PIP & Steroid Jabs: Sorry, because so many of you... - NRAS

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PIP & Steroid Jabs

TempleofDoom
TempleofDoom

Sorry, because so many of you supported me when I claimed PIP and I was so gobsmacked when my award came through, I forgot to let you know.

My worry now is that my regular Depo/Medrone injections (I have them every 3 months) might be stopped along with other procedures that are considered to be 'unnecessary'! I just wondered if anyone had been informed about this directly? xx

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Do you mean the list that was published recently of things the NHS considered to be largely ineffective and would only do in exceptional or specific circumstances?

It is only at consultation stage, so not fully agreed yet. But it is mainly specific small operations, most of which they will just reduce the number of them rather than stop altogether. It is about saving money, so injections cost pennies and are effective, so I really wouldn't worry. Of greater concern is having the staff to do them!

Here's the list - the one that alarms me most is knee arthroscopy as I had one 10 years ago which worked brilliantly and made it possible for me to continue walking.

bmj.com/content/bmj/suppl/2...

Thanks helixhelix. I should have looked at the detail first instead of believing what someone else said! I'm presently on the downward spiral towards my next IM Depo-Medrone at the end of August so my brain hurts, as well as the rest of my body! xx

Is there no treatment that works for you? Is that why you have 3 monthly depo' s?

I think I've been on everything apart from biologics. I also have fibro & badly degenerated spine. I had to have surgery on my back in 2012 which enabled me to walk upright again but they would not consider any more as, firstly, they wouldn't know where to start and secondly, there would be no guarantee it would work.

I've really been left with the only meds I don't have reactions to. I Can't tolerate patches but have liquid morphine in the morning (which is another no-no so that could stop at any time). I can't tolerate steroids in tablet form but get so much relief from these injections in my bum. Then I take 3 x 25mg Amitriptyline & Paracetamol 4 times per day. I do have Diazepam on standby for muscle spasms as well.

I can't describe what a massive difference this makes to the quality of my life for a few weeks but I'm now on the downward slope to 24 August. Nic xx

You poor thing. So you don't tolerate biologics? Do they know why? I have degen in my spine too which they can't do anything about, my Mum has it too. But luckily my RA is doing better on Rituximab which also got rid of the lupus.

I hope you find a drug that helps you as steroids are not a long term solution as you know.

Have a look at The Autoimmune Protocol by Dr Sarah Ballantyne online. It really helps me

X

I am off for my steroid injection today and I am in agony, the relief I get is amazing and need to disccuss it with my consultant afterwards as this is the 2nd 4 month injection, it supposed to be 6 monthly but a car accident last December has made my situation much worse and like others here an op is out of the question as it won't heal. If they ever stop giving me the injection I will be housebound within a month and then what will that do to the social care I will need as a result. Joined up thinking is something government lacks and in the end costs a lot more money, they will have to pay me the maximum care component, which they don't have to at the moment.

You might be exempt from the change but that is another issue.

I have called the pip people a number of times to tell them of changes to my RA medication and it’s simple once you get through the wait to get your call answered.

Examples of when I have called have been the switch to injecatble methotrexate, the addition of benapili and most recently the change to rutuximab.

My reasons for this are simple if there is a need to change my claim because I become more or less able to do something they will always want a date of when this happened and evidence that the change that occurred has lasted I think it’s at least three months so at least that date is proactively logged on their system.

I also remind them that RA medication usually takes the doctors sixmonths to evaluate whether there has been an improvement and so feedback on how well I can do things make take some time.

It was also noted at my pip reassessment that I had been I touch with the helpline a number of times to update them on my treatment.

I hope this makes sense and is useful of not drop me a pm and I will delete it.

Nik

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