The long journey continues...Simponi

It has been several weeks since I even looked here to see what is happening with all of you...I simply have been in survival mode. Newly diagnosed in September 12 started MTX in December, never got further than first base, my liver was not very happy and felt so unwell most of the time despite converting to subcutaneous ...changed to Sulphasalazine, got to max dose and the side effects for me just made my quality of life horrible and really the RA seemed to continuing its rampage despite IV steroids and a plethora of pain meds. Last Friday, saw my consultant, after discussion decision made to move onto biologics......would need to wait for however for acceptance from the health board.. with a possible wait of 12 months. Can you imagine my delight when yesterday my rheum.nurse called and asked me to come see her today!! Nearly squealed with delight, would have jumped up and down and done a dance if I was able, cried and laughed......even the knife pain stabbing in my joints could not take away from my delight. Today, discussed three options, what do I know about which is the best, yes I have read some about each option but I still do not have the knowledge based on experience- which do you think I should take? Simponi is the one and so am now waiting patiently for the homecare team to get in touch.....side effects, risks, yes it scares me a little, maybe more than that if I am honest, but sitting, no laying here tonight, my hands can hardly function because of the pain( thank goodness for IPad that does not require any pressure for my fingers) and the hope of being able to return to a normal unrestricted pain free life far outweighs everything else. Will be able to enjoy walking again, will carry my bag without actually having to consider everything and how heavy it is, and will be able to use my hand to carry rather than my shoulder. Will be able to wear high heels again! Actually enjoy driving again, bake and not be so sore afterwards that actually it is no longer any fun.....so many things I look forward to .....the one thing that I look forward to most? someone giving me a hug without me being terrified that I am going to be in so much pain.......

Wonder what everyone else misses so much....

Has anyone else been prescribed Simponi?

Finally, I know I am so blessed to have a fantastic rheum.team- they are such a support and I love the fact I do not need to explain anything - they simply know by the way I hobble into the room- cannot wait to run into the clinic in three months

I do so hope all of you are keeping as well as you can and that with the advent of spring we can look forward to an easier few months

Katie x

7 Replies

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  • Brilliant Katy, great blog and can't wait to hear how well it goes and see shoe pictures !! Xxxx

  • Such good news I have read stuff about simponi it seems promising it is one of the newer biologics and it is by far the most expensive and you are worth it all that pain and suffering!!, THINK swiss miss is on this and the Swiss know their drugs!! Roche major drug company is a swiss company.

    . I WAS offered choice of 3 enbrel, humira and cimza, but now there is indecision and rug pulling going on, have had extra blood tests and am having scan may 28th!!, the first thing offered/ mentioned by the nurse was infusions!! and I SAID no as the ones my hosp use are four about six hours and are about every six weeks, too disruptive, they use infliximab infusion a lot at my hosp.. again one of the cheapest!!, I COULDNT HAVE this one any way as it had to be given with mtx and I HAD problems with this drug.

  • Well done and I really hope your expectations are realised with Simponi - you deserve it! I really do relate to your DMARD problems and wish you all the best. Tilda xx

  • Hello Katie :)

    Soooo delighted for you that you're getting Simponi!!! Summer is right - I've been on Simponi since September 2011 (a year after I was diagnosed). I had similar problems as you. Was first put on MTX, steroids and Hydroxy, which not only did not do a thing for my RA, it also have me bad side effects. Worst of all a loss of appetite and GI problems so I ended up with dramatic weight loss and they decided to stop DMARDs or I'd be in danger from being underweight, more so than from actual RA! It's been a long story but the short of it is that I returned home to Switzerland from Belfast and got prescribed Simponi, which I first took along with injectable MTX (was stopped again due to nausea and other nasty side effects), now with low dose Leflunomide and low dose Prednisolone.

    My experience with Simponi has been GREAT!! Literally within 5 days I felt like I'd been given my pre-RA body back..no pain, very little swelling and I am now able to live a completely normal life again, including high intensity exercise! I would never have thought it was possible. I am still thrilled! In fact, I just got my monthly Simponi injection at the hospital today :)

    If you have any questions at all about Simponi, let me l know or message me :) I'll be delighted to be of help!

    And yes, the Swiss know their drugs!! I live in Basel, which is headquarters to the world's leading pharmaceutical companies :) Maybe that's how they knew to give me Simponi?

    I am hoping you'll get the same great results as me and keep us all updated how you get on :)

    Lots of love and virtual hugs :)

    Christine xxx

  • Oh I mean I've been on Simponi since September 2012, been diagnosed in autumn 2011 - I blame RA brain fog ;)

  • Oh Christine- you have no idea how happy I am to read your message!! Am sitting crying cos more evidence to say it works and to hear your story......just cannot wait to get started- who would have thunk I could ever be so happy and excited about a drug.. Not even when I was nursing did I get this excited..am laughing at myself.

    And I will take you up on your offer and message you with my questions.... promise

    Tank you for your hugs and love xxx

  • Katie, what brilliant luck! I had to wait 9 agonising months to get on Humira and I could only stay on that for 6 weeks due to cronic projectile vomiting....... anyhow, that is brilliant for you and we all hope it is the one for you. Keep us up to date. Well done. X

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