I had been struggling with a flare it lasted 12days and seem now to becoming out of it. Last week I rang my helpline the nurse I spoke to said my consultant was on holiday but would speak to another doctor about a course in steroids. My consultant is reluctant to give me steroids at this time I told her. With a promise to get back to me once she had spoken to a doctor. No call back but this morning in the post was a prescription for a short course of steroids and hastily written compliment slip to double my methotrexate dose and let them know how I get on. I not happy that I’ve been told this on a compliment slip or am I being silly for expecting more interaction ?
Would you be happy?: I had been struggling with a flare... - NRAS
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71 Replies
•
No, I don't think you are being silly at all, I would be peeved at that too, especially double the dose of MTX - what are you on now? I know they're extremely busy and all that but surely a return call wouldn't have taken up too much of their time.
• in reply tospringcross
I was on 20mg but I was sleeping round the clock then I had a4 week break and restarted on 7.5mg (injection) was doing ok until 2 weeks ago ... I feel our medical care is declining. No f2f with any medical professionals. I fear this the way it will continue. I wasn’t consulted just told that annoys me.
springcross• in reply to
It would annoy me too and I think you're right about the f2f with medical professionals, someone told me that a couple of weeks ago. It's very worrying.
Dobcross1• in reply to
I'm afraid this is the standard of care available now and I can't see it getting better any time soon. F2F not happening and I've got a telephone review end of July which I pray is better than the last one - or I may really lose my temper!
These are strange times and things aren’t running as they used to. I think I’d be happy to have got help and advice. It’s not ideal but they’re understaffed and under a lot of stress. At least you spoke to someone, I can’t even get through to my rheumy nurse or clinic 😔
Hum! Sledgehammer is ringing or rather pounding round my head. How will you know which one is working? It will be only when you come off the steroids I should imagine. I would be tempted to call and ask for the rationale, especially since you appear to be coming out of the flare - with that in mind, would such a large increase or indeed the steroids still be the best course of action? I would call - what you don't need now is the anxiety of knowing if you are doing the right thing now that the flare is diminishing. It's all so frustrating I know. x
I would be annoyed if it was me as would prefer an opportunity to discuss what the plan was. It is a long time for you to have had to wait with no relief during your flare up! So frustrating. I appreciate the pressure everyone is under but not communicating effectively is sadly only going to add to this. x
• in reply toSummerrain14
I agree and my other worry is if this is on a compliment slip then where is my copy of the treatment letter and will a copy be sent to my doctors . I rang my gp this morning because I had an allergic reaction to a new medication ( only one tablet) and having tingling and itching over my body particularly my face. Receptionist said they would get her to call. No phone call so rang back they have no record of my call this morning. I had name of receptionist and time . Made a complaint . Within seconds practice manager rang with apologies and promise I will have a phone call from gp at 3pm ... it’s just getting more difficult to get any kind of help. The manic crisis is over the the knock on effect is getting worse.
Sorry grumpy today 🥺😩
Pippy25• in reply to
I think there is so much frustration as we see things like pubs, clubs, nail bars, tattoo parlours, holiday cottages etc opening up yet trying to get an appointment or make contact with doctors, healthcare providers and so on and it's a logistical nightmare. Some getting a positive response and others less so and share your frustration. I was prescribed some tablets last week after emailing photos of my legs and feet to my GP. I had an awful reaction to them and had to stop taking them...I've rung to inform of this but now don't know what to do. I am going for my much needed bloods done in a few days so I will ask the nurse, but I'm feeling rather in the dark about things and don't know how much longer I will have to wait if any of the bloods are out of kilter like they were before lock down. Good to get it off your chest and hope that things get sorted out for you, Take care x
I took it as a compliment when doc said I could sort myself out, and sent a bunch of prescriptions in the post. Mainly different painkillers, but allowed me to decide what I needed at any particular moment.
Good old common sense to the fore again HH.
I feel all NHs department are working with even less staff in each department ...& they were short staffed before Pandemic hit.
I am just thanking my lucky stars I have escaped Covid, & hopefully will continue to do so.
If I have to take an extra pain killer now & then....so be it.
