Here comes the cavalry

Well, if you read this blog much you’ll have an idea I’ve been flaring, semi-flaring, recovering from flares and going into new flares, for a wee while now. (Or not – ’cause I realise I’ve failed to actually post about most of it!) I was quite shocked to find, when I did a little history, that actually I’ve had four significant flares since December/January (and two falls) whereas my normal, controlled RA gives me maybe 1-2 flares a year normally. If I go on like this, this year it will be more like 8. That’s not good.

Anyway, by Tuesday of last week I realised that, having been uncomfortable, vaguely flare etc. for a few weeks, I was heading into a full works flare, and I was right. By Tuesday night I could just about use my stick to hobble from the bedroom to the toilet and back – all of about 10 yards.

Protests over responses to the COVID-19 pandemic - Wikipedia

Because of COVID, and partly because of my usual reticence based on the fact the medics don’t take you seriously unless you’re half dead, I’d really been trying to avoid contacting anyone. I had a flare in mid-April that caused similar hobbling but not quite as drastic, and although it took about three weeks I was able to treat it myself with hot and cold packs, pain killers, rest etc. This time I could feel it was different.

Because of COVID (although I bet they keep this in place for ever now) you can’t call the GP – you have to fill in an online request for help. So I did that on Wednesday morning. No response.

So on Thursday morning I called the hospital helpline – answerphone – ‘Because of COVID we’re only open Monday to Thursday mornings. We will try to get back to you in 48 hours.’ No response Thursday morning – OK … so they’re not going to get back to me until Monday at the earliest now. Still nothing from the GP.

Thursday PM – I called the NRAS helpline. They’re not medically trained but they can ask medics for advice if necessary and they have masses of useful advice to give. They’re a really useful port of call to discuss things with and make sure you haven’t forgotten something useful that might help. Answerphone – they’re overwhelmed at the mo because of COVID and because people who can’t get through to their hospitals and GPs, like me, are calling them!

I can’t tell you how low this made me feel – truly abandoned by all and sundry. I really felt I was just going to have to stew in my own juices so to speak, at least for the next four to five days and I didn’t know how I was going to cope. I was very nearly in tears – which these days is a very rare thing for me. I have to say here that hubby was being fantastically supportive, both physically and mentally, but the feeling of being abandoned by ‘the system’ was still strong.

Yes, of course I was being unfair – it hadn’t been that long, and I should have probably called everyone on Tuesday morning, but when you’re feeling like I was feeling, I think a little unfairness is normal and acceptable!

The cavalry arrives - Wikimedia Commons

Then a bit of light started to shine at the end of the tunnel – THANK YOU NRAS! Their wonderful helpline called me back the same afternoon and I had a very useful (and lengthy, and supportive and kind*) conversation, and honestly, just talking to somebody outside the family about it, really being able to unburden my frustrations a little bit, was massively helpful on its own. But not only that – as well as suggesting various things I was already doing, she reminded me about the possibility of using a TENS machine – I’d completely forgotten about my TENS machine, and it really made a big difference for the pain.

Later that afternoon the pharmacist at the surgery rung back. Pharmacist, I hear you cry; isn’t that a bit odd? Well yes, but this is the UK – we have a massive shortage of doctors and then there’s COVID – anyway, I’m quite fond of our practice pharmacist; he makes me laugh (although I suspect he’s the one responsible for the shielding nonsense – but could be wrong.) So we had a chat and he prescribed prednisolone (40 mg, 7 days – high-dose but short-term). I asked if I would need to shield given the dose. ‘Oh, you should be shielding anyway.’ I didn’t have the energy to argue – especially if there was the prospect of prednisolone on the horizon – it’s normally a miracle cure for me, although they can only prescribe it once or twice a year due to its various issues.

Hubby picked up the steroids from the pharmacy for me and I took them that afternoon. By Friday morning the pain was drastically reduced, and the swelling slightly so. Yay!

Then, to my astonishment, give the hospital said the helpline wasn’t open on Fridays, on Friday morning I had a call back from the nurse practitioner at the hospital. Once again, she nearly fell of her perch when she heard the dose of steroids the surgery had put me on – but I don’t care, ‘cause they work! She was helpful though, and we had a sensible conversation. I was able to point out that I’d had four flares this year, and that because my appointment was cancelled, I had no hospital appointment until November. She has therefore asked my consultant to call me at some point – well before November – to discuss the possibility of ‘triple therapy’ i.e. probably adding sulfasalazine to the mix of methotrexate and hydroxychloroquine.

She also mentioned biologics. I pointed out there was no way I would tick all the boxes – managed to avoid being too sarcastic about it, as she was being helpful! She didn’t like the phrase tick the boxes. She said, ‘Well… I wouldn’t put it quite like that, I mean you would probably have to … erm…. well … yeah, you wouldn’t tick all the boxes.’ I was mildly amused.

She also confirmed I did NOT need to be shielding on methotrexate, but should shield while I was taking the steroids.

In spite of all my grumbles I’m very grateful to everyone for getting back to me, and really not taking very long at all!

And now…

I’m nearly finished the dose of steroids, and I’m so much better. It’s not just the knee, it’s everything, all the little niggly pains I’ve been trying to ignore – all the morning stiffness – all the pain in my fingers and knuckles in the night and early morning – all the little niggly joint pains throughout the day. I’m cross with myself for putting up with it for so long, to be honest, but I know that in general, and even more so now with COVID, if I rang any of the medics and said, ‘I’m having these annoying, niggly pains’ I would have got pretty short shrift  – and I can understand that!

