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RA flare

(29 Posts)
holdthewine Fri 29-Sep-17 01:51:24

I'm in real trouble tonight. I've been building up to a flare for weeks, I think. Am very busy and have a lot to do which I can't avoid.

We have a family event at home this weekend so I've been ploughing on but tonight I'm in utter agony, particularly in my feet and ankles. Bugger, bugger bugger. I'm lying here tearful from the pain and frustration with one foot raised in bed but can hardly weight bear. I've taken all my meds and maxed the Voltarol gel and the pain-killers. Have taken a steroid tablet too.
I can't take NSAIDs orally but will try to get a prescription for the pessaries tomorrow. Maybe I need a steroid injection but only certain GPs can do them so may not get seen tomorrow.

Does anyone have any magic words of advice? This is the worst I've been for years and such bad timing. Will be making an appt with the rheumatologist to review my medication as I've been stable for years. I'm on Plaquenil, Sulfasalazine, Methotrexate.

Sorry to whinge! Any ideas?

SerfTerf Fri 29-Sep-17 02:11:56

Nothing to offer but sympathy.l flowers

I'm waiting for more comprehensive spinal MRI before I can see the consultant to get the full information on what the hell's going on now.

That combination of wondering what's causing a worsening while also dealing with with the physical symptoms is a horrible double whammy isn't it?

I'm fluffing turmeric tea because there's nothing left to take blushsmile It's a bit alternative by my standards and I feel a bit silly but I'm past caring.

Can you delegate tasks for the family thing?

SerfTerf Fri 29-Sep-17 02:12:36

Glugging not fluffing confused

holdthewine Fri 29-Sep-17 04:20:44

Thanks for replying. I managed to get into a position where it hurt less and also rubbed lots more Voltarol gel into the foot and ankle. I think I slept for half an hour (thanks to codeine) but then the pain woke me again. It's moved down from the ankle mainly into the foot now. Everything hurts as well but you know how it rattles round? I felt exhausted all day yesterday so I think that was a warning.

Sorry about your back, that's one place I haven't had RA but I did bulge a disc years ago and anyone with serious back pain has my sympathy.

I'm not doing everything myself and will try to delegate but DC have hands full with DGC. DH has a list of things he needs to do too. I may just lower standards! Well let's see if I can even go downstairs in the morning first.

Haven't tried turmeric tea but will!

cremedelashite Fri 29-Sep-17 07:04:59

Swim? Sleep. Delegate. Green juice. Review your meds. Absolutely reduce your stress load- I find that such a flare causer. Sympathies.

Tara336 Fri 29-Sep-17 07:16:36

My DP is waiting to see a rheumatologist. He's in so much pain in his back, us there anything you could recommend while we wait for the appointment?

holdthewine Fri 29-Sep-17 07:54:04

If you're in London I go to David Jones at London Bridge Hospital I have health insurance though. I think he has now retired from NHS work. I am going to ask him for a recommendation when I go as he is retiring fully soon. http://www.londonbridgehospital.com/LBH/consultant-det/dr-david-w-jones/

holdthewine Fri 29-Sep-17 07:55:42

Creme how would you suggest I got to a
Swimming pool? My first hurdle today is how to get downstairs. Not to mention the agony. hmm

cremedelashite Fri 29-Sep-17 08:04:17

It helps my ra. I've recently come off a six month flare waiting to get on biologics. Maybe I'm too hard on myself but I will crawl down the stairs and go swim cause it makes me feel better later on. Good luck, I hope you find something that works. It's the pits.

holdthewine Fri 29-Sep-17 08:24:46

Thanks sorry if I was short. I can't imagine a 6 month flare shock I was thinking in the night, if I were in pain this severe for months I'd be suicidal. Literally like a knife being twisted. Hate it when it affects my feet and ankles as it's so incapacitating. Calling the GP secretary at 9am to request a prescription for Voltarol pessaries which my surgeon prescribed a few months ago after an unrelated operation. I didn't know I could take NSAIDs is that form once my stomach had become intolerant. Really hoping for some relief there. DH is staying home today and taking much of the strain. Let's just hope his chronic illness doesn't flare!

holdthewine Fri 29-Sep-17 09:39:54

Creme I've been in the meds I listed above with no change for at least 7 years. I need to do my research before I see my rheumatologist into the new treatments. A friend of mine is on anti-TNF or something like that and it has stopped her RA progression but only holds it for 6 days a week, she has the most appalling RA with many damaged joints so was very unlucky. Does the term Biologics cover all these new drugs or does it cover the more established disease modifying ones like methotrexate (which I'm on already) too?

