A cautionary tale, remission?!

Just over three years ago I was having horrible face rashes which the rheumy said was lupus. They said I was in remission so I could come off infliximab and methotrexate - just like that! Within a month my RA was much worse and my knees (OA) wouldn't work. I became virtually housebound.

The rheumy started to play hide and seek with me, first hiding behind scan appointments for which there were long waiting lists. She started to postpone appointments.

In the meantime being an enterprising sort of person I got my GP to refer me to a dermatologist who laughed off lupus and referred me to a photo sensitivity clinc. A week of early mornings for tests and they'd excluded lupus completely and identified allergy as to do with the perfume in skin products including sensitive skin sun cream.

The rash has not returned, I use E45 or Dermol and a broad brimmed hat in the sun. However my RA is raging on, better controlled by ritiximab for most of the six months, the OA damage to my knees is half remedied, one replacement in November, the other in about 9 weeks, fingers crossed!

I say this is a cautionary tale because a lot would not have happened if we'd checked out the reason for my skin rash first. And if the dr had suggested a cautious withdrawal of the meds.

I insisted on a second opinion and am now seeing a very thoughtful, experienced consultant. I think that if the second knee goes as well as the first I may be somewhere back to where I began.

My conclusions- don't let Drs mistake remission for cure.

Don't assume every problem is RA/meds related.

Don't hesitate to ask for second opinion

Don't put off a joint replacement if they advise it.

Don't be like Cathie!

19 Replies

  • All very helpful, Cathie. Thank you. I know I have become much more sensitive to products since getting RA and Sjorgren's. Whether it's the disease itself or the drugs, I don't really know, but I have to be very careful with face-creams, detergents and cleaners.

    I do hope you are back on track soon.



  • Thanks ,Jo. We're having a couple of weeks in the highlands in the new house which is great. The underfloor heating AND the views are stunning. We've had a couple of inches of snow the night, but were stocked up and don't need to go anywhere!

    I've still no news of he knee op, I see rheumy next week and hoping for some relief from awful bruising inflammatory pain. Just got to keep distracted. Ideas for paintings, but lack the push

    I hope you're well - and you can avoid potions that make you react!


  • I heartily agree. Rhuemys are human and are prone to make mistakes like the rest of us. Question and get assertive if required bcos this is ur health and life they are dealing with.

  • Yes she's helped to wrench more than two years of my not young like

  • The negligent one was inexperienced and hasty. I had a bad feeling from the start. All the previous ones ve seen have been k, I prefer the cautious approach.

  • I have understood that remission achieved with RA meds is called " clinical remission" in the majority of patients, very few reach real remission and this is the reason why doctors are adviced to continue with the meds also during "remission".

  • Yes that's what I understood. Couldn't get this woman to agree. I will never see her again. Mine was medically induced remission and I want to get back there!!

    At the time a few people urged me to complain, but my husband was reluctant as we wanted to stay in the department. I'm glad I focused on getting better rather than complaining, although I know that is necessary sometimes.

  • Negligent one is right, or perhaps hugely inexperienced? I've made it to remission a few times now, and have been prepared to give reducing drugs a go. Each time my rheumy has proposed dropping a single dose of a single drug every 3 months - not the whole lot all at once! (And each time I've not made it past the second drop in dose, so have gone back up).

    Why oh why can docs never accept that we know our own bodies pretty well? And listen to us and out gut instincts.

    Hope new house and new knee are the key to many happy years ahead.

  • Thank you! Its a holiday house - justified (!!) by the difficulties I have when going out of my comfort zone. We have wonderful huge windows overlooking Loch Broom. Snow and little birds have been coming an going and its helping me to cope with this difficult period waiting for the knee and overdue rituximab. At least the weather and comings and goings of our local sheep who wander all over the road are distracting me from feeling bruised all over.

    I wish now that I'd resisted that doctor earlier, but am very wary now. I think the idea of remission is quite a dodgy one actually.

    Hope you're well and happy

    Cathie XX

  • Hi Cathie, I spent last winter in Ullapool on Bridge house arts portfolio course. wonderful area, very arty.

