Humira response

debram

Well nearly 12 weeks into Humira Anti TNF for Psa and no improvement.
I go to clinic next week so ill see whats next.
I thought I had accepted this disease but having had one of my worst ever weekends I feel Im back to square one.
Being Sunday I tried to do "normal" sunday things. Got the dibber on-no chopping ved nowdays so everything is roasted with the meat.Hemp oil it is. Hubby liftibg it into oven. I thought today Im great so Ill bake some fairy cakes. By the time hubby got them out of the oven I wasso exhausted. I didnt have the strength to squeeze the piping bag that contained VERY soft icing!
My hands swelled up like someone shoved water filled balloons inside with red hot water-on fire & unable to bend them.

I sat down -or rather fell on the sofa-my feet and hip on fire. No energy. 4pm bed it is.
Now 8 pm x factor lets try some tea. Mouth so dry I couldnt swallow so use water to get it down. Bad move-up it comes like a pilot from his ejector swat. Through my nose mouth and eyes. With a distinct smell of vomit & coughing my heart up I gave up. Bed again.

Silly me-I felt good-this is all in my head (atos think I can work) I can take in the eorld.
Sadly back to reality

barbara12

Oh debram..I can feel your pain...Im so sorry the meds are not working has they should.
But you haven't given in to it..that is the key.. maybe hubby has to help, but a little pushing is good now and then....I hope today you can rest ready for another day...some very gentle hugs..(((()))xx

debram

Thanks Barabara I really need those hugs today!

I feel low & alone. I felt like a burdon yesterday. I adked for help -a cuppa but my hubby was too tired to. Hes got Wolf Parkinson White heart problem & musnt have stress so I didnt want to shout at him which is what I felt! I wanted to do-say "you dont know the meaning of pain & tiredness! Go on YOU push yoyrself!" aaaarg. How horrible was I. Bless him & love him to bits really!

Im also waiting for an e mail telling me I failed my latest oc health assessment to apply for early retirement.
Just great that 20 year of working for a company is now decided in a 40 min interview where I could make a fist, turn my head to the side & walk 8 steps wirh my stick! . last yr independent gp found me permanent unfit but oc health disafreed. I think they chose this Gp who has a background of working for DWP. I think she made her mind up before I sat down. She said unfit now and for next few months but then left it at tgat. Tgis means not unfit permanent= dismissal. Maybe she should have seen me yesterday.
My rheumi said I should retire as does my phsychologist & Go but they wont take this into account.
I am going to fight them even if I have to sell my house to pay a solicitor!

(Apologies for bad typing & spelling but my fingers not my brain isnt working! hobest!)

lulubell69

Oh dear, I really feel for you. I think many of us have been in your position and it really brings it home how serious this condition can be. All meds are trial and error and what works for one doesn't work for another. I'm afraid it can take many months to find a suitable med and during this time many people become very depressed, I know I have.
Unless you live with arthritis I don't think anyone can understand the physical pain and emotional turmoil it can bring with it.
Take care and I hope you feel a little better soon.
Les

purpleowl

Hi Debram,

I'm so sorry to hear the awful time that you are having at the moment, it must be very frustrating and depressing what with the work thing on top of everything else :shock:

I know nothing about Psa but it sounds an absolute nightmare, sending you some good vibes and hoping things will improve for you soon.

Keep fighting for your retirement, you deserve it!!

Take care,

Trish xx

Boomer13

Well, this PsA is a tricky, horrible disease! I so can relate to your description, I have it to. Sending hugs and support, sorry you are having such a rough time at the moment.

Anna

stickywicket

I'm sorry the humira isn't working. No wonder you're so stressed out. I guess it's a vicious circle. I don't know if you're currently taking anything for the stress but, if not, it might be worth asking the GP for a short course of something. I hope stuff gets easier soon. Try not to do too much when it eases off a little though.

merri

Im so sorry that you're going through such a difficult time right now, no wonder you're stressed /hugs

Kittkat

Sorry you are feeling so bad at the moment really hope they get something sorted for you soon! x

stickywicket

How are things today, Debram? I'm thinking of you.

dibdab

Hi Debram,

I really hope that today is a little better for you.
Big hugs
(((((((((((((((((((((((((((((((( ))))))))))))))))))))))))))))))))

Deb x

dreamdaisy

When I began humira it reduced my inflammatory levels within two weeks to very low levels. There they remain and that is the proof I have that it is working. Do I feel any benefit? No. My mobility improves a little for a few days and that's it. I now realise that this is because I have aquired OA (plus fibro) so of course the humira and meth won't touch those, they are different in essence to the PsA.

I am so sorry that you are having such a rough time - I understand the need to shout at those around you due to pain and frustration but this is not their fault and neither is it yours. This malarkey can drive us to the brink - it's learning to step back which can be so hard. I hope you are feeling at least a little better. DD

debram

Thanks for replies Guys-hope you all had a pain free Xmas and good luck in 2014!

I had a letter from Oc health saying they are now writing to my consultant.
Apparently the independent assessor found me unfit-that's 2 independent that find me unfit so whilst I want them to write to my rheumi- I can't help but wonder if they're trying hard to find someone who finds me fit or hoping I give up!

Well I'm crossing my fingers-or rather -if I could I would!

As for Humira-the company supplying it on behalf of the hospital haven't delivered it for 6 weeks! Despite numerous e mails from hospital and calls that just go to answephpone!

I went to my GP today as the Hospital said he would give me an injection whilst it's being sorted but I had bloods done -he said he has other patients on humira and they've not had issues. Mmmh didn't believe me?

Got home to a letter from the company apologising for the delays many patients had -ill take that up and shove it up his nose! Lol

My rheumi did say I'm not responding and will change to another biological drug so just waiting now.

I've had x rays which confirm arthritis in spine and hips so getting answers or should I say confirmation of what I already knew! It has led to physio and they're great-doing small exercises to help core muscles and explained that the pain is also nerve damage.

Despite the pain and tiredness I'm feeling, I'll keep the smile I put on for everyone else! Keep on fighting has to be my 2014 motto!!

Xx Debs xx

stickywicket

I hope the humira, or whatever comes next, does help. Good to know that the physio is doing. Thanks for the update. Onwards and upwards?