Clinical remission?

[Shazz10]

Hi all

I have been off steroids for nearly 2weeks and feel my symptoms, burning pain and reduced mobility in all joints returning gradually. I had appt with rheumy nurse yesterday and discussed staying off or starting steroids again and increasing mtx. Anyway I get a phone call this morning saying congrats you are in remission no more steroids no more appointments needed for 6 months. Just carry on with mtx. I asked her how come my pain etc has increased if in remission and she said my bloods show no inflammation and my DAS score is just under the limit so I should be glad that I am in remission. The low score I think reflects that I didn't report any swelling in any joints just pain. I have always felt that it is only the steroids that have helped me and being off them and feeling the pain returning has scared me...I'm nowhere near in remission in my opinion and wonder if me being off steroids only 10 days would my bloods actually show an increase is esr or crp as yet. When I was reallybad and hospitalised my crp was as high as 158. Does anyone get remission after just over three months of mtx? I am so scared of this all returning to how I was in march not being able to get off the loo unaided! I'm questioning the diagnosis as was told sero negative RA where both me and the gp felt it was pmr but as I'm under 50..just..the rhuemy said no.

Anyway sorry for the rant...but am confused that as I feel far worse than I did at my last appointment 6 weeks ago being told I'm in clinical remission is confusing... especially when it's supposed to be good news.

Sharon 🌸

[Hidden]

That strikes me as a very odd use of the loaded word 'remission'. I have psoriatic arthritis so the DAS score does not apply, but if my condition were to be assessed on the number of swollen joints plus inflammation as measured by ESR and CRP then I would have been in remission for nearly 3 years now. I really don't like the sound of 'congratulations' and 'be glad', that's just patronising.

What seems more likely is that the clinical signs are not too bad just now. Though I too would wonder about the effect of recent steroids. Pain alone is not a great indicator of how well-controlled the disease is so I guess that you'd agree that things are looking up a little, in some respects anyway(?). But your basic treatment hasn't changed, you're still on Methotrexate, so why are they throwing words like remission around?

I don't know what you can do. I'd write down everything that was said in the phone call while you can still remember it accurately. Also the exact date you stopped steroids. And then wait and see what happens. If your inflammation levels creep up, if swelling and tenderness increase, if your mobility / ease of movement deteriorate then get back to the rheumy dept. and provide them with a few irrefutable facts. Pain and fatigue are relevant (very relevant to you, obviously) but they may not be seen as signs that the disease is getting more active again, very much depends on the rheumy.

Yep, I think this is an unfortunate use of the 'r' word. I think we quite reasonably expect a lot more from it than just 'some improvement'. You could of course write them a letter asking them to clarify what exactly they mean by this term and suggest that in this instance it has been used rather loosely. And you could also find a different rheumy team .... I might be pondering that option at least.

[Shazz10 in reply to Hidden]

Thanks postie...yes I think a wait and see approach is best for now. I'll be so glad if the disease is under control obviously I just felt it was a case of you r in remission now so see ya...the nurses attitude was very patronising saying I should read up more about my illness so I understand it better! Anyway o intend to see my GP this week who so far has been great and maybe I'll feel more reassured about where I'm at. Thanks for replying xx

[Lucy11]

Hi Sharon,

People definitely can get therapeutic response after only 3 months of treatment. All diseases present differently and if you were caught in 'the window of opportunity' chances are even better. Everyone reacts differently to the meds and everyone is at different places in their disease. But if the pain and burning feelings are coming back then I'd rather think that your response isn't what you would consider good enough.

Throwing around 'remission' is a bit surprising to me as I would think the appropriate thing to say is that she feels you are well controlled at the moment, ask if you felt the same way in which you would say, no; and then discuss how to move forward.

Not sure if this helps you but when I was in early days of treatment and had a flare it was never as bad as it was before I started treatment.

Can you phone the helpline and tell them your concerns? I'm sure someone else will chime in with their experience of CRP. (Mine are never raised so I can't help you with that)

I hope you are indeed better and the pain subsides soon.

Best

Lucy.

[Shazz10 in reply to Lucy11]

Thanks Lucy...yes I could understand if I was told things were under control even if I didn't feel any better to know that my blood showed positive signs is brilliant news...but confusing when I feel worse than in my last visit .

I was glad to hear that when you had a flare it wasn't as bad as before treatment as that really is my worry. Having stopped steroids I was dreading it returning to the level of was at the beginning. But hopefully that won't happen.

