I'm confused about the inflammation people refer to in our blood vessels due to PMR. Can someone try and explain it or refer me to some articles. Is this because PMR is regarded as a form of vasculitis? Interestingly I do struggle to describe my symptoms to friends as it's not muscular nor joint, often I just describe it as a weird feeling! Sometimes I do feel as if my veins are inflamed as I get a sensation down my arms and legs occasionally.
Nearly 18 months into this journey I'm still unsure of what PMR is about and what damage it's doing. I think I spend most time worrying about the damage from Pred and wondering if any daily aches are from steroid reduction or the PMR or just age (mind you I'm only 58 and was very fit and active before all this started, as seems to be the case of many here)
Bit of a long winded Post but these things spring to mind as I read my daily email from here.
Thanks
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Lochy
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PMR is regarded by many experts as almost certainly due to a vasculitis, inflamed blood vessels, but as yet there is no definitive proof. They have found (I believe) that GCA, in the temporal artery at least, is linked to an inflamation problem in the tiny capillaries supplying blood to the wall of the larger artery. I think that may be the link to PMR - the microcirculation, the smallest arteries.
To be honest - I suspect you are relatively lucky if you don't have muscle or joint pain! But I'd also suspect the "weird feeling down your arms and legs" may not be blood vessels but nerves. I get shooting sensations that I have always put down to a "nerve thing" because of the situations in which I have felt it.
I really wouldn't worry about the damage the pred MAY do - some of the side effects can be managed well or even avoided when you know how. I've been on pred for 8 years and really there is nothing identifiable of the predicted problems. I've had some as I've described elsewhere but they are gone. Once you get to 8mg or so the side effects are far fewer and even insignificant. When it lasts a long time PMR without pred is a nasty accompaniment - pred at least gives you your life back pretty much.
It's not that I don't have joint or muscle pains it's just that I'm unable to describe them as I used to, usually from exercise injury or twisting or pulling something. They just feel different somehow! Hence when tapering I'm never sure if they're good or bad pains I'm feeling. Usually take some paracetamol and if I feel better it's not my PMR. Learned that here!
Just in middle of another herpes outbreak which are happening every few weeks and I now wonder whether the strange feeling down arms and legs are nerve related from the herpes I'm fighting?
No not on any anti virals. GP won't prescribe them as seldom there when have an outbreak for him to see! Off to see different doctor on Monday to see if I can get a course to see if it helps.
You need to - because while treatment can't cure, it can reduce the incidence. I had a short period of persistent mouth ulcers and my then GP was most insistent I must go back if they didn't clear as it is possible for herpes simplex to mutate and make you far more ill. He gave me an immunoglobulin injection - and I never had another mouth ulcer! A long course of antiviral medication MIGHT even help the PMR - there are theories about the cause of GCA!
Well hopefully I can persuade the doctor. They insist there is no protocol for prescribing anti virals and claim so many people have herpes virus there is little point in giving out anti virals.
I've tried to suggest that as I have PMR I'm more susceptible and struggle to fight it off so can I not try an anti viral. I don't believe there are any dangerous side effects to trying an anti viral and if it prevented more herpes outbreaks I'd be delighted!
YES - but YOU are on a corticosteroid so your immune system is suppressed. And you have PMR so by definition your immune system is compromised...
I posted somewhere else - your GP COULD write a private script for you - he just can't charge you for doing so. Acylovir is not cheap but not expensive either - £49 for 3 months suppression dose, And you CAN get it online. Might be interesting:
I have used Acyclovir over the years for herpes. I don't take it daily, as my outbreaks are few and not always predictable. However, outbreaks in the past have ranged from mild to very severe (with two or three days of agony -- hard to overstate how much). Since it was hard in the past to predict how difficult an outbreak might become, I began starting oral antiviral at the very start of symptoms. I have learned to identify "prodrome" symptoms (as in, before the syndrome -- might be localized heat or itching). Immediately at prodrome, I start topical Acyclovir (very helpful along with oral) and oral for 4 or 5 days and can sometimes bypass the outbreak entirely.
Yes, lots of people have lots of things, but we are each on our individual journey and what is insignificant to one can be devastating to another. PMR is difficult enough, and the same stress that aggravates symptoms applies to herpes as well. Keep looking for the doctor who will take your situation seriously. Are you able to speak directly to a pharmacist? They can sometimes offer guidance to a prescribing physician (I'm in the US, different system here?)
Best of luck on your journey. It's a day to day thing.
Hi Lochy: In case this will be of help, I used to describe the feeling of PMR to my friends this way: Imagine that you wake up one day and all your muscles, from your knees up your back to your shoulders and out to your elbows, feel like pillows that were stuffed into pillow cases that were much too small. They ache all the time because it feels like they can't get stretched out or relax. And you have a limited range of motion so your tight pillow arms won't rise above shoulder length. As the days go on it gets worse. If you try and crouch down, you get a feeling in your thighs like your muscles simply will split open in pain and then give out. So you fall over. And then you wonder how in the heck you will get off the floor and upright again because your muscles don't seem to work together anymore and you have to move about in itsy-bitsy motions. (And you do indeed feel like that darned spider who could not get up the water spout). When you go to bed you hope that sleep will come to finally relieve you of the constant ache in your shoulders and back. When you wake up, your muscles don't seem to work together in a way that will allow you to sit up. So you kind of rock your tight pillow body side to side and back and forth until you more or less roll out of bed. When you try and get out of the car after driving for awhile, your tight pillow body is locked in a sitting position, and it takes quite a long while to get out of the car and walk. On a good day, you start by walking wide-legged and rocking like a cowboy who just got off a horse after a long day on the trail. On a bad day, you cling to the car because your muscles will not allow you to stand up straight. And then eventually you give up and just walk around hunched over and hope you don't run into anyone you know. Stairs present a particular challenge because you know you can't trust your balance anymore and because if you bend your thighs and ask them to lift weight at the same time...they tend not to. So you get up stairs by grabbing the railing and hauling yourself up, conquering one step at a time.
For me, the lack of coordination and being in control of my movements was worse than coping with the pain. As an aside, it's been 3 years since the start of my PMR, and eight months since I weaned myself completely off prednisone. I have some joint and ligament pain, and I am still working on regaining my coordination. But most of my PMR symptoms are gone now. I am back to taking for granted the ability to reach up in to an overhead cupboard and grab the coffee. There is a light at the end of this tunnel!
Great description Rosedail and one I can relate to in parts. Good news you have now finished the pred and are hopefully on way to recovery. Long may it last and I hope I get there in the not too distant future.
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