Rheumatology appointment cancelled : Hi, I had an... - NRAS

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Rheumatology appointment cancelled

Natbat87 profile image

Hi, I had an appointment booked to start on leflunomide on 16th June, it has been cancelled. My last one had as well due to the covid situation. I'm really struggling though, they put me on steroids for 8 weeks but only 10mg for 4 weeks then 5mg for 4 weeks. I've been off them now for about a week and flaring up.

I just don't know what to do now. I've not been on DMARDS since January so it's half a year now and I know it's probably for my own good due to covid but who knows when this will end?! I can't carry on like this 😥

13 Replies

Keep up the pressure by consulting them frequently with updates on how you are. You need a decision on future treatment as soon as possible and other hospitals are arranging telephone and video consultations - so why not for you? Do you have a good home blood pressure machine? One of the side effects is raising blood pressure so they need to know your level before starting and afterwards. If you can supply that information that might be a way forward, together with access to blood tests which should also be possible.

Natbat87 profile image
Natbat87 in reply to oldtimer

Thank you for your reply.

Yes I do have a home blood pressure machine, seems to be accurate and I only bought it a few months back.

I think I am going to ring again Monday. I don't understand why they can't do a video appointment and prescribe the drugs. I'm just thinking if this one doesn't work then I'm even more delayed in finding something that does. Sulfasalazine and methotrexate both tabs and jab, I failed on so need a treatment that works!

Thanks again for your reply x

I’m sorry your suffering it’s not fair so many people with RA are being left in limbo with so much conflicting advice. Charts say these meds only put us at moderate risk but then we are told it’s not safe to start new meds. We are told the rest of the NHS is running normally. I have yet to see the evidence. No physio, No hand clinics, No podiatry appointments, blood tests by appointment only , no face to face appointments because we are susceptible??? Yet only moderately at risk. So people like you are left to suffer. I think you need to ring them back and say you need help . Don’t back down be polite but stick to your guns enough is enough.

Natbat87 profile image
Natbat87 in reply to J1707

Thank you, I know it is really frustrating.

I'm asthmatic as well so I'm shielding due to the asthma itself so I can't see a problem with starting a new drug. It could be December before it would be "safe" and then I've been off meds a year! 😭

denden profile image
denden in reply to J1707

Hi J1707 how are you doing today?

You’ve hit the nail on the head ! I can’t help but to respond; you know, right?!

Dermy and Rheumy department and secretaries office closed except for answering machines. 😏

Had appointment at the Cancer unit department for July. Received text, appointment cancelled. Section closed until further notice Once reopened, the earliest appointment available will be sent. 😳

I will most definitely be getting my carers to follow up on advice shared.

Thanks a million 😃

HappykindaGal profile image
HappykindaGal in reply to J1707

Podiatry came back last week. Physio mid June 😊

I too am very surprised this did not become a phone call appointment.

I am so saddened to read this post. I am hearing impaired. The Rheumy department scheduled a telephone appointment?! 😳 When this was brought to their attention and asked for a re-scheduled one, have to wait until September!

In the meantime, they are increasing the dosage of Steroids medication prescribed without even seeing me! Mercy! With heart condition plus other health factors how in the world can one cope?

Truly, I empathise with you. Follow through on suggestions given. I most certainly will. Keep us posted as to how you get on.

Do contact your Rheumy and ask for help. It’s not right you’ve been left in limbo like this. Keep hassling them!

Around here its a blanket no new meds. I believe I had a chest X-ray before starting LEF and I think I'm right in saying I also had vaccinations for yellow fever, and a few other things as we go away a lot or used too, and it was no live vaccines so I was asked did I want to have them before starting the drug. I did. Left changed my life and our GP's are doing the hospital blood tests so it might be worth another call back and asking for help. It isn't fair these days but a lot of meds around here are now in short supply so it just might be that its not available so worth checking. Its hard to get AZA impossible Cimitidine and Ranitidine and so it goes on.

Like you MTX failed for me - and during lockdown. I know that everyone is treading carefully through their risk management. However, I have been put on Hydrocholorquine, steriods and Leflunomide during this period. No problems getting bloods and blood pressure done by the GPs. Sadly, after a battle of 2 weeks it's decided that LEF not for me as I have suffered side effects, including raised blood pressure. So a new adventure awaits and I intend to get started ASAP on new series of meds - once LEF left the system etc.

I have only mentioned LEF affecting me to demonstrate that even if it doesn't suit you, it can be managed during this period. I have been quite proactive and called the helpline when I needed to so I feel it has been as carefully managed as possible during this awkward time. Don't be put off, I would be on the blower stating how your RA is flaring and your concerns about long term damage and Covid 19 as a consequence of active disease and steriods.

P.S. There is a great read on the BRS website about managing RA during this period - quite an insight into the use of biologics, risk and what goes on in the EU!

Let us know how you get on. Kindest x

HappykindaGal profile image
HappykindaGal in reply to RosieA

I wasn’t given leflunomide as my bp had gone through the roof since having RA, It’s ok-ish now but mines always been slightly high since forever.

Consultant appointments are rare. Not seen one for 18 months now. Saw nurse last October and I asked to come off sulfa as biologics were working so well. She said to check with consultant which of course, has t happened and who knows when it will. So stopped taking them two months ago anyway. Didn’t see the point with the biologics anyway. I take MSM organic sulfur anyway as it was once suggested (not sure if it does anything)

I am surprised that your appointment was not changed over to a telephone one especially when it is so clear that your need your medications reviewed and support with your flare up too.

It does seem to be so different in different areas and hospitals. Have you been back in touch with your rheumy team? I would really encourage you to if you can as you really shouldn’t be left in such pain.

I have been in touch with my team around 4 times in the last few months and rang yesterday as my joints began to flare badly again with tapering the steroids. Steroids increased again and much slower tapering to be done and telephone appointment with consultant next week to review meds.

Please do get back in touch with your rheumy team as you can’t go on like this. As other lovely people have said to me we need to keep in touch with our rheumy teams when struggling. Something I still struggle to do as feel like I am being a pain but so pleased I have done as received advice the same day and my rheumy team and GP have been very quick to support me.

Thinking of you and please make that call to your rheumy team.

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