Expected wait for injection, am I being impatient ?

[Marionfromhappydays]

I'm currently on no medication for my newly diagnosed arthritis, tried sulfasalazine and had mild allergic reaction so that was stopped, tried MTX tablets and they made me vomit and nauseous for about 5 days so coupled with some stomach problems I have had the green light to go onto the MTX injections.

Its been 2 weeks since i stopped taking MTX tablets and am awaiting a training session at my local hospital as to how self inject (metoject pen). I'm not worried about injecting I just want to get on with things as I know it can take months to work.

I've been emailing my nurse about having a steroid unjection in the butt, they've said yes faxed a prescription to my GP told to leave it 48 hours to arrange an appointment . OK fab but

I asked the rhemy nurse when my appointment will be for the MTX injection session and she said I havent got one yet but it will happen eventually ???

She said until then the steroid injection will help.

I've been in pain since beginning of May, trying these drugs sucks and I just want to get on with it, my children have started back at school and I'm only 3 days into it and getting out of bed in the morning and getting up and out is a major challenge, I don't want to let my kids down. My husband works shifts so isn't here to help, im beginning to blame myself for having all these side effects.

I'm wondering if its worth asking my GP to teach me how to use the metoject? I can't wait indefinitely with this raging in my joints.

I have lost all perspective of things, I apprecaite everything nurses do and they have been lovely but not having a date for the MTX training has enraged me ! The nurses don't seem to have any urgency where as I would get myself down there right now !

RA is all new to me , am I being unreasonable ?

Big thanks liz.

Sorry for the absolute ramble, just received the email and am triggered 🙄

[RosieA]

I would certainly ask if a GP or nurse could instruct you. It is so easy to use the Metoject pen as to be ridiculous to create such a delay. No doubt, however, there is some strict protocol that must be gone through. My training took 10 mins, including all the travel instructions etc.

Please don't blame yourself for the side effects. I did the same thing when I failed to tolerate both MTX (injections) and Leflunomide but now I am on something else I feel so much better even if some symptoms still problematic. I think we are all so keen to feel more like ourselves that we become desperate to fit a square peg in a round hole. Finding the right drug can take some time. Phone the GPs / specialist nurse and ask how you can expediate this. Wishing you all the best.

[Marionfromhappydays in reply to RosieA]

Thanks Rosie, RA is hard isn't it 🙄

Really apprecaite your reply x

[RosieA in reply to Marionfromhappydays]

It certainly is. My autoimmune disease is on the move however, it's now in the inflammatory arthritis with sicca, undifferentiated connective tissue disease and latterly I have developed a malar rash. Am currently waiting for my next rheumatology appointment having the malar rash and some diffuse hair loss confirmed by dermatology. Who knew that AI diseases could give you so many surprises!! Good luck with the 'determined' phone calls. xx

[Marionfromhappydays in reply to RosieA]

it is the condition that sometimes never stops giving!

So sorry to hear of your additional AI conditions, I hope the rheumatology looks after you. I've just contacted the GP via online scheme thing they have so hopefully will hear back .

X

[RosieA in reply to Marionfromhappydays]

Great news! x

[Brychni]

Hi Liz - I know EXACTLY how you feel. I feel that my husband has really taken up the slack while I have been trying various drugs and been incapable of operating on full throttle. However, he has gone back to work now and as you know I am waiting for mtx too and had the steroid injection day before yesterday. It really hasn't done much but I feel much more energetic and less 'slow'. My kids are also back at school/football training etc so I have been in the car solidly for the past few days! I've noticed that handling the steering wheel really causes stiffness and then pain. I have to alternate hands on the wheel while the other gets a rest in my lap! Also my clutch knee: OMG I was actually wincing for most of the drive. But the nasty pain in my right foot has died down a lot and now I just have a vague burning. I had been told that I would be discussing the chest xray after the steroid injection but it had still not been looked at. But, I am not in any hurry. I think you have more pain than I do and my pain seems so inconsistent with what others experience I am beginning to wonder if I have been misdiagnosed!

