Update on appointment with rheumy on Tuesday this week

[Helzbells]

So quick recap. Diagnosed with anti-ccp positive RD September 2016 - riddled with it according to rheumy. Put on triple therapy eventually March 2017 left with no treatment as couldn't tolerate four dmards. Complaint, change of rheumy consultant who I saw this week.

So:

Have I got RA - he's not sure and now wants to row back from previous diagnosis. My bloods are normal. I have swelling everywhere but it is around the joints not in them.

He appreciates I think as I have the same swelling now I did then I question the original assessment but he says nothing can be done. That doctor said there was inflammation.

He says:

Do I have some symptoms of RA yes I do. Might there be inflammation they can't see on ultrasound. Possibly. My response to steroids suggests there may be

Can they treat me for RA - no as they can't see any inflammation.

Am I in the appalling pain I say I'm in - absolutely no doubt about it. Probably caused by pressure of swelling on nerves

What's wrong with me - no idea. It's not fibromyalgia. Could be RA, could be another inflammatory arthritis, could have been a one off episode that left residual pain and fluid.

Has he seen people like me before. Yes it will go one of two ways. A year from now the pain will have gone and I will be fine OR I will be lit up like a Christmas tree with full blown RD.

Actions: I'm to take regular pain relief every 4-6 hours and not miss a dose for a week. I am then to take a new wave anti-inflammatory for two weeks. Then move on to nerve pain reducing drug. He will see me again in one month.

I am to have blood tests and another MRI to check for inflammation of the sacro-iliac joint.

*My employer has already taken this to mean I've been lying and malingering for a year and has started disciplinary procedures for dismissal as he thinks my protected status has now been removed

[spzgirl51]

Hello , my touch screen is playing up so I am sorry about the strange layout.

I think it is very difficult to get accurate diagnosis of auto immune issues? I know there are many different types? Take courage from the fact that your new doctor is seeing you so soon.

There is no doubt you have in a lot of pain for a long time. Pain is pain even if the labelling of it may change over time?

Reading many posts on health unlocked in this year , I think it is a wonder we don't all need a crystal ball and a time machine to work out how best to treat our aches and pains!!

I know that is not much comfort for you but at least the consultant is listening and taking note of what you say. I know stress makes pain worse.

I really hope the new treatment plan brings you some relief.

Best wishes xx

Helzbells

[nomoreheels]

Mmm. Not particularly productive from the point of view of having a label but let's see how this protocol goes. Intrigued what the pain relief & new wave anti inflammatory is, the nerve pain reducing drug too!

I wouldn't be bullied by your boss, I'm pretty sure you're covered under disability with the pain you're experiencing even if there's no name for it just yet. I'd seek advice on that one, check out what "protected status" actually covers.

[Helzbells in reply to nomoreheels]

I can't tolerate most pain killers so I'm stuck with the cocodamol but I have to take it every six hours and if I can't take it because I'm driving I have to replace with paracetamol but I'm not to miss a dose.

Can't remember name of anti-inflammatory begins with E I think. Bog standard nerve pain drugs they just aren't sure which one they want to give me.

If pain still continues then they will look at super strong patches

[nomoreheels in reply to Helzbells]

Anything with paracetamol in it works more efficiently if you keep your dose up so maybe that's his thinking.

Does etoricoxib sound familiar? It's a COX-2 NSAID & the one I'm prescribed.

Nerve pain, the more commonly prescribed are gabapentin & pregabalin, there are many others. I've tried the former & currently prescribed the latter.

I'm also prescribed Butec transdermal patches (or an alternative brand is Butrans). They're buprenorphine, I'm higher doses are under the name Transtec but there are others, Fentanyl (duragesic) for one.

I hope whatever they choose for you you respond, better still further testing reveals something solid they can diagnose you with.

[Helzbells in reply to nomoreheels]

Hiya spot on. That's the NSAID the patches you are on are also what they are talking about. They've suggested gabapentin again which I didn't take before because of the scary side effects. Also pregabalin but I'm allergic to that. I'm also allergic to amiltryptiline and nortriptyline so it's a difficult one. Only thing I'm not allergic to is cocodamol

[cappygal]

Hi Helzbells have they re-tested your anti-ccp again since the original in 2016?

[Helzbells in reply to cappygal]

Hi yes they have at my request. It's now normal

[cheshcat]

I am curious how your current anti-ccp is too. My understanding is that this was the most reliable blood test to confirm RA? I am sero+ too and my rheumy said it is really import to start dmards to prevent damage. I also have a family history of RA. I am wondering if I have a second auto-immune but my rheumy sees how I do on the luflomide and go from there.

[Helzbells]

So back in June 2016 an anti-ccp test came back slightly raised and that's what triggered my referral. I also had a grandmother with severe RA. In September 2016 my anti-ccp had gone higher. Still not massive but it was climbing. In August 2017 it had decreased to just above normal. And in October 2017 it is 3.4 (anything below 7 is normal).

So yes, they were convinced I had RA because my anti-ccp was raised and it's a very sensitive test.

When I was seen at Bristol however they told me they didn't care how high my anti-ccp was without inflammation I didn't have RA.

It has returned to normal without treatment.

Confusing!

[Helzbells]

It's also strange to think that if I could have tolerated the dmards I'd still be on them and no one would be questioning the diagnosis at all.

[spzgirl51]

I just don't understand how the experts say without signs of inflammation you don't have ra? I thought it was a disease of peaks and troughs, where you can have flares with increased disease activity or be in remission and have very stable blood results?

I take your point that if you had tolerated the initial drugs offered; they would've congratulating you on how well your disease is being controlled by them and they would be encouraging you to stay on them because you don't want to increase your pain and cause a flair?

Perhaps it is a blessing that they didn't work and you will discover a different root cause for your pain? One that will respond to the correct treatment?

PleaseGod, your new consultant and your gp together find something that works for you. Bless you xxx