So overall, I’m much happier, but I know it’s going to be a long haul. Before this happened I was getting the mythical and magical 10,000 steps several times a week. The last week I’ve managed an average of about 440 steps. Previous blog posts remind me it’s a long haul back to the summit, but I’ll get there!

* Things one rarely feels from the overstretched medical side

Ha – this is apparently over four times as long as the perfect blog post, so if you got this far – congratulations and thank you SO MUCH for being interested enough to read it!

10 thoughts on “Here comes the cavalry

  1. Hi Polly: What an ordeal! I’m not sure whether the cure wasn’t worse than the flare, i.e., dealing with the situation. We’ve talked about the differences between the UK healthcare system and what we have in the US. It’s one major difference that I can call and get into any of my doctors. And, yes, prednisone makes you feel like, well like you’re on steroids (as they say). Hope they’re having you taper off such a high dose. The number of flares you’ve had is troubling and I hope it’s just a passing fancy of RA and not turning into a routine. Sending (gentle) hugs.

    1. Thanks Carla – yes, dealing with the situation certainly added some stress. I’m grateful that the NHS is freely available to everyone but it’s certainly not a perfect system by a looong way – and of course made worse by years of cuts followed by a COVID-19 crisis! LOL – yep, definitely feel like I’m on steroids. It is nice to feel awake instead of half-asleep most of the time. One more day of that and then back to normal zzzzzzz. 🙂 I hope so too re RA just having a passing fancy – nice way of putting it!!

  2. Glad your pharmacist gave you steroids and you are feeling brighter.

  3. I am amazed at how steroids are prescribed and thought of in our two countries. For many in America steroids are the last option. But I know in other parts of the world (Canada for one) steroids are the first line treatment. Even for People With Diabetes, knowing that steroids rock a person’s blood sugar to very dangerous levels.

    i am hopeful you get back to 10K steps sooner than later. But in case you need to borrow a few, I can send you Sheryl’s step count each day and you can add those 12-14K to your count and divide by 2 (I am using them as well) and we can both feel pretty good about ourselves.

    see you are better than half way to your goal already !!!

    1. Hi Rick, not sure about the first line of treatment – I’m already on MTX and hydroxychlroquine but I suppose the big difference is that biologics are not an option here, whereas I’m quite sure a rheumy in America would bung me on them now if I had the health insurance to cover it! Also short-term is way different to long-term steroids.

      THANK YOU – I could definitely use Sheryl’s step count – that would be a big help!!

  4. I’m so glad you aere able to get some help and relief from the pain! It’s awful to feel abandoned by the only people who can actually do something about it, beyond the usual heat, ice, etc. And it’s great that you’ll be able to talk to your doctor before Nov. (!!) about increasing treatment, given that your RA is becoming more active.
    You’re a plucky, one, Penguin. I hope this flare is about done and that there won’t be another anytime soon.
    Also: WOWOWOW on the 10,000 steps! That’s fabulous! Getting back to them will be a breeze once the rheuma-dragon is snoozing again. Hugs, my friend.

    1. Hey Wren, lovely to hear from you – I miss you now you’re mostly Twittering as I don’t use it that often! I do love seeing your illustrations on there now and then though! Of course, with the VA thing being a little bit like the NHS, you’re probably one of the few Americans with insurance who’ve been in a similar boat so you understand what it’s like!

      As to the 10,000 steps, I hope you’re right – I have two challenges there. One is the RA of course but the other one is when I get really busy at work, I just don’t have the time in the day or the energy in the evening to go for a decent-length walk – and it’s a very sedentary job. Oh well, I will persevere. 🙂

      I hope things are OK for you m’dear and that your rheuma-dragon is relatively quiescent at the moment! Hugs across the pond to you!

  5. Ah, biologics aren’t an option in the UK. Perhaps due to cost? Because my metho, xeljanz xr, and a daily Celebrex (anti inflammatory) seems to do the trick and leaves me with an occasional flare. Very occasional. I have pred in my medicine cabinet and I take it for a few days when suffering from a flare and I’m good. Not sure I’d want to eliminate the Xeljanz xr.

    Patience, self care and be gentle with yourself. You deserve it.

    1. Hi Leigh, You’re so right – patience … it’s something I don’t have loads of, but I’m working on it! 🙂

      As to biologics, they are an option in the UK – thousands of people are on them – but they’re not an option for me,because your RA has to be loads worse than mine is before they’ll even consider you. There’s no thought to the fact that I’m holding down a full-time job, and if I got a biologic I would be more likely to stay that way – or any other quality of life type consideration. Unless you’re in a really bad way – no. So if ever get to the stage where I can longer work, I’m claiming aid from the state and I have little quality of life, then they’d CONSIDER putting me on them. Even then I might have to go up in front of a panel of medics and justify why I needed them! (Although I’m not sure if that last bit still happens – I may be out of date there!)

      How nice too to be able to keep some pred in your cupboard and be allowed to self-administer, so to speak. Again that’s not something they’d consider doing here!

      I hope you’re keeping well and healthy and not needing your back-up cupboard meds!

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