Rheumatoid arthritis

hi there

we have a similar story in that I was diagnosed privately and then given a private prescription which comprised the DMARDs and Oral Steroids. The challenge was getting this as an NHS prescription. As you are finding, you can see a private consultant within a matter of days, but the delay to see an NHS consultant - even if the same person - can be months.

Your GP can prescribe the steroids. Mine was reluctant to, so I used my local Rheumatologist Advice Line and a Specialist Nurse wrote to my GP requesting the support, which resulted in the prescription I needed.

The DMARDs were more difficult. I had a private prescription in my hand, which boots wanted something obscene to produce (£hundreds of pounds) and the GP wouldn’t help me with. There is something called a shared care procedure (might be called something else) but I struggled to find someone that would give me the time to make the transfer from the private prescription to the NHS. The other challenge, is that for me, and others here with the same condition, I’m afraid to say that DMARDs do not always work. In my case they simply made me feel unwell, physically and emotionally. What has worked very well, almost to the point of remission is Biologic medication which I understand is very expensive, and so whatever happens, you’ll need the NHS diagnosis and prescription which, they say, is a lifetime prescription for whatever works for you.

if it helps in the meantime, things that worked for me include;

• oral steroids
• reducing stress / emotional pressure
• hydration
• gut health (I removed gluten, artificial sweeteners, sugars or “ose” (glucose, lactose etc) and deadly nightshade veg from my diet, and I’m currently trialing no meat). Increased fibre through more veg and fermented foods, sauerkraut, kefir, kimchi etc Check out the collection of rheumatoid cookbooks
• taking things out of my diet, rather than chasing supplements
• for my feet I did purchase a foot spa, sort of a gimmick but helped.
• I also found naproxen quite good, which needs a prescription
• Time off work - luckily I was well supported with this to just rest
• Using the rheumatology advice line
• Learning about the microbiome - start with a Netflix documentary called “hack your health”

The good news, is that there is a solution that will help you and make you feel better, it’s just that the road to that can be long, There’s a fantastic poem by Stephen Fry that basically says your pain is very real, but is just a season, and that season will change for the better.

Keep posting here, even if to rant, sometimes it helps just to put it in writing and there is a whole bunch of people who’ve been through, or who are going through the same as you. You are not alone.

Hope this helps

The senior GP at my sugery misdiagnosed what i now know to be obvious symptoms of RA. I went back to see her and she still missed it. My next appointment was with Physician Associate who just told me to stop wasting time basicially. I left it a month and went back, trainee Dr got it in one, sensibly took blood tests, no one else had bothered. Results in, and an urgent referral to rheumatology followed, that took another month all in all it took around 7 months from first symptoms to seeing my consultant. Lovey guy, competent, empathic and keen to give a lot of info and directions to support. I started MTX last Setember and am in clinical and biochemical remission, the look of increduality and anger on my consulants face after I told him about my surgery was very validating. The NHS is very hit and miss, my RA department is fab and yet others I know have had horrendous problems with other departments in the same hospital. I am taking MTX still as consultant wants to make sure I am stable but at the next review in a few months, I will be coming off it either slowly or straight away