Anyone?

cremedelashite Fri 29-Sep-17 10:06:53

No worries. I think the term biologics refers to a secondary suite of drugs available once you've failed on your 3 drugs and been on them for at least six months. If this flare doesn't settle you'll probably be offered them if you're not on maximum dose of methreotrexate. My weekly injection has transformed me for the better when out of the blue sulphasalazine stopped working. I was in so much pain I would've taken anything. In retrospect I wonder if stress and doing less swimming due to being busy at work was a contributing factor for me.

cremedelashite Fri 29-Sep-17 10:08:43

Sorry I mean you'll be offered biologics if you are already on max methreotrexate and your flare continues.

holdthewine Fri 29-Sep-17 11:30:43

I think I am on 75% of max Mx so they'll maybe increase that. In RA Facebook group lots seem to have it injected but I'm oral. Not sure if they're all in USA though. Yes stress has always been a trigger for me too.

holdthewine Sat 30-Sep-17 12:25:03

Thanks for the support. Slept much better last night and pain has eased. Family doing their bit (in their own chaotic way - sometimes it's easier to do everything yourself! hmm
It's still rumbling so will probably hit me on Monday but keeping fingers crossed I can get through the event tomorrow.
Definitely going to investigate my drug regime as this has been threatening for a few months so it's time for a review.

MollyHuaCha Sat 30-Sep-17 22:22:11

Hope you are feeling better soon. flowers

holdthewine Sun 01-Oct-17 01:42:44

Thanks Molly. I've coped well today (good old adrenaline) going to try to get some sleep now and hope juggernaut doesn't hit until Monday!

Newkidontheblock22 Sun 01-Oct-17 10:26:54

I am currently in a flare too (have psoriatic arthritis) so I get how you are feeling!

For me the biggest thing that helps with feet/ankles is soaking them in hot water/bath. I have also frozen a water bottle to roll on my feet which helps, but depends on where exactly the pain is

holdthewine Mon 02-Oct-17 10:32:58

Thank you Mollie, I'm much better now. I hope you recover soon from your flare up.

TommyandGina Mon 02-Oct-17 12:15:01

I've just seen this thread. I'm a PA sufferer and started on biologics (Cimzia) last year. Whilst it's not a miracle and I still have symptoms they're more grumbly than a flare. I also swapped from oral to injecting 25mg mtx weekly. Apart from feeling like a pin cushion I can recommend the combination, and there's less side effects from injecting mtx.

Wishing you all well smile

holdthewine Mon 02-Oct-17 17:10:03

Tommy I'm going to ask the doctor about injecting Mx. Are you in the UK? On the RA FB group many seem to inject but they're often in USA so I wasn't sure about the protocol here in UK.

TommyandGina Mon 02-Oct-17 17:46:04

Yes, I'm UK, Herts if that makes a difference. Metoject pre-filled pens. Are you under a rheumatology dept or just your GP?

TommyandGina Mon 02-Oct-17 17:50:52

Have a look on the arthritis research uk page. They've got loads on info on the biologics anti tnf and how they work, look in their leaflets dept. If you can't find it I'll scan mine and posit it up.

Incidentally, did you see my other post re: smear tests, you should be being checked more frequently.

holdthewine Mon 02-Oct-17 22:47:00

Tommy I've had a hysterectomy so won't need a smear! I am under a rheumatologist but haven't been seen for a few years as I've been stable. My GP had a special interest in rheumatology but has retired though new GP seems informed so I will ask her. Having my regular blood tests for liver function etc and CRP this week so will then see her and ask for a new referral to the rheumatologist. Stress has always been a trigger for me along with doing too much and both apply massively this year. Thanks for your help.

wonkylegs Fri 06-Oct-17 09:58:25

Hi just saw this
Flares & big events always seem to coincide- Sod's law! Stress never helps I think.
I have had RA nearly 20 yrs and I'm on Humira (anti- TNF) and am restarting MTX this week after a break for having a baby (well he's 17mths now).
I was on just the Humira and steroids but they aren't quite enough on their own so am restarting the MTX now I've stopped feeding DS.
I don't tolerate NSAIDs except one that's not very common and my GP grumbles about prescribing it.
I'm glad you've got a good GP, mines shit and it makes things so much more of a chore. Thankfully I have a fab consultant & specialist nurse at the hospital and I've had RA so long now I'm quite a bolshy patient, so I don't take the GPs rubbish.
I am a big fan of my Humira but I know you have to 'fail' on three traditional DMARDs & have a certain level of disease before you can get it on the NHS.

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