I keep forgetting...
Posted , 7 users are following.
that inflammation is the by-product of PMR and the whole reason behind taking the drugs! It’s not so much about treating the disease, but reducing the long term effects of inflammation.
That it's the process of trial and elimination in working out what drugs will work for you that’s so horrible, but at least the meds can be stopped at some point if they’re killing you.
When I read the risks (including morbidity) associated with uncontrolled inflammation, it’s pretty a frightening scenario.
1 like, 14 replies
Nolal2 FlipDover_Aust
Posted
What are the risks of uncontrolled inflammation? I didn't release
FlipDover_Aust Nolal2
Posted
In a nutshell, it can harm your gut, joints, heart disease, give you a higher risk of cancer, sabotage your sleep, is bad for your lungs, damages gums, makes weight loss more difficult, damages bones, affects your skin, and is linked with depression.
All very good reasons to keep your inflammation levels down, if you ask me!
So we take prednisone to keep the inflammation levels down, not to 'cure' PMR. It also relieves the pain and makes it possible for us to function, but that's not it's primary role.
MrsO-UK_Surrey FlipDover_Aust
Posted
Uncontrolled inflammation is a risky business. Rightly or wrongly, I blame the onset of GCA on lack of diagnosis and non-treatment of what we now know was PMR for 12 months, being stuck in bed in agony for 4 months of that year, attending rheumy appointments by ambulance and wheelchair. Even worse, at the end of that first year, I was diagnosed with chronic kidney disease of my sole kidney, which I blame on either the uncontrolled severe inflammation coursing through my body untreated for a whole year, or the very small dose of Ibuprofen I took for a few months just to try and dull the pain to get me from the bed to the loo. No excuses in my mind for the medics who failed to diagnose me in that first year.
Following my experience, even though we know steroids to be a powerful drug not to be taken lightly, I cannot understand those who, having been diagnosed with PMR, resist taking the very drugs that are known to halt the inflammation and protect them from even worse scenarios.
JanSP MrsO-UK_Surrey
Posted
I know most people who have PMR and GCA get the PMR first however I started PMR about two years after GCA between flares. I was off pred at the time. I couldn't get upstairs and had to live on the couch of my family room until I saw the rheumy. I couldn't believe how the pred stopped most of the pain in 12 hours. Just thought I'd add my experience even though it's not as common.
MrsO-UK_Surrey JanSP
Posted
Jan, what a bummer to have recovered from GCA only to succumb to PMR! And, yes, it does seem more unusual to hear of people being diagnosed with PMR after having experienced GCA going into remission. However, we have just recently heard on another forum of someone whose GCA went into remission a couple of years ago but who has now been diagnosed with PMR, so you aren't alone! In my support group there are people like me who have been diagnosed with both PMR and GCA, whilst there are others with 'just' GCA and others with 'just' PMR. A couple of the members have been diagnosed with a second bout of PMR. It is said that about 20% of people with PMR also develop GCA, while 40-60% with GCA also have symptoms of PMR. In the case of being diagnosed with both conditions, unless GCA affects the temporal artery only (Temporal Arteritis), I believe that it is difficult to separate the two as they are so closely related. For instance, I often used to wonder if my body pain was as much to do with GCA as with PMR.
I'm glad Pred worked fast to remove most of your pain - it seems nothing short of a miracle after being in agony doesn't it.
JanSP MrsO-UK_Surrey
Posted
Mrs. O, after the 12 hour tremendous decrease in pain from the pred on my PMR I couldn't stop saying "It's a miracle" over and over. The pain from my GCA is very different from the PMR pain. It only involves my head, neck and jaw. However I do also have spine problems (scoliosis, stenosis) and OA. When I have pain it is so hard to know what is causing it. When I have a headache I have to figure out if it's from some other cause or a GCA flare. I've had 4 flares over the seven years of GCA. With MTX and Actemra I hope this is my last. As wonderful as they are the drugs are ruining my life.
MrsO-UK_Surrey JanSP
Posted
FlipDover_Aust MrsO-UK_Surrey
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I'm hoping that actrema also 'works' for PMR - my rhuemy is starting me on in in three months, I have to plaquenil for three months first though. (Jumping through hoops to get a regulated drug)
julian. FlipDover_Aust
Posted
when recovering from back op many years ago the hurdle for me was accepting that increased pain (from squashed nerve) wasn't necessarily an indication of further damage - which translates to "I know it hurts but that doesn't stop me".
With pmr its very different and I work on the basis that "if it hurts its doing some damage". Which makes the balance between pred side effects and completely hiding the obvious pmr symptoms at least interesting.
I tend to tolerate a bit of residual stiffness and occasional pain. Which currently leaves me stuck on 3mg/day.
Whether that bit of stiffness and occasional pain, with associated inflammation, is an indication of continuing damage and future health issues only time will tell.
For me, simple logic of chronic auto-immune problems, simplistically the body attacking itself, suggests there are flow on effects. The bits with the pain are just the obvious bits.
I did pick up on pmr increasing risk of coronary issues, about the same increase as diabetes. It seemed to became important to me about the time I had a stent inserted.
Susanne_M_UK FlipDover_Aust
Posted
When I saw my gastroenterologist in early May, she told me that although my liver function is now good, having previously had a fatty liver, she would continue to keep an eye on me, as there could be a risk of me developing a liver autoimmune illness.
She said that once your immune system starts to malfunction, it could affects other parts of the body. I've had PMR and now GCA, let's just hope it stops there!
I assume that the pred targets all areas of the body, not just the affected parts.
FlipDover_Aust Susanne_M_UK
Posted
Absolutely.... as I just said to Nola, we take prednisone to keep the inflammation levels down, not to 'cure' PMR. It just happens to relieve the pain and makes it possible for us to function, but that's not it's primary role.
It's the damage uncontrolled inflammation is doing to the rest of us that is of primary concern - and that was the thing I'd completely forgotten until yesterday - I'd gotten bogged down in just treating the symptoms of PMR.
I've also read, on more than one occassion, that our risks of developing an second, or even third, autoimmune disease, are much higher now. I really fear diabetes as I'm already obese (mostly but not all from pred - I do have to take some responsibility for my comfort eating/drinking). Diabetes is a scary disease, so many comorbidities.
Anhaga FlipDover_Aust
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Susanne_M_UK FlipDover_Aust
Posted
Just catching up. Yes diabetes is scary. I've put on huge amounts of weight and weight loss is definitely on the agenda once I'm reasonably well. And I've got to finish that tub of ice-cream and the biscuits, I'm not letting them go to waste! ??
FlipDover_Aust
Posted
I just found these words from the great esteemed Eileen from about a year ago....it cuts to the heart of why we need pred and how it's used.
A fundamental problem is that pred is normally used by GPs for a different form of inflammation - more often than not that caused by an infection. Once the infection is dealt with then the need for the pred is greatly reduced, often gone altogether so you reduce the dose fairly quickly - it isn't a good idea to take pred when you don't need it.
Often they then fail to understand that in PMR you are dealing with a new focus of inflammation on a daily basis: every morning the body sheds substances called cytokines which then cause a new increase in inflammation. It's the difference between turning off the dripping tap that is filling the bucket and emptying it out without doing anything about the tap - both will stop the bucket overflowing but the second has to be done again and again.
So, believing that the inital dose of pred has stopped the inflammation permanently - the symptoms have gone, the ESR and CRP levels are back to normal so that means (they think) that the illness is in remission - they reduce the pred far more quickly than is helpful. The symptoms are in a "drug induced remission" , not full natural remission, a very different thing.