Thanks for replying and I guess I'll see what my bloods show and how I'm feeling in a few more weeks without steroids.

Sharon 🌸

[Damaged]

Hi Shazz10, I am so sorry the 'health care person' is so uninformed. Remission with RD is not like cancer. The treatment continues as does the disease. When they use the "r" word they refer to inflammation only. Sadly if you have moderate to severe RD it means very little to you. Doctors focus on inflammation because of the destructive nature of it. Like you my inflammation is under control but I feel terrible. To congratulate you is offensive and simply shows a complete lack of understanding. Talk to your Rheumie.

It is frightening to think this is as good as it gets. But you never know what is around the Conner. New discoveries are made all the time.

[Shazz10 in reply to Damaged]

Thanks damaged. If this is as good as it gets then I'll have to accept that... I understand that my bloods show the inflammation is under control but that's been the case since I was on the steroids. Now off steroids and only for 10 days with worsening symptoms..how can they be sure that I'm in remission. It's a bit baffling! Anyway hopefully my GP will shed some light on it next week and fingers crossed I continue to show no signs of inflammation which I'll be delighted with...pain or not. It's good to hear your inflammation is under control too...but sorry to hear you still feel terrible...it's unfair isn't it.x.

Thanks again

Sharon 🌸

[Lucy11 in reply to Shazz10]

Shazz10, I feel that you are too early in your disease to think this is as good as it gets. 3 months in and you're showing signs that inflammation is down is a good thing even if your nurse was less than cool or helpful and it saddens me to think it all comes down to saving money. I hear your concern with thinking it's only from steroids but often people have flares days after they stop and have to immediately go back on them. The pain sucks and if it continues then I would definitely consult your doctor.

Just as a side note although remission means different things to everyone ACR/ EULAR has published specific criteria for defining RA specific remission and it doesn't only include inflammation. It appears that some doctors in the U.K. don't follow it. My doctor definitely doesn't insist or imply that having my inflammation under control is enough to warrant remission but we are always striving for it and have reached it even though I have erosive RA. I think everyone should strive for it even if it means something different to you than it does for me. You're so new to all this and may have to tweak your meds again but remission is possible.

Although there may be a few different versions to this criteria it more or less includes these:

1. Duration of morning stiffness not exceeding 15 minutes

2. No fatigue

3. No joint pain (by history)

4. No joint tenderness or pain in motion

5. No soft tissue swelling in joints or tendon sheaths

6. ESR rate

I find the best advise on here for people dealing with this is is to be bold and commission for your care. It's really hard to do when you're in pain and feeling rubbish but as Postle2 said if you find the way to be assertive and still let them feel that they are brilliant helpful people it can go a long way in feeling well cared for. And if that doesn't work look for someone else who can help you.

I wish you the best.

Lucy.

[Hidden]

I think Lucy11's and Damaged's responses are spot on. I'm still shocked by your post. Scares me that rheumatology departments are putting out such confusing messages ... seems like fobbing off, playing down the disease, generally minimising its impact and seriousness. I think they're trying it on and if you state the obvious strongly enough and frequently enough your care will care continue to be adequate at least. If not, seek a second opinion.

My fear is that there's a trend towards minimising the severity of inflammatory arthritis to cut costs. All we can do is to assert ourselves as politely, convincingly and authentically as possible.

[Shazz10 in reply to Hidden]

Definitely think your right. I felt like the phone call to me was like your fine now...off the long list we have. successfully treated...see ya...on to the next one. You say your not well but your bloods say different so we don't believe it's as bad as you say...byeee.

That's what got to me most I think...feeling just discarded and told I should be happier about it. I feel less annoyed today thanks to all on this site and intend to follow up with my GP and hopefully it is correct that im in remission or under control or whatever label they wanna put on it.... inflammation free is good news...now pain free that would be fantastic!

Thanks again postie x

[Damaged in reply to Hidden]

I have noticed a trend towards younger people affected by this devious disease. That is bad news for them but I also feel this is good news for us.

If there is a way to reverse this condition they will be the ones to discover the solution. The advances made with nanotechnology is astounding. Soon open heart surgery will be a thing of the past. Nano bots can go directly to blockages and clear them, they can be used to destroy cancer cells without surgery.(I strongly believe if open to oxygen , cancer spreads) . A group of young tech developed these arm sensors. Twins ,one with Parkinson's. The unaffected person can feel exactly what the tremors are like. Now if they can develop bands that transfer pain we could have a new super power rofl 🤣