Flare up help

SVJ

Hi, I am new so please bear with me! I have psoriatic arthritis and I am in the middle of a terrible flare up. It has gone into my feet and I am largely immobile. So far I have had to take 3 weeks off work. I am relatively young and have 2 young children and I feel desperate. I am taking all my drugs and doing everything I can. I suppose my question is, is this how it is? Do I just have to ride it out? Or should I be doing something else. My consultant is now going to see me in his clinic with a surgeon and I am unsure about this. I am at a loss and stuck. Sorry this is a bit garbled!

dreamdaisy

Hello, I too have PsA and am taking a combination of humira, injected meth and sulphasalazine but despite this my PsA can flare (it doesn't like the heat of summer for example) and occasionally does. Many moons ago I had to have a three month meds break to clear my system of Enbrel and it was not a pleasant time. What meds are you taking? It could be that they need a tweak or maybe a change if they are not controlling matters as they could so I hope you are seeing your consultant sooner rather than later. Please let us know how you get on. DD

SVJ

Thank you so much for the reply. I am on leflunomide and dicloflex. I have had a number of steroid injections with little effect. I controlled it well for a number of years but when it went into my feet it massively impacted on my life. I saw my consultant last week and he did another injection and tweaked my medication. I think I need to just let it pass and stop stressing out so much. I am sure that does not help. Thanks again.

stickywicket

Hi there SVJ and welcome from me too.

Having arthritis and young children is a difficult combination even when not flaring. I remember it well. Flares mean different things to different people. Some talk of flaring for just a few days. To me, being bad for a few days here and there isn't a flare: it's just arthritis. You say you've been in a bad way for weeks. That does sound like a flare to me though I can't see you being 'largely immobile' with young children

It sounds as if you've done exactly the right thing by contacting your rheumatology department and making an appointment to see your consultant. As DD says, it might simply mean a few more tablets. However, if a surgeon is involved then perhaps surgery is being considered.

How long have you had PsA and have you always been on DMARDS?
I wonder why you're unsure about the appointment? No-one will force you into surgery you don't want. The choice will always be yours.

Do take someone with you if possible. Two sets of ears are better than one

dreamdaisy

From my experience just being on one DMARD is possibly the culprit. It can work for some (I have a friend whose PsA is very controlled by sulphasalazine alone) but I know of others who are on two DMARDs, or an anti TNF and one, or in my case an anti TNF and two DMARDs plus the occasional diclofenac. My toes and knees are PsA-affected, my ankles and knees also have osteoarthritis so I understand the 'immobile' feeling, the fact that every movement hurts does put one off moving around. Injected steroids never did much for me, the tablet ones however . . . . I weaned myself off them because they are not a long-term solution. For outdoors I have a rollator with a seat, for indoors I am usually OK but there is a stick or crutch in every room, just in case. Unlike you, however, I am an old, childless hag which does make things a little easier.

The only surgery I have had has been three synovectomies (two open on my left knee, one closed on my right) to remove inflammation (at its biggest my left knee was 27" in circumference, all above the knee cap) but as Sticky says you can refuse any surgery that is offered: for all you know the ortho may be just to learn more about those with an auto-immune arthritis because they are more familiar with osteo people so try not to fret too much about that. Please let us know how things progress and yes, stress does not help: arthritis feeds on stress. Are you very tired at the moment too? DD

charleeh

Hi,

If your flare up is really bad maybe you can have a steroid IV ? They can be pretty good if you are desperate?

I found changing my diet helped me a lot once my meds had settled down the initial 2 year flare :roll: - but everyone is different. Anti inflammatory foods like cabbage and celery are great - and cutting out meat helped immensely for me too - I am veggie now. I found that I have trigger foods that make me sore - anything processed, tomatoes and oranges mainly but it's all trial and error. One lady at my clinic avoids dairy as that makes her joints painful.

This disease needs to be treated by meds tho (until I find a natural cure ) - but the diet can help ease symptoms I find.

I hope you feel better soon

Best wishes,
Charleeh x

dreamdaisy

Please bear in mind, SVJ, that AP does not have any form of arthritis but is happy to pass on to those who do well-known dietary advice as if it's something new: diet is only part of the answer and won't achieve any long-lasting or truly-felt results. You are quite right, however, in that arthritis of any kind feeds on stress, either when it's happening or later when things have calmed down. In my experience a flare has to be endured whilst it lasts (and they can last months): they are not a sudden burst of pain which subsides after a few days. DD

LignumVitae

Hi SVJ

I have two young children too and have been flaring badly recently so I feel your pain! My rheumy nurse wisely told me that whilst the disease was at its worst you can do minimal parenting using books, tv (although that doesn't work for my two as they have no interest), tins of beans and spaghetti and peanut butter on toast. I followed her advice at my lowest points and it at least alleviated the work load a little.

I hope your rheumatologist can help and as Sticky says, don't be afraid, you make all the choices and can always say you will go away and think about your options before you give the go ahead to surgery or any other treatment.