Realistic Expectations from Pred

No, it DOESN'T always take away all the symptoms, and no, it won't make you feel "energised" - except in the sense of the Duracell Energiser Bunny! I really wish I knew where they got the idea from - I was at a rheumatology meeting last year where we had a session on steroids The misapprehensions those doctors had about pred was mind-boggling. When we explained to them what most patients found or did not find, they looked bemused! And admitted it DID answer a few questions...

It is expected that in PMR you will get at least a 70% global improvement in symptoms in about a week or so. That varies though - in my own case the stiffness and muscle pain was 80% gone in under 6 hours, it may have been less but I was sitting at the computer, not doing something where I would notice the difference. The hip bursitis and and foot. hand and arm tenosynovitis took longer, some of it up to 4 or 5 months to go altogether. And a few niggles remained anyway - I have never been entirely pain-free but some is due to myofascial pain syndrome which responds some to pred but is better managed with other approaches, including steroid injections if necessary. The two are often found together and I personally believe that MPS and PMR are interlinked, they are definitely both caused by the same inflammatory substances, that is proven.

But the pred is only relieving the symptoms by combatting the inflammation that causes them. The actual cause is an underlying ongoing autoimmune disorder where your immune system stops recognising your body as "self" and attacks body tissues as if they were invading viruses or bacteria. This is what causes the inflammation - and that process continues in the background, with a new batch of inflammatory substances being released every morning at about 4.30am. That is why the morning is often worst (not always) and that continues unless you can find a way of taking the pred to pre-empt it. It is the continuing autoimmune disorder that causes the fatigue and it also makes your muscles intolerant of acute exercise. If you overdo things - you will feel as if you ran a marathon without any training. 

The fatigue and muscle soreness has to be managed separately - by pacing. This is a link to our "reading list" where you will find all sorts of links. Right at the bottom is a link to a post about pacing. You can also google "the spoons theory by Christina Miseriando" and "the gorilla in the house by batsgirl" - two allegories about living with chronic illness and how to manage your resources. You have to learn your limits - and stick to them. You will be able to do more - but you will have to build up slowly and you will have to learn to recognise where to draw the line. Lots of people say at first "I won't let this been me" - it doesn't work if you just fight it, you are wasting precious energy you can use better elsewhere. Learn to accept the limitations and work round them - and you can live pretty well with PMR!

A lot of us initially need more than 15 mg to treat the pain, despite what many doctors think.  I needed 25 mg to get to a functional level, but was down to 15 mg in a couple of months.  

We all balance the gains of reducing pain against the negative effects of taking steroids long term.  The pain is a symptom of inflammation and I have decided to err on the side of more prednisone to keep the inflammation down. Others cannot tolerate prednisone or are more concerned about its effects.  Each of us decides the best balance for ourselves- assuming we have a doctor who will cooperate with us.  

As Eileen said, you cannot beat PMR by fighting it.  We can only try to outsmart it!  And I am grateful that, if I had to have an autoimmune disorder, I had one that has a treatment.  Prednisone is not a cure, but it is a treatment that allows me to get on with things without too many limitations and no real suffering.

I was started on a higher dose, gradually lowered.  I felt no pain at all once I was started on the pred, didn't feel discomfort until I had reduced below 5mg.  My muscles gradualy did weaken due to more inactivity (because of the PMR) and just started physical therapy to strenghten my musscles and help my balance which has suffered.  Good luck to you on your journey!

PS:  I'm glad I have PMR instead of another disease, such as parkinsons which my mother had. Parkinson's is so progressive, and consider it a terrible disease which debilitated my mother leading to her death.