Sooo Frustrated!!!

[Diamondpainting]

I had a phone appt last week to discuss my going onto biologics as the only DMARD I can tolerate is up to 17.5 of MTX and I am in constant pain. I was diagnosed wth inflammatory arthritis in 2013 and have been on MTX ever since, with other DMARDs added then discarded. I had been told by my Rhuemy nurse that I was all set to try a biologic, however, talking to the biologics nurse, because I am in pain all the time and only one elbow instead of both hurt (although I do get pain in both - just one more than the other) and a large steroid injection I had 3 weeks ago only gave me relief for about 10 days (it was lovely!!!) that she thinks it more likely that I have osteoarthritis. Also when I saw my Rheumy nurse I had a DAS score of 6.6, but the Biologics nurse scored me at 4.1 over the phone and said she didn't count the rising ESR/CRP blood test results. So now I have to have an MRI on my knees or ankles to see if there is any inflammation (I have osteo in my knees), but she said inflammation could be caused by either osteo or inflammatory arthritis, so I don't see the point in that, plus I have to wait a month for the MRI then however long afterwards for the results as they have a backlog. I was so hopeful before the phone call, now I don't know what to think - should I even be on MTX if she doesn't think I have RA? Is everyone else pain free during the day and only have problems first thing in the morning? I can't help feeling like I am being fobbed off as she wants to refer me to orthopeadics who have already said they can't do anything for my knees. Any input or advice would be most welcome - sorry for the long post!!!

[sylvi]

I would ask them to get you to see the RA consultant not the nurses. They are the real specialist, the nurses. xxxxx

[MadBunny in reply to sylvi]

I agree. In my own experience, it was the consultant who decided to put me on a biologic. He made the initial assessments. I also don't understand how an assessment could be done over the phone , as I also had a physical examination of my joints .

[Gnarli]

So, this nurse diagnosed over the phone and decides she knows better than the consultant and the biologics nurse? No. You need to see the organ grinder not the monkey. These specialist nurses are wonderful in their own way but I think she may be overstepping the mark. It's time to get the bossy pants on and politely insist on the proper treatment

[MadBunny in reply to Gnarli]

My biologic nurse only does an annual review. and if there is any change she refers me back to the consultant.

[Gnarli in reply to MadBunny]

Understood. I'm lucky enough to be reasonably stable and I've only seen the RA nurses in the last couple of years. But, surely, if a person is in pain it needs to be properly investigated and treated?

[MadBunny in reply to Gnarli]

Absolutely!

[Mmrr in reply to MadBunny]

If your pain is unstable then you need to see the specialist. I would ask the nurse to refer me on.

[MadBunny in reply to Mmrr]

Yes so would I.

[charisma]

So sorry to hear your struggle is frustrating and discouraging. I had constant agonising pain with active RA, easing a bit in the evenings; latter is typical of uncontrolled/untreated RA.

And I’d get stiff at intervals all day, relieved by moving around a bit. That too is typical RA.

But the MRI (never had one myself for RA) will show typical changes of any inflammatory arthritis if present as well as typical deterioration from OA etc.

A month is a long time when in pain. Wishing you speedy and accurate diagnosis after that.

If MTX makes no difference, ask if you can stop? x

[Summerrain14]

Oh goodness I am not surprised you are so frustrated! I always thought it was your consultant who made the decision regarding biologics but I am quite new so may be wrong. I know when I was assessed for biologics in March this year it was the rheumy nurse who did the DAS assessment but she contacted my consultant with the results of a DAS score of 6.9 whilst I was still in the room. I had to have a face to face appointment with the rehung nurse for the assessment as needed a joint examination. Bloods never show the activity of my RA so thank goodness the physical joint examination happened. Bloods were sorted there and then for pre screening for the biologics and chest X-ray done the same day.

We don’t have a biologics nurse in my rheumy team so can’t comment on their role but if it was me I would try to contact your consultant as it is not fair to leave you in so much pain and hanging to know if you will be accepted for biologics or not. Maybe give NRAS helpline a call so they can advise you on who makes what decision with biologics so you can be very clear of the process with your rheumy team. Thinking of you. xx

[Hidden]

Oh no don’t accept this as others say contact your rheumatologist. Sorry how can she give you a das score over the phone ?? Secondly esr/CRP are part of the das score. Thirdly das score changes on a daily base it’s the nature of our disease. My worst joints is my ankle ( one ankle ) I stiffen up just sitting down for a cup of tea. My rheumatologist said this is RA. I believe NRAS said they are giving Biologics to people with only moderate disease no more hoops to jump through. There is an article on the website I believe.

[MadBunny in reply to Hidden]

Yes I'd heard that.

[Knit12]

Don’t let the nurse fob you off. I was told when I was first diagnosed that I was border RA and spent over 15 years on sulphasalazine with many flares and steroid injections. Then 3 years after some major changes in my life I had the biggest flare of my life.

Sulphasalazine stopped working and nothing seemed to control things. 3 years later I’m still struggling and waiting to decide my 9th medication.

Don’t know why but it was the realisation when my consultant (who is excellent) said you have full blown RA I think hearing it out aloud shocked me. I know it sounds stupid but for all those years being told borderline.

Not ever treatment will work but it’s important that we are given the chance to try and not let our joints get worse x

[Diamondpainting]

sylvi MadBunny Gnarli Mmrr charisma Summerrain14 Hidden Knit12 Thank you all for your replies. It will be many months before I will get to see a consultant - the present consultant is 6 months wait and she is leaving next week, with no replacement. Therefore the Rheumy and Biologics nurses will be running the show. My Rheumy nurses are fabulous and I have already had chest x-ray and the go ahead from the hospital pharmacist, hence the huge disappointment. Hopefully I will get to speak to my nurse this week coming. Anyway, thank you all once again for your thoughts and support 🙃

[Hidden in reply to Diamondpainting]

No one should be left in pain .. my cousin and husband are doctors this they say is the first rule they are taught.. where the compassion and empathy?

[MadBunny]

Blimey that's not good! I hope that something is sorted for you soon xxx

[Diamondpainting in reply to MadBunny]

Thank you!

[hopegalore20]

Hi Diamondpainting, I agree totally with all your other replies.

How can they carry out an Assessment over a phone, not possible.

It does sound like you need to see a Rheumatologist, before increasing any Medications.

Face to Face analysis is needed.

Good Luck.

Keep us Posted.

Stay Safe.

[Diamondpainting in reply to hopegalore20]

Thank you hopegalore20. The original decision to put me on biologics was made at a face to face with my Rheumy nurse, the backtracking was a phone appt. by the biologics nurse. Unfortunately, my consulatant is leaving next week and there is no replacement for the area, so I am in the hands of the nurses. My worse fear is being referred to orthopaedics as they are notoriously back logged and have never been very helpful - except to refer me back to Rheumatology

🙄

[hopegalore20 in reply to Diamondpainting]

Hello Again Diamondpainting,

It just sounds as though you are being passed from“pillar to post”.

You need help now to deal with the pain that you are enduring.

Are you able to travel out with your area if there is a Rheumatologist that can help you in the meantime until a replacement is found in your zone?

You cannot wait & wait, pain does not stop.

I wish you all the best.

Good Luck x

[Diamondpainting in reply to hopegalore20]

Thank you - I think this is something I will have to discuss with the nurse next week. There must be a consulatant somewhere that I can be referred to!