Often here I see questions on exercise and how it impact PMR recovery. While this video is not about PMR it is about impact of the exercise on our ability to live normal life during late 60's, 70's and later. While exercise cannot stop aging process, it seems to reverse it and preserve our ability to live our life fully.
Title : This Exercise Protocol Reduces the Age of Your Heart By 20 Years by Dr. Benjamin Levine
I agree exercise is so important as you age and PMR can prevent you from exercising properly. Steroids which most people on this forum take will suppress the symptoms of PMR but will not allow you to return to a fully active life, which is why I have opted for an alternative treatment (low dose naltrexone). I have been able to return to my normal exercise regime within a few months.
Interesting. My experience was not the same. As soon as my dose was below 10mg ( ~ 2 months after first dose) I restarted training at very low intensity. It took me almost a year to get back to pre PMR level of fitness. I was not worried about steroids impeding my training; my worry was that it will numb the pain and cause me to over-train. I was extra careful not to overdo it.
You did well! It's just my impression from reading posts on this forum that people who have been on steroids for 4/5/6+ years often say "I used to be so fit and active but now...." When you've been on steroids for a long time even small reductions in dosage seem to lead to fatigue. I know coming off pred wiped me out for a week or so and I was only on it for about 3 weeks!
I guess everyone's experience of PMR is different.
Hasn't been the pred that caused my problems but the disease.
Unfortunately pred doesn't cure PMR, so yes, the problem is the underlying disease. My understanding is that LDN attenuates the hyperactive immune response without causing immune deficiency, and doesn't have the side effects of cataracts, type 2 diabetes, osteomalacia and all the other problems that come along with taking pred long term. As well as the difficulty in coming off it. I have reduced my daily dosage of LDN without any problems, but as there don't seem to be any side effects I am going to stay at my current dose for the time being (3 mg daily) and just see what happens. There really isn't a lot of research on LDN at the moment in relation to PMR specifically, but there is an LDN research website online with a lot of information about it's mechanism of action and usage in other auto-immune conditions.
I can only say it has allowed me to return to a normal life, which includes regular exercise.
Yes, my daughter has used it in autimmune thyroid disease and tells me there are a lot of PMR patients on the forums. It's a shame they don't do some proper work on it but who would fund it ...
Exactly! It's a generic drug which costs virtually nothing, so Big Pharma couldn't make a profit from it. I could bore for England on this topic, it really annoys me when the NHS is paying huge amounts for biologics for which the trials are really not impressive but patients are desperate for alternatives to steroids, especially when they are being bullied by their doctors to come off pred. I didn't realise that was a thing until I started reading the posts on this forum. It has been quite an education. It's clear many doctors really don't understand PMR. I didn't bother going to my GP, I did my own research and bought naltrexone online, but not everyone is comfortable doing that.
This is interesting. Did you diagnose PMR yourself? I realised what I had, but it took around two months to get confirmation (and then treatment) from my GP.
When I had it 12 years ago my GP made the diagnosis based on symptoms and raised inflammatory markers. She was very good, knew immediately what it was and had blood test results back in 3 days. This time the symptoms were exactly the same so it was difficult to believe it could be anything else!
Symptoms recurring on 3.5 pred.
Pred relief not lasting 24 hours
PMR Tapering
Covid Sick Day Rules
Feeling a bit down and lonely today so logged on here to connect with 'my (PMR) tribe'even though I should be doing other things
