In reference to my last post where I am awaiting a training session to use metoject injection for methatrexate my appointment has come through from the hospital and it's for November 🤯
So it will be nearly 3 months wait on no DMARD for a 10 minute appointment.....
I know they don't intentionally want to give these long waiting dates but this to me is such a long time especially since I've been unable to work and have any income since very start of May.
I am still going to ask my GP on Friday when I go if they can show me but I'm not holding my breath 🙃
On the upside I had an appointment over the phone with a physiotherapist and she was ace.
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Marionfromhappydays
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So sorry to hear what you are going through and I understand some of how you feel. I think services throughout the NHS and country are a postcode lottery at the moment. Some getting a better service and others getting none or a lengthy wait. I hope that you can get something sorted out as things can begin to improve for you. Let us know if you have some luck on speaking to your GP. Take care x
It does seem odd that they are happy for us to languish with no treatment while at the same time constantly reminding us of the irreversible damage done in such a short time.
RD typically affects hands and feet: can't work if your hands and feet aren't working.
I know, I asked the physio what the time scale was for joint damage to happen as I have no idea and she said it's all very individual and sometimes unpredictable. So hoping mine is slow......
Hi - thanks for asking - I'm ok actually although yesterday had the burning pain back of my neck and in one or two vertebrae in between shoulders, had it for a couple of days, either side of the top of my coccyx too and tender to touch. At the top I can feel it when I stretch my arms forward and the skin tightens. It's gone now. By the evening I had the first hint that a cluster headache was coming. So before the actual pain even started, as instructed by the consultant, I got my husband to give me the sumatriptan injection and went to bed!
I hope going to bed after the injection prevented a migraine.
I'm having physio (over the phone) as part of my arthritis care, she went through all my joints and which hurt etc. She gave me exercises to do (she did one for my neck pain which was really helpful, said it realigns the spine and it felt really nice to do) and when I'm on a DMARD and pain less I will start attending exercise groups with people around same ag as me (im 46) so I can meet people who have it.
It was a really constructive appointment, she gave me alot of reassurance, my consultant arranged it back in June when I was first seen so ita taken a while but was worth it. Maybe something like this would be good for you?
Well! Before my diagnosis I had on several occasions asked for physiotherapy but i got the distinct impression that I was being fobbed off. They really wern't keen. The first time it was for probably the most horrendous pain I have experienced apart from labour pains. it was my left shoulder which was fine until I lifted my arm up. It was excrutiating and as time went by it took a good few minutes to recover each time. I was told it was quite common, can't remember what it was called but eventually I got 2 sessions after they xrayed it and said there was 'damage'. The sessions i thought were helpful, but I don't know if it was just coincidence that that particular pain has never come back. Over the following years when other pains started to creep in I repeatedly asked for physio, especially after the first and second rheumatology appointments when I was told I likely had OA. again they weren't keen but literally in the 2 months before I got the letter telling me about inflammation I had been allowed about 4 appointments and thought they were helpful - especially for my neck. Mine were really soothing too!
You'd think I would be offered more physio after my diagnosis, but apparently that was my lot and that's that! My uncle in Germany was practically forced to his appointments and continues to go well over a year after a back operation.
Do you manage to keep up with doing the exercises?
BTW - yes going to bed with a sumatriptan strangely comforting! comfy pyjamas and a shot of oblivion. It does seem to have nipped it in the bud. x
Good glad the injection aworked and you could sleep off a potential migraine.
Seems physio is quite hard to get, waiting list must be huge. The physio did say she was part of my team looking after me and can be contacted via the rhemy hotline but don't know when i will see her again.
I only got exercises today but I'm going to give it a go, she kept repeating that movement oils the joints and i should keep moving little and often whilst disease uncontrolled and once on DMARD can get back to swimming and keep active.
I think there is alot we can do to help ourselves although when we feel stiff we don't necessarily feel like.moving ! I've got alot to learn.
She was really thorough and said my symptoms were classic sero negative , I felt listened to and reassured .
Do you think you maybe need to speak to Dr or nurse again to maybe reassure you of you diagnosis ? Or are you more settled about things ?
