I can't believe I'm having to ask this but has anyone got any top tips for making inflammation worse?
I am allergic to the dmards the hospital can prescribe and the consultant feels the next step is biologics. My hospital however has a draconian policy on who can get biologics and I don't qualify. I score 4.9 on the DAS score and a lot of my inflammation is in joints that aren't scored.
Where as when I was diagnosed I was told the idea is to hit the disease hard and get it in to remission to prevent damage. I was told this week that there is now nothing I can take to do this and I will need to sit and wait without treatment for the disease to progress to such a level that erosion has occurred at which point I may qualify for biologics.
My GP described my situation as Kafkaesque.
I was sent on a hospital course to learn how to protect my joints but I am now being told to forget that and try and do as much damage as possible.
Today I have lifting heavy sacks round the garden and carrying the supermarket shopping despite the intense pain.
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Xanxan
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This is really Kafkaish! So do the medical professionals really tell you to do as much damage you can to your joints?😳😡 This is almost something to make a story about in a newspaper!
To continue the Kafkaish prescription for your situation, which seems to go against all medical ethics, you could concentrate on eating inflammatory foods in abundence. Refined suger, red meat, lots of white bread, lots of dairy products. This may do the job better than doing excersize.😢
When we go to consultant examinations we expect help not to be fobbed off , if they don't take action then the damage will be irreversible,can you not get a second opinion as what they've told you is not helpful at all
I'm in a similar situation as you my last DAS score this week was 5.02 and not enough to have biologics.
I was put forward to take part in a research project and have been randomly chosen to the intensive treatment arm. I will be followed for the next year on a monthly basis and will have my treatment increased over the year.
Ultrasound last week showed I have bone erosion in my wrist joints.
Rheumatologists I can't believe how you are are dictated by the NICE guidelines.
I have recently been thru the same experience myself.I had failed on methotrexate tablets,sulphasalazine,lefluminide,and mtx jabs.
My rheumy told me that altho it was an inhumane practice, but to ensure I Qualified for biologics I would need to be at my worse.So from the next day I stopped all my RA meds which at that point were mainly steroids.Not just cut down but cut out all together.
This all started just before xmas and all over xmas I felt like I was climbing the walls. However, a couple of weeks later my inflammation levels were up,and by the time I had my test in early january ,my inflammation was sufficient to pass the tests and my funding for etanercept was agreed.
I agree it totally contradicts what we are initailly told on diagnosis but if its the only way to get the treatment you need then needs must.
Good luck with all that .I dont envy you its not an easy time.I hope you get the drugs you need.
Apart from the appearance of your joints & your vocal input the only way a hospital trust will provide funding for biological RA drugs is that dratted DAS score.
You could try eating food you know affects you & lowering any painkillers you are taking....but whether that would help is unlikely.
As usual of course it's accountants who are calling the tune.....until the people who make decisions on NHS funding realise that throwing money at a system that is far too broken to ever work, & start thinking " outside the box" things will not change.
I'm like you (worse in my feet, knees and hips). Hardly any involvement in my hands, although it's in my shoulders and lower back too. I'm also unable to tolerate dmards - the last try sent be to the emerg in Nov.. In Dec., my rheumy told me that there was nothing else to prescribe to me... and to go back to a regimen of Tylenol Athritis (slow release 600mg of acetaminophen) Found out since that he's highly regarded by his RA patients, but not PsA - no research $ with us, I suspect. I found a specialized clinic for PsA in Toronto and have my appointment with a new rheumy there at the end of the month. In the meantime, I've been managing with diet, supplements, meditation. It has helped a little bit to deal with the pain, but the inflammation is still high and the fatigue unrelenting. I agree: if you need to make it worse, eat all wrong (refined foods, high in sugar and high fats, fried foods, alcoholic sugary drinks). Get totally sedentary for a few days before your next appointment.
I find it bizarre that for seven months they've been all...." we need to get this under control, don't worry we've got plenty of options, we need to get you in to remission" to now.. "oh sorry we aren't allowed to give you the drugs we think clinically, you need, so forget everything we told you about prevention and remission. We are now not going to treat you at all because we can't afford to. Let's hope the disease does some serious damage so we can"
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Found out since that he's highly regarded by his RA patients, but not PsA - no research $ with us, I suspect. I found a specialized clinic for PsA in Toronto and have my appointment with a new rheumy there at the end of the month. In the meantime, I've been managing with diet, supplements, meditation. It has helped a little bit to deal with the pain, but the inflammation is still high and the fatigue unrelenting. I agree: if you need to make it worse, eat all wrong (refined foods, high in sugar and high fats, fried foods, alcoholic sugary drinks). Get totally sedentary for a few days before your next appointment.
F2F, feeling nervous and biologics.
Biologics question
The continuing debate about CRP and ESR, my experience...so far.
