I'm currently into a six-week spell of pain in my fingers, thumbs, toes and and even beginning to feel it creeping back into my knees. I can tolerate the pain and stiffness but the fatigue and general permanent foggy head feeling is rotten and has been getting me down - my methotrexate injections, plaquenil and naproxen are just not hitting the spot at the moment so am wondering whether they have stopped working and I may need a medication review.
This morning I plucked up courage to request an urgent appointment at rheumatology - never an easy thing, it requires some real powers of persuasion but in view of my forthcoming holiday, decided to take the advice in the latest NRAS magazine and see if I can plead for a kenalog injection. Luck was on my side, the sister has phoned and will see me at 3 pm tomorrow. I can hardly wait! The warm feeling of those injections cooling away all that nasty burning almost instantly, I will dream about it tonight!
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Annielou
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Well done you for getting your appointment brought forward. Very sorry to hear you are suffering. Hopefully you will be sorted soon !!!!! yeahhhhhhhhhhhh xx
well done in taking the bull by the horns and getting an appointment so quickly. Hope you get the steroid injection and some relief from your symptoms and enjoy a wonderful holiday
let us know how you go on and take care cris xx
It's such a good feeling when you screw up your courage & get a result. Before I got this bloody thing I would have probably assumed that anyone who was suffering on a daily basis would get some sort of help automatically. But almost as soon as I was diagnosed I began putting up with all sorts in-between appointments without even thinking about it. I don't do that anymore!
Hope your injection helps loads. Don't forget to ask the nurse about anything else that's on your mind!
Have a great holiday. xx
Sorry wrote that all wrong as tired so am rewriting it. That's so true Luce! Before RA I used to see my GP about once a year - never query stuff such as why I was advised to take levothyroxine, get my eczema drugs reviews by repeat prescription and stick antihistamine over the counter as and when required - plus pop the odd ibuprofen if my gallstones were giving me jip. When I first got diagnosed with probable RA by GP I assumed it would all be treated as urgent and I would be a priority patient to get a quick diagnosis before damage was sustained or pain became unbearable. How wrong and naive I was then?!
Now its all self management and I get high with delight and relief if I get a friendly text back from the consultant via physio, or really depressed after seeing the GP usually because it reminds me of the long term nature of things and he never chats or asks me questions anymore - its just "oh dear its this RA one again" or so it feels to me. I'm the only one who's interested.
So well done Annielou for being proactive - it is the only way often and I hope it goes well - it does sound as if your meds might have lost their efficacy. Tilda x
Texts from the consultant, gosh your hospital is up with the times Tilda!
Our system is pretty outdated, you ring the nurse advice line and leave an answering machine message, hope one of them rings you back in the next couple of days (and that you are actually in when the phone call comes otherwise it's more days of waiting) and then it's basically beg for an appointment. Otherwise my routine appointments are 6 months' apart, an annual one with the rheumatologist and an annual review with the nurse. I know I sound negative, I know they're permanently pushed and the hospital staff are really fantastic when you can actually get in front of them but it is just SO frustrating at times! It must be worse for people who are not as pushy or confident to directly ring doctor's haughty PAs or PALS as I have done in the past.
At a previous appointment I overheard one of the consultants talking to a nurse and he mentioned that a patient, a pharmacist, had presented herself at A&E that day, in the hope of being seen to get a steroid injection and she was seen and sorted. So that is always at the back of my mind!
Thank you for your interest everyone, once in a while it's good to just have a little moan!
Sadly no steroid injection was forthcoming! The nurse spoke with the consultant and he said the oral typhoid vaccine, prescribed by the practice nurse at our GP's surgery about 7 few weeks ago, has interfered with my methotrexate and caused me to feel unwell (something I have suspected for weeks). My recent ESR reading is low so they have asked me to go for another blood test tomorrow and once the result is back, will only reconsider a steroid injection if my ESR is significantly higher.
The rheumatology sister told me I should have pointed out to the practice nurse who wrongly gave me the vaccine that I was on methotrexate so shouldn't be given live vaccines. So she pretty much told me it is all my own fault. Feeling more frustrated now!
Well how were you supposed to know that. It does make me cross. I hope you get the result you need from your blood test. 'Then you can get the injection you need. Keep positive and strong. Good vibes coming your way.
Thank you, I'm keeping positive and shall enjoy my hols come what may! In the space of half an hour this afternoon I saw three people today who were missing a leg ... I drove back from hospital and contemplated. Life really isn't so bad! x
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I am so nervous about my appointment with my rheumy tomorrow.
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