Bit of advice

debsmartin

I've not been on for a while because I had been feeling very good I take mtx and leflunomide so have been out and about making the most of feeling good, last few weeks though the dreaded RA aches and pains have started to come back and I keep feeling very rough. My doctor thinks that my leflunomide is not working I am at the hospital next week so will have to see what he says. I have been on sulphazaline in the past but had probs with that so I was just trying to get a bit info before I went to see him. As you don't seem to get long in with the consultant. Just wondering what other people were on and if they thought they they worked and also if many people were on anti tnf. I see posts on it but not really sure what the difference is to normal meds or if it gets offered to many people.

Thanks

debs

c4thyg

Hi Deb,

I'm on the anti-TNF enbrel. It's not available to everyone as you have to have failed 4 other treatments first usually. That said, I had only failed 2 treatments and because many of the other treatments weren't suitable for me (for other medical reasons) I was recommended for anti-TNF.

I think the anti-TNFs are great. I felt so much better overnight. I started to grumble a few weeks ago about aches and pains setting in as the weather got colder but then I had to miss the injections for a week to take antibiotics and boy, didn't I feel the difference!! I had forgotten just how bad the pain was before!

It is certainly finding out if you are a candidate for anti-tnf. Some conditions mean that you can't take it anyway but at least you would know. I think you have to have 2 assessments one month apart as well for RA. I didn't need 2 as I have PsA but I'm sure others with RA will let you know.

Also, as with any drug there can be some pretty awful side effects. I was getting a 3-4 day migraine after every weekly injection for a while! I'm now changing my dosing regime to try and get around it because I'm not willing to give up on it yet. So yes, I like enbrel but it's not the easiest of drugs to get and there can be nasty side effects.

c4thyg

This reminds me, I need to inject!
See you later.

scattered

I've been on a load of med combos:
MTX;
Sulphasalazine;
Leflunomide and hydroxychloroquine;
Humira and hydroxy;
Humira, MTX and hydroxy.;
Humira, azathioprine and hydroxy.;
And my next is going to be Rituximab, azathioprine and hydroxy.

I think it's just a case of trying everything and seeing what works. I had my most success with Humira, azathioprine and hydroxy. That combo sent me into a 6-8 month remission. The leflunomide/hydroxy. combo worked great as far my RA was concerned but tore up my gut. HUmira has never been enough just on it's own, I've always had to take it with something to cover the days when it wears off.

Good luck.

janie68

Hi

I am on suplha, mtx, steriods and just started enbrel. You have to have 2 dsa score assessments and get 5.1 or higher to pass. I have not had any benefit yet from enbrel but then I have only just started. The only side effect I have had is tiredness and feeling so lethargic which I was warned about.

It depends on your pct as to funding as the anti-tnf are very expensive and the waiting time etc.

I have just done my 2 injections so am feeling sorry for myself, I hate it but I can lead a relatively normal life and work part-time so be it!

Good luck

Janie

joyful164

janie68 wrote:

Hi

I am on suplha, mtx, steriods and just started enbrel. You have to have 2 dsa score assessments and get 5.1 or higher to pass. I have not had any benefit yet from enbrel but then I have only just started. The only side effect I have had is tiredness and feeling so lethargic which I was warned about.

It depends on your pct as to funding as the anti-tnf are very expensive and the waiting time etc.

I have just done my 2 injections so am feeling sorry for myself, I hate it but I can lead a relatively normal life and work part-time so be it!

Good luck

Janie

Hello Janie.
It must be very hard for you at the moment this time of year is not good for any of us. As you work too, you need to take extra care. Are you able to take any vitamins. Perhaps check with you GP on this, but might help you if you can.
I hope you are able to get some rest at weekends too. Hope you don't have to wait too long for the funding to come through

All the best Joy

debsmartin

Hi all, thanks for all your replies it has given me something to think about before I go to hospital next week. I feel happier knowing abit of info before I see the doctor.

debs