👏🏼👏🏼👏🏼👏🏼👏🏼 Me too! Well said. I’m the same. I have a stash of Pred amongst other things, that the doc prescribed in case of an emergency, I always carry a pack of 28 with me just in case.
What has my life come to. I used to carry much more interesting things in my handbag 😂😂🤔
I've got the same with antibiotics in the cupboard and steroids too.
I know this is not what you want to hear right now, but I honestly think the less you contact your rheumy team during the present crisis... the more likely you are to be received sympathetically. All rheumy departments are still having staff seconded to help recovering Covid victims...so those left in rheumy have a heavy load.
Until one is settled on a suitable RA drug regime - patience really is the answer, because drugs can take their time to work.
I do know when it’s happening you think it will never end, but I’m afraid that is where the acceptance & patience come in with getting settled on the right meds for this disease. As we all know only too well, stressing during a flare only makes things seem worse.I’m sure all the rheumy nurses are doing their very best, & your nurse will have taken advice from the stand-in Consultant.
I fear right now we have to accept that’s how it is, & we all have to be patient & look forward to better times.
• in reply toAgedCrone
I understand that AC firstly I have had RA over 4 years. I was trying to ride this flare out . It was my physio who contacted the clinic as he felt I needed help. My RA has been very active for 16 months. That’s a long time letting life pass me by and each day is a struggle. A little more pain killer is not going to get me back on my feet. I have already been taken to A&E by ambulance for severe allergic reactions to meds forgive me if I’m a little bit wary about my medication .
AgedCrone• in reply to
It’s no consolation to you I know, but it took me 16 years to get settled on the right meds.
These days it will be much sooner.....but do try to take things calmly...it really does help accept .....try not to hurry things....especially when our medical teams are under such strain.
I am very sorry that it took 16 years for things to settle for you AC. That is truly truly awful to read; (somewhat selfishly) I would hope that things have moved on significantly with treatment since then. It really isn’t ok nor is it necessary to sit in so much pain.
Yes we have to give new meds a chance to work but there is so much that can be done to help and where you aren’t in the very early stages of new meds or just starting out with diagnosis and not sure of how things work it really is ok to call the rheumy team. For my part I am on my own and almost at the point where I can’t care for myself. So it is vital that work hard to get this disease under control otherwise I will be even more of a burden on the nhs. We have to be proactive at taking care of ourselves and I all too often sadly see the damage suffered as a result of sitting back and waiting rather than pushing for help.
I realise it has been and is very tough for our NHS but they are there to help people like us in genuine need... and from what I read here it is clear that some of us are very lucky to have great and responsive teams where others are not so lucky and treated poorly.
Of course I wish Biologics had come along sooner...but these days there is a lot of research & there are new drugs coming along that will help those diagnosed recently....as well as those still searching for treatment that will work for them....
But it needs the doctors to prescribe & oversee their use,& the sad reality is there just aren’t enough Rheumatologists to go round.
Of course the NHS is there to help everybody who is sick.....& I am sure consultants would love to have more time to spend with each patient.
Some areas where there are big teaching hospitals are usually better able to provide emergency appointments than local hospitals with only one or two rheumatologists with large case loads.
The sad truth is there are more sick people than doctors needed to treat them....so appointments are arranged according to need....& no matter how much we feel we need an appointment ....it is not always possible immediately.
The present lack of appointments is unavoidable, and sadly as I keep banging on about ....we have to try not to get too stressed & remain calm even though that is so difficult when in pain.
I hope you’d do manage to see your doctor soon.
I’m ok. I’m lucky. I have a team that is responsive and doing their best to help me. I’m on another new dmard (MXT) so have to wait it out for a bit. I was able to speak to my consultant last week.
I do think if people are in pain and need help it is ok to ask and keep asking until you get the help you need.
But there has to be a happy medium......especially in today’s situation.
• in reply to
A&E said to me last night people NEED to be seen by their consultants or spoken too as after my A&E trip last night via ambulance they felt I had been left too long taking weak direction. They appreciated other depts busy but my hospital said lot quieter now than people realise. I backed my RA team 100% but people are not just getting seriously ill or dying from COVID. We need a realistic system in place for ALL.
They were very strict with me saying next time don't think you are being a bother DON'T go to your GP call 999 that is what we are there for.
