Sorry but I need some further advice if you don’t mind. I increased to 40 mg Pred on Saturday and then to 50 on Sunday due to pos GCA symptoms. I took 50 again on Monday and rang the nurse advice line for guidance. Unfortunately, for the first time since this all started in July last year, I didn’t really get the help I was hoping for. No guidance on dose or whether I’d done the right thing just ring 111 if you’re concerned. I said I didn’t think 111 would be able to help on this which was why I called them. Probably shouldn’t have said that. Coincidentally, and luckily, I had an appointment booked with my GP on Tuesday so discussed it with him. He advised stay on 40 for a week and then drop to 30 then take it from there.
However, I asked the nurse if she would schedule me an appt with my rheumatologist asap to discuss the way forward. I had a letter from the hospital today giving me a telephone appointment in 10 days time with a doctor I don’t know. I feel as though I’m being punished but maybe my doctor is just busy. Am I being over sensitive? Probably.
No I don’t think you are being over sensitive- and your phone call to Rheumy department shoukd have been treated with more professionalism…..after all they are the experts in LMR/GCA, not 111 helpline.
GP is a bit more sensible, but come the end of week from when you saw him see how you feel before you drop…and if okay I would inclined to drop to 35mg initially rather than 30mg as suggested.
Hopefully by the time you’ve been at 35mg for a few days you should have your phone call with Rheumy..don’t worry it’s someone you don’t know, might turn out to be okay.
But do keep notes on what’s going on…reasons for increasing and how you’ve been on increased dose - so you have answers should they ask!
Bit appalled at the whole thing to be honest. The nurse should have got hold of a doctor immediately and you should have been seen within 24 hours. Not 10 days. And the GP should have phoned the department and requested an emergency appointment. By the time you are seen it will be history and no evidence available.
OTOH - I don't mind seeing someone I don't know, I will always give them one chance! Sometimes they see things from a different viewpoint and they have no preconceptions.
Our helpline is nurses too although they never take a decision themselves - but I have the brass neck to hop on the train and go into the department to ask if necessary "I just happened to be passing ..."
It is a small unit where infusions and injections and whatever are done 8-4 daily so there is always a nurse there for that, And clinics run alongside so there might be a doctor about somewhere.
Sorry for the experience you are having. It could just be an unfortunate effect of how overburdened the system is at the moment that the first urgent appointment could only be done in 10 days with the first doctor available. It certainly wouldn't be personal or a punishment, although I know it sometimes feels like that when you feel bad already.
The suggestion of 40 mg from your GP is probably all the treatment options they felt confident to suggest at the moment until having more word from a Specialist. I would advice , however , not reducing from that 40 mg until after you have spoken to the Hospital Doctor then taking their advice from there. The 40 mg dose would hopefully give you enough protection until the appointment with the Rheumatologist. As DL said , keep good notes on your symptoms to discuss with them including rating your pain score from 1-10 in the morning , and the score and times of the day the pain might flare up.
The nurse was probably also at a loss , even with a lot of experience, your lack of response to the 50 mg dose you had which she would have expected to help may have made the possibility of you needing urgent care , or other checks to rule out other issues , the reason for her to suggest 111.
111 can act like a sort of triage , after the first call they arrange a call back from a hospital or out of hours doctor , whom will often then suggest you attend A and E or come in for Emergency Care , or to a department ( weekdays ) , if the symptoms require immediate checks or treatment. That GP on the phone usually also alerts the hospital that you are coming in so that you bypass the queues in AandE and virtually walk straight through.
I've used this system and received this advice many times over the years , I've also received ambulance assistance to get in via this route. Better to wait and do part of the ordeal over a few hours on the phone then go in for immediate attention than just turn up and wait for many more hours in a chilly , uncomfortable waiting area for the same response, especially in Winter or near to Christmas.
It might be worth trying 111 if these symptoms are continuing despite the 40 mg .
Or going to the Emergency Department where you should be seen and get fast tracked through to some proper checks for GCA but also to rule out the possibility that something else other than the GCA is causing the increase in symptoms and creating a GCA flare at the same time.
Getting other possible causes ruled out would be a good idea.
Is there the possibility that something else could also be adding to the problem , an injury , infection , additional activity or stress, or another preexisting health problem which might require it's own treatment or increase in drug dose?
Have you tried other pain medication , like paracetamol , as well as your steroids and noticed any improvement?
I hope you get some help and answers soon , just don't be afraid to walk in to the surgery or Aand E if you are worried and not improving and think you need to.
Many thanks Blearyeyed for taking the time to read and reply with your advice. I have made some notes and will make sure I have them to hand when I speak to the doctor. I’m not aware of anything else going on. I do take paracetamol and sometimes I think it helps but I do wonder if that’s just wishful thinking.
If you think the paracetamol could be helping , even if just a little at first , it is worth taking the dose you are allowed at the standard intervals over a number of days to see if it does finally help the inflammation from something that isn't PMR or GCA related that is triggering the added PMR flare.
Sometimes either a GCA flare or the high dose if steroids can increase the chance of neurological pain or migraine pain as well . If you have experienced severe migraine or neuro pain in the past it may be worth discussing and having it checked via the GP as well , just in case you may need some medication to treat those issues as well as the steroid for the GCA.
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