Good Days... Bad days...

Thanks MrsO.  I did have a slightly elevated ESR (37) and all the classic symptoms of PMR.  The rest of my blood work was normal.  

The diagnosis remains PMR due to the dramatic relief response I had to the Pred (initially received two long-acting injections, one in my shoulder and one in my knee.   Within 24-36 hours I was pain-free.  Over the next 2-3 weeks as the injections wore off I began taking oral Pred.   Because of my previous reaction (very very severe depression) I am trying to "get by" at the very lowest dose possible.  So at 6MG I am just getting by and I realize this is a risk to ongoing inflammation and other side effects, but the Pred side effects for me are a known issue.  I cannot risk the severe depression again as it is a far greater risk to me personally.  

I have an appointment with rheumy on Friday.  I will continue to hope and pray for a "magic wand" that will resolve this disorder for each and every one.  

Peace to you.

PS - my good days / bad days seem to have no rhyme or reason.   I've tried different scenarios (food, omitting food, alcohol/no alcohol) and the only consistent thing I've discovered is that the less (gently) active I am, the absolute worse I feel.  

Maggi, I'm wondering if continuing steroid injections rather than oral steroids would manage your PMR without causing such severe side effects.  I do know of one person who has spent the last 3 years purely on steroid injections into her btm alone.  The problem is that the effect can wear off sooner in some people than others.  Perhaps this is something you can raise with your rheumy on Friday?  I found that daily walking within my limits was the best exercise - as Linda has said she also feels better when she takes her walks.

I do find I tolerate the injections better and discussed this option already with my rheumy.   I am only allowed to have those 3X annually.  The lasting effect is only a few weeks, so that is not an option.  

There are different sorts of injections - those into joints should be limited to 3x annually but there are depot injections, given into muscles, which can be used in some cases instead of oral pred. I don't know whether the side-effects are less, that will also depend on the dose level and the patient, but they can be used on a continuing basis where required.

Will check with my rheumy on Friday. Thank you :-)

Hi Linda82701,

I'm just over the bridge in WA State.  Maybe the RAIN is our PMR problem!

Seriously, for me (a PMR short-timer compared to others here) there is no rhyme or reason.  My symptoms actually seem worse the more I am "still".  I try not to overdo anything exercise wise, but I do try to walk every day (though I'm not always successful).  

Hope you're soon better every day.   From your neighbor to the North.  

I am still on 50 mgs. per day so my side effects include extreme fatigue BUT two different docs explained that no matter what I had to walk one mile per day. So my husband got me a treadmill for bad weather days. So far,two months into GCA, I can only go for 15 min. at a time but get in at least 30 min. per day, almost a mile. Then I flop on the sofa! This is to help with osteoporosis which is a huge problem for older women on long term heavy doses. I will have a bone density test in two weeks and then every few months to check. Exercise is so important for all of us on pred for long periods.

My side effects are also worse when I stay still. When I overdo simple chores or do my walking, I perspire terribly, have to wash, and plop down to recover. So no fun but I feel more normal when I stay busy. I can finally read for more than a few minutes. Our worst enemy is becoming frail!

The pred doesn't cure the problem - it manages the symptoms by dealing with the inflammation so reduces the pain and stiffness but isn't perfect. Your muscles remain intolerant of acute exercise so you too have to take a role in management. 

The underlying autoimmune disorder that causes the damage and the symptoms we call PMR is still there - and will remain there until it decides to go into remission. There is nothing we can do to speed that up - we have to manage life until it happens. The pred helps but we must do something too. Fatigue is a big part of almost all autoimmune disease - it isn't clear why but it is. Maybe it is simply our bodies telling us to rest - and by resting when you need to you will achieve far more in the day. 

The worst thing to do in PMR is sustained or repetitive actions - both tire the muscles and don't allow them to recover. Such a task split into a few minutes at a time with rests for the muscles involved inbetween will allow you to achieve far more overall. Or doing something one day and then having a day rest to recover helps. A nap in the afternoon will allow you to do something later in the day that would have been impossible if you hadn't had that rest. Being "still" is bad because it allows something called myogelosis to occur - the muscles stiffen up and make it difficult to get moving again. It is a listed symptom of PMR. 

So lots of short bursts are better than one long session - but not too "bursty"! Keep it all low key!

I often suggest googling "the spoon theory by Christina Miseriando" - someone has written a thread about it on here recently. And another good read for managing autoimmune disorders is Despite Lupus by Sara Gorman - especially her advice about resting and achieving more.

And I'm sorry - whoever it was said she'd been told by 2 docs she MUST walk a mile a day - I don't know what world they live in but it is certainly NOT the PMR/GCA world I have lived in for the last 10 years. With or without pred, the pain and other problems made that impossible for a very long time. For over a year I could barely walk the 300 yards from my flat to the village, even with crutches. My bone density has not changed - there are many factors involved in bone density and if you can't walk a mile you can't walk a mile. But it is wrong for a doctor to make you feel inadequate or risking your health if you can't. Realism is important.

 I have been using the spoons theory since you mentioned it before. It works for me.  I actually take more rests, and, of course, feel better for it.  (Husband not amused - he's been telling me for years to slow down, but taking notice of  'spoons', well!)

