BBC Radio 5 Live phone in show. Talking about Rheumatoid Arthritis. Begins at 9am

[wishbone]

It's just started.

[Ruth12345]

Thanks. I wonder if its on catchup. Ill have a go

[Blackwitch]

Good Morning everyone. I think it's been really good, especially highlighting how little is known about the condition(s) & that it's also mostly a hidden condition. Points raised have also mentioned that it's not just a 'few aches & pains'! It can hit all age groups, how unsympathetic employers can be & also my worst fear - shaking hands!! 😱

I think Nicky Campbell & his callers have done well to highlight this (& I didn't used to like him). Have the best day you can everyone. xx

[wishbone in reply to Blackwitch]

It was pretty good overall, but I thought it could have placed more emphasis on the harm RA can cause to heart and lungs, which received but a brief mention from the specialist. When I told friends and people I know that I have RA related lung disease they looked at me in disbelief. I think the programme would have hit home harder with the uninitiated if it had highlighted organ damage, which although not common, is one of the more serious conditions, and major differences between RA and OA, which were mentioned more than once throughout the programme. There again maybe I'm biased.

By the way, I still don't like Nicky Campbell.

[Blackwitch in reply to wishbone]

Yes, I didn't hear them mention heart & lungs at all but probably was distracted at the time. I have lung nodules which were picked up on a CT scan of my abdomen when I had a bowel blockage. They checked me with 2 more scans 6 months apart but they were left alone after that. Good fun this RA! xx

[wishbone in reply to Blackwitch]

Along with scarring a CT scan also discovered a single nodule in my lung. A follow up CT scan one year later could detect no change in the nodule, so as with you, they seem happy to leave it at that.

Yep, RA sure is good fun!...I've never had so much excitement in all my life.

Bet that bowel blockage was a barrel of laughs!

[Blackwitch in reply to wishbone]

Yes, that was fun. I can't really remember the finer details but it was over the Christmas period about 2.5 years ago. Had a blockage, was constipated for 11 days going backwards & forwards to GP/Out of Hours/A&E. Eventually admitted to be kicked out then an emergency admission the next day. Had CT which showed large mass. I remember a stoma nurse drawing diagrams on my stomach & telling me all about colostomy bags but told me not to worry because she would come and see me after my op!! Anyway, it all went well, mass & part of colon removed, no cancer but left hospital with screaming pain but they managed to join me back together so no bag. Nobody cared about my back pain, RA & Fibro! It was certainly not something I ever want to go through again. It's not just employers who don't care about hidden disability, the majority of the medical staff didn't either. xx

[wishbone in reply to Blackwitch]

Nightmare time by the sounds of that lot! The only consolation there is that you didn't need a bag. I also experienced problems being admitted when I had septic arthritis in my hip some 3+ years ago.

Not quite as hilarious as what happened to you, but well worth a chuckle or two...After I was discharged following the hip infection and decided to take the law into my own hands and stopped all RA meds because I was fearful of getting another serious infection. A few weeks later I was experiencing the mother of all flares. I also developed a nasty cough, which was probably when my lungs got damaged. On top of that I was hit for six with some seriously painful sciatica and became pretty much housebound. The icing on the cake happened when the morphine sulphate tablets I was taking to combat all the pain went and made me constipated. Trying to go to the toilet with that little lot going on was a bunch of fun as you can probably appreciate. Can't say I want to experience that again either!

[Simba1992 in reply to wishbone]

Would be interesting to know statistics on how much organ damage is caused by RA meds compared to just the effect of RA. Inflammation is bad and should be kept down as low as possible but using aggressive treatment methods on everyone even on those with very low inflammation markers, may infact not be such a good idea? It is a well known fact that Mtx causes lung issues, most commonly nodules as well as liver problems, thyroid function problems after two years of Mtx use are very common and so on. It should in my opinion be an important issue to talk about, how to minimize the the adverse effects of meds, minimize their use and always take the individual situation into consideration since RA is not the same for everyone and can in fact be controlled with different treatments, depending on a multitude of factors.

[wishbone in reply to Simba1992]

Hello Simba,

Very much a grey area by the seem of things. Unfortunately for me I was diagnosed with RA related pulmonary fibrosis 2+ years ago. It was holding steady up until my latest lung function test earlier this month when it showed a very slight deterioration compared to the last test, which showed a very slight improvement over my initial test. Not what I wanted to hear, but it could have been worse I suppose.

Anyway, I was taking mtx when diagnosed until my chest consultant advised me to stop taking it, not because it could make my condition worse, but mtx can cause lung issues of its own which could mask what's happening with my particular condition. He didn't say exactly what issues mtx can cause, but it's definitely something other than nodules.

I also found out that the inflammation thing is more complexed than I thought. According to my consultant the inflammation damaging my lungs is different to the inflammation that affects the joints. He explained that the former is the same, or very similar to the scar forming inflammation you get after you cut yourself. The big problem here is while RA joint inflammation will respond to steroids/immune suppressants, scar forming inflammation will not! That said, it's obviously better to keep RA inflammation under control as it might be possible that it initially gets into the lungs and perhaps kick starts the scar forming inflammation...I'm just guessing here but who knows?

Interestingly, I'm seeing my rheumy later this month, and as I have another non RA related (I think?) health condition that's causing yet more serious issues, she wants to start me on one of the new JAK Inhibitors, which we hope will alleviate the side effects I've been getting from other meds. Now it just so happens that when I told my chest consultant about this he became quite excited and informed me that there's current research, and some hope, that these new JAK Inhibitors may have a positive effect on some lung diseases, including what I have. Apparently clinical trials have yet start, so if all goes well and I don't experience any side effects with the JAK Inhibitor then who knows what could happen. On the downside, he did say there is a possibility it could make my lung condition worse. Anyway, I think I'll go ahead and give this new med a go, but as I have this other problematic health issue besides RA and lung disease to contend with, I probably need something resembling a minor miracle to sort me out! Still, you never know?.....................

Apologies for the long post, just hope you find some of it interesting.

[Simba1992 in reply to wishbone]

Hi Wishbone,

Really nothing to apologize for😊Sorry to hear about your lung issues.Its very hard to know how ones body reacts to these meds and there really is not enough follow up or studies that would be of help. Jak is a new one and I hope it will help.

Best wishes, Simba

[BlightyFiveStar in reply to Blackwitch]

I am so with you on the shaking hands nightmare- I avoid it whenever possible! People don’t understand how painful it can be! I will try to listen on catch up.

[Mmrr]

I'll try catch up later - thanks !

[Hidden]

Thanks wishbone just seen that, try catch up later but good it's getting sime media coverage at last 😄

[BlightyFiveStar]

Thanks for highlighting

[MissMinto]

Does anyone have a link for this - I've looked but can't track it down.