.My July 24 appointment was postponed till Feb 25 as the rheum was ill.
Yesterday I received a letter from the hospital to tell me the Feb appointment had been postponed to July 25. This will be a gap of 18 months since my last appointment.
I had my 2 first Rituximab infusions in June this year which seem to have worked well but surely by next July this may well have worn off and the rheumatologist will not have seen me or requested blood tests to check if the infusion has ‘worked ‘?
The nurse helpline number is of little use as the callback wait time is now 7 days - up from 48 hours.
Just wondering if others have experienced similar delays and have any advice? I do have the rheumatologist’s secretary’s number but would only call that if I was in severe pain- although on the only occasion I’ve used it- a year or so back. The consultant got back to me very quickly, we spoke in the phone and she prescribed steroids,
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Bookworm55
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Hi its not good when you hear this it's terrible ,I know a few with other issues waiting now 18 months for an operation as well I'm lucky I have got the 12 months f2f appointment still
Always been 3.6.9.12 months appointments
As above there is lots like yourself getting postponed
Maybe they think your stable etc
You could phone the secretary to get a phone appointment if suitible
Or f2f quicker
I found as well getting in touch with secretary does get a respond I'd maybe do that
With waiting and not doing that
Wots to say the july 25th gets postponed as well
Who knows
I've had delays with different issues and phoned the secretary and got good responses
Do you wait or respond is a decision to make
If your doing ok maybe wait
Hopefully next one does not get postponed
There comes a time when enough is enough as well and excuses are not good enough
Hope things turn out ok and your stable
The nurses line I've gave up on mine to much stress
I had a F2F in Oct 23, as I had severe pains in my knee and couldn’t weight bear. He referred me to surgeons and said he wanted a F2F in 6 months to review. I just received an appointment for January, which will be 15 month since I last seen him. I do phone the helpline when needed, and ours usually respond same day, or next day.
I would phone the secretary and express concern about the need for bloods etc, and reassurance that the next infusion won’t be delayed.
I honestly think in a lot of areas regular consultant appointments are a thing of the past.Not what we want to hear..but it seems to be a fact.
As your first set of Rituximab infusions was six months ago..I think the best action you could take is to call the rheumy nurse’s helpline & ask when you are scheduled .your next infusion. Asking for a treatment directly may help.
Yes you might have to wait for a reply, but unless you ask…you will probably not hear anything. Rheumy departments are so busy, we need to contact them …the luxury of being called forward to get regular treatment sadly seems no more.
It’s no good sitting at home waiting We have to become proactive & ask when we need help.
Can you email the consultant's secretary? I find emails get a quick response. You may not get your appointment moved forward but they might be w able to address any worries you have. Good luck
I was diagnosed 20 years ago. I have only seen 2 consultants in all that time, I have been seen regularly every 6 months, and in the last year, every 3 months. My current consultant is a lovely lady. My RA is very unstable at the moment and today I’m having my 5th appointment this year. I don’t find the nurses very helpful. It sometimes takes them a week to get back to me! The secretary is very good though, and in response to an email last week, she has put me in for steroid injections today.
I see Consultant then specialist nurse every six months. TBH I think I’d prefer to see nurse unless I have an issue as it’s just a chat really. If they offer Patient Led Innitative in December I think I’m going to agree or even ask for it. Personally I’m fed up of the doubling up with GP and it’s just a waste of their time and mine. It would then release appointments for those in need.
That's not good although if your infusions were in June a July appointment is not ideally timed to see if Rituximab is working for you.
I've been put on the PIFU (patient initiated follow up) pathway as my RA is deemed "stable" and I am supposed to get an appointment with my consultant every 12 months. However I can contact my Rheumy team anytime asking for help (not by phone now it's a form to complete). I think these days it's very much a case of us having to ask for help when we need it as the Rheumy departments are so overwhelmed.
Yes your Rituximab may indeed start to wear off before Feb 25 (I used to have infusions every 6-9 months but some people can manage a year or longer). Have you been given blood forms for monitoring its efficacy? I used to have a biologic rescore appointment with the nurse after 3 months before which I had to get bloods tested. If nothing like that has been arranged for you already I would contact your team, ideally by email/in writing and ask for some forms and how often they wish you to get tested and when your rescore appointment will be. You could also ask when your next infusions are scheduled.
I hope Rituximab is working well for you, as it did for me.
Thank you Lolabridge this is very helpful. I agree that the scheduled appointment last July was a bit close to my having the infusions which was why the hospital ‘postponing’ it seemed to be going to work better. I think email is a good idea - I’m sure I must have the address somewhere!.
Follow-up.! A Google search has revealed that my hospital trust does have a Patient Initiated Follow Up programme in the Rheumatology Department. (PIFU) but adds that the leaflet about it is only sent to the patients deemed ‘suitable’. I’ve read it anyway and hope I can use the info given to email the department. I don’t think it would have been sent to me as my condition has not been stable for the last few years.
It’s all so variable and arbitrary these days as to when you get to see your rheumatology team. For 33 years out of 35 I’ve had very regular appointments spaced at about six months apart at which I’d see either the clinical nurse specialist or, if in trouble, the consultant. That worked very well as I’ve got severe RA which loves me too much to leave and causes fairly regular problems.
Having said that over the past 18 months the appointments have not been forthcoming and if I’ve need help I’ve emailed the team and usually had a reply within a couple of days but it doesn’t give me the same comfort and support as previously. My usual consultant has retired and most of the nurses have left or are now part time which leaves a gaping hole in the care plan of most of their existing patients and is, sadly, the way things are going. Not what we all need with a long-term, persistent condition!
Thanks Amnesiac3637 the way your experience has changed sounds very similar to what I’m experiencing. From other replies too it seems this is the way things are going. I can cope with this as long as there is always some way available to contact the rheum department and that there is sufficient support for those newly diagnosed or with a sudden downturn in their condition.
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