Well I thought I would share my recent experience with you all. Few days ago I was sitting at my desk working away and all of a sudden I felt a slight pain in my ankly bone. Mmm I thought but carried on working. This was about 1.30pm. As the afternoon progressed every time i got up the pain was beginning to increase and i could actually feel my foot swelling up. By 3.30 I was struggling to walk and thought this is going to be a bad one. 4.00pm I could not put my foot down properly and the pain was really bad. Decided to drive home at that point (thank god for my automatic as it was my left foot so didn't have to use it to drive. By the time i got to my house at 5pm I was in agony and had to hop to my front door. I had to give in a was crying my eyes out as didn't know what to do. My oh panicked as my foot was pretty bad at this point and toes were going numb. I decided to go to A n E and what a mistake that was. I was there for 11 hours and it was a complete fiasco. Saw two doctors, one a orthopedic specialist who said she wanted to inject needles into my foot to suck out the fluid that had built up but decided to admit me after speaking to her colleagues. i just wanted them to ease the pain and reduce the swelling but that never happened. I finally got some pain killers from them about 1.30am which did give me some comfort. there were no wheelchairs to sit in when i got there so had to hop to a chair, then my husband actually went searching for one and managed to find one which i was left in for the 11 hours i was there. Another cock up was they did not try to find me a bed in rheumy ward as the nurses said i need to see the medics and ignored me when i said i had already seen a orthopedic doctor. Anyway to cut out some of the crap i was dealt, by 5.15am i decided to sign myself out of the A n E as it was a joke and went home. The swelling did start to go down the next day but it took 3 days to get my foot back to some normality. i don't know why I decided to go to A n E but the pain was so bad I thought they may be able to do something for me.
The sad thing is i had gone to my rheumy clinic 3 days before this flare and had a steriod injection as i am struggling with the flares and they have increased my MTX to 20mg which i can't do for 4 weeks due to injections being delivered to my house. I know i need more medication now as it is obviously progressing more. (had it just over 1 year)
Anyway i was disgusted with myself for crying and being unable to cope but the pain was agonising
Picked myself back up now and looking forward to the next flare (ha ha!!!)
Written by
BossyB
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Oh Hi Debbie, how awful, and how sad that we can be treated like that. I've had my time like that where you feel that A & E must be the best plan, yet it seems they know as little as us about how to relieve the pain. It reminded a time before I was diagnosed that while at work my knee continued to get more and more painful and swelling so that I couldn't put any weight on my leg, I took myself off to A & E after hours they gave me crutches and told me not to drive and rest, no painkillers, no reason, no xrays, no referrals. that was 3 years before I was told I had RA. My thoughts are with you and sorry you can't start your MTX increase for awhile, I was told Friday by cons to increase mine to 20mg too and because I take tabs I took them today, I convince myself that they will not do me harm and will evenutally do good, then I can get through the day without feeling sick.Hope you don't get another flare soon and that you have some more time to enjoy life.
Debbie,hope your soon walking better and not hobbling. Hospitals we pay for that service and boy when they mess up they manage to do it big time. Don't be upset about crying Debbie as it is a release of all the emotions going round your body. Hope you soon feel brighter. love sylvi.xx
Dear Debbie50: I just read your blog post and many others. It makes me sad to see so many people in pain and so many having only MXT and painkillers for treatment. When I first joined this site I didn't realize that it was not in the United States. I just thought it was another new RA information center. I soon came to see that all of you were from places I'd never heard of. I've come to look forward to the "sounds" of these voices.
But there is a noticeable lack of medication names that would be common if this was an American blog. So this leads me to ask a few questions if you don't mind.
How long do Ra sufferers have to endure secondary drugs, like, Arava, sulfasalidine, Plaquenil, methotrexate before one gets started on Remicaid, Humira, Rituxan, and/or newer drugs? Also, do you, as RA patients, participate in drug trials?
Also, do you participate in authorized RA exercise programs, such as water aerobics, aqua yoga?