I know taking an extra co-codomol or upping MTX, wont do what I need fingers x consultant does not cancel next weeks telephone appointment.
AgedCrone• in reply to
The number of new cases of Covid may thankfully be lessening, but the poor people who did contract Covid are still suffering from the life changing /threatening effects it had on them....even young people in their thirties are left in very serious conditions that need specialist treatment that far outweighs most problems we experience with RD.
The NHS is understaffed & priority must be given to the people who have been so seriously afflicted,,,not being able to breathe unaided is a serious condition.
It’s all very well A&E saying people need to be seen by their Consultant, but there are only so many hours in the day, & unless hundreds more consultants are employed, ....we really do have to be patient...& be grateful that we don’t live somewhere where any medical treatment is out of the question ....either because of cost, or because there are just no doctors available.
We all know RD is a wretched disease & I’m sure our doctors are all doing their best to help us.....if treatment that works doesn’t come as fast as we would wish.....I’m afraid we just have to hang in there.....but with the knowledge we will be able to get treatment as soon as is possible.
• in reply toAgedCrone
I don’t agree . RA is life changing . I won’t be able to return to work if this continues. There are people on this forum who have young families they need to look after. The more we flare the more susceptible we are to Covid. Ignoring us is not the answer. I can’t get a f2 f appointment but if I wanted a coil fitting like my next door neighbour no problem gp fitted it for her today.
AgedCrone• in reply to
I don’t think we are being ignored....our RD appointments are usually prioritised according to need & in some areas it takes longer to be seen than in others & as you have just experienced - we can always be seen & helped by a doctor in A&E.
As we all know Rheumatology is probably the most under staffed speciality, & even when we do eventually see a consultant it can take a long time to get the right drugs to help our condition,
However once a treatment is found that suits you it is often possible to regain a lot of your former lifestyle.....right now that might not seem possible to you....but many here have experienced it......so do try to be optimistic that you will find a suitable treatment soon.
Very true. A friend of mine contracted Covid, she’s 56. She does the same business as me, but she also kept up her nursing license so went on the wards.
She wasn’t well at all and that was in April. She’s still having repercussions now and looks like she may have fibrosis which isn’t good at all.
My sister had it yet on recovery went back to work no time to have a holiday and all clinics are baked up. She I've said before is younger than me but looks much older. Sparkle has gone and Think it's from overwork not the virus. I think we can expect too much from the medical professionals , they also need a break and time off. I have not been forgotten and have been rung by GP, Nephrologist, Pharmacist and RA nurse and consultant. I am grateful and happy to discuss condition on the phone but I also think its about trust and knowing the medical team so having confidence in them.
I rarely comment on this site.
I am not disagreeing that the NHS has done an excellent job.
However I do feel that many people have been forgotten .
Why are most GP surgeries closed?
Blood tests only available in clinics across the city!
After shielding for many weeks,With no contact from any one from Rheumatology dept I do feel very forgotten.
After yesterday I learnt I can’t just pop a pill even one prescribed by a Doctor as the severity of my reaction and feeling my throat swelling was enough. I want to know I am being treated or I will go private for a one off even if with my own consultant to get me on a good path. The hospital last night was busy but still 50% I think they were saying less than pre covid.
I am still very pro NHS but we need a workable solution for all.
I would be horrified to receive that without a proper consultation.
I feel like we are forgotten and it’s wring we know covid is bad but that’s not the only illness in this world... drives me nuts . Can’t get near a doctor it’s wrong.
Honestly? No, wouldn’t bother me.
Saved me a trip to see anyone, gave them back time to see someone who’s perhaps new and in a dreadful state, or someone with MS or Parkinsons. Would have been the same result more than likely, if they had seen you so no, wouldn’t have bothered me. I’d be more surprised that they had even bothered putting in a compliment slip 😂
If you aren't happy give them another call.
I find everything about our rheumatology department in Ipswich shoddy and rushed so it doesn't surprise me that you got instructions on a compliment slip.
However it doesn't matter what it was written on as long as the instructions are correct. So many mistakes are made due to not listening and rushing. I question everything.
