Dear All

I feel as if I need a new set of batteries. I have been on Humira for 12 weeks now and I can feel myself gradually declining. I previously failed on Enbrel. I have my three month review next Tuesday with my Rheumagologist and I am not sure what the next step will be. I am desperately trying to keep going in my full time job but I am finding it harder each day. I feel as if I am having the life slowly drained out of me. I am disappointed that I have now failed on the 2nd Anti-TNF as I was so hopeful in the beginning. I know there are other options that I can now try but sometimes I do get impatient waiting for an improved quality of life.

Jackie
xx

hi Jackie,

so sorry to hear how you are feeling ... i posted i'd lost my Va Va Voom so can sympathise,

i'm 4 months diagnosed and not under control yet, Methotrexate has just been upped so hoping it will do it's job soon.

i hope you get some help at your next appointment, i have no experience of other drugs at the moment ... please let us know what the Consultant says.

feel for you Jackie this is definately not an easy journey is it.

Suzanne x

Hi Jackie,
I can really relate to how you are feeling as I too failed on both Humira and Enbrel and I was so hopeful that they would be the answer. Also as you say its such a long wait each time to see if its worked and although you know yourself, by how you are feeling, its awful to have it confirmed at an appointment.
But please keep hoping, there are other options out there, I moved on to Rituximab and the first round of that wasn't very sucessful and I've just had a second round as apparently research has shown that it can work the second time, so I still have my fingers crossed. I know steroids arn't the answer and have their own problems, but at very low patches I've had the dosage upped and it has helped to get me through the depths of despair when I wondered if anything would ever work and my spirits have been raised by having a few good weeks.
I'm not in quite the same position as I'm at college part time rather than working full time, is there anyway you could have some sick leave to do a bit of recharging those batteries? I know at my worst I just couldn't have done a full time job.
Please don't give up hope there will, I am sure, be something out there that can help, and if you find it before I do please let me know.
With love and best wishes that your rheumy team can help .
Sheila

Hi Jackie

Sorry to hear that the Humira appears to not be working. It's very frustrating having reached the anti-tnf stage as you start to feel there isn't a lot left out there to try. At least on the Dmards there's plenty to choose from and the knowledge that Biologics are there if all else fails. I failed on Infliximab but Enbrel has worked well for me fortunately, although every now and then I think it's giving up on me and start to panic a little!

I don't know what your drug history has been but have you been offered or tried methotrexate with the biologic? The two in combination can work well for some people. Rituximab is sometimes offered when two anti-tnfs have failed so perhaps there are options available for you. Finding suitable treatments always seems so difficult.

It certainly sounds as though you could do to have a spell off work. Perhaps the fatigue is stopping the Humira from doing it's job properly? Bit like taking pain killers for a headache then banging your head against a brick wall Maybe well earned much needed rest is required!

Hope you get on well at your appointment. Do let us know how you are doing

Lyn x

Dear All

Thanks for all your kind replies. Yesterday was a very low day but feeling slightly better today even though had a very bad nights sleep.

I have been taking Methotrexate since I was diagnosed. I am on 17.5 mgs - cannot seem to push up to 20mgs as it makes me feel really sick and even more tired.

As for time off work. Sometimes I am my worst enemy. My company have been very kind to me and let me work from home two days a week and I do work the whole eight hours I should do when at home. I love my job and don't really want to go off sick if I can help it. As explained previously I am the only wage earner in our house as my Husband had to medically retire from work four years ago and is not well enough to work. I think what is worrying me at the back of my mind more than anything is what if I have to give up work one day if my health deteriorates even more? It sounds as if the chances of getting onto benefits is getting slimmer by the day and then we would have no income except a small pension. My Daughter is 14 and wants to be go to university so that she can be a teacher. If I am not working how are we going to pay for that? Needless to say it is just never ending questions about health and money. I am 47 so there is a long time to go before I can collect my pension.

Hopefully next Tuesday I will get some answers from my Consultant about where I can go from here. I am not a worrier by nature but sometimes I can have a blip.

Jackie
xx

Afternoon Jackie,

I understand how you feel as I am in similar positiion. The more we worry they more it
agrevates the RA. I am a worrier by nature and I find it very difficult not to.

Rich has placed an interesting reply under Work post . Worth having a look.

Keep posting

Rose x

Dear Jackie,

So sorry to hear you are struggling at the moment. There is nothing more frustrating, when you are going from one drug to another and nothing is helping.

I have been very poorly since May. Thought I might just have a short flare, that could be fixed with a depo. Had one, which helped a bit, then another in august, which made no difference. (Very high CRP and ESR, both over 100). I was then put forward for Humira by one consultant, who said, she would fast track me and I would be on it very soon.

Last week back in hospital with worse bloodtests. A new consultant has taken over. She told me, I am not ill enough for Humira, she is stopping my hydr... and putting me on sulphasalazine, which can take up to 3 months to have an effect.

Like you, Jackie, I feel very low,the tiredness and constant pain are making me very depressed. Every little job is an effort. I do try to pace myself. As I take my predniselone at night, I feel better in the morning and try and get some work done first thing. Comes the evening I am absolutely rubbish and I am ready for bed by 9 o`clock.

I do hope, you will soon feel better.

Merete

Hi Merete

Really sorry that you are having such a rough spell at the moment, it really is difficult to comprehend that your first consultant was fast tracking you for Humira then following even worse results another said you were not ill enough. The way your case is being handled doesn t seem acceptable at all to me, perhaps calling the helpline in the first instance for their advice might be worth pursuing.

Thinking of you Julia x

Merete

That is ridiculous that you have had your Humira withdrawn. My blood counts are no where near yours. I would ask for a second opinion. Surely if you have failed on the DMRAD's then you should be entitled to move onto a anti-tnf. I would speak to your GP as well and explain how ill you feel.

I hope you get something sorted soon.

Jackie
xx