Hi folks! My aches/pains started mid January and gradually got worse. Doctor said it was probably a viral infection after flu - never had flu. Got so bad I struggled to get in/out of bed, move in bed, use stairs (even stood by a step for minutes at a time almost scared to step down - felt like a child just learning), couldn't walk, etc - you all know what I mean. I started searching the internet for anything that might match my symptoms - not easy as several possibilities came up. Two months later I contacted NHS24 - they were great and said I should request a blood test when I next saw the doctor. Didn't need to, doctor was ready for me (obviously NHS24 had already been in touch). Anyway, confirmed PMR and was put on 3mg Prednisolone per day (seems low compared to most - don't know why). It has helped but i still waddle when I walk and shoulders and upper arms ache for about 4 to 5 hours afterwards. Then it gets a bit better but if I move my arms the wrong way (stretch, twist) without thinking, I get a piercing sensarion like I've just been stabbed and can't move my arm until the pain subsides. I am also quite depressed but think that's due to frustration because I was previously fit, active and healthy and now struggle and find it an effort to do anything - even find washing painful and difficult to use pressure. Also find I have lots of headaches and paracetamol is useless. Sorry I've gone on a bit but I just needed to get a few things off my chest - to people who understand what I'm going through. Hope someone out there replies. :?
Hi
I dont know what SED rate you were when your blood tests came back but 3mg of prednisolene seems ridiculously low. My sed was 65 and i was immediately put on 30mg whiuch seems to be the around the intial 'going rate' A year on (aged 51) im now down to 10mg - so you can see the decrease is gradual. I would be back at my doctors or specialist if i was in your position and ask for an increase. I understand that steroids have long term impact but you need some instant relief of your symptoms. Some say that the 'depression' bit is partly due to steroids and PMR itself so its difficult to know but if you can up the steroids a bit im sure you will feel much better. By the way i used to be very active and sporty and its a real jolt because this disease demotivates you and makes you lethargic. I also put on a bit of weight so you really have to dig deep to try and be positive. best wishes Tony
I agree with Tony. It sounds as if you are not getting enough predisone. I was diagnosed in March and started with 15mg and have since been decreasing by 1mg fortnightly. I now find that 11mg does the trick after going down to 10mg, when on that the pain returned so am now back to 11mg. my ESR has decreased enormously, from 72 to 34 and then 14. My doctor seems to know what he is doing. I have regular ESR checks (monthly). But I must also add that I take anti-inflammatories as well as steroids. As a 75 year old, I will be glad to get back to n0rmal!
Hello
Yes, it sounds to me too as though you could do with being on a higher dose, at least for a few months. My PMR started 18 months ago, during a particularly awful period of stress at work. I didn't pay much attention to the stiffness until one day I got out of bed and crashed into the wall, because I couldn't stand up. By the time I was diagnosed I had sussed out what was wrong and was practically begging for the steroids. After my first 20 mg dose I felt a tingling sensation and the symptoms drained away - it was like magic. Now the hospital rheumatologist is trying to get me down to a minimum dose. At 55 they think I'm not a typical patient - they should read this website! 2.5 mg a day and my symptoms are back with a vengeance.
But Tony is absolutely right, we have to be positive and the main thing we can do here is support one another. I find a TENS machine helps me sometimes in the morning (at least it takes my mind off the pain!) and I take 2 x 500mg co-codamol tablets on bad mornings, and that helps quite a lot.