Hope you have more good days than bad , you deserve them x
That’s crazy! Phone and ask if they have a walk-in injection clinic..some hospitals do for people who can’t inject themselves. And if so turn up and sit there!! That’s where I got my initial session.
But how times have changed. After my initial session at the hospital a nurse came round to the house to check on where I was storing MTX and that I was confident about doing it by myself. Roll on 8 years to when I was prescribed Enbrel injections, when I was handed prescription and told to get on with it!
Unfortunately you won't be able to just turn up I suspect. I am currently in hospital and learning alot about why appointments are taking so long. It because of social distancing.
For example, I needed to have a PICC line insertion which has now thankfully been done. I asked the lady who was doing it, how many she does a day. She said about 16-20 on a really busy day pre-pandemic. But now because of social distancing and the cleaning in-between, she can only do about 10 at a push. Same in the EEG department. They can only have so many patients and staff in the department at one time because of social distancing and then they have to clean everything afterwards.
I'm seeing it from another side.
I do hope that you can get benefit from MTX.
The one thing that they did say was that so many people are cancelling their appointment. It might be worth phoning to see if you can get a cancellation slot??
You got a vial, a needle and a syringe and had to put them together and suck up the liquid.... no teaspoons and bits of foil involved thankfully. Then it was pre-filled syringes where you only had to put the needle on, then all-in-one syringes and now (yippee) pens. Joy, especially as I am still a bit needle phobic.
Right now in the U.K. HH.....you can’t get in to a lot of hospitals to”just sit there”!
I recently went for a scan...I was greeted by an elderly gentleman, in his woolly jumper jumper, with a huge label pinned to his chest saying Security!
He asked why I was there..told him Dexa scan. He barred me entering saying “All scans are done in the new building “.......I 99% knew he was wrong....but disappeared off round the corner counted to 10 & went back....to be greeted with “I told you scans are not done here”..so I waved my phone at him..said “They are...I just phoned” & scooted past him....& got my scan.
Job’s worth’s exist everywhere....shame he got got it wrong!I was intending to scowl as I left...but because of the Heath Robinson One Way system being operated ......I had to leave by another door!
A lot of these security extras used to be at my hospital as volunteers .. mainly retired men, and they meant well of course, but unfortunately I could hear one directing patients all over the place to wrong locations! You wouldn’t thank them for it if you had mobility issues but were on foot and walked the length of one particular corridor in ours and back!! There’s also a looooong tunnel on a steep slope involved. Just what bad legs need coming back up it. Ah at least you’d get a decent hike. 😳 I must point out he was a nice man but needed to know his hospital map.
The man I encountered was a bully....which is why I was deceitful & fibbed. He had a crib sheet which presumably noted a Dexa scan was performed in the X-ray department, but he refused to check.
I have been attending the hospital for 15 years...& in the past .....if departments have moved we are told in the appointment letter.
As you say...in my case it was a looooong hike - outside - to the other scanners & it was raining!
I told the radiography receptionist .....& she said she’d get his superior to have a word......like you she said these volunteers were usually very helpful...& to be fair this old chap probably thought he was right...but like a lot of us old codgers......won’t check if challenged 🤔🤔🤔
😜😝 Ah, there’s stubborn in all of us! I think you did right to dodge and head off on your own. I’d have done the same. Sometimes sadly they do get a little over enthusiastic, I know! One kindly offered to call a taxi for me as my phone suddenly dipped and ran out of power and the pay phone broken of course, a couple of years ago. I made a point of politely telling him I couldn’t climb into high vehicles so could he please ask for a standard car and not a high vehicle. I heard him order it and he didn’t ask at all .. and .. a minibus arrived! No steps to climb up. Had to send it away and the driver wasn’t happy despite me saying I did ask the guy who phoned. I went back to the volunteer and said .. Could you please phone again if not too much trouble and this time ask for a standard car? He insisted he asked for one but I was at his side and know he didn’t. He got really offhand with me so I said of possible I can speak to them? I did and eventually got my taxi about an hour later. I know the majority of these volunteers are wonderful and efficient, especially the people in the cafe in our hospital . They are excellent. They take people’s food and drinks to them if they are having hot sandwiches and soup etc., and know when someone needs something carrying etc. They are discreet and polite.
