Update on the struggle

Update on the struggle

So I emailed the rheumy nurse and told her how I feel and how I need some help as I can;t keep working full time feeling like I do and falling asleep at work from the fatigue. She asked me if my GP had called rheumatology and asked for an emergency appt and I told her I don;t think that he knows he can. There is a very distinct line here about what GPs and what specialist do and GPs don't step over that line. Anyway after some discussion about how we the patients then get left, like I have been since April in pain and not coping much becasue if this stupid unwritten law, she agreed that she will get me an appt earlier. So instead of the 17th I now go on the 10th August. I said well what do I do until then and the answer was go back on pred. I said well unless I take at least 15mg a day it will be pointless. Apparently the drs don't like you on that dose for that length of time so I can take 15mg for a couple of days and cut back to 5mg a day. I may as well take nothing really at 5mg.

6 Replies

  • It's strange to me to hear all this. I get told to take much higher doses but obviously we have different medical histories etc.

    I really would complain about this Situation to the Rheumy when you see him. The nurse should actually ask him what dose of meds to take until he sees you .

    Thinking of you x

  • I have no idea they are adverse to people taking steroids here for some reason. I am going with the 15mg for a few days so I can at least get some relief. I may drop down to 10 but I want to stay on that at least until I see them. Then it will be a few months before I even get a new biologic by the time all the approvals etc are done. I can;t function working full time feeling like this.

  • People with chronic respiratory conditions tend to have Recue packs which consist of steroids and antibiotics so that they have the power to stop themselves getting worse. I tend to take what I have to take to stay well enough to look after my children. My husband is away a lot and no-one is going to look after them for me! My Rheumy is unquestioning when I tell him what I have taken but the Rheumy nurse is far more conservative if I ask her advice beforehand.

    I hope you soon get things under control xx

  • yes I have that too so I now what you mean. I think the Drs here are conservative with steroids not sure why. I guess the nurses are more conservative as they are not Drs, who knows. It will be a while before things are under control as I will have to wait for a few months after my appt to find out what the next drug will be then wait for the approval process to go through. So I have a bit of a journey yet

  • I do hope you can get sorted and some relief. My G.p upped my Preds to 15mg on the 14th of June for 4 weeks. Since had a nasty chest infection for 3 weeks so last week he upped it to 40mg for a week . Back on Thursday. I am lucky with my G.p looking after things. There is not much liason with Rheumatolgy though. Missed 3 weeks of Mtx which is telling now.

    Fingers crossed for you x

  • My GP is really good, but they won;t go against what the Rheumy has ordered here. I have taken very high doses when I get a asthma which I now get quite severely when I get a coughing cold or bronchitis. I am going to tell him next time I see him what the Rheumy nurse told me and leave him their contact number. But I live in hope that once I am on something new in a few months that it will last longer than 12 months

You may also like...