Left in limbo, I don't know how my appointments are g... - NRAS

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Left in limbo, I don't know how my appointments are going to work.

30 Replies

Hi, it's my first time on here so please be gentle. I was diagnosed with RA in February this year by my rheumatologist. I also have non alcoholic fatty liver disease, I'm told that they go together a lot of the time. She prescribed 15 mg mxt along with prednisolone, plus the usual alendronic acid, adcal D3, folic acid, lansoprazole. I saw this consultant a second time in March then she sadly retired. Everything went to plan in blood tests and drugs nurse appointments, then in April a locum took over. I was told by him to reduce my steroids by 1mg every 4 weeks. He never asked me to make any appointments so i presumed one would be sent in the post. I never received a letter of my consultation either. My last appointment for meds nurse was May. She told me that I am now under my GP care and my next blood test would be mid August. I enquired at my GP surgery and they know nothing about me now been under their care, but I made a blood test appointment for beginning of September. They said i should have a rheumatologist appointment in October but I know nothing of this. My questions are how often should I have a blood test and is it my responsibility to arrange this and who gets the results. I have been left in limbo not knowing how things work. I was given the impression that i would be seeing someone on at least a monthly basis especially about my meds. I'm one of the lucky ones that I do not have much pain now, I think the stress at work made it worse but i took early retirement so feel a lot better. Any pointers in the right direction would be helpful.

30 Replies
oldtimer profile image
oldtimer

First welcome and sorry that you need to join us here. You are not getting good care currently.

Look at: cks.nice.org.uk/rheumatoid-...

that gives you the recommendations for your care that the NHS SHOULD be giving you.

Also have a look at the NRAS website where you can find much of the information that you need about you condition. The better informed you are, the better able to insist that things are done properly. I'm afraid that you will find that you often need to fight your corner!

in reply to oldtimer

Thanks oldtimer, I have read all the information leaflets that were given me and thats where I got the idea that i would be seeing someone regularly, even if just for blood tests. I will look on the site that you pointed out to me. I was thinking of phoning the rheumatology secretary also about my hospital appointments or lack of.

AgedCrone profile image
AgedCrone in reply to

By meds nurse Do you mean your Rheumatology nurse? If you do - make an appointment to see her......if not call the Rheumatology appointment line at your hospital & explain your situation....that should get you seen.

It may be as you saw a locum she/he didn’t know the hospital system & didn’t fill in the right form for your ongoing treatment....can easily happen.

If you are on Mtx you certainly should be having regular blood tests.

For now ask your GP to order one....if your request is denied, emphasise you are taking Mtx.

Unfortunately you are not alone in having to micro manage your own appointment/treatment..my March check up has been moved to June, then Sept.....currently it’s Oct...but as I’m stable I haven’t chased it up.

Hope you get some answers soon.

in reply to AgedCrone

I phoned the rheumatology nurse yesterday, no answer, so had to leave a message. If she doesn't get back to me on Monday I will phone to make an appointment.

AgedCrone profile image
AgedCrone in reply to

I’m sure she will get back to you & sort everything out.

in reply to AgedCrone

Just to let you know that my rheumy nurse didn't get back to me. I had an appointment to see the liver nurse last week who was very concerned that tests were not done regularly due to my liver condition and the meds I'm on for RA. She said that she would try and Chase things up in her letter. If I've not heard anything by beginning September to give her a call.

AgedCrone profile image
AgedCrone in reply to

Why didn’t you ask the liver nurse to give you a blood test request form?

I just photocopy my blood forms & make the appointment for the test on line when I need it.

Unfortunately we have to be very proactive & keep things rolling ourselves.

As you have found if we wait for it to be done for us it just doesn’t happen!

in reply to AgedCrone

She gave me a form. I already made an appointment off my own bat. Made a GP appointment too.

AgedCrone profile image
AgedCrone in reply to

That's Great.....Photocopy that form... and if you feel you are overdue a blood test just book one.

We have to look out for ourselves these days...hope everything turns out OK!

charisma profile image
charisma

Hi dithedancer

On MTX you must get regular blood tests to keep an eye on kidney and liver function plus neutrophils etc. To start, this is done every two weeks for the first six, then further apart if all is well with that and with other markers too.

A letter to the Rheumatology Dept is probably a good step since they have apparently mucked up and been incompetent.

You should have been given advice right from beginning methotrexate.

RA and fatty liver do not necessarily go together but fatty liver often results from eg MTX therapy which can also scar the liver but ‘it’s better than the alternative’ as RA people are always told.

Your first appointment with Rheumatology after diagnosis should have addressed every facet of disease and treatment, and given you every opportunity to know how to liaise self management of RA along with management by GP and RA specialists.

I am angry on your behalf that your care has been so messed up. Please do chase it up urgently as you need the tests and advice from medical professionals.

All the best!

Kerensa21 profile image
Kerensa21 in reply to charisma

That’s interesting charisma re fatty liver: I only found at I had this at recent scan for persistent uti: GP didn’t think it was caused by drugs but rheumatology said yep same as you, enzymes in drugs can cause it but not to worry as blood tests will monitor it. I don’t smoke, drink little, eat healthily & exercise as much as I can. I was MTX & hydroxy for year+, now benepali. Same GP said safe to take benepali with infection & antibiotics, No! I find it all a bit worrying at times, lack of consistency & info.