I am flaring at the moment, after 3 weeks I called the nurse helpline and asked for a steroid injection - I was sent an appointment for 4 weeks later. Then the day before the appointment, I had a call from the rheum clinic telling me my appointment was cancelled and giving me another one for 5 weeks later- so bringing the wait to 11 weeks.
Before I had mine at the hospital - I had called the GP to see if it could be done at the surgery and he said that sometimes they were, when specially requested. I didn't mind going to the hospital at all but I had thought they would rather have done it in the surgery.
I experienced pain in every joint so made an appointment to see my doctor, she thought I had broken the cuff in my shoulder so promised an immediate scan, whilst waiting I I experienced same pain in other arm, knees basically in all my joints and ended up in A&E. Whilst there my bloods were taken and they sent me home with crutches. Two days later my bloods confirmed high levels of inflammation. I was then referred to see a Rhemertoligist. 8 weeks later and in debilitating pain I was diagnosed with sero positive RA. I was given a steroid injection until my MTX kicked in. So in all I spent at least 3 months in hell.
MTX attacked my lungs so had to come off it ( don t worry it only happens to 2% of people on MTX) most people are great on it. Have your injections been delivered? You will find them easy to use once you get your head around it. I was terrified at first, but literally couldnt wait for my next injection. I'm sure the doctor will be able to help you use it. So shocked that you have to wait that long, it s normally really quick. Good luck x
Thats a really harsh way to find out you've got RA plus the double whammy of the methotrexate attacking your lungs, i hope they recovered OK.
I find it's quite brutal how we are kind of left to toddle along in-between therapies. Although I don't take much pain medication because it upsets my stomach so maybe thats where I'm going wrong 😁
No i haven't got the injections yet (I would totally gone rogue and just injected one ha ha ) I get 1 months supply from hospital and then on prescription from GP.
I hopethey get a cancellation or something, im going to ask if they do a walk in clinic but who knows.
2😂😂😂😂😂 I was going to suggest just giving yourself a stab, but I would be wrong and get many people complaining to me! I do take pain meds A large glass of wine or 2 with lots of ice. But on a serious note I take paracetamol and codeine. I know it s not to be taken long term ( in case I get told off for that)! But hey ho pain is pain!
I am of the opinion that if medicine is about anything - it's pain relief. The control of pain is so important for the well-being of all patients whatever their problem. It helps to cope with all the other troubles the illness brings. It should be a priority in a disease like RA. And on the whole it is a priority with most consultants. But sometimes they have to be reminded!
I was terrified with my first injection and thereafter for a while. When I took my 2nd biologic my nurse went on about anaphylactic shock I was terrified and sent him packing! Can t believe that now today did that, as now I really don t give a ....!
Although starting on MTX I'm going to stay off the sauce until my body gets use to things, so I'm chugging pints now while I wait (that was a joke before I get told off too 😜).
I can imagine after a few stabs of the metoject it will become 2nd nature. After I had my 2nd daughter I had to inject anticoagulants (had c section) everyday for a few weeks and it didn't bother me so I can totally do once a week.
Yep I had 3 children naturally then C section Omg! All sorts of complications for a few weeks, my beautiful son Hugo who is 19 now nearly died! I started very early having my children I was only 20 with my first child. I'm now 56 four children and 3 grandchildren toboot! And add RA to the mix! You keep on chugging on your pints respect from me anyway 😂😂😂😂😂
Thanks feel too young to have 3! 5,3 and 1. But as I stared I started very young myself. My children are 36, 33, 23 and 19. My profile picture is me with my daughter and my granddaughter. Great photo of you too if that s you!
56 i can imagine is lovely to be a gran, can play with them and then send them home 😅 I love being a mother but the sleep deprivation hurts ! My friend who at the time was 43 had her first baby is permanently knackered, very happy but knackered!!
