Realistic Expectations from Pred
Posted , 10 users are following.
My GP said symptoms would disappear and I would feel energised after 48 hours. This didn't happen. We've upped the dose to 20mg and the symptoms have much improved. However I am still slightly achy - and after lunch with a friend and a walk about town was flat out and had to rest. I'd love to know how you all have reacted to Pred. Was it a wonder drug and did it banish all your symptoms? I'll take slight achiness and stiffness over crunchy grabby pain any time - but just interested...
0 likes, 73 replies
EileenH celia14153
Posted
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!
EileenH
Posted
Sorry - I clicked reply before I'd finished:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
celia14153 EileenH
Posted
I'm beginning to realise that I need to educate my GP as well as myself. This is so brilliant. Thanks again Eileen.
EileenH celia14153
Posted
He's one of thousands ...
celia14153 EileenH
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?? A challenge! 😀. Mine's a very nice chap so I have hope.
sandy65909 EileenH
Posted
Thanks for your helpful information. I have always been a competitive overachiever. This illness is teaching me new ways to be in the world. Couldn't do it without your help. Thanks Coach!
EileenH sandy65909
Posted
I think you will find a lot of us have worked our way along a steep learning curve - if anything we can say helps people get there quicker then that's all good
sandy65909 EileenH
Posted
EileenH sandy65909
Posted
Being in Italy - no! However - unless you get together you won't have a support group! The UK ones were started as a result of 5 ladies meeting on this forum, they got together and did the work to achieve charitable status - initially the northeast of England one, and formed support groups. Scotland already had a charity, the east of England had a local support group. All you find in the UK now stems from that initiative. There was an attempt to start a US forum but it has struggled as you really need a critical mass to tip it over the edge and flourish - the link is here somewhere:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
You could put posts on the UK forums and ask if there is anyone near you - all the links are there.
snapperblue celia14153
Posted
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.
EileenH snapperblue
Posted
"A lot of us initially need more than 15 mg to treat the pain, despite what many doctors think."
And the latest recommendations for the management of polymyalgia rheumatica reflect that: "the lowest effective dose in the range 12.5 to 25mg". But since the people who we first meet looking for the prescription aren't familiar with the old version - heaven only knows when they will get the meassage. I suspect only if we the patients carry a copy in our pockets and force the to read it.
celia14153 snapperblue
Posted
Yes - this is all so helpful in getting a full picture of what I'm confronting. Thanks.
Elijo celia14153
Posted
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.
celia14153 Elijo
Posted
You seem to be managing really well, thanks for sharing. So sorry your mother had Parkinson's, and yes this is infinitely preferable!
Elijo celia14153
Posted