• in reply toCheylann
I rang them yesterday morning still awaiting a return call. Good job I didn’t take the pred. I wasn’t asked if I had been prescribed any meds. I had and I checked the interaction with these meds on line . They cannot be taken together. If they had rang me I could have told them. I’m able to check and be proactive about my drugs some people are not.
friz42• in reply to
I get you and think your actions are correct. I would have done the same. You are not wrong in asking questions.
Cheylann• in reply to
You see they make so many dangerous mistakes.
I fear for the people who are unable to check and challenge.
I know all about the mistakes some docs/consultants make.
You need to be vigilant.
I think you will find what you describe as “shoddy & rushed “ is in fact overworked staff...each doing the work of more than one person ....trying their very best to satisfy patients who often think they know better than their doctors what level of attention is really necessary to provide good care....so they get very stressed if their appointments aren’t as long as they used to be.
I’m afraid the days are gone when a nurse had time for a chat & a cup of tea.
It will be a shock to those who feel they need to see their doctors regularly - but since this Pandemic I think It has been proved appointments by telephone or video link have been really successful & only those patients who really need a f2f will need to see their medical team for every check up.
Hopefully this will eventually lead to better care for everybody..
It doesn't matter what the reason is, my experience has always been shoddy and rushed even before the pandemic.
Unfortunately Rheumatology is very understaffed in most areas and we really do have to realize we are going to have to wait for appointments probably a little bit longer right now....... If you feel your present rheumy team does not meet your needs, maybe you would benefit by changing to another rheumatologist......Sometimes that really does help.
Methotrexate doesn't make you gain weight, eating does.
Errrr not quite. Sorry I have to disagree having spent a lifetime battling on and off with weight where meds have most certainly had a huge impact (excuse the pun 😉) and been the issue.
... certain meds mess around with the body very much indeed and I for one am absolutely prone to awful weight gain from many meds. It is often the meds and/or food combined.
Putting it bluntly ... without the meds you don’t gain weight ... with the meds you can and if prone are very likely to. A very depressing side effect. ☹️
• in reply tobubblyalex
I too put on weight with mtx and very health conscious . Pre RA 4 years ago I had BMI of 23 now it’s 30 . I am not a comfort eater I cook fresh food from scratch limit treats and hardly drink at all now ( special occasions only so far that’s been 3 days this year) I know I don’t exercise as much as it’s such a struggle so am much more aware of intake of calories. But my weight gain has ran away from me. When my disease is active I don’t eat can’t cook and the effort required to put food in my mouth and chew is beyond me some days but I’m still gaining weight. 🤷♀️
bubblyalex• in reply to
It is rough isn’t it. Bizarrely when I was at my worst before I was admitted to hosp I wasn’t eating more than a yogurt a day.. thankfully I didn’t gain then but I didn’t drop a single little itty bit in weight... admitted to Hosp, stuck in bed so no exercise and started eating big time because there it all was in front of me and loads of toast too (always a killer for weight gain for me) and sweet things and the weight plummeted off ... 2 weeks and I had lost 4kg ... it was quite a bizarre turn of events. Weight and meds are a nightmare. Usually it is massive weight gain apart from this one time.
Methotrexate on its own doesn't make you gain weight.
Wow, what a statement!
If it was that simple we would all be slim. You know nothing about me so please do not state the obvious. I know my calories and exercise extremely well. Not saying any more to someone like you.
If I don't ring my Nuero dept or RA clinic to find out where I stand in relation to appointments I fear I will be compleatly forgotten. I really don't want to bother them.
No this is appalling make a formal complaint to your NHS board the health service are telling us to report I'll health with if it's important it's important they should have spoken to you definitely that's terrible to hear
I think probably on balance yes, expecting too much re the slip my blood test forms have just arrived with one no problem to me and they're trying hard in difficult circumstances. Trying to catch up for months of missing appointments never mind all the other stuff like new patients, and don't forget it might be like our local hospital the RA nurses and doctors all went over to Covid. Why not just give it a go and if it doesn't work then go back to the doctor. Especially if like here no new medications are being given as blood tests are not being done so regularly.
It might be the same all over but here I expect the medical staff are fraught and need some leave but are carrying onto respond to people as best they can. I've seen my sister she looks 20 years older than she is, grey and in need of a break but can't yet.