No my photo is Marion (the mum in the TV show Happy Days) you know the one with The Fonz. Could never get my hair like hers 😆
To be frank I think that is ridiculous. I had already sussed how to do it watching a decent youtube tutorial. You practice with a dummy - 30 seconds then do the real think 1min given a little understandable hesitation. Go through all the 'blurb' so a few more mins but you could read this at home. Honestly, it is poor use of time to make you endure all that you are going through for a couple of months - you'll use more NHS time just trying to cope.
I would certainly call the GP / Special Nurse etc and see what they can do. It's time to make a little polite nuisance of yourself methinks.
Hi Marion. Did they tell you it was a ten minute appointment? When I had mine last September we were there getting on an hour. She explained all about the MTX and it's side effects, took all health details, checked all joints, did weight, height and BP, took bloods, then explained how to use the pen and I had to try it on a pad and then organised for us to take home a sharps box. She also explained about the blood tests and when to have them over a period of time. They may have changed the procedures now with the Covid problems but I just wanted to forewarn you that it may be a bit longer than ten minutes.
Before i had the oral methotrexate the nurse went through all the side effects and testing etc on the phone, I've been told to make sure I've had a blood test at least 2 weeks before appointment; I hope they don't take an hour, although can't complain I will do anything for it! I sure the physio said 10 minutes but I might have misheard as couldnt get over the date of it !
Thanks for the heads up, will take some sandwiches 😆
I used a pen for Benepali and found it really hard to use. So asked for the syringe delivery and because I've injected Fragamin it was ok and no need to retrain. Is it the supplier (pharmacy)whose teaching you as it was when I first had Benepali. I think the syringe is much easier and a lot less painful and more controllable. Could be worth asking if you can use the syringe method and if so the GP's nurse might be able to teach you if you've not injected before. It's bad to have to wait until November so that is just my thoughts to expedite using the MTX, but they may not be able to supply til Nov and of course you need the stuff to be taught how to use.
We are roughly 30,000 members on here & there are roughly about 400,000,people with RA.(?) in U.K.....so - not enough staff to cover every eventuality could be the answer?
Sadly my step dad died of cancer in May, he was in immense pain and my mum desperately fought to get adequate pain relief for him and it was made so difficult. He finally received a morphine prescription 2 days before he died , my mum will not forgive herself for his suffering , she thinks she let him down. They were let down by various Dr, he was only on over the counter pain killers for metastatic bone cancer.
I personally think to wait until November is too late and I'm politely asking them to review it, im not going to sit back and wait without at least asking; I don't expect the NHS to revolve around me but sometimes things can be overlooked.
I understand you have had a very upsetting experience & that you feel you have had substandard treatment.
Of course you should ask for a review of the date....but have you thought of writing to whoever you think might be the most receptive, setting out your situation? Telephone calls tend to be answered by people with no authority,& often no knowledge of your condition....so they can only box tick.
Phone calls also tend to become very emotional & leave the patient high & dry, whereas a factual letter often gets a result.
If you’ve got the prescription, look on You Tube they’ve got instructions for pens and syringe. 😀 If not I think I’d get really arsy and insist . It takes a rheumy nurse 5 minutes to show you!
If I was moved to the bottom of a waiting list for being insistent I'd raise a complaint. No individual or health board has the power to purposely create or deliberately perpetuate ill health in the UK.....thankfully.
We all deserve good , timely care and need to make sure we get it.
Part of the education is about clearing up the liquid incase of a spillage or the pen gets broken. Its unlikely to happen but MTX is a cytotoxic drug after all. Essentially it is chemotherapy, even if in a low dose x
To be honest it's really starting to bleep me off. We have to be back at work yet are getting next to no medical care apart from a 10 minute conversation every 6 months if lucky.
I'm not blaming any individual nurse or doctor. Something needs to be done though. If social distancing is the problem surely the can find other venues for consultations etc.
I've been waiting 5 weeks now just for blood forms. Its ridiculous. I have been polite but insistent when chasing. But it doesn't seem to get me the forms.
On one hand I don't want to complain because as I say I don't think it's doctors or nurses fault. Maybe a complaint to my MP might be the way forward.
