.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,
Written by
Bookworm55
To view profiles and participate in discussions please or .
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.
Is there a rheumy nurse helpline you can contact? I have a number but it just has an answerphone telling you to email! 😅Although they do respond within a week normally. Also, I thought some drugs require regular blood tests that you have to arrange through your GP, maybe not yours, I don't know. If you can't get through to rheumy dept, try your GP maybe?
When I was on methotrexate or leflunomide I knew when to have blood tests - sometimes I had them at the hospital and sometimes at the GP surgery.. I had loads of them before I went on to amgevita jabs (June 2023) and then more of the same before my infusions (June 2024). I have used the nurse helpline several times over the 8 years I’ve had RA for tweaks in my medication etc.
What I feel I need now is an overall plan from my consultant- ie how often I need to have blood tests (have only had one - and that was one I initiated with my GP -since the infusion) and at what point I will need another infusion. These questions and others are all ones I expected to discuss with the consultant but atm the first chance to do that will be at least a year after the infusion - with no blood work to assess it’s impact and efficacy.
Can you contact the infusion team. I make my next infusion appointment when I'm having my infusion and they advise whether bloods are needed before I'm next seen. Glad the last infusion helped
🙈 I have a direct dial number for the infusion ward. Maybe play dumb tomorrow and ring the hospital switchboard. You don't want to loose ground if you're doing ok at the minute
I haven’t spoken to my consultant since April 2021 but I have annual appointment with the RA nurses. It should be 6 monthly but they told me that it’s now more like 12 monthly. However they do have PIFU and on the one occasion I have used that it worked well. We can ring the nurses helpline any morning before 12.30 and you get out through to reception who will arrange a phone appointment with one of the RA nurses. I’ve done that a couple of times and got an appointment either that day or the next. The last time I was given a ftf a few days later with the nurse.
I used to be seen F2F in clinic regularly then Covid came along and no appointments. I was seen in September 2019 and resorted to asking PALS in February 2023. The appointment was in September 2023.
From that F2F appointment, the letter to GP stated follow up in 12 months. I chased in May of this year, knowing it may well be later than that, only to be told it would materialise 'nearer the time'.
September has come and gone and no appointment.
Someone I know who has severe osteoporosis and has been on the new treatment for that and needs to be seen/scanned urgently to check whether the treatment has worked, was recently told there are currently 10,000 patients waiting for rheumatology appointments at my hospital!
The messaging service on My Chart has been frozen too. I cannot message anyone - that's progress!
I haven't seen anyone since May 23, do have bloods done by gp every 3 months and presume they get sent to consultant but I am stable on metho and sulfazalazine. I do plan to get in touch just to make sure am still on my consultants list. Cambridgeshire area.
In our Trust they have gone from seven consultants to five, and they have now closed down the advice line to the nurses. Like others when my annual appointment time came and went I called the central booking office. They sounded a bit panicked because I wasn't on the list for an annual follow up. They had to go and poke rheumatology, and it took another six months to get the appointment.
And definitely no PIFU here, which is a shame because all the other consultants that my son is under uses PIFU.
I am actually thinking of 'firing' my rheumatologist. No point in waiting 18 months then have an appointment where they dismiss you because you aren't as bad as the last patient they saw.
The process for us is to get the ball rolling ourselves, in your circumstances I would would ring the helpline and ask for the ritx blood test form now, after taking the blood test I would leave a message for a ritx infusion appointment - this sometimes comes after a while and I have to do the bloods again….
I guess I’m a very lucky RA patient my consultant arranges for me to be seen by him every 3 months currently. I’m far from stable and have an added bonus of being hypogamma. He’s very caring and respectful and I’m never treated as a number. He insists I see him and only him. I guess if I was in your position and I have been where my appointments with my previous consultant never materialised and were cancelled 10 times a year and the nurses I did get to see basically said “you need to see your consultant”, eventually after trying every avenue I could possibly try I ended up seeing my MP as a last resort and one letter from him to the hospital trust and I haven’t had the problem again. So if you need help ring the helpline, ring the consultant secretary, ring PALS, go see your GP and when all else fails go see your MP.
Just as a secondary thing. The reason I’m hypogamma was because of Rtx infusions and I only had two rounds, That isn’t the norm and I’m not suggesting it will happen to anyone else here, but as I wasn’t being seen or monitored properly, it’s the reason my immune system will never recover. So you have to be your own advocate and keep an eye on yourself, don’t leave follow ups or monitoring to an over worked and under paid system. Proactive is the way to go. I do hope that I haven’t upset or worried anyone by my experience as it’s pretty rare with Rtx and I guess I’m just unlucky.