So perhaps we just have to be content for a while with things which aren't prefect but in time will improve slowly. I'm sure that most people understand how hard things are at the moment and do sympathasise but realistically we have to accept things are not back to normal yet. I feel particularly that when cancer patients are having to wait that RA isn't a huge life threatening condition. I'm sorry if you don't think thats kind, but neither is worrying overly about a compliment slip when putting things into perspective so many have died and will continue to die.
I have to say cancer patients are not waiting in our service we are still treating anyone who needs it our issue is that because of covid people are not going to the doctors please go if you need to don't wait until it is bad it makes it so much harder to treat. Everyone can be seen that needs it i seen my nurse specialist during lock down if you need to be seen you will and please insist if you feel it necessary. They are not doing routine clinics but should see you with a issue if required
• in reply tomedway-lady
Yes but if I had taken the pred and the medication I started last week from gp for another condition I wouldn’t be able to complain I would be in hospital at the very least. A phone call could have clarified this not just presume this will do the Job. I had to reduce mtx having enormous problems then just to be told to double it just like that without discussion doesn’t sit well with . I’m not asking for special treatment just the basics.
medway-lady• in reply to
Around here you've had the basic treatment it might be dependant on the hospital involved. It sounds like it all happened at the same time sadly these things happen. Last year I had a prescription from RA at a consultation then a day or so later had a phone call from GP don't take this ! The a copy of a letter sent by Nephrologist that this item is not licesenced for use in kidney patients. Written in capital letters ! Sadly I think wether on the phone or by consultation the trouble is that things go wrong. I have CKD from medication but it was totally avoidable had a blood test not got lost, so do understand. Honestly I do but things are just so not normal. And I suspect they are all just as frustrated as we are. I had a telephone consultation last week too its not the same as face to face but luckily it was a doctor I know well and trust and perhaps thats the main issue, its about trust.
I agree about the compliment slip.
I don't agree about the rest. My treatment has always been rushed so I don't feel confident in the diagnosis etc. The pandemic has got nothing to do with it.
To give all the reasons you have as to why treatments are rushed doesn't justify it.
Each patient deserves to be treated properly and given the time they need.
To compare RA and cancer is not fair.
Rheumatology isn't treating cancer patients so not sure why the comparison.
Making the NHS staff shortages etc the patients problem isn't fair either.
They should never treat patients in the slap dash manner I have been treated since the beginning.
In our hospital RA staff are hard pushed in normal times and I have never been rushed we can only write from experience and your treatment has been different to mine. I live in North Kent its very busy and our hospital is huge but we are still treated as individuals. I think there is a comparison in that one is life threatening but RA isn't. Cancer treatments were stopped my friend was half way through an experimental new type at Kings in London it is now terminal because the window of opportunity has been missed and its too dangerous for her to go to London. RA is painful and debilitating for some but not for most. Here it was " we are all are just doctors and nurses" there was no RA team as the department closed with just an emergency helpline and I have no problem with that it may be different where you live as at one stage my hospital had a great many Covid patients. I had a phone call from my RA nurse to ask if ok before Lockdown and advised about the temporary closure.
I'm afraid life isn't fair, and I hope you get better treatment. The NHS is most definitely a lottery it would appear which is horrid for people with all manner of medical problems.
I agree with you ML...we really do have to remember our doctors,nurses, physios, etc are Husbands,Wives, Mum& Dads...They are not machines just programmed to do our bidding when we need them....especially when they have literally been saving lives of Covid patients for the last few months.
I wonder how many of them have missed important family occasions to look after those patients who were not only in pain, but needed life support 24/7?
So yes, we do have to accept that for quite a long while now we are going to have to be understanding, if a few appointments are cancelled & we don’t get the usual swift treatment most of us are used to.
And as you say......let’s get oncology back on track ASAP...it must be terrible to know there is a life saving treatment out there that you need, but the beds are being used for Covid patients.
Let’s hope that is remedied very soon.
They should have contacted you by phone so that you had a chance to ask any questions or stress you concerns. I was taken off Methotrexate because it made me ill, telling you to double the dose well! Your bloods surely have been checked first I would have thought.
Get back to them if you are worried or concerned.
