbrel in October and I am still waiting for it to kick in in its miraculous way!

I sort of set myself up really, read where people leap out of bed etc the next day and then expected it to happen to me!

Oh well, hope that it works for you, I think it has done something but not what i hoped for as I still have bad days where I can hardly walk at all but heres me rambling on

Good luck, you could go elsewhere on hols, I know that it is little comfort to thailand, but I go to Jamaica and love it!!

Take care and have a good christmas!

Janie

gickygawky

Hi Lizzie,

I have been on Enbrel for a year now and it has worked wonders. I use it in combination with Mtx and things have improved greatly.I completely understand what you are saying about how this disease interferes with our personal lives so much. It's frustrating to say the least.
I too was worried about the tnf treament and future pregnancies. From what my rheumy has said and what I have read the problem is with our bodies holding a pregnancy, however I think I saw somewhere on this forum that someone was taking it up until the last few months of pregnancy so perhaps advice has changed.
My rheumy, my husband and I have planned to get me as well as possible on Enbrel and Mtx then go onto pregnancy safe drugs and try our luck with the intention of starting back on tnf and Mtx asap thereafter. Time will tell I suppose!
It's great to hear you have been accepted for this treatment, hopefully getting you on the right meds now will mean less problems to worry about down the track.
I hope you are feeling okay at the moment and looking forward to a lovely Christmas with your little one!

Arna x

lizziebums wrote:

Well it went as well as could be expected - I have been approved just got to wait up to 8 weeks to start due to paperwork etc I am feeling really fed up - its the first time the have discribed it as aggressive and they didn't think the methotrexate would work - so feel bit like why did I have to go through it as although helped my arthritis a tiny bit I got so many side affects. But then when I heard how much the anti-tnf costs I can see why they have to explore everything first. My biggest worry / upset is the affects on fertility / getting pregnant as I am only young and may want more children and although lucky to have one before I had my arthritis flared up feel like a lot of my choices being taken away. Especially when I was hoping to go to Thailand this year but now been told can't have the vacines etc unless I stop but then I'll be in pain. Its frustrating as there are a lot of catch 22's situations with this disease and my personal circumstances, like they keep saying I need to rest and pace myself but its difficult when I have a toddler and need to work full time as a single parent. I have tried to get DLA but was declined as I presume because I don't get any help except from my mum as I can't afford it and pride, also as its alot better than was with the cocktail of drugs I am on, I presume they won't help especially as I moved into a flat to help as I couldn't get upstairs in my house - therefore that problem not there now. Anyway sorry to ramble on but looking on positive I caught the disease early enough that no damage to joints has happened yet and I am better than was a year ago when I couldn't get out bed without an hour spare or even lift duvet! I suppose you just have to weigh up the risks and decide whats more important x

ifeelninety

I am just waiting for my screening app, Rheumy referred me 6 weeks ago and heard nothing since - will need to cahse up after the holidays - I am not sure what I will be offered although he did mention Humira at my app.

With regards to your claim to DLA - did you get someone to help you fill in the forms? If not Get an app with your local Welfare Rights Officer - they are usually based at the Council Offices, They have helped me both times with my forms and I have been successful on both occasions. It is hard word with young children - I was lucky ( :roll: )in that my 2 were 4 and 7 when my RA arrived, but at least I wasnt lifting them in and out of car seats and buggys at that stage - Couldnt manage to do that now!!

Good Luck with whatever you decide. And HAve a LOvely Christmas with your little one.

lizziebums

I am going to be starting Enbrel but apparently it won't be ready for me to start for 8-10 weeks something to do with paperwork. I think thats right about pregnancy thing and I am kinda getting my head round it now - luckily I have my little girl already (even though they said it was probably my pregnancy that triggered it as started just after gave birth - but that combined with getting divorced 6 weeks after probably didn't help either!) I'm now at the mindset that what will be will be with that as who knows what will happen and I kind of want to concentrate on getting myself as well as can so doesn't affect my daughter any more than has already or has to in future. I'm fed up of having to say to my 2 year old I can't pick her up as in too much pain or too tired to do alot!

As for the DLA I think because in my mind I don't see it as disabling as others (for me anyway) I don't want to take money from those in wheelchairs or who need carers (although I know lots of people who don't think like that plus it that could happen to me but at moment its not I feel a bit of a cheek asking for it when there are people worse off than me). I did application alone so may appeal it and seek advice.

wallysatt

Hi Lizzie,

I'm 28 and have had all 3 Anti-TNF drugs. The first one I went on was infliximab (the drip) and it was by far the best for me. I started on that when I was 20 and since then have been through the others. I'm now on rituximab which is ok but it's not great but I'm going on abatercept after christmas so we'll see how that one goes.

As for the DLA thing keep appealing. If you are bad enough to be on Anti-TNF then you should be receiving DLA.

Sally.

wallysatt

Sorry to post again.

Why were you told you couldn't have the vaccines?

I'm going to Malaysia in 3 weeks and I've had all mine.

Oh yeah and the stairs thing...You must put on your form that you have had to move because you couldn't do the stairs.

lizziebums

I was told as I am still on methotrexate I couldn't go anywhere that required live vacines things like yellow fever unless I didn't take my tablets/injections but then that would mean I'd be in pain all holiday ?!?!? I am going to see my local Dial centre see if they can help with my application or CAB? x

wallysatt

I used to be on Methotrexate and now I'm on a drug called Leflunamide which is from the same family.

