Hurting, Tired, Sore

You don't mention what dose of pred you are currently on.  When I had flares I had to jump right back up to 20 mg .  This worked for me..pain went away.  Then after 2 weeks I began reducing.  20 mg for 2 weeks then 15 mg for 2-3 weeks then 10 mg for 1 month then dropped by 1 mg a month.  I'm on 8 mg now and will now go even slower by 1/2 mg a month.  I do this by alternating days i.e. 8 , 7 , 8, 7, 8 ,7 for one month then drop to 7 mg for a month then 6 ,7,6,7 etc

hopenthis helps!

nancy

 

You did not say if you are under a rheumatologist .I was referred age45.After several flares and a bad reaction to steroids they were stopped.Am now on methotrexate injections which keep pain to a bearable level.At night take amitryptiline 10mg three hours before bed then two paracetamol and a slow release tramadol 50mg (all on prescription)and this enables me to sleep without pain waking me on moving in bed.Everyone is different-hope you find something that works for you

Sorry Dan - not really any options for PMR itself. I have used Bowen therapy, it kept me upright during the 5 years I didn't have pred at all. Didn't help the pain though. My osteopath helped too. I also have myofascial pain syndrome - keeping that under control allows me to manage on a lower dose of pred. Wet and dry needling and steroid injections into the trigger points in the shoulders and low back made a major difference. Manual mobilisation techniques for MPS have also been fantastic.

However - if you have a proper flare - and it sounds as if you do - then your only real option is to go back to 20mg and see if that works. If it does, you COULD assume it is PMR and get on then with a taper. I had been down to below 5mg about 18 months ago and was fine - and out of the blue I had a flare, different from the start. From one day to the next I couldn't walk up the gentle slope into the village without gasping for breath. The usual PMR stuff didn't arrive for nearly 3 weeks. Having ruled out everything else that seemed reasonable, we assumed it was GCA affecting the thoracic arteries - and 15mg of pred did the trick. Since last February I have tapered back to 7mg - but was stuck at above 13mg until the early summer and got to 10mg in the autumn, 8mg by xmas.

If I were you I would go back to 20mg and see if that works. Once the symptoms have subsided, drop relatively quickly to 17.5, then 15mg. If it doesn't work pretty well - ask for more investigations. Just in case you have something else. 

And no - many patients have pain and stiffness all day. Some doctors then come up with the daft idea that means it isn't PMR! 

You say you have pain all day long - is it worse at night? Between midnight and 3am say? Just wondering.

I doubt that the tens unit will help much because this disease is caused by inflammation which makes the muscles hurt. I know a few people have mentioned methotrexate and that might be what you need from your doctor. My own personal experience was that it didn't help me but it does help some people. It is possible to that your pain is not all from PMR. Has your doctor tested you for rheumatoid arthritis? I ask this because you're complaining of pain in the joints and typically PMR pain isn't specifically in the joints but rather in the muscles. I would absolutely consider seeing another doctor. I don't know that you need to see a GP with rheumatology background but certainly rheumatology knowledge is important. And I think the more you're on this site the more you learn. I certainly have. Good luck with this I hope you get the help you need.

I have reduced my Pred dosage from 20mg to 7.5mg.  At around 12.5 or 10, I realized that I can minimize pain if I also take 800mg of Ibuprofen at least once per day.   You might try 800mg three times a day for a few days and see how you feel - assuming that you are not already doing so.