I also have the ever present threat of a migraine hanging over me like the Sword of Damocles and as I've said before a migraine is far worse than any of my other issues. In fact I had a long waited for online video appointment with the Migraine Centre yesterday and when I was describing my headache history to the consultant I became acutely aware that Undifferentiated Inflammatory Arthritis is small fry in comparison - yes pains can be awful sometimes and debilitating but not to the extent of a migraine. Medication, acute and preventative no longer works and it usually means 3 to 8 days of me on all fours rolling my head about on the bathroom floor, sometimes throwing up and wetting myself. I've said before that I had hoped that meds for RD might help and was prepared to take 'anything' but so far all meds have caused more headaches and I am really concerned about the nausea associated with mtx that I keep reading about. That's one sure fire headache trigger for me.

I wonder if the migraines have given me a high pain threshold and I just can't take the RD seriously - if you know what I mean.

So - in answer to your original question: no you're not being unreasonable. Keep calling them and make them understand how debilitating your pain is. If it's interfering with your life then they must take you seriously.

Let us know how you get on with the jab. x

[Marionfromhappydays in reply to Brychni]

oh no i really thought the injection might have helped you more.

When things with the children restarted I realised how.much I took it for granted before when I was "well, like you lots of car journeys and now its coupled with trying to find a space close so I don't have to walk or stand for long.

I get migranes but nothing like the extent of yours, you've got so much to cope with, i expect its literally just one day at a time. You really don't need all this hassle of the arthritis and it being out of control. People have no idea of what it's like until they experience it themselves. Makes things even worse you can't just take 1 medication and it makes you even slightly better we have to run the gauntlet of trying different things until we hit lucky (so glad there are options though, dread to think if there wasn't).

You take care, hopefully they will pull finger out and do your chest x ray and get on the drugs x

[Brychni in reply to Marionfromhappydays]

I've had a few replies saying it is quite normal and that it often improves after a couple of days. x

[KittyJ]

Go get the steroid jab as soon as you can. Things are much slower than usual and they were never really fast in the first place. Getting yourself worked up about it will only make you suffer more so do try to be patient and once you have the jab things should be easier. I know it’s difficult when waiting for meds but you will get there it’s just a very difficult time to be diagnosed. It’s not the nurses fault or yours. Let us know how you go. We are always here to support you while you wait 🤗

[Marionfromhappydays in reply to KittyJ]

Thank you, yeah not the nurses fault more the whole system but its hard isn't it when your body is out of control.

Thanks for your reply x

[oldtimer]

I can really sympathise! Despite having loads of experience injecting other people and myself I still had to wait and be 'signed off' as competent. The nurse supervising me expressed surprise at how quickly I "learnt how to do it" and I did point out that I had done things like this before - she just looked vague as though 'What had that got to do with it?"

I think that they get into a mind-set and don't see us as individuals, just as things to be processed as part of their own protection against getting emotionally involved and not being able to cope with the overload.

But insights don't help you to get what you need - polite persistence does!

[Marionfromhappydays in reply to oldtimer]

Thank you, that's exactly it.

I've left a polite message on the rhemy nurses answerphone. Just a little nudge !

[AgedCrone]

Rule Number One...with RA.....you need a lot of patience! I know that is not what you want to hear right now..but that is the truth.

Sit back & think about the workload our rheumy nurses have....they probably each have at least 50 or more people in exactly the same position as you.....I am sure they will get to you as soon as they possibly can....

Believe me...most of us here have had to wait for treatment at some time...& hard as it is...unless more Rheumatologists & Rheumy nurses suddenly appear - we all have to learn to be patient & not get too agitated...because as as you have probably realised stress only makes matters worse....so just try to be patient for a little longer.

RA is a horrid disease...but these days the medication available is far faster acting...& once you get your injections sorted you will hopefully be in a better place.

[Marionfromhappydays in reply to AgedCrone]

I apprecaite you need patience with RA but having to wait who knows how long for a process that takes minutes seems counterproductive.

