New Diagnosis - If only I had known...

I had a good physio specialist called [Mod Edit - personal name removed. Guidelines - Brynmor Admin].

She was understanding and explained that from the scans and x-rays I had she could see it was wear and tear over the years. I was 45 when I was diagnosed with Osteoarthritis. I liked her because she didn't automatically say it's your weight. She said it doesn't help and I totally agreed with her.

I find it difficult to lose weight as I am on a budget and need help with healthy eating. I love chicken and fish. Sorry if you read this and are Vegetarian or Vegan but I do love veg dishes as well.

I think the last 2 years since I first fell ill and the 16 months since being diagnosed with PsA has taught me that I need to be more assertive with the medical profession rather than passively accept things as 'they know best'. I've come to realise that not all in the medical sphere put their patients health and wellbeing first. I've also realised that any important communication I wish to make regarding treatment should be put in writing to ensure it is understood, acted upon and included in my medical records.

Sorry if that sounds negative.

My diagnosis of rheumatoid arthritis was confirmed last month and had appointment with the methotrexate specialist nurse today which was very reassuring. She explained that although the medication will suppress the immune system it is to bring it back into 'normal' levels - and regular blood tests enables them to keep an eye on things and to check the medication is working well. I was also reassured that their aim to get me back to being able to do what I love (up until end of August I was very active and a keen runner).

@JenHB It is so true re nobody mentioning NHS Prepay anywhere. I only found out about it from a small private pharmacy. Should be a standing recommendation here as often we are not eligible for free Rx, (diabetics and i think over 60’s are).

The important thing is to treat RA early and as aggressively as possible, or as they say in the creaky trade - hit it hard and fast. Unfortunately My NHS Rheumy told me he has never received a timely referral (NICE guideline is referral within 3weeks of symptoms onset). It’s great that you haven’t spent time ignoring the pain and “powering through” as I did (I was an idiot).

Your ACCP & RF levels will indicate your prognosis. Those who have seronegative or low ACCP & RF have the best possible chance of remission, or at least reduction in drug dose. MTX works by interfering with rapidly multiplying cells, intended for cancer, but coincidentally also slows down T cell replication. This reduces the damage to your joints from the nightly marauding T cells, but makes you vulnerable to infection as your immune system can’t mount a vigorous response to infection as it normally would. It is also why vaccines are less effective while on mtx, and why we can’t take live vaccines eg nasal flu vax.

Ask your nurse practitioner to take you through all the pros & cons of mtx, (its the best drug for RA for most sufferers at present). Knowing both sides will help you navigate the potholes on this journey without too many hard bumps.

Some people also benefit from dietary changes, a lot depends on your genes. Like @AndyT , I did well out of cutting sugar (both T cells & cancer cells LOVE sugar), and there is a BMJ report on a large scale double blind controlled trial on the effects of Omega 3 & Vit D3 over a 5 year period worth a read. Short version - sunshine & vit D3 does the heavy lifting to reduce inflammation over 5 years. Omega 3 benefits flatten out after 3 years, I suspect that’s because by that time the pro inflammatory omega 6 has been largely flushed out (doesn’t mean it can’t return if you return to a junk diet!)

Like you I was also a very active gym bunny & runner, but you need to make adjustments to not exceed the rate at which your body can repair joints, both your RA & impact exercise bashing them is not a good idea, and neither is being a couch potato. Everyone is different so talk to your NP about that too.

Back in November at the height of my pain I was only able to sleep 1 hour at a time, and in constant agony which only gradually let up after months of MTX, and my ACCP & RF was so high (maxed out the lab upper limit) my rheumy’s eyes were like saucers when he saw the test results and he wanted me on a hefty dose of steroids & mtx immediately (scared of immune suppression during a pandemic). My mistake was delaying and only taking HCQ back then.

I also find chill gel bandages on joints at night a great help, as they reduce inflammation. Rheumy said there’s something to it, as there have been studies done on anti inflammatory effects of cold based on some strange arctic habits of taking a freezing cold dip! (I tried cold shower on my knees & elbows - worked for hours!)

Stay positive & aware!

@LouisaG It takes about 14days to grow a new set of taste buds, and they “retrain” to your habits or your nomadic travels as our ancestors did. This means what might be plain now, eg iceberg lettuce and slightly sweet eg Waitrose dark choc, will if you are on a low GI diet, ie mainly fresh veg, then in 2 weeks lettuce will taste pleasantly sweet, the posh dark choc sickly sweet, and sultanas just unpalatably sweet, as will apples.

You stop being hungry or having “munchies”, go off those delightful pastries as your previously dormant genes have started producing enzymes that sensitise your cells to insulin. The cravings vanish. Pity, as I did quite enjoy the “high” from fine pastries. Now I get my highs from looking at @frogmorton ’s brekkie pictures! 😂

Oh and sustained weightloss with no hunger… I am old enough to remember the fall of the Berlin wall, and I am as skinny now within 3 months as I was then… dropping from 82-86Kg to 66Kg, all bloods related to weight normal, and my excercise regime is just a gentle walk now, and maybe hoiking the Henry vacuum. Nothing like precovid Gym days, where I would be in the gym everyday, bench pressing 200Kg. Now I barely manage to lift 10Kg. My joints & ligaments have recovered a bit, so I can now operate a manual can opener, which was impossible back in november, when I bought an electric and felt miserable. This is important, if you haven’t totally knackered your ligaments then given nutrition, good sleep & a few weeks some noticeable repair does happen.

I will look up Mark Hyman. I mostly follow Prof Tim Spector for the science, and a cardiac surgeon (Dr Monica Aggarwal) for inspiration. She saved her surgical career despite RA, but with exactly the same symptoms as mine (except hers started after pregnancy).

Even down to the weird behaviour such as buying lots of different shoes to find a pair that didn’t make my feet hurt so bad, wondering if the pair I bought online were genuine as the pain would not go away, until I double gel cushioned my feet. Little did I know that nature gave us natural self repairing gel, but when RA destroys it faster than your body can repair it, the nerve endings on the bones get exposed and excruciating pain like glass results. She described herself doing EXACTLY the same, with the entire sequence being identical.( Except for the pregnancy bit! )

My cholesterol, blood pressure & all else are normal, which they were not before.

A recent visit to hospital revealed pulmonary fibrosis with a cause linked to RA, I’m not surprised it’s been suggested to me a few times that I’m zero negative and I have been asking for blood tests over the last fifteen years.

Does anyone have the same problem and can advise?

it’s a grin, honest!

I’m awaiting a scan first then we’ll know more, my lungs are undersized and scarred, the prognosis isn’t wonderful. I expect to get a referral to the rheummy one day. Blimey, will I survive that long????

I’m off for a ride and think about something else.

its a grin, honest!

A hint for others (as had my first routine blood tests today) - the blood test before treatment they really struggled to get the blood and had to use the baby 'butterfly' needle but had no problems today.

The nurse gave me hints so it should be easy next time too - basically make sure you have drunk a lot of water/squash before coming and avoid tea/coffee that day

Surepass123,

There is so much information on the forum, I’ve been on here for nearly twenty years, in that time I’ve known I had OA (since I was young) and never been short of help. If you want to find information you have to search for it not expect others to bring it to you. It is there. I’m sorry I’ve had to join the RA ers but that’s my problem🤪.

its a grin, honest!