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[Bubbub]

Hi I have had psoriatic arthritis for 4 years now, been on MTx and suffered bad nausea so now doing injections which helps, I think the medication has lost its effect and have been put on sulfalazine. This is also giving me bad nausea and I decided I couldn't tolerate any more after 5 days. Has anyone been offered biological drugs for treatment?

[Hidden]

Yep, I've been on Humira since 2014. Mtx did help me somewhat but not nearly enough. Humira has been a whole different ball game, there are many days when PsA barely affects me. I do still need to pace myself but that has become second nature and I am talking pacing ... and lifestyle stuff such as getting regular exercise is vital too .... rather than full-on fatigue and the misery that goes with it. Apparently I still have some slightly swollen joints, some tender ones and the state of my feet concerns me a little, (sometimes a lot!) but I can live a pretty normal life quite comfortably most of the time.

To cut to the chase, if you are offered biologics I'd say grab the opportunity with both hands! Is that what your rheumy is considering?

[Bubbub in reply to Hidden]

Not seen dr about biologicals yet, I think you have to have tried 2 dmards before getting them, I know they are expensive so think they are not first choice in the uk.

[Hidden in reply to Bubbub]

No, they are not the first choice. But there is some concern as to how far DMARDs can control disease progression in PsA and some rheumys seem to be more aware of that than others. If you have moderate to severe disease, some persistently swollen joints and have failed 2 DMARDs then biologics really should be considered.

Like a lot of people I've not suffered any side effects whatsoever on Humira. I inject it myself and it's remarkably easy, I casually do it these days while on car journeys or cooking the dinner .... but naturally I did feel apprehensive at first.

[Bubbub in reply to Hidden]

Are you in the uk?

Will see what rhumy says,I'm fed up of being immobile with a walking stick for support at 56, and having to give up my job in science education which I enjoyed but literally couldn't function on my feet!

[Hidden in reply to Bubbub]

Yep I'm in the UK Bubbub. Do you have any swollen joints? Much as nobody wants such things, they are a useful part of the 'passport' to biologics.

[Bubbub in reply to Hidden]

Yes both ankles swollen cannot see ankle bone, painfull like walking on sponges! Getting appointment is bad with Rhumatology in Leicestershire.

[Bubbub in reply to Hidden]

Do you inject humira yourself or go to hospital for it?

Does it have side effects?

I cannot tolerate nausea which dmards give me.

Fed up of aching feet and ankles, I've had to give up my job as not able to stand for long, not good at 56!

[nomoreheels]

Hiya Bubbub, welcome. I can't help re biologics I'm afraid, I'm on my 4th DMARD, but just to support you with nausea on sulfasalazine, even on prochloperazine I still had it & it was stopped, replaced with leflunomide added to my longest serving DMARD MTX.

I hope your Rheumy listens to your concerns & is open to talking about the possibility of you being eligible for biologics. Maybe this will help you prepare, the biologics info is after the list of DMARDs nras.org.uk/getting-establi...

[Bubbub in reply to nomoreheels]

Thank you, are you in the uk? Read the link thanks, very informative, my ankles and feet are effected most, unable to stand for long, my CRP has been 19 last 2 blood tests.

[nomoreheels in reply to Bubbub]

You're welcome! Yes, I'm in the UK although was diagnosed abroad in 2008 when I was 48. I had a GP who recognised early signs so was diagnosed promptly, seropositive. My feet & ankles were the first sign so you have my sympathy, they've remained my worst affected joints, not helped by my current Rheumy disregarding them for 2 years but I see a Podietist frequently which has helped. They remain an early indicator of how my RD is so in an odd way it's helped!

Your CRP is high enough but not overly. Definitely showing you've acute inflammation though.

[Bubbub in reply to nomoreheels]

Yes, I live in sketchers with memory foam. It really is depressing sometimes when pain is bad. I find some people don't understand. 👍

[nomoreheels in reply to Bubbub]

Sketchers aren't for me, collapse arches etc have me in more supportive footwear I'm afraid, though many others on the site do wear them. I can wear a block heel & wedges though at last, so I'm not so much nomoreheels any more as yayheels now! I went through a stage of feeling a party pooper not being able to stand for long & finding the nearest chair but my friends are secretly pleased to have the excuse in joining me!

Have you tried heat for your feet? I find that helpful & although I'm far too young to need one (yeah right) I have an electric foot warmer on whenever I'm resting. Or some find cold helps, it blocks the nerve signals, though it's more limiting than heat.

[Bubbub in reply to nomoreheels]

I usually use ice packs for ankles, left one on to long on my feet heels last week & nearly went through the roof, ankles throbbing!! May try heat instead, see if it works better? thanks. I've got fitflops which are supportive but nearly fell off the height and twisted my ankle! 👍

[Gnarli in reply to Bubbub]

Birkenstocks are my newest love affair. I don't know what I'd do without them even though I really miss "pretty shoes" and heels.