It might be best giving the department one more chance stating that if the forms don't arrive this time you will be raising a complaint with PALS. Then make sure you do it, if they don't arrive. I have found written requests get action, verbal not always so.
I submit written update notes too at each appointment, stating any help I have requested and what action was taken. I ask for these forms to be scanned into my notes. They have been, as I requested all my notes via freedom of information and my updates were there.
The system is broken and individual practitioners are struggling, but by accepting poor care all we do is permit the system to fail even more.
That's interesting. I regularly ask for copies of my notes but it never crossed my mind I could submit my own. How to you physically go about doing that? Do you send them in by letter? Do you find they are read? Do you feel it makes a difference?
Submitting my written updates has been a game changer, as there is no denying or misinterpreting what I have said. I take 3 copies to my appointments with the consultants name at the top, the date, my personal details and with 'for entry to patients notes' typed on it.
The update consists of an A4 page of bullet pointed notes, maybe around 3 /4 issues I feel need addressed or answered, and similiar with any improvements, self help I have been undertaking.
I state my meds and how many times I have needed help from the helpline and GP since the last appointment.
One copy to the consultant, one for me to talk from and one for my partner who annotates his, with important points from the consultation, making it very clear what he is doing.
When I am asked how I am, I verbally expand on each bullet point, keeping it brief and to the point. My appointments run to time, save wasted 'thinking' time , and are straight to the point. The biologics consultant I see voiced that she wished more people were as prepared for their appointment.
That's brilliant. If I get to see anyone in person again I'm definitely taking that up. I've read things on my notes I don't agree with, this would really help clear things up!
I started using metoject during lockdown. The rheumatology nurse sent me a link to a video to watch. After that I spoke to her and she asked if I was ok to do myself or did I need a face to face lesson. I decided to go with no face to face. I watched video quite a few times but have been injecting successfully ever since. Why not ask for that option?
I saw my consultant about 2 months ago, she said I could switch from Methotrexate tablets to injections. The following week I saw the nurse to show me how to use the pen and started to inject myself the next week.
So sorry to hear the delay in your training session for use of the metoject pen. I had mine at home. Perhaps it does vary in different parts of the country. I live in North Devon & despite everything that’s been going on I cannot praise the NHS enough for all that they have done for me over the last few years & in particular these last five months.
Unfortunately it depends on where you live. I am in Aberdeen and during my shielding period I had great responses from my rheummy team. I had bad side effects and I sent them emails and we spoke on the phone, they even had me in twice with full PPE precautions. I tried 3 different biologics during the 5 months. I cannot speak highly enough about my team and consider myself very fortunate. It is not my teams fault the drugs are not working for me and the side effects are horrendous
If its any consolation I have had no DMARDS for 15 months when I was taken off Methotrexate by my GP. I keep ringing the hospital and they tell me I'm on the waiting list to see the consultant. I have had to leave my job as I could no longer manage it because of pain and swelling. Im just really worried over what damage may be happening to my joints.
I do hope you get sorted in November as the Metoject is so easy you could follow the instructions in the box.
I dont want to complain as I no their busy with everything Covid. Not really sure where to go from here other than just wait. I keep ringing the rheumy nurses so cant do anymore.
This is really unacceptable, don't want to stress you but but to leave you this long is terrible. Can you look up the Rhematology consultants and email their secretaries, this is way too long to wait xx
That is a really surprising length of time to wait - and to be without your DMARD for 3 months can't be right. Why can't you have the tablets until the changeover?
I don't understand why this should be. The practice nurse at your GP's surgery might be able to instruct you, but I'm not sure whether that would come within her/his sphere. All my rheumatology care, including instructions in syringe and metaject use, have been handled by the hospital.
Good that you had a successful a telephone appointment with a physio - they are so difficult to come by these days.
You are having a difficult time, Marion. Anything that upsets the stomach is no fun. And it's not easy to find something that doesn't if your stomach reacts like that.
I do hope everything turns out well finally. Just a question of persevering - which can be frustrating, of course. Good Luck!
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