Run out of treatment options

jenzie06

For the past two months I've only been on a small amount of steroid and huge amounts of painkillers. Now I'm not even on the steroids as the threat of other long term problems are too high.
I've tried all other treatments, they either don't work or cause severe reactions. Last December I almost died from anaphylaxis.
I need hand surgery but can't because I need to be on a treatment or the repair will be attacked by the RA.
The Ra is attacking a lot of joints and I've just got to tough it out until the new drugs appear. I'm in utter agony, taking every painkiller available and having the gp ringing to check I'm ok but even if I say I'm not there's nothing anyone can do (unless you are in charge of the new drugs, in which case hurry the hell up!!)

I'm not sure why I'm posting as there's nothing anyone can do. I'm just feeling sorry for myself. Sorry.

In other news, does anyone remember the forum baby from 6yrs ago?

trepolpen

hi jenzie06 , which treatments have you tried ?

have you got on with any of the biologics or Disease-modifying antirheumatic drugs , at the moment I am on high dose steriods for RA along with leflunomide , they stopped my Biologic cause I need surgery & stopped Methotrexate & hydroxychloroquine because problems with them & cant take anti-inflammatory

Steriods are not a good option because of the damage they can do but there are other things they can try so pester them

[Deleted User]

Hello Jenzie06

I am very sorry to hear you are suffering so much at the moment. I know you will get a great deal of support from the members on here.

I had to reply, myself when I spotted your post though because I do indeed remember the first forum baby!

Tell us more - I take it 'baby' is now 6 years old!! How is he doing? It was Harry wasn't it?

Take care.

Ellen

jenzie06

Thanks for the replies.

Hi Ellen, the 'baby' (Harry-well remembered) is now a strapping 6yo who goes to swimming, martial arts and beavers. He's been joined by a slightly stroppy 2yo brother (Dillon) who arrived 6 weeks early spoiling my mother to be spa day and needing quite a lot of support in NICU. After 2yrs and 3months his severe reflux is settling and he'll finally sleep through the night the majority of the time (he was usually up 8 times a night, it was a bit hard core at times!). He's now discovered jigsaws and Thomas the Tank Engine. Am I allowed to post a picture of them?

Drug wise I've tried everything up to and including biologics (it was Abatacept that nearly finished me off last December and ironically it's the only drug which has helped with the RA).
Currently it's affecting the majority of my joints and has started in some new and interesting places (who knew you could get it in your sacrum and coccyx!). My tendons in my hands have overstretched and so I'm in splints to prevent the rest from following and I'm dropping things left right and centre (including the 2yo!! He was fine once he'd stopped bleeding). I'm now struggling to get up from chairs and I can no longer straighten my arms.
However, in the last couple of months I've managed to lose over 2 stone and look a lot better. I've managed to lose the 'steroid face' I'd had from the amount of steroids I'd taken during the pregnancy.

[Deleted User]

Hi Jenzie

Wow! Harry sounds to be doing so well and has a brother too - Dillon! It reads like it was a very traumatic time for you all. I am glad he is well and thriving now.

Of course you can post a photo of them both many of our members use hosting sites. If you need help there is a thread on chit chat with tips by 'toady'.

I am so sorry to read about your own massive struggle with RA. I genuinely hope that re-engaging with your old friends on here, as well as some new ones, will help.

It's good reading between the lines to see your sense of humour hasn't left you!

Lastly well-done for loosing 2 stone!

Best wishes

Ellen.

Starburst

Hi Jenzie

I remember you and your boys. They sound lovely and I'm sure they keep you busy. I'm in awe of those who parent and live with RA. You are my hero!

I'm sorry you're in such a pickle. I wish I had lots of advice but I wanted to say that I'm sending supportive vibes. I wondered if you might benefit from a second opinion. I know you've tried all the drugs but might they re-visit some medications and trial them in combination.

Take good care of yourself x

jenzie06

The boys are my absolute world. They make me tear my hair out and laugh myself silly (usually at the same time).
My husband has been (and continues to be) a huge pillar of support.
My mum died 6 weeks before Dillon arrived which was unbelievably hard and was probably one of the reasons he arrived early (as well as my Nana dying three weeks after that, being on huge amounts of steroids and ending up with gestational diabetes). Dillon started out with breathing problems, issues related to the GD and sepsis poor sprout. They also thought he had cerebal palsy as he was so floppy for months, he eventually got neck control at almost 6 months! It was like lugging around a sack of spuds!

There are currently no trials for people like me (i.e difficult) and other trials won't want me as they want people who tolerate things. I have to just suck it up and get on with things although I'm not sure what state I'll be in when I get to try something new. My hands are already changing shape and getting odd lumps and bumps. I've even tried homeopathy which was rubbish.