Humira failing - RANT!!!

annic4363

Hi there

I have been to see the Rheumy nurse this morning and am not terribly surprised to hear that Humira is not working as well as it should. This is showing in my knees and ankles particularly as I inject on a Monday and the Thursday before I am due I can barely walk. Blood results are bearing this out.

Now I am only 46 so have got a lot of good working years ahead of me. I am therefore FURIOUS to discover that my PCT's likely reaction to this will be 'tough'. It seems that after all the bally-hoo last year NIACE have withdrawn their advice about only allowing us to try one Anti-TNF and have effectively moved the policy making to the PCT's.

The infuriating thing is that it is now better for me to have a drug costing thousands of pounds that isn't really working properly but is working some of the time. Rather than letting me try another one which might prevent the now inevitable hip and knee replacements.

I mean what kind of logic do these idiots apply????

Is it only me or have other had similar problems?

Sorry for the rant but with everything else I have going on this REALLY is the last straw

Chat soon

Annie
x
xx
xxx

shelleymogui

annic4363 wrote:

Hi there

I have been to see the Rheumy nurse this morning and am not terribly surprised to hear that Humira is not working as well as it should. This is showing in my knees and ankles particularly as I inject on a Monday and the Thursday before I am due I can barely walk. Blood results are bearing this out.

Now I am only 46 so have got a lot of good working years ahead of me. I am therefore FURIOUS to discover that my PCT's likely reaction to this will be 'tough'. It seems that after all the bally-hoo last year NIACE have withdrawn their advice about only allowing us to try one Anti-TNF and have effectively moved the policy making to the PCT's.

The infuriating thing is that it is now better for me to have a drug costing thousands of pounds that isn't really working properly but is working some of the time. Rather than letting me try another one which might prevent the now inevitable hip and knee replacements.

I mean what kind of logic do these idiots apply????

Is it only me or have other had similar problems?

Sorry for the rant but with everything else I have going on this REALLY is the last straw

Chat soon

Annie
x
xx
xxx

Hi Annie,

Sorry that I cant help or know what you're going through but I read your post and just wanted to say im sorry that you are in this infuriating situation and hope you get some answers for it.

I hope your pain eases soon and keep us posted.

Shelley

scattered

Hi Annie,

I'm so sorry to hear of your problems. I'm in a similar position. I was doing really well until about 2 months ago when I had a huge flare up in my feet, ankles and knees. I had a huge shot of steroids which worked for a week and now I'm swollen and in pain again, with the flare moving to my hands and elbows! Not even my Humira shot is hitting it.

Do you take anything else? I also take hydroxychloroquine and azathioprine with the Humira. Humira on it's own isn't enough for me. I'm also on a low dose of prednisolone daily. Is it worth asking your rheumy nurse if they can add anything to the Humira. I got side-effects from MXT and leflunomide but the two DMARDs I'm on now have no side-effects for me. Makes a change! I have also been on sulphasalasine to no effect, but it might be worth considering.

I suspect I'm going to be told to add something else to my drug equation, start taking the Humira weekly or that I should be on another Anti-TNF. I know my rheumatology team will fight for me to be on whatever medication they deem necessary, so maybe it's worth you having a long talk with your RD and nurse.

I hope things get better for you soon.

northumbrian

Hi Annie sorry to hear you are having such problems. I saw my rheumy on Monday and told him the Humira was not working as well as it was. I have been on it for 20 months. He immediately put me on weekly injections and if that does not work after 8 weeks he will switch me straight to something else, Enbrel I think. This is in the Highlands of Scotland. I agree it is so short sighted not to give the best treatment to gain remission and to ultimately save money, not to mention, quality of life and contributing to society with taxes.
Best wishes
TP

harmony

Hi There,
I have been on Humira for 10 weeks now (5 injections) plus Methx and diclofenic and 12.5mg Prednisolone, but I'm finding it more difficult to get up in the mornings! No I'm not lazy, and I don't stay up too late.
The Humira helps for the first few days, I feel like I used to, loads of energy, and then bang back down to the bottom again. Although I have the energy I don’t always have the mobility which is very frustrating.
Lucky me no rash after the injection just bad bruising which in the scheme of things is nothing but perhaps proves I'm heavy handed with the jab
But this constant feeling of tiredness is driving me nuts. Anyway I see the lovely nurses at the end of the month maybe I can get an answer.
Also I accidently banged my bad leg 10 days ago and have had more problems walking ever since. I am now taking 6 tabs of 30/500 co-proxamol to just get through the day on top of everything else. Just dropped that in for sympathy

kazpaz

Hi

Just thought I might reply to this post as I am in the same position.

I have been on humira since May and have always had the problem that I am great for one week and then it wears off. I have been in this yo yo world since then.

My rheumy team and GP are now pushing for me to have it weekly and have gone back to our local PCT for additional funding. My consultant has been successful on this issue before. Apparently it is accepted that some people just need it weekly. It has been an uphill struggle and most of the push came initially from the GP, but hopefully I will get it weekly soon.

Just don't give up. It seems that many things and aspects of care are a fight, but if you are sure it would help, fight for it. I am also on mtx and sulfasalazine but nothing else has had much of an impact as humira has and enbrel was a complete failure.

Good luck.

Kaz

harmony

kazpaz wrote:

Hi

Just thought I might reply to this post as I am in the same position.

I have been on humira since May and have always had the problem that I am great for one week and then it wears off. I have been in this yo yo world since then.

My rheumy team and GP are now pushing for me to have it weekly and have gone back to our local PCT for additional funding. My consultant has been successful on this issue before. Apparently it is accepted that some people just need it weekly. It has been an uphill struggle and most of the push came initially from the GP, but hopefully I will get it weekly soon.

Kaz

Hi Kaz
Just wondered what dosage you are on now and what they will put you on?
Pammi

kazpaz

Hi Pammi

I am currently on 40mg fortnightly, but hopefully will go to 40mg weekly.

Kaz