Six months of flare

Have really struggled over the past six months with a flare that just hasn't been able to be brought under control - and I am oh so weary of it all. In and out of hospital, boosts of steroids nothing seems to have worked. My work isn't undertaking adaptions for me despite the requests of occ health which is frustrating. The occupational therapist has visited and provided me with some gadgets for the kitchen - much though I dislike having to have them at least I can cut things again with the adapted knife.

At a low ebb, but have seen my rheumatologist who is great - I am so lucky to have a doctor that I relate well to -and have now got ortezla added in to my humira. (Any good news stories of ortezla anyone?) He told me that he has a lot of possible treatments that I can still try and that things can be better - I feel like I've been thrown a lifeline and he wants to see me back in a month or two to see how things are going.

Sometimes I feel like this illness is such a thief, robbing me of my energy and capacity to enjoy even the basics - like a walk on an autumnal day.

I can only imagine how demoralising this must be for you. I thought employers were obliged to provide reasonable adjustments? Good you've got a better knife, but what else are you after? You might try contacting your local Citizens Advice Bureau for advice or perhaps your union if you belong to one. It's also positive that your rheumy is definitely keeping an eye on you and that he sounds confident about your options. But still it's hard for sure when 'the basics' are out of reach.

I don't know how I'd deal with a long flare now, probably not well at first, better in the middle and then I bet my morale would flag when it dragged on. Having a good rheumy is so important but clearly you want this flare gone. Please keep us in the loop and off-load here whenever you feel the need. Wishing you well.

Thanks for the support, the OT advice and support like the cutlery have helped with the household preparation of food, I just need work to implement some of the occupation health recommendations and for my flare to resolve. I have brought in my union rep to support me in future work discussions, as I think what I need should fall within reasonable accomodations. My batteries are just flat and I need to recharge somehow before winter sets in.

Hi AuroraB, so glad you got the union involved to support you at work. 6 months is hard work, understandable it wears you out at times. The thief idea really resonates. For me at times it is like hanging on and refusing to let go even though I don't know when the thief will give in and stop trying to steal from me. Hang in there, hopefully it will settle soon. Rheumy sounds like they have some ideas.

Aurora B:

I FEEL YOUR PAIN. I've had an extended flare that was not helped by an initial course of steroids and only a _little_ response on the second try. I take Humira and it is keeping the chronic symptoms in check but wasn't addressing this acute flare. My doc put me on Otezla, kept me on weekly Humira and added Mobic (meloxicam) to decrease inflammation.

I'm about to start my 6th week of Otezla and I'm cautiously optimistic that something just started to change. I'm still dog tired but have bursts of energy again. And while my back just started acting up, my level of morning stiffness has started to decrease.

Otezla was REALLY tough to manage at first. It has not very nice side effects which include nauseousness, gas, diarrhea, and reflux. I took it with Zantac (ranitidine) which helped a lot. I was on Otezla for at least four weeks before the stomach issues settled down. Also some bad headaches came with the adjustment.

Like you I want to be on an even keel before winter comes as it is brutal on me each year. Typically summer is a doddle for me so this year was an unpleasant surprise. I've been toying with the idea of applying for a handicap parking pass at work, but much like you and your adaptive kitchen implements, I'm not ready to admit defeat just yet! I'm holding on to the hope that I'l turn that corner and start feeling well again very soon!

Wishing you well.

Thanks Janeatiu - interested to hear about your experience with ortezla - glad that things have settled down from a side effect perspective for you. The main issue for me to date with it has been diarrhoea and abdominal pain- but am still just in the build up week of dosage - however, like all meds if this is going to give me back some of my life I'll be working hard to cope with the side effects somehow.

I truly hope that you are both able to stick with otezla and find your way through the side effects to get a longer term outcome. It's still not yet approved by NICE in the UK (for PsA) but good, AuroraB that you have a rheumy who is willing trying it out as well as getting funding for it. Fingers crossed ... both hands XX

Thanks for the good wishes. Interestingly otezla's use has been approved for use in psoriatic arthritis in the part of the UK I live in, which is not covered by NICE's rulings but has its own system for deciding on which drugs should be funded by the NHS.

Jules, it took about 5 weeks for most of the side effects to go away. And in the US, Otezla is about $2200/month retail (before insurance). So that plus Humira (about $20,000 every 3 months for weekly dose) takes me to over $100,000 a year in meds. My insurance only required my doc to fill out a pre-authorization (proforma) and it was approved in about 5 days.

I wish you could get it all approved in the UK without such a headache and without the costs of the US system. There has to be a better way in each place!

I took otezla last year. The clinical trials showed that if there was any improvement, it was at 16 weeks. So I took otezla for 17 weeks just to be sure. Not only did it not work for me, but I had terrible nausea each time I took it (twice a day). I was so hoping the tablet would work since I have a needle phobia. Doc said if I have to take a promethazine anti-nausea with each otezla, it’s not worth continuing. So I discontinued after 17 weeks. I really hope it works for you!!

Thanks for sharing your experience Spammy. Like so many of the drugs we take the long wait to be sure whether they have made a difference is always difficult. The only drug that I took that made a palpable difference in a short period of time was when I started the first biologic Enbrel - felt different after only 2 weeks. I was just so relieved that the Ortezla was an addition and not a substitution for my current biologic which undoubtedly makes a difference to some of the draining fatigue of the disease.

Maybe some day they will be able to look at our DNA profiles and say - you won't be a responder to this drug - or you will to this one, and save us these long periods of being in the "gap" .

I hope they can come up with that! I haven’t found anything yet that has been able to help. I’ve had pain and inflammation for over 3 yrs and now have joint damage. I need to find my miracle meds.