|
|
Rank: Advanced Member  Groups: Registered
Joined: 8/30/2010 Posts: 507 Location: Gravesend
|
Well ... two main bits of good news for me this week . I have been found unfit for work without having to have a medical . :) Yayyyy . This is mainly down to me putting my relationship with OT, Consultant , and GP at a massive risk by insisting they write me a report . Hey Ho .. it worked.Now all there is to do is the Work Focussed Interviews and possible Work Programme :( This gives me a massive advantage in trying to get back into work slowly and even under Universal Credit i am better off when starting work even t Low hours. :) I had a Rheumy Nurse appt 6 weeks ago and the outcome of that was a DAS Score of 5.46 (mainly because my ESR was high.This is following a DAS of 5.1 3 months prior to that. The funding bid went in and has been accepted.I am now waiting to hear from a Nurse to show me how to use the epi-pen (i have seen videos on line:)... So Humira it is :) Luckily because of mobility issues ... i have a lot of room on my stomach to inject ;) hehe It should be born in mind this has taken nearly a year to get as i had the T-spot test a year ago , then my DAS went to 4.9 then 5 , so did not auto qualify for funding. Lets hope it helps as i have a lot of volunteering to do ... and then hopefully some work. Hope you are all well this Easter , and are getting fat on Easter eggs and buns Rich :) "The difference between 'involvement' and 'commitment' is like an eggs-and-ham breakfast: the chicken was 'involved' - the pig was 'committed'."
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 5/2/2012 Posts: 670 Location: where the sun always shines :o
|
 Hello Rich Fantastic news for you! Great that you have shared your news. Keep us posted when you are going to start your anti tnf's I start tnf's in a couple of weeks time, undecided which yet. Shame some primary care trusts dither over money, feel ashamed to say that there isn't any finance issues with the rheumy pct I'm under. Have an extra choccie egg on me!  I'm guessing you are so happy!!! Happy easter to you. Jane Xxx
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/3/2009 Posts: 714
|
Rich That is such good news.  After all the great advice you give to everyone you deserve this. Good luck with the Humira. It is so easy to do with the epi pen and I have plenty of spare rubber around my tummy so just grab a bit and it does not hurt. Make sure you get it to room temperature before you inject as it does tend to sting if you do not wait the prescribed time after taking it out of the fridge. I am on my third sort of anti-tnf and finally found the one which works for me. Simponi has been a god send. No side effects and I am still working. It is the first question my RA team ask at my appointments. Am I still working and I am glad to say yes. It is three days at work and two days working from home. This is just the right balance for me and gives me a reason to get up and get motivated. I do find it very tiring sometimes but I just have to pace myself and usually spend the weekend resting as much as possible. Have a brilliant Easter and I am sure the volunteering and work will be here before you know it. Take care Jackie xx
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 8/30/2010 Posts: 507 Location: Gravesend
|
Thanks Jane and Jackie. Jane ...sounds like a good trust ... lets hope it's the same with the Clinical Commissioning Groups from Next week. I can't eat chocolate because of other investigations going on .. Nor .. Cheese , coffee , bananas fresh bread, Citrus fruits, or other Milk Products , and probably some i have missed off . But i will be eating a whole carrot cake over the weekend :) hehe Jackie ... The pen looks huge on the videos and ta for the room temp tip . Glad you have found a drug that suits .. i know there are a lot of options still , so even though I hope it works i am pragmatic about it :) Volunteering is keeping me going mentally and i hope to be doing more with NRAS in the future :) Now .. where did i put that decaff and carrot cake ;) hehe Rich :) "The difference between 'involvement' and 'commitment' is like an eggs-and-ham breakfast: the chicken was 'involved' - the pig was 'committed'."
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 1/29/2010 Posts: 264
|
So delighted for you Rich, lets hope Humira makes a huge improvement to your life, another tip go for the stomach rather than the thigh, much less painful.
Have a great chocolate free Easter.
Best wishes
Sheila
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
|
hi Rich,
so pleased to hear at long last there is some good news for you! i know you've been down a long road with your RA.
i am sure you know all my history from reading the posts re Humira, how scared i was, how i had a long wait ( 6 months ) due to my PCT dragging their heels .. and then D Day when i was so scared! but that's just me, i now know there is no need to be.
the Epi Pen really is easy to use, i went over to my own Rheumy Nurse for her to do the first two, ( well i did the second one in front of her ) as she knew how scared i was and thought i would be calmer with her, which i was.
i found a difference within the first month, i did start a Humira Blog on it .. i must look back and check the early days.
but i have to say i've been on it a good 18 months now and it really has made a difference, that i have been in clinical remission for a good year or more now, i take mine along with 10mg Methotrexate and Hydroxy. no painkillers at all.
i so hope you can get back into work, you are a fantastic Volunteer with CAB, and have been such a support to the forums.
so i hope the whole package comes together for you soon,
do let us know when you start and how you're getting on.