Gosh - that’s terrible. I had to come off hydroxychloroquine some years back because an eye test had detected potential damage to my retina. Unfortunately all treatments seem to have side effects but to a certain extent we also need to rely on the medical profession.
I’m on the DAWN blood monitoring programme. My blood results are checked by rheumatology and also GP. If anything abnormal either clinic contact me or sometimes my GP. I can ring the helpline and usually get a reply within 2 days . Got appointment with specialist nurse next month to arrange my next retuximab , last infusion was May. Think where I live I must be lucky with the care I get after reading others experience with rheumatology. Hope you get to speak to someone soon x
I share your concern and frustration. It isn't good enough. Neither is putting the onus on patients to chase up and arrange appointments, especially when the patient isn't aware this is the new expectation of them. I hope you can get an appointment sooner. My own experience has been similar. I was switched to new drugs in July and the consultant said he'd need to see me in 3 months, which would have been mid October. I've heard nothing yet..
My rhemy dept consistently misses appointments, a previous one was 18 months overdue...
I hope you can get an appointment sooner. As others have commented given their track record, cancelling your next appointment seems more than a possibility. Best wishes. Seb
I have Behcet's and sero negative RA. I see my local Rheumatologist every 12 months, appointments are booked straight after the appointment. This Rheumatologist doesn't control my meds but looks after me if I were in hospital or need eg a Dexa scan. I also attend a CoE for my Behcet's and they prescribe my Biologic. Both have excellent helplines. The local ones usually reply in a couple of days and the Behcet's one is a nurse consultant and she responds almost immediately. I am very lucky in that I have excellent care and both Rheumatologists are really lovely as well.😀
I had my first Rituximab infusions for Systemic Sclerosis in September/ October and am supposed to have a phone review within 3 months of the second infusion - which should be in early January. I used to be seen or phoned by my consultant 3-4 monthly until now but things are changing in my hospital all the time. I’ve also noticed that the last couple of appointments have been with the specialist doctor who works in rheumatology rather than with my consultant. I really like my consultant but don’t like the specialist dr at all so have found this awkward. However I do have my consultant rheumy’s email so I can contact her directly if I feel it’s really necessary and she always gets straight back to me. In my case I haven’t noticed much difference so far since I started Rituximab whereas the DMARD I take, Mycophenolate, really helps. I doubt I’ll get the 3 month phone review without chasing it up via the rheumatology nurses. I always have to do this 6 weeks or so before it’s due.
What annoys me is that with a few other equally in-demand specialists I get a letter of next appointment a few days after the last one so that I can plan my life. Yet with rheumatology this has stopped since the pandemic. I’m am also under ophthalmology, dermatology, neurology, gastroenterology, colorectal, podiatry and oral medicine - all for the same wretched rheumatic autoimmune disease. However increasingly I don’t get follow up appointments unless I pester for them. It’s like having a full time, unpaid job and if I leave it more than a year then I know I will fall off their clinic lists entirely and have to start all over again.
I am afraid this is a simple discrepancy between how many consultants your trust has, and the number patients being cared for. Things are unlikely to change for the better in the near future, and your 1st point of contact should be the nurse helpline if your trust has one. PA LS is is also worth ago – although even they can't "magic" appointments out of thin air! My consultant once told me that he has to prioritise patients with more "serious" problems e.g. vasculitis or lupus etc!
Yes I understand this. ATM I am grateful that things are ok for me but just concerned that without blood tests ( l have no forms or schedule for these) things could be getting worse and I would have no reliable way to get help.
I think when I was first diagnosed my F2F appointments were more frequent, but since starting meds, apart from the times where they weren’t working or I had a flare, they’ve been more sporadic. I think I have one booked now next year, so I’ll have only had one in 12 months. I would normally ring my consultants secretary if I felt really awful and I didn’t get a response from the helpline, she’s very good then at getting me in to see my Rheumatologist - I think I’ve been very lucky and have had exemplary treatment where I’m at (Watford General) - my Consultant is really excellent.
Oh what a coincidence I’m under Watford General too! I thought your description sounded familiar. I have no complaints about them either just wondering when/if I need blood tests and what to do if my rituximab infusion wears off. I do have the consultant’s secretary’s number so will probably try that first.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
What do i have to do to be painfree...................
How frequently do people still trying to find a suitable treatment see their Consultant?
How often do you get sick (catch something)?