J

[Wyaatch in reply to nomoreheels]

Hi nomoreheels--I want to ask what your podiatrist does for your feet? Thanks.

[nomoreheels in reply to Wyaatch]

Initially I had an assessment which is where she determined what was wrong (!), the damage I'd incurred because of disease activity being under medicated. She had me walking in bare feet up & down the internal corridor from which she determined how over pronated each foot was, my balance (or lack of it barefoot), ankle strength, gait etc, this was to determine my initial need for orthotics. My first pair were off the shelf ones & built up at each visit, I had manipulation too. Eventually, after many months & once she considered they were supportive enough I saw another person who specialises in arranging custom made orthotics & after some additional changes to them she sent off everything to the manufacturer to have my orthotics made. Now my Podietrist continues to deal with with continuing problems, the callouses & corns on the balls of my feet & nail cutting, filing & massage, advice on footwear etc. I was given ongoing treatment status so I just ring up the PCC & I'm given an appointment. I see her probably every other month on average. Hope this helps. Do you have rubbish feet too Sandy?

[Superfloozie]

Hiya, I too have PsA, diagnosed in 2002 so have done mxt both oral and injections, I had really bad nausea but to keep taking it I took anti-sickness pills which helped, might be worth trying in order to keep going? I went onto biologics after failing on mxt and just about every other drug available😜 And have now gone through all biologics available for me some of which kept me working for a reasonable amount. The best ones for me where enbrel and humira both of which really helped the joints. You don't always need to fail two as age has a lot to do with it, the younger you are the faster they will offer biologics as you have better potential for a full and active life. It does depend on your consultant though so you do have to be pro active and ask for them. I'm 51 and have walked with a stick for 6 years now beacause I struggle to find drugs that work on all fronts, however whilst enbrel/humira worked I was almost able to be back to pre disease state with a few minor considerations.

Good luck with it all

[Sanbanan]

Hi Bubbub

I have PsA and I am now on my 4th Biologic & also in the UK.

I tried MTX, Leflunomide and Sulphasalazine with pretty nasty side effects.

The biologics I have tried so far have helped to a certain extent but just not enough therefore I have just started a new one which is my 4th.

It's all trial and error getting one that works for you.

Best wishes

[mbw159]

Yes I take benepali it's another name for etanercept IV been doing the injection for around 3 months now but had to stop for a while as I've just had a mid foot fusion just started back on them I haven't noticed much difference yet but they are just to slow down the progression of the arthritis will see how things go why don't you ask your rhumatolagist if you can give them a try keep me up dated good luck xxxx

[Bubbub in reply to mbw159]

Are you in the uk? something has to be done, I can hardly function, have no quality of life sitting in a chair, had to resign from my job as couldn't stand! Both ankles feet painful. Will let you know the outcome, thanks Jan

[Anniepannie57 in reply to Bubbub]

I have PSA as well U have had it since I was 38 ,now 63. Next month ,I am in Methtraxate injection and sulfazalazune. But on top that I still need all my pain killers 8 per day and I do get fedup with it all .

But what can you do just got keep going I try keep up with some gym walking ,can't wear heels and just wear good trainers ,when I wear dresses I have nice soft heels I bought in Watt bro .

I was sent back to work with the Tory cuts at 59 years of age now o am really suffering

I work I. A heavy orthopaedic ward .

Yesterday I worked from 7 till 3 and by 1 o'clock I was in terrible pain .i came home went to. Bed .

They won't give me my pension till I am 66

Can anyone tell me what happens now if I went on benefits as I am killing my self ,and no one in the system cares

Anne from Lesmahagow

[James53]

Hi

I am on Benepali a bio similar to enbrel Etanercept. Started in December 2016. So far a significant improvement in mobility and pain reduction. Previously had sulphasalisine and methotrexate. Diagnosed with Psoriatic Arthritis 13 years ago.

[Bubbub in reply to James53]

Are you in the uk?

Do you inject yourself?

Did the Rhumatologist give you the biological after dmards stopped working?

[James53 in reply to Bubbub]

Live in Scotland. Had to stop sulphasalisine as it was causing kidney stones and losing effectiveness. MTX stopped after two years due to causing problems in my lungs! Self inject Benepali. It is easier than I imagined. Hope you get treatment sorted out.cheers

[Bubbub]

Thanks.

[Deejojo in reply to Bubbub]

I'm starting in dmards soon mtx but I'm dreading it my knees and right hand is the worse also got calcification in left Achilles 😲🙀

[Barrister]

I am on my second biologic, first on Humira for 14 months but it stopped working and now on Enbrel with 10mg of MTX. Very few side effects from the biologics, MTX causes nausea but I take cyclizine which has worked very well. Clemmie