Sorry didn’t mean to hijack post 😊

charisma profile image
charisma in reply to Kerensa21

GPs often do not have enough knowledge or experience of what happens with RD and the drugs used to quell symptoms. Sad.

Can you come off drugs in order to allow the liver to recover?

I have not had this problem so my understanding is just from reading as much as I could find in 2015 before diagnosis.

Wishing you and dithedancer well with managing every aspect of health related to drug therapies.

Angela :-)

Kerensa21 profile image
Kerensa21 in reply to charisma

Thanks Angela, I don’t know about coming off drugs or which one was more likely to cause it; i’m highly positive for both antibodies & tend to flare when off. You’re right about GPs tho mine are v supportive in other ways: they can’t be expected to know everything I guess, best to trust rheumatology advice (when you can get it 😊) x

charisma profile image
charisma in reply to Kerensa21

Yes, mine are too, most of the time. I flare too quickly too. Definitely go with RA specialist advice! Someone on here, think it was Amy, a year or more ago, also developed non alcoholic fatty liver which was a shock to her too. All the best for getting back to better state soon!

Kerensa21 profile image
Kerensa21 in reply to charisma

Thank you 🙏🙂

in reply to charisma

I was diagnosed with PBC (nafld) a few years ago after complaining of hip pain and fast weight gain. My GP ordered blood tests then told me that I needed a liver transplant!! Referred to gastroenterologist who told me that this was a bit drastic and she had given the worst case scenario, do far I have had ultrasounds and a couple of fibroscans. Never needed any drugs just blood tests every 6 months and monitored by my GP when he was nudged into action. It was my first rheumatologist appointment who told me that it was connected.

charisma profile image
charisma in reply to

That must have been a shocking thing to hear, dithedancer. Glad you are en route to better advice and help now!

Kerensa21 profile image
Kerensa21

I would email (in writing) to patient advice line that you want copies of all letters to GP and your other concerns above. they won’t bother otherwise and it is important, I’ve had other patient’s notes confused with mine in past. GP will also give you copies if you ask for previous ones. I receive blood test forms from rheumatology and arrange my own at the intervals advised, then ring/ email for more if they run out. Sorry you’ve been left in limbo; I think sometimes they don’t realise patients like to be kept informed & feel in control & may only see them once or twice a year. I’ve learnt to be more pushy too. x

in reply to Kerensa21

I know what you mean kerensa21. I worked in the NHS for 38 years and found that the only way to sort things out was to go straight to source i.e the secretary then pester and pester.

Kerensa21 profile image
Kerensa21 in reply to

Absolutely tho’ it was secretary who cocked up my notes 👍😉

Mmrr profile image
Mmrr

Welcome, as said by those who have responded above, you do need to contact your rheumatology department now, today would be good, explaining your lack of care.

I always find letters and/or emails get the best response, so I would be following up the phone call with my concerns in writing over the weekend.

Be polite, be as brief as you can, but be firm and don't take no for an answer.

Repeating the same statement (broken record technique) works well.

Good luck, be strong.

in reply to Mmrr

I've phoned rheumatology nurse and left a message so hopefully she should phone back if not today at least Monday. If she doesn't get back to me i will take it further. I will also follow your advice and get it in writing.

dembonesDAMNBONES profile image
dembonesDAMNBONES in reply to

Always in writing, always!

Phone conversations can be disputed, recordings 'lost' etc.

Letters, photocopies of letters and postal receipts, having learnt the hard way, have become standard procedure for me.

Three weeks, more or less, since your last response.

Assuming you aren't pushing up daisies, hopefully, you got the ball rolling and are now firmly on your Rheumy's radar and recieving the requisite treatment. :)

Why have you been put on Alendronic Acid? quote "plus the usual alendronic acid," unquote. I apologise if I've missed something, but unless you have a confirmed diagnosis of Osteoporosis, you shouldn't need this. Calcium and Vitamin D , maybe but it is not 'usual' to be given a bisphonate for RA.

in reply to

Just precautionary I was told. At that point the only test I had was a blood test. Since I have had X-rays on feet, ankles, hands and chest all were clear. a few weeks ago I had a Dexa scan that showed lower spine vertabre were osteopenic but at my age, 59, thats what i would expect anyway. So when I get an appointment I shall ask why.

Thank you for explaining that dancer. Perhaps you could take a look at the "Bone Health" section of HU, healthunlocked.com/bonehealth. This is run by The Royal Osteoporosis Society and members of the group would give you excellent advice. More info to talk to your Rheumy about.

dembonesDAMNBONES profile image
dembonesDAMNBONES in reply to

Just tried the link you supplied and the page no longer exists, the pop up tells me, so thought I'd give you a heads up.

in reply to dembonesDAMNBONES

Sorry, try this healthunlocked.com/bonehealth

it looks the same as the previous one, but I tested it and it works.

dembonesDAMNBONES profile image
dembonesDAMNBONES in reply to

Thanks, poemsgalore1, it's tickety-boo. :)

orange33 profile image
orange33

Hi

Sorry that you have this condition. Make regular appointments for blood test. Been on Mtx for years, folic acid calci d . Plus yearly jab for Osteo. Which I asked for, as I didn't like another pill in my tummy causing havoc. Sometimes you do have to shout abit louder. I hate having to do that. However with out the medical help I dread to think. I hope things settle down for you soon.

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