I have docs pushing me to walk because they both know I would try to exercise in a less gentle way like try to run a marathon at 68. I feel so for those who have so much pain all over the body. On so much pred, I feel no pain, just awful side effects. Here is the catch, each time I taper the dose by 5 mgs. I run the risk of the giant cells inflaming again and going into another massive headache. During a few days after a taper,

I have to pay very close attention to any pain. I am a new patient and have only had one taper under my new rheumy. For those who have dealt with this for ten years and constantly have pain, I think about you constantly.

Try reducing in smaller steps - no reduction should EVER be more than 10% of the current dose and even that is too much for many people. Two reductions of 2.5mg 2 weeks apart achieves exactly the same result - and maybe will cause fewer ripples. At lower doses 1mg at a time is quite enough.

And no - I don't constantly have pain now. I'm on 4mg, it looks as if I will be there for a while but that's fine, I feel well. I had 5 years with no pred - uncomfortable but not hellish. Then it became really bad but was still a mystery to my GP. 15mg pred achieved a miracle in 6 hours but much later I had a major flare and severe bursitis. The fatigue went on for a long time though and the fear of getting stranded was always there. Now I can walk fairly well - but a few hours of wandering round town leaves me tired the next day.

MaggiGrace,

Hello, neighbor!  I have only been diagnosed since January so am a short timer, too.  Just takes time to realize the complexities of this disease and prednisone.  But as time passes and with the insight of everyone on this website, I am learning and accepting what is going on with me.

Thank you, EileenH !  I appreciated all the information you have given me.  I do not feel my doctor and perhaps others realize what we are dealing with all the time.  I wish the docs were more educated on the disease.  I am learning to "listen" to my body. 

Ah Linda - are you the same Linda on another thread saying the rheumy says you MUST get off pred? 

If you have PMR, have only had it since January and your rheumy is pushing you to get off pred - get off your rheumy!!!! You need to find one who knows how to deal with PMR. The use of pred in PMR is at the least likely to be a taper over a couple of years. Maybe longer. Any rheumy who is trying to force you to stop pred when you have PMR doesn't know their rheumatology and you need one who does. In the UK an educated PCP would be able to manage you - is that an option?

My doc didn't want me to get off prednisone...only begin to taper since I have been on 20 mg for three months.  Am down to 17.5 mg for two weeks then he wants me to drop to 15 mg for two weeks.  He told me I would be on prednisone for perhaps two years.  Does your doc tell you what to expect with this disease?  The website is the only place I have been able to get any real information.

That's fair enough - and two years of you are lucky. About a quarter of patients get off pred in 2 years or less but they are more likely than others to have a relapse later. About half need pred for 4 to 6 years.

The biggest mistake though is to try to reduce too fast or in too big steps. At least he is telling you to do 2.5mg steps - but from 15mg down ask if you can do it 1mg at a time.

If you haven't already done so, follow this link to another thread on this forum

https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

There are links to sites where you will find lots of info about PMR and GCA - realistic info from other people with PMR, one is a forum but with a lot of sections with that sort of info. In the replies bit is a description of a slow way to reduce which avoids discomfort due to steroid withdrawal and has worked well for a lot of people to identify the right dose for them to be on long term if necessary - often as little as 5mg or less.

Did my doctor telll me what to expect? Neither my original GP nor the rheumy I saw got it right  - I told the GP, the rheumy wanted it to be anything but PMR and wouldn't let me stay on pred despite a textbook response in 6 hours. Another GP in the practice was happy to agree it was PMR - and my present one is fantastic but doesn't bother telling me anything except SLOW DOWN THE REDUCTION! I can't go any slower...

 

I don't know what I would do without all of the information I have gotten from all of you.  It seems when I first went on prednisone I felt terrific for about 3-4 weeks.  No side effects either.  Then I started doing things that must have aggravated the muscles involved in PMR.  I began to experience some pain and stiffness in my back.  Doc had dropped me to 17.5 mg and when the pain and stiffness began returning, he upped it to 40 mg for two days then back to 20.  That sent me in a tail spin with side effects.  Yesterday was a day I was completely exhausted.  Napped for two hours in the morning and 3 hours in the afternoon.  Am better today.  Is this usual?  EllenH, you had suggested myofacial pain syndrome could be going on in my back.  You may be right.  I do know that the majority of the worst symptoms of my PMR have been greatly reduced with the prednisone.  I am just realizing that I have probably had this disease for a few years even though only diagnosed for 3 months.  Could this be?  Actually am realizing this disease has altered my life, actually for some time.  I just kept thinking ... oh, I just have arthritis and I just have to live with it.  I am just beginning to accept that I have a disease and am learning to live with it a day at a time.  I don't think my doctor knows or understands how impacting it can be.

Changing doses like that really isn't kind to your body - and US textbooks/articles have warned for years about getting into a yoyo situation with dosage.

Yes, often patients have the signs of PMR for some time before it is diagnosed, thinking as you did, it's part of getting older and I'll have to put up with it like our grandparents almost certainly did.

You rested a lot yesterday - and are having a good day today. That is also very common - rest and pacing yourself are very important parts of managing the illness. And if you have localised problems they will make you think the entire thing is bad  even though it is just one part - like an ice cream stain makes a slightly worn t-shirt need washing!

And no - only people who have had PMR know how limiting it can be. Like depression it doesn't show on the outside.

 

EileenH, am having a good day today after a down day yesterday.  I assume this is all part of the disease.  I have never been really good at pacing myself.  I am a do it your selfer.  We live on an acre and do all of the outside work.  I love it but have had to limit what I do.  Have a riding mower etc. helps.