Happy Easter, no Choccies for me as i don't want to pile on the pounds, which i do if i even have a look .. lol,
Suzanne x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 12/4/2009 Posts: 312
|
Dear Rich, So pleased that you got the result you wanted! Best wishes, Fiona 
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 9/3/2011 Posts: 717 Location: Torbay
|
Rich, I'm glad you have had a bit of good news as you help so many people on here that you deserve something good to happen. Good luck with everything xxxxx
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 8/30/2010 Posts: 507 Location: Gravesend
|
Well Hello strangers ;) I apologise for not being on here as much as I would like , and looks like I missed the website survey:O c'est la Vie. I have popped in to see if anyone had any Benefit queries , but there has been none at all ... which is a great thing especially in current climate. Anyway .. update on me : Benefits and Permitted WorkI had a Work Focussed Interview last week and was scared that they were going to put me on the work programme , which would have meant me having to ditch volunteering at CAB.. :O However it appears I am not mandated to go on this because my prognosis is 18 Months .I knew all the programs available in any case and was in effect interviewing her rather than her interviewing me ...hehe. She was good people and I have no applied to do permitted work selling images and basic web design self employed. ( you need their permission ). So I am busy preparing image and web design websites and creating logo's and headed invoices , receipts etc There is so much to do just to get the infrastructure there , including an online shop! and merchant paypal accounts. CAB Still volunteering there and have done a website for them just to get a web presence and allow me to set up online surveys for social policy . It should get the go ahead Monday ... and i am doing that one for free. HealthWell into the 3rd Month of Humira and no real change here .. have Nurse appt on the 2nd August to chat and monitor .. so we will see :) That's all folks for now and hope you are as good as you can be :) Rich X "The difference between 'involvement' and 'commitment' is like an eggs-and-ham breakfast: the chicken was 'involved' - the pig was 'committed'."
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 8/25/2010 Posts: 1,289 Location: Buckinghamshire
|
hi Rich,
nice to hear from you,
well you sound like a man with a plan .. lol,
glad you are still managing to do your CAB work, and now have other pursuits as well.
you are always clear and precise with your posts so i am sure you will be a bonus to anyone,
would be great to hear that Humira is going to work it's magic .. i can't recall if they say 3 or 6 months to try,
hope you are enjoying the hot weather,
Suzanne x
|
|
|
Rank: Advanced Member  Groups: Registered
Joined: 4/20/2010 Posts: 1,749 Location: Somerset
|
Hello Rich
Great to hear from you and that things are going to plan.
I don't come on here as much as I would like either but good to see you ok
Rose
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 8/30/2010 Posts: 507 Location: Gravesend
|
Thanks for all the replies, Update. Had some cards professionally printed , and this morning popped into a local old style art supply shop , and they were fantastic . Got the thumbs up from the shop with regard to the cards on everything but the price , so next step is to find a good print supplier . I will be selling them on my site when I have the shopping cart software done .So watch out local people :) That was a bit of a negative , however he showed me some framed local images that they sell , and so I am supplying prints to them tomorrow for them to frame and sell on a trial basis . Can't believe how helpful they were , and suggested I do a local calendar for them too. Even gave me the detail of a company they use It pays to be totally upfront :). Ultimately if everything is branded with the website and the quality is there then hopefully it will take off , all be it in the local area. Not going to make me a living but what a boost !!! . Yayyyyyy!! Smiling from ear to ear and all pain is being overridden at the moment. Yayyy again :) Rich "The difference between 'involvement' and 'commitment' is like an eggs-and-ham breakfast: the chicken was 'involved' - the pig was 'committed'."
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 5/2/2012 Posts: 670 Location: where the sun always shines :o
|
Hey Rich, Always good to hear your progress & happy news! Nice that things are going well for you I saw rheumy consultant last week, on paper good results being on anti tnf's but ra still active so I've got to step up sulfzal bt taking 3 and not 2 in the morning with increase to 3 in the evening. Ra plays a game but I don't know the rules!! Keep taking your photos Rich. Thanks for updating us. Jane
|
|
|
Rank: Advanced Member Groups: Registered
Joined: 12/4/2009 Posts: 312
|
Dear Rich, So glad your feeling so HAPPY! Best of luck, Fiona
|
|
|
|
|
|
|