I use to work for the NHS and they are desperately underfunded and I wouldnt ever disparage the nurses, the system however let's alot of people down including the staff.

But you are right it's not what I want to hear 😆

I'm at least asking my GP if they can help ease the hospital s work load and give me a 10 min appointment to show me how to inject. Worth an ask.

Thanks for taking the time to reply

[AgedCrone in reply to Marionfromhappydays]

Tbh your GP has probably never even seen a Mtx injection pen...& unless your practice nurse has worked in Rheumatology neither has she. ...so they won’t have one to show you...& they certainly won’t have the meds lying around to inject.

Believe me I have spent time waiting....& tempting as it is trying to hurry things along .......it usually just leads to more frustration,

[Marionfromhappydays in reply to AgedCrone]

I will be totally surprised if my GP helps but makes me feel better to ask.

Who knows maybe might strike it lucky 😆

[AgedCrone in reply to Marionfromhappydays]

I think you will find your Mtx dose is prescribed by your Rheumatologist under a Shared Care Agreement with your GP. The Consultant prescribes the drug, informs the GP & under the Agreement the GP issues prescriptions....but the dosage is decided by the Consultant.Until this is set up things can be slow to get started.

As the drug is only taken once a week it is important the rheumatology nurse explains to you all the information you need before you start taking it.

It is not just a case of “here we go let’s take it”.

[CallMeSunny in reply to Marionfromhappydays]

Hi Marion...I think you said you’re in Warwickshire? I have been waiting for an urgent hospital RheumNurse appt, sent Consultant’s private medical secretary an email to say I’m away Monday, Tuesday and giving mobile number (Consultant on leave, due back Monday, know she wants to speak to me...hence notifying secretary)..upshot was that my wonderful Consultant rang me from home last night (!) to say did I know I had appointment for this coming Monday as she sees I will be away? I had no idea, of course. All sorted now after several calls to W. Hospital Appointments, Medical Secretaries...BUT...after checking they have my correct address and confirming they don’t use emails, she said it’s been happening “frequently”. If I hadn’t emailed the private secretary and she hadn’t forwarded it to Consultant, I would have been marked as a No Show and maybe wouldn’t have had another appointment for weeks! Like you, waiting for Methoject and possibly Biologic injection tutorial etc. Might be worth checking ?? I do hope you have good news very soon...it’s so frustrating for you, especially as you are a Mum of youngsters. Hang on in there...lots of deep calming breaths..🤞

[bubblyalex]

My gp sorted my MXT injections out. If I had to wait for hosp I’d be waiting for a long long time and I knew my gp was willing to help. After all it’s him that has to look after me when emergencies occur so he’s keen to get me up and about again.

[Marionfromhappydays in reply to bubblyalex]

well I'm going to ask if the GP can do it, worst they can say is no and i will still be in the same position.

Thanks for your reply

[medway-lady]

Here, its the company that supplies the medication (Health at Home) that give the instruction on using their product. Not hospital or GP's I had problems with the pen so swapped to injections and didn't need a tutorial as had done Fragermin by needle. But the delay here at least , was getting the funding for the medication. That took three months then things moved very quickly.

[Barrister]

I was flaring badly for 3 weeks so called my rheumatology nurse helpline 4 weeks ago. I was sent an appointment for a steroid injection for this afternoon (so, 7 weeks after I started flaring). Yesterday at 4.30pm, I had a call from the rheumatology clinic telling me that my appointment had been cancelled as the consultant had been in contact with someone With Covid 19 and the next appointment they could give me for a steroid injection was on 9th October so 12 weeks after I first started flaring. I’m disgusted with this so called Centre of Excellence known as Addenbrookes Hospital in Cambridge.

Clemmie

[Marionfromhappydays in reply to Barrister]

Oh Clemmie that is such a long time to wait I'm so sorry to hear this. It was snatched away from you at the mast minute too.