I had to have a special injection which was ‘dead’ for polio when I left school but other than that I’ve never had a problem. My Mum and Dad go to Thailand a lot, in fact they are going again whilst I’m in Malaysia and I think they’ve only had the same jabs as me which was hep a or b (I can’t remember) and typhoid, you have to make sure you’re up to date with your tetanus.

Did you go to a travel clinic? At my Dr’s have a thing called a travel clinic and they check the parts of the country you’re going and tell you what you need to have, they also know whether the drug is ‘live’ or ‘dead’.

I’m sorry my post is so long, I just don’t want you to miss out on a good holiday!! The heat might do you the world of good.

margaretschild

lizziebums wrote:

I was told as I am still on methotrexate I couldn't go anywhere that required live vacines things like yellow fever unless I didn't take my tablets/injections but then that would mean I'd be in pain all holiday ?!?!? I am going to see my local Dial centre see if they can help with my application or CAB? x

Hi Lizzie,

I was on Methatrexate for about 4 years then Sulpha whatsit, anyway due to my stubborness I came off all meds until I could not stand the pain, I then went on steroid injections for as long as I can have them.

I began anti TNF 3 weeks ago it is the most wonderful drug I have ever encountered, although I do not have the ability to have more children due to womb probs not arthritis. So all I am taking is Enbrel.

I was told that I need to see my consultant if I was going abroard where I would need live vacines. As I have no desire to go into the Amazon Jungle this has not bothered me.

All the swelling has gone down, I am in no pain what so ever. But I am really tired really quickly, and need to rest often. this is the only side effect I have.

I hope it works for you

Linda

ifeelninety

I began anti TNF 3 weeks ago it is the most wonderful drug I have ever encountered, although I do not have the ability to have more children due to womb probs not arthritis. So all I am taking is Enbrel.

I
All the swelling has gone down, I am in no pain what so ever. But I am really tired really quickly, and need to rest often. this is the only side effect I have.


Linda[/quote]

How long did it take you to go through all the referrals/paperwork etc before you actually started taking the anti tnf? I was refferred about 7 weeks ago now but not heard anything since.

margaretschild

ifeelninety wrote:

I began anti TNF 3 weeks ago it is the most wonderful drug I have ever encountered, although I do not have the ability to have more children due to womb probs not arthritis. So all I am taking is Enbrel.

I
All the swelling has gone down, I am in no pain what so ever. But I am really tired really quickly, and need to rest often. this is the only side effect I have.


Linda

How long did it take you to go through all the referrals/paperwork etc before you actually started taking the anti tnf? I was refferred about 7 weeks ago now but not heard anything since.[/quote]

Good Morning,

It took about 12 weeks for the initial appointment, after that the ball started to roll very quickly, in fact I felt out of control of the whole situation, so I slowed the pace down a bit. My consultant and rhumy nurse were both very understanding and I was allowed time to make my mind up. But I would not be without it now.

Hope this helps

Linda

lizziebums

I will definately look into it more - I never question really what they say at hospital but might be worth checking as I think any holiday would do me good - I am in so much pain again at moment because I got a chest infection had to have antibiotics so had to stop my meth - typical!!!

I am hoping this new drug helps. I have found my old DLA claim form so looking at re-applying? Does anyone know where I can get cheap hand rails for my bathroom as have to pull myself up using taps lol! x

ifeelninety

lizziebums wrote:

I will definately look into it more - I never question really what they say at hospital but might be worth checking as I think any holiday would do me good - I am in so much pain again at moment because I got a chest infection had to have antibiotics so had to stop my meth - typical!!!

I am hoping this new drug helps. I have found my old DLA claim form so looking at re-applying? Does anyone know where I can get cheap hand rails for my bathroom as have to pull myself up using taps lol! x

I would phone OT at yourt local hospital - usually Rehabilitation Dept, and ask for a Assessment for Daily Living ( my rheumy referred me for it when I was first dx) but I believe OT is one of the only NHS services that you can self refer your self for. Mine were great and came out to my house to see what was needed - the fitted an extra handrail to my stairs, and gave me an electric bath lift. They also organised a few other things for me - so definatley worth contacting them first. ( I used to hold on to the taps to get in the fall the rest of the way - poor hubby had to haul me out)

Good Luck

wallysatt

lizziebums wrote:

I will definately look into it more - I never question really what they say at hospital but might be worth checking as I think any holiday would do me good - I am in so much pain again at moment because I got a chest infection had to have antibiotics so had to stop my meth - typical!!!

I am hoping this new drug helps. I have found my old DLA claim form so looking at re-applying? Does anyone know where I can get cheap hand rails for my bathroom as have to pull myself up using taps lol! x

You must re-apply. Don't let them get away with it. If you can get some help it would probably be easier for you. My mum helps me a lot; she's got more energy to fight than I have, she also writes out my answers on the form as I can’t write very well because my hands are too sore. I’ve also had help from the CAB, they sent a social worker to my house and she helped us with what to say and how to say it.

I don’t remember stopping my methotrexate when I’ve taken anti-biotics, so maybe it would be worth having a second opinion. A holiday would probably do you good. Only 2 weeks to go till mine, I’m getting worried now.

Hope the chest clears up soon.