This is the first time I’ve posted on here. I have been on Pred now for 2 yrs and I’m struggling with my pain and weakness on my 3mg dosage (down from an original dosage of 15mg). I’m thinking of looking further into Pulsed Electromagnetic field therapy. Does anyone have any experience of this ?
Thanks
Hi
WillAllanson and welcome to our site
Don't know about Pulsed Electromagnetic field therapy
But if you have got down to 3mg in two years I would consider you are doing well
If you are experiencing pain and stiffness at 3 mg you are probably at a lower dose then your body needs to manage the inflammation .
I am 26 months into this journey got down to 8 in May this year had a flare increased to 15 and only just managing to reduce fro 10 to 9,5 .
We are all different and our bodies react differently one thing for sure is we do need to listen to our bodies .
Good Luck
Hi WillAllanson,
Can’t help on the therapy you refer to, but like Rose54, would say you may well be below the dose of Pred that you actually need. There’s no point in that, any dose below 5mg is no producing any side effects so why not try upping a little to see if that helps first.
Plus you may also be suffering because your adrenal glands are not functioning properly. You can always request a Synacthen Test to check if they are capable of working.
See this about adrenal glands and reducing steroids
healthunlocked.com/pmrgcauk...
P.S. if your PMR is still active then you need to on Pred until it goes into remission - can’t get off the drugs until the illness is ready.
Unfortunately some of us do get side effects for low 5 ml mg. I was on 3 mg and getting muscle weakness heart palpitations insomnia irritability sweating profusely and other effects. It just depends on how sensitive are systems are two medications
Are you sure it is the Pred and not adrenal deficiency? The symptoms of that are similar to those you describe.
Yes I am sure.
Hi,
Reading back through your posts you seem to be one of those very unfortunate people who are very sensitive to Pred. But consensus of opinion of most patients and professions is that at low doses of Pred side effects are minimal or nil.
There’s always the exception to the rule though.
You said you were on 3mg and having problems, so what are you on now?
Nothing. I had to stop. I an just trying supplements and pain meds. Getting worse though. No raised inflammatory markers in my blood. Energy level is good. Can't walk more than a short distance at a time. no stairs or any exercise. hate it.
Sorry to hear that. Are they looking for any other diagnosis or sticking with PMR?
Still looking for other reasons.. Maybe a muscle biopsy. Thanks for being so kind to everyone on this site.
Hi WillAllanson,
I am sorry that you are suffering so much on your current dose. I would argue that it is pointless to take too little Pred. Your disease is clearly still active and you are risking a flare that would take you back to the beginning. I would be inclined to raise my Pred dose to the last dose I was comfortable at and rest there for a month or so.
I well know that hope springs eternal when I learn of a new therapy. All they have relieved so far is my purse.
Let us know how you get on. I wish you well!
I'd suggest you have overshot the dose you need - and going back a mg or two would be far more effective. Two years is a pretty short time to have PMR - whatever doctors try to tell you.
I don't know where you are - but if you were looking into PEMF in the UK I know that, as SJ says, it would relieve your purse very effectively! With no evidence it works. There is a study that shows the more money someone has invested in their alternative therapy the more likely they are to say it worked...
Thanks for your responses...all very helpful and mirror what I think. My rheumatologist and GP both seem to have the idea that I must get off of Pred ASAP and that most cases of PMR last around 2yrs, but I’ve been really struggling with anything below 5mg.....
Thanks
About half of patients take up to 4 to 6 years to get off pred. Only about a quarter are off in 2 years and are a higher risk of relapse at some later point. The rest of us have it for even longer. The 2 year bit seems a very English language fixation. The standard rheumatology textbook in Germany says PMR lasts an average of 5 years - which is far more realistic judging by my experiences on the forums.
A study in Italy found one third of the patients still required some pred after 6 years - they were in a study using methotrexate as a "steroid sparer" and followed up 5 years later to see how they had done. Although the mtx had allowed them to use a slightly lower total dose, it hadn't speeded up the getting off pred and the incidence of pred-related side effects was exactly the same. So really - why bother?
And this
practicalpainmanagement.com...
which is from a top PMR/GCA specilaist at the Mayo clinic, found that you might suffer most so-called pred side effects except cataract, anyway, even without being on pred. It isn't half as bad as they think. And as we know - it is what works to give us our lives back.
Ah the old 2year scenario....do wish the medicos would stop thinking/saying that. It’s really no help to anyone.
Go back to 5mg and get your life back on track....your PMR is obviously not yet ready to go into remission, unfortunately as we all know it doesn’t read the rules, it makes it’s own!
You will get off Pred, but in yours and PMR’s timeframe, not the doctor’s.
Good luck.
Happy to be corrected but we naturally produce equivalent of 7ishmg as I understand it. If your body isn't kicking your own contribution yet it probably doesn't help you feel good. I am on 10mg at moment but consider that only 3mg in real bodily terms.
Rheumy will be checking at 7mg in January then by 4-5mg checking adrenal glands. I have previously been down to 8mg but had to bounce up to 15mg when pain and weakness returned after just under a year.
You are entitled to try any therapy but I thought the comment about people who invest heavily seem to be more positive. I know in past I spent my savings on kinesiology etc and told myself it was working. Within 3 years I had to have back surgery and had to return to work sooner than I should because had spent all my savings on alternative/ complementary therapies. You pays your money.....
Hi will, if it's of any value I have been on pred for 3 years, currently at 5mg which is holding off the pains. Just a few pains when I wake up in the morning untill I get up and get going. I shall stay at 5mg now until I see if the pains and fatigue reduce further.Then I will reduce again using the DSNS method.
The specialist I saw when it all kicked off said I will be on steroids for 18 months. So far I have passed that time by 18 months. What do they know 🤔
Pete 😀
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