hi Rose,

fatigue varies day to day with me depending how i sleep .. i have often posted i'm not the best of sleepers, if i have a fairly decent night then i'm not too bad, if not good then i can struggle the next day.

i keep everything crossed that i can for you Rose, it must be your time soon for hopefully Rituximab to work for you. i appreciate what a daily struggle it is for you and how this illness can drag you down.

thanks Doreen, i was wondering how long it took for the Humira to fully work for you? and anyone else on Humira. i was quite scared about going yesterday as i knew it was like D Day for me so was really pleased when my joints were checked to actually say that most of them didn't hurt.

i also had my yearly eye test this morning having been on Hydroxy a year now and my eyes are healthly, just need new Specs but hardly any different prescription, i quite enjoyed choosing them with all the trendy one's about. the Optician said you would normally get eye problems within the first 3 to 6 months of starting Hydroxy.

Suzanne x

thanks for the reply Doreen,

my bloods are stable since i posted after the first month when they halved downwards but i am told not to worry about this, i.e. they are not down to single figures.

they take the overall DAS Score and how you are feeling and i do feel a whole lot better than before, i can think back to around about May when i was crying in my Rheumy Nurse's room when i had the wait for Humira and i said to her mark me as a high score with pain etc. i am moving much more easily than i was ( apart from knee's which i said have Osteo in them ) but i can walk short distances.

i know we all take different times to see improvements or not and as i said they were pleased with my progress.

i agree with you that it might not be the "cure" but i take heart in the way i am feeling. and i am so pleased it's working for you.

Suzanne x

Hi Suzanne
So so pleased that things are going in the right direction for you! Sometimes its only by looking back you can see the progress youve made. Hope it continues gives us all hope! xxx

Thanks Suzanne, yeah in tomorrow bit nervous but fingers crossed, will let you know how it goes.

Love Ceri xx

i thought i'd post my 6 month update since starting Humira, might be of help to anyone just about to start it.

after the first month i felt a marked improvement in myself .. my general well being and my joints.

3 months in and my DAS had gone from 8.31 to 4.83, and i felt well. i don't have many swollen joints but my left and and wrist are my worse, and the middle finger joint has gone from double the size to normal.

i have continued to improve these past 3 months since 3 month check up and my CRP and ESA have crept down. but CRP isn't quite into single figures yet but i do feel well with no real pain or stiffness. so that's enough for me.

the worse pain i have is my knee's which both have Osteo in them for a good 6 years now ( need a wheelchair for distance )

well as i said i have been for my 6 month follow up today and saw a Registrar who was really pleased with my progress and my DAS Score is now 2.48, he said i am in clinical remission.

to say i feel pleased is an understatment, when i think back to how scared i was at starting out on the Humira, well on all of my drugs.

i take the Humira along with 10mg Methotrexate and Hydroxy.

hoping i continue as i feel now,

Suzanne x

Hi Suzanne

A long haul one way or another but you made it ... whooppeeee

That's great news and wonderful to hear such a positive report. Hoping you will continue to improve and the clinical remission will last a good while

Lyn x

Hi Suzanne,

It's great to hear how well you are doing on humira.
Long may it last!

Love Doreen xx

gosh it's been nearly two years since i put an update on here!

thought i would post how i am doing on Humira as i have read a couple of new posts about it. no need for replies really just for my benefit and anyone else maybe going on it.

well two years on it now and it's been my magic drug/potion .. so scared about it when i started and got fantastic support on here, from my Rheumy Nurse and my GP and Consultant.

my CRP/ESR levels are in single figures .. they can sometime's creep up slightly but i feel no different if they do, so i was told a good year back not to focus on the readings but more on the way i feel.

at my last Consultation in July i was told that i could wean myself of 2x200mg Hydroxycholorquine .. and will finish this by the middle of October. no problems since reducing the dose. so one drug down.

i still take 10mg Methotrexate, was up to 20mg at one point and it made me have awful sleep patterns ( not on the list of side affects ) and i am fine on the 10mg.

i don't take any painkillers or steroids ( never have ) and my main disability is from my knee's which have bad Osteo in them, but i manage OK, wheelchair for distance.

so anyone starting out on it i know it's scary but for me it was so worth it, and i know we are lucky being diagnosed now that 25 years back when the treatments were so limited. the main problem for me is fatigue .. but as i've posted many times on here i am not a great sleeper so i think that's half the problem.

i hope this helps anyone with questions/queries, please post if you need help.

Suzanne

P.S. on a personal note i miss you Rose, ( who started this post for me ) would love to see your name now and then and lot's of old name's no longer post now reading this back x

just thought i'd post an update for myself really,

not sure if anyone is about to start on Humira, or if anyone is interested for future reference.

had my 6 monthly check up this afternoon. on the last check up i was told to wean off Hydroxycholoroquine as Humira was doing the job it should, so three months on 1 x 200mg and then last 3 months none.

now i'm on 10mg Methotrexate and fortnightly injection of Humira, i have been on Humira two and a half years now.

very pleased with with me at the Hospital, so no changes, i am in clinical remission still .. take no pain killers at all.

so for next 6 month check up instead of seeing the Consultant i see my Rheumy Nurse for a general well being check up that everything else is functioning well, see if she think's i need a bone density scan, BP check, any questions or worries i have.

then the next 6 month check will be back to Consultant, of course i can phone anytime if i need too, i have a fantastic Rheumy Department, love my Rheumy Nurse who came out to see me as she knew i had an appointment, she is like a friend to me who gave me such good support when i was newly diagnosed, and so scared. and she also did my first Humira injection for me as she knew how wound up i was, and i went over to the Hospital to do the second one in front of her with my Hubby in two incase i couldn't manage the next time.

how blessed i feel to be looked after this way.

had a general chit chat with the Consultant ( not my normal one ) i know she can't give me any long term answers about the future, but i know i'm getting the best possible care.

wish is was the same for all of you here, as i know some of you struggle with seeing your Consultant and Nurses.

Suzanne

Great to hear such good news, Suzanne, and very encouraging to those still hoping for remission.

Take care,

Kathleen x