I have been in remission for about year and a half unfortunately coronavirus hit the UK and my rheumatologist decided to take me off my RA meds due to low neutrophils and white blood cells and told me to contact my GP for steroid injection in case of a flare. I have been of medication since March 17 and for a while was doing OK but now I am having full on flare and decided to finally contact my GP. I had over the phone appointment with my gp surgery this morning and they said that it's rheumatologist who ment to be injecting me with steroids I tried to explain that she told me to contact them. However gp wasn't too happy about it said that it isn't very fair that I am saying that they should do it and told me to contact rheumatology department which I just tried doing. No luck! There is only recorded message that says 'due to lack of staff we cannot answer to your calls or emails sorry for any inconvenience'. What on earth do I do now? Any thoughts or advice will be much appreciated. 🖤
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Morigan
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I feel for you....sometimes u just feel u r on your own fighting this disease, when u get that reaction from a GP. 😡When I needed a Depo medrone (steroid) Injection (Before Covid) the doctor was happy to do it at the surgery. I have a Rheumatology helpline where I can ring for advice and leave a message and they return my call eventually. However I did recently pay privately to see my Consultant as I hadnt seen him for a year and needed advice and a plan......it was well worth it and put my mind at rest. There is no need to suffer with intolerable pain these days. Take care
I can deal with the pain I am much more worried about damage to my joints in a long run being off all my RA meds. Also in my understanding active disease puts me in higher risk group than sulfalazine.
I really feel for you. My Rheumatology team now say go to GP during Covid, GP has nothing to do with my Rheumatology care and actually said 'why are you coming to me' when I contacted them. If you have the name of a Rheumatology consultant I'd ring the hospital, ask to speak to the secretary and explain your position. I've taken the easy way out and decided to wait for my review in August but I will be asking some questions then and wanting action.
Seems like I am in a very similar situation. My next rheumatology appointment is in August too. I will be calling my gp again on Monday as they are part of my shared care team. Hoping to speak with a different doctor than the one I spoke with today. Maybe I will get better luck then.
Not on you need help. Your first port of call is your Rheumy clinic which you did. Your Gp could give you stronger painkillers and inflammatories . It your rheumatologist that really needs to help you. Ring your rheumatologist secretary. My friend is a secretary to a consultant and I believe most are still working. You will unfortunately need to be proactive and push and push till someone helps. It’s all very stressful. Maybe others might have done good advice
I did call rheumatology secretary there is only recorded message that says that due to shortage of staff they don't take any calls or answer to emails. Not sure how to talk to them or ask for help if I can't contact them.
That's awful that you are between two lots of people neither of whom want to help you.
If you can't get hold of the Rheumy team, then you must go back to the GP and say so. I can understand that the GP feels he/she is working in the dark if they don't have a letter from Rheumatology asking them to do this.
But it is their job to weigh up the pros and cons. If you have had steroid injections previously you can tell them that. Also there may be confusion in that they may be assuming you are asking for a joint steroid injection when I presume you are asking for an intramuscular steroid injection to tide you over a flare. They might be happier to give a course of steroid tablets, so ask them as they are more used to doing this for people with asthma etc.
But your first port of call is the GP, if nothing else they may be able to contact the rheumy team on your behalf.
Thank you very much for your reply. They should have a letter from my rheumatologist asking them to administer steroid injection as I have the same letter. And they always sent it to me and to my gp. There is advice to my gp in it on what steroid and how much to inject in case of a flare.
I'v never had an injection before but I still have some prednisone tablets at home I will call my gp on Monday and ask if I could maybe take them instead if they don't feel confident with the injection.
Oh how awful for you - what a situation. Hmm, if you can't get hold of rheumatology that is hard. I guess you need to go back to the GP again and explain the lack of response - maybe tell them the helpline number so they can check for themselves, if they don't believe you? I hope you get some help from the doctor.
I think you could call them back today, if you can face it - you did what they asked and called rheumatology and got the message that they cannot help. x
There is this weird system at my gp surgery you have to call them at 8am to book an appointment for doctor to call you back on the same day. So I will have to call them back at 8am on Monday to speak with the doctor not just administrator. It's ok I can wait few days.
Oops sorry Morigan, double-posted the same thing somehow - thought my first reply hadn't worked. I wasn't nagging you! They do the same system at my doctors too - thankfully they also introduced online messaging to the duty doctor during this lockdown. Hope you manage okay over the weekend - be good to yourself. x
So sorry you are suffering. There's some good advice here and I agree that your GP should be prodded into helping you today because your Rheumy team are unavailable!
Having a short course of Prednisolone could be the way forward if the GP is not keen to give you an IM steroid injection.
Good luck - I hope you get some relief quickly.
Contact NRAS they may have idea how to help you. Nothing to loose
I’d call your GP back and tell them what you’ve told us. Keep on at them. If there is no rheumy or nurse then that’s what you will need to do. I hope you get sorted soon x
I’ve definitely had to deal with awkward GPs in the past and would have felt scared of ‘wasting their time etc’. It’s important to contact them and you should be persistent, yes they may be busy but it’s their job to look after and you are well within your right to get this sorted. If you have the funds available I’m sure you could get an injection fairly quickly privately. I’ve had two since the pandemic started, both within about 3 days of ringing up.
Do go back to your docs. It’s so worth it. I had my knees done on Thursday and feel really transformed! steroid tablets are good too but if your pain is isolated then the injection has been way better for me and allegedly less side effects and better against the Covid nightmare??
Make sure you have kit to protect yourself going there (search ‘make a no sew face mask’ online). Disposable gloves or washing up gloves that you can wash with soap and water before you take off. I wore a disposable shower cap too and then changed my clothes and shoes stayed outside my house after. I looked a total fright 🤪but know I kept myself as safe as I could be.
It’s so outrageous that we have to push for things but you Must and your GP Must take care of you and he Must do it now. If that fails call 111 and say you can’t get the treatment you need and you’re in trouble and can’t cope. Don’t pretend you can... really don’t. They Have to help you and you shouldn’t Have to go through this. They are letting you potentially damage your body irreparably. They shouldn’t have taken you off the pills. Is it worth asking to go back on them? Clearly you might need them as well as the steroid to tide you over and get you back where you were. I’m sure I read someone post about remission v pills remission and the two not to be confused.
My consultant aspirated my knee at the same time on Thursday too and used cold numbing spray and she put the steroid in with a local. I wasn’t expecting that because when they aspirated my knee when I ended up in hosp in Feb they just went straight in.
Good luck!! Pester the cr*p out of them until you get what you need!! (Sorry did the poor language! 😊)
I think decision to take me off sulfasalazine was very rushed I was trying to question my rheumatologist's desicion but she didn't answer any questions just told me to get in touch with my gp if I get flare and pretty much put the phone down on me. The more I think about it the stranger it seems to me.
From the little experience I have with the other hosp rheumatology they were desperate to get people off meds because of covid. Great eh. Don’t accept it in my opinion. It’s quite unforgivable to have out you in this position.
I pray for you to get well soon and you could get appointment and the better results letter on .I can imagine your physical and emotional pain because I an also having same circumstances .Do not forget to pray because ,my believe and experience is when you have been failed to get any support from your doctors even you have tried your best to seek help ,you broke in tears with helpness God definitely ease your pain and comfort your stress ,also bring some solutions that you can never imagine
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How do you guys manage a flare up?
Angel54
If your rheumy has said to increase mtx& folic acid how long would you expect to be given your script to do it?
Not sure what to make of this.