I hope you get things sorted.
Stay safe.
Ray.
The GPS in my surgery are in the building but can’t see patients.I was informed yesterday that a surgery two miles away are seeing urgent patients registered with my practise.
I think sometimes we accept poor service to readily and feel apologetic for asking.
I ask for very little, an infusion every 6 months and prescription every 8 weeks.
We've got 4 surgeries too are shut as only taking definitely covid patients. The other 2 are open for people who need to see a doctor and blood tests. Blood tests are being done in the car park a system that works well along with B12 injections. They are triaging people but not heard of any complaints. Another surgery in an adjacent village has been closed by the CQC inspectorate so they are really very stretched. But they do ring back and I certainly feel I've had no issues at all. I wish all other practices were the same.
I sympathise with you completely. I’ve been in agony with a flare that’s lasted weeks. I haven’t contacted anyone as I feel it’s a waste of time. I wouldn’t take any meds and have stopped my MTX as I’m not getting any blood tests and it’s not working anyway. Perhaps after years of taking multiple drugs you become less wary of doing things on your own , but I for one am terrified of these drugs and know I wouldn’t be happy trying them unless someone convinced me they wouldn’t make things worse. That’s why I’m staying away from looking for help.
Please don’t stay away from getting help. Perhaps you need a different rheumy.
I’m having my bloods done. There isn’t any reason for these not to be being done.
My gp said the rheumy told them I don’t need test till August ( last test was in feb) I upped dose to metoject 15mg last November. I stopped cause of side effects and flares .
Please do ask for some help Lina, stopping taking your meds could cause irreversible damage to your joints. How long have you been on mtx? Maybe talking to someone at NRAS would help you overcome your fear of meds?
Uncontrolled RA can do lots of damage, not only to your joints. Please talk to someone x
Thanks for your concern Kitty J! I’ve been on it since last August and only seen once since. By a nurse. My last appointment was cancelled and next one due in August. Will look into the nras website !
Do do that ... and ask for a second opinion? If possible from a diff hospital. I did this and so much happier... in terrible shape but I trust my new rheumy so much more.
It would have been nice if they had even gave you a telephone consultation. Hopefully the steroids help and the right dose of MTX that helps
I rang my GP three weeks ago and begged for help because I’ve been having the most awful flare for months !! The prednisone I was given has helped a little but now I’m still unmedicated for R.A. I don’t even have any prednisone. So last week I rang my consultants secretary and asked if at all possible could I have a chat with my consultant because it’s getting bloody silly now. My right knee is so inflamed that I know my ACL is going to snap again pretty soon and I’m probably going to end up in A&E with a full leg brace for 6+ weeks. I’ve left it all this time before contacting them or anyone for that matter but reached a point where I can’t stand it much more. Whilst I realise how difficult things are with regards to Covid etc and staff must be pulling their hair out. I really am sympathetic to the NHS because I worked for them for 10 years before being made to retire due to ill health. But sometimes you have to seek help and I don’t think that sending a prescription with a compliment slip is very good at all but have to say I’d welcome even that Atm I haven’t heard a dicky bird by the way so I’ve had to bite the bullet and leave a message on an answerphone again today think a week for a call back is long enough to wait.
• in reply toLeics
Shocking you have been left. Making some noise or even a nuisance of your self maybe the only way you can get help Unfortunately . You have suffered long enough. Good luck let us know how you get on.
Leics• in reply to
Yeah I’m starting to make some noise. I understand if they can’t sort out new meds atm but need something to get me through. A conversation is a start if I ever get one.
You're not being silly. I think we're all finding the same kind of problems when we are at our lowest healthwise. It happened to me a little while back. I'm not really a pushy person but i insisted i be seen by my consultant. The answer was no but i persisted, leaving a message on the help line every other day for about a week. They didn't return my call after the 1st message i left. So at the end of the week i rang my consultant's secretary. She spoke to him and he rang me and asked me to go in to see him. Apparently he had not been told anything by the nurse on the helpline. Hope you're feeling better x
I have just received a three month prescription in the post,no blood tests since March.The theory that everyone is rushed off their feet is wearing a little thin.
From this site alone ,not many people are getting much of a service for any illness.
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