I'm so curious. I used to think that RA owned me and it had a mind of It's own and was out to me. Then I was diagnosed with multiple sclerosis and together these two obuggerswould indeed kill me. Two years ago I got into a Pfizer drug study that is a totally different way of treating RA. It has put Ra & MS where they belong.lol Not a cure. But total control of flares, exacerbations. I've had no side effects, but that's not to say something may arise down the road.I'm not sure if I can mention the drug. It has been approved on the first level only so far. But because it all has happened so fast, It's made me wonder if y'all have options in your treatments.
You guys are in my prayers. Truth be told I've learned a great deal about tolerance, courage and patience from this community.
The system In the UK is different, and the newer drugs are only given once you've tried all the others as they are so expensive. But the advantage is that health care is free for everyone, so I only pay $150 a year for everything and that includes physio, and podiatrists well as drugs. I think there are pros and cons of both systems, and you get to understand how to deal with things in your own country. I look at the US way and it doesn't make me envious at all. (And yes, some people do participate in trials if they want to). Polly
Hi Debbie..what a terrible and frustrating experience for you. It is shocking that you were treated that way. I ended up in an ambulance with the side effects of Suphasalazine but it started an argument over what was the course of treatment. One stopped my MTX, Sulpa and Hydroxy and told me to contact Rheumatology. The other surgeon wanted to do exploratory Endoscopy :/ stopped the drugs..came off the sulpha and have had no problems. The No.1 surgeon overruled the 2nd..thank goodness. Honestly I don't think they no what to do with us. :/ I wish you lots of luck and hope the flares ease for you xxx
HI Debbie. Sorry you had this experience. My last flare was almost identical back in early June -also in my left ankle which had been twinging for a few months but it suddenly flared up when I was on my own in Edinburgh. I was alone up four flights of stairs and I had to get home by bumping down the stairs on my bum and managed to hobble to the bus stop with a heavy bag and rucksack and use the disabled seat on the bus and then check in at the airport all by hopping and hobbling. I finally bought myself a rather expensive fold up walking stick and hobbled to the boarding gate in a lot of pain with my boot unzipped from swellling around the ankle bone. They put me in a wheelchair to get me onto the plane.
I'm so glad I made it home and didn't decide to go to find a doctor or a&e as I contemplated doing. When I got home I took Naproxen three times and after the third pill it all went away and has never bothered me again since. So I almost feel I've imagined it (except that I took photos of my swollen red hot ankle!) until I read your blog!
Hope it disappears on you soon too and the increased dose of MTX by injection does it's job. I take Hydroxichloraquine which has taken 3 months to work but finally the combination of MTX and Hydroxy are keeping the RA at bay and I'm almost completely pain free.
SharD - it's true it takes a long time to get to anti-tnf treatments in the UK for most RA sufferers apart from those with very aggressive or sudden onset RA sometimes. This isn't necessarily a bad thing - personally I wouldn't want to be put on stronger drugs than are strictly necessary to keep my RA at bay - although for some anti-tnf treatments ought to be available far sooner and I do think the way people in England have to qualify is almost inhumane somtimes.
But the NHS is one of the aspects of the welfare state that we all pay high taxes towards and I and many on here are fundamentally very committed to it. We put up with quite a lot in order to keep it so that healthcare is free to everyone in Britiain who needs it. If you are in any doubt about how the majority of people feel about the NHS here I recommend you watch the opening ceremony of the Olympics to see how much of a national treasure it is regarded as being - despite the impact of underfunding in the current financial crisis and despite the present governments attempts to sabotage it (they weren't elected by a majority and are a coalition of two parties so I feel justified in saying this here!).
I hope that this broadly explains the mindset of many of us here on the site for the benefit of yourself and other non UK members.
Tilda xx
Hi Debbie,
How awful for you. I too had a similar experience, again left leg so I could drive automatic to the A & E. They gave me crutches and a bandage!
I hope it doesn't give you any more trouble for a while now but I also want to thank you deeply for your typing error. From now on I will have anklys on the end of my leg. I like it so much more.
I've only had a fast & furious flare once, but it frightened me so you have much sympathy. It's scary and I think I too would have ended up at A&E if there was one within reach! Hope that was your one and only experience too, and you never get it again. Polly
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