Do you think your GP could do anything to help, you can't go on like this x

Wishing you a change in circumstances asap

Liz

[Knit12]

My hospital showed me on the day they decided I would go on it. However, I had to wait for the delivery of the injections and then arrange to go in with the first one and do it with them there. That way they could note down when I started and point out the rules like not taking when you have an infection, plus they could also see if you are going to be alright and not take an immediate reaction. My GP and rheummy team DO NOT work together. My consultant tells the GP (or as she says asks, and the GP takes weeks and weeks to do it).

Be patient and take the steroid injection

[Evie3]

Hiya...not that it helps but we have all been there. You will need the steroid oral or otherwise as the injections wont work immediately.

I remember setting my alarm for 5am to get myself up and moving , which might help in the short term.

Stay strong.....there are so many new medications out there.

[Marionfromhappydays in reply to Evie3]

Thank you x

[Madmusiclover in reply to Evie3]

You may find you are not able to take oral steroids. They make me manic, paranoid and tearful. This does not happen with the steroid injection. Which in the early days was miraculous but now does not work....

[Marionfromhappydays in reply to Madmusiclover]

Back in may I was given steroid tablets (15mg) and i thought I was loosing my mind for the first few days , crying, so emotional. I was so worried, mentioned it to my consultant and she was "oh yeah that's normal for some.people'.

Wish she had told be before 😁

[Madmusiclover in reply to Marionfromhappydays]

Me too. They hope you will be ok I guess. Not sure what stats are....

[Swimming20]

I was in the same situation as you ..l had the Injections in the fridge and was waiting for a nurse to come and show me the ropes ..my body was racked in pain and was so depressed. I rang my health centre a d asked if the nurse could give me it ..then a week later the healthcare nurse rang with a date and time ..l told her when she came to the house what l had done..it was no problem..its so annoying that they make you wait so long good luck with yours xx

[Marionfromhappydays in reply to Swimming20]

Waiting is rubbish isn't it, glad you sorted things ans your GP nurse was good about giving you it x

[Egpa1]

I was the same, mtx tablets made me sick, cramps not nice. I have since been on mtx for 2 1/2 years now, much better once they kicked in. Good luck hope you are ok on them.

[Marionfromhappydays in reply to Egpa1]

Thanks so much for your reply, gives me hope . Glad they worked for you x

[Nuttyshirlz]

Hi I’m also waiting for an injection top up because I’m struggling to walk at min email my rhemy department last week nurse said will be in touch. Last time I had one I had to wait about 9 weeks. That was before coronavirus hit. As others have said you have to prepare to wait. They will get to you. And me. But it’s the waiting game.

[Angjoplin]

Can you ask for steroid tablets instead? It might be quicker getting a prescription than having to see a nurse.

[Marionfromhappydays in reply to Angjoplin]

It was more the tuition about self injecting the methotrexate I am keen for. Hospital want to show me but uts looking like it might be quite a wait. Frustrating as it only takes minutes to do.

Got a steroid injection hopefully next week (fingers crossed).

Thanks for your reply 👍

[Madmusiclover in reply to Marionfromhappydays]

Come round to mine! I’ll show you. 😂😂

[Marionfromhappydays in reply to Madmusiclover]

Getting in car right now 😅

[HamHammy]

I think you should phone up and pour your heart out and explain how this is affecting you and your lovely family. No doctor or nurse would not feel for you. Sometimes explaining one's emotions gets you further.

[Marionfromhappydays in reply to HamHammy]

Hopefully the rhemy nurse will ring me back Monday and we can have a chat. They've always been very nice, i am in absolute agony today and that was only 3 days of school runs, my poor daughter worries (I try not to show im in pain) she's 10 so isn't silly and can see .

Got to get on the roas to feeling better .

Apologies for the long reply! Big thanks x

[HamHammy in reply to Marionfromhappydays]

Will keep everything crossed for you

[Madmusiclover]

I totally empathise. None of the cheaper drugs suited me. Each cycle of trying each different drug, took 6 months. It’s such a long drawn out process. The steroid should help a lot so hang on to that thought. And you can have it again in the future if needed. I’m sorry you are struggling.

[Marionfromhappydays in reply to Madmusiclover]

thank you x