    Mall x

  • Hi cathie your in a lovely part of the country , I'm further down the coast from you Oban , another lovely spot

  • Hi pop smith,

    I stay in Oban too. Yes it is a lovely spot, a bit far to travel to see a rheumy though.


  • Yes is certainly is ,i think I could walk that road t Glasgow blind folded now I've been up and down it that much in the last couple of years

  • Oh yes, Oban is lovely! Its snowing again here, we have to go back to Edinburgh at the weekend so I can attend a rheumy appointment. But we will be back!

  • Cathie I'm familiar with your story as you know. But grateful for the refresher now because I chose my new rheumy and am now regretful that I didn't do my research better. My cautionary tale is almost the opposite of yours but the relevant part is that I need to be brave and follow my instincts which tell me that my rheumy is wrong to say that I don't have a connective tissue disease and refuse to let me try further immunesuppressant treatments just because my autoabtibodies are currently negative. I actually quite like him and he is experienced but also almost autistic in his preoccupation with bloods and criteria.

    He is even unsure now that I had RA because the rheumy who diagnosed me failed to make a note of which of my synovial joints were stiff and swollen. I explained that, as it was my body this scary stuff was affecting, I recall exactly how it felt and which joints were swollen. He agreed to take my word for it because I had photos to support my case. It doesn't get me further now because I have had such severe reactions that they are classed as allergies and in my case all four DMARDs are now ruled out.

    Like you I've done my research and I'm reasonably certain that I have had seronegative Sjogrens all along but I'm being batted to and fro between rheumatology and neurology still with no firm diagnosis - just mild RA in remission and possibly mild MS. Meanwhile the neuropathy is slowly progressing and my nerves are dying as my feet, mouth and left eye have loss of sensation. Because of this I lose my balance a lot and feel disorientated. So mild seronegative RA in remission doesn't do much for me really and I'm grateful for the reminder you've given us to trust our instincts and find doctors who will look at the bigger picture and not be too rigid. X

    Ps moved into a new cheaper rental flat today in Broughty Ferry - hoping I get more clarity from the Ninewells hospital nearby. Broughty Ferry is wonderful!

  • I found my Dr Right (hopefully) through someone on this forum who was also seeing him and was, in a measured way, quite keen on him.

    If I'd known the damage this previous dr would do, I would have acted faster. Im not keen on becoming over-medicalised for all sorts of personal reasons, so I try not to do research wider than what I need. My main remedy is distraction - even for pain - but it is difficult to convey how hard it is.

    At the moment, just watching rather a lot of snow falling which has got to be something!

  • Perhaps they should reserve the word "remission" for rare spontaneous recovery and freedom from pain and inflammation., and use the term "under control" when "clinical remission" is achieved by drugs. My friend could probably use the word "remission". He is on 10 mg Methotrexate, but usually forgets to take them. He has been warned that it will come back at some stage, but there has been no sign of it for 7 years!

    Your holiday home sounds utterly idyllic. In the summer, I would be nervous of midges ( and clogs I act like fly paper for anyone within 100 yards, but at this time of year the clean air,snow, birds and starry eyes would be blissful.

    I do hope you get the knee op soon. The idea if mine being re-done will be reviewed in e I've had the treatment on my feet. They are so painful ( tendons, nerves and muscles - nothing operable), that there is no point in my going through the trauma of knee surgery if I still can't walk far because of my feet.

    If you are looking at the landscape, I'm sure some art is gestating . Snow is very hard to paint without cheesiness.

    Jo X

  • Ha! Very interesting post. After my last rituximab infusion, my face suddenly became red and itchy! I thought it was the steroid but I don't think it is. I haven't changed face cream or anything. I'm trying to keep a diary now of what I eat, and what I do to my face! I was also told two years ago that I was in remission but there was no suggestion that I come off med. I'm still having the RTX which is enough for me. What upsets me is that we are told lots of different things from different doctors /specialists. This is so unhelpful! Best of luck with everything.

  • It's really hard! The sorry fact is that the doctors and specialists do not know or understand why the meds are helping or not helping or why the side effects differ from patient to patient. So it's much a question of just trying out medicines and combinations and trying to keep a control on how toxic they are for your body.

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