Today was my 4th visit to the rheumy and he has decided that PMR is my diagnosis (rather than RA). I agree with him and am happy not to have him thinking it is RA. (PMR is bad enough). At least now I feel like my treatment course will be focused on the PMR. He said Prednisone was the drug of choice (he had previously talked about some other drugs like methotrexate if it were RA).
I have gone from an initial 60 mg/day of Prednisone (from my PCP) to 50mg, to 40 mg. to 30 mg to 25 mg to 20 mg. Now I am on 17 1/2 mg for a whole month, then 15 mg for another month, then I see him again. He thinks my extreme fatigue can be caused by the PMR and maybe even some by the Prednisone.
I read the article on fatigue that someone referenced, but I am still not sure I have a good handle on how to deal with this on a daily basis. I occassionally have a good day where I can do more, but most days I wear out very quickly. My hips seem to fatigue the quickest and I guess that makes sense with the PMR since it affects those areas. I have started trying to walk for short peroids to build up my stamina.
So someone tell me again, when does the fatigue decrease, the moon face begin to go away, and the foot/ankle edema subside? The edema and the right knee OA are limiting my ability to walk right now.
Other than my OA pain (i.e. my right knee that has no cartilage) I dont have much pain except at night. A couple of times a week I have general aches/pains/malaise during the night. Is this common with PMR too? Other nights I am OK. I take Tramadol 50 mg at bedtime and that helps, though not on the nights I mentioned. Adding Tylenol helps on those nights. Those nights I almost feel flu-like, but I do not have the flu now.
He said the course of treatment will be long, so I guess I need patience (and energy!).
Thanks for listening.
P.S. Nan, when I was having the extreme fatigue issues was when I was tapering too fast. It got so bad that I ended up in the emergency room getting a shot of depomedrol in my bottom. Even with that and an increase in the prednisone it took about a month to get back to my almost old self. I found that I can only taper one mg at a time. This happened when I was tapering from 12.5 to 10.
This week I went from 8mg to 7mg for the second try. I still have the flu-like symptoms and aches like you mention but not everyday. I tend to have alot of flares from the weather but also have fibro and OA which can be worsened by the weather. Flares for me are a way of life now and all I can do is lie down on those days and wait it out. At the start of PMR the toilet was a real issue. I was getting ready to purchase a raised toilet seat until I was dx'd with PMR and started on prednisone. Mine got better though with prednisone.
I also use tramadol but can take up to 2- 50mg pills 3xday. I also take tylenol along with the tramadol, it does help. My rheumy also prescribed baclofen, a muscle relaxer, 5mg up to 3xday. The muscle relaxer helps on the flare days and doesn't make me drowsy. I'd tried alot of them in the past and they all made me sleepy especially flexeril. We are all affected differently by different drugs though.
As far as the moon face, once you get under 10mg you should start seeing a reduction. Not completely but as you taper so does the moon face.
Your knee may improve with time. My left shoulder was the worst effected part, actually was loosing the ability to move it at all before prednisone. It took quite awhile for it to improve so give it time.
With you having OA it can be difficult to determine what is what when it comes to symptoms. I am still having a time trying to tell what is PMR and what is fibro or OA in my spine.
Good Luck and do watch the tapering.
Nan: nice to know the rheumy can make up his mind! This is a good start!
The getting up off the toilet is one of the very typical complaints in PMR - in the UK many patients are provided with the portable high toilet seats to use at home to make life a bit easier! In the early days of it being really bad I used to have to pull myself forwards using the basin which was conveniently opposite the toilet. This probably sounds crazy - but can you get up off your hands and knees? If so, and you are using the disabled toilet which is presumably bigger and you have the same problem again try going down onto your knees and then getting up. I could do that but practise somewhere safe and accompanied first!
Anyway - other than that: you are at a very early stage yet. You have been on a very high dose of steroid so far and with luck you should see the moonface start to fade soon, not altogether for a bit but at least improve. Try to cut down the carbs in your diet as they don't help with weight gain in general with steroids. If you are having fluid retention problems that will also contribute to the "feeling fat". The edema in your feet may be the pred - or it may be the PMR! I realised how puffy my feet had been with the PMR after a while on steroids when suddenly I had normal feet again - I'd chucked several pairs of shoes!
The fatigue often doesn't seem improve for some time. The ladies on the UK site have recently been mentioning how much more they are able to do now than they could this time last year - the improvements tend to be in very small increments and you don't notice until suddenly, a year on, you think "Oh, couldn't do that last year" when you go into the garden to do something. We've also just started a thread where several of us have talked about how we feel better on the days we do more physically. Now I know this seems a bit of a conundrum - but if you can get moving in the morning as much as you are able, this improves the chances of doing a bit more throughout the day. I think it is because once you get moving the blood flow to the muscles improves and that is the basic problem in PMR - the inflammation in the blood vessels prevents increased blood flow to the exercising muscle and that is what causes the pain. It's called claudication and people with something called peripheral vascular disease have it too in their legs - they can walk so far and then the pain is too much and they have to stop for a while. Then they can carry on again until the next lot of pain. With training it is possible to increase the distance they can walk before the pain starts - and gentle exercise can do the same for us too. What you shouldn't do is overdo it at one time, little and often should be the maxim and increasing it in tiny amounts over time.
The joint pain you have is probably bursitis - like housemaid's knee or tennis elbow - and the swelling may be from that. It is part of the PMR. I found it was a few months before the bursitis improved a lot but then it was much easier to walk and move generally. I had it mostly in my hip joints and more in one knee than the other - it had also been thought to be OA but has disappeared almost completely now so probably wasn't. Most of us in the UK don't use pain killers - the pred acts as a pain killer by reducing the cause of the pain and most of us have found ordinary painkillers don't do more than take the edge off PMR pain. They certainly won't have much of an effect on the muscle pain. I would be very wary of taking Tramadol as it can be habit-forming - and PMR is enough without becoming (however innocently) a drug addict as well and having to wean yourself off both the steroids (very long term) and a narcotic-type drug (which isn't funny). The feeling of flu could well be the PMR - lots of us have days we feel like that, and also often as we reduce from one dose to the next down.
Your rheumatologist is right - this is a longhaul journey and the name of the game is patience. Normally, at the doses you have been at, 2.5mg reductions are OK and there are few problems for most people but the recommendation from the big boy experts is that a reduction should not be more than 10% of your current dose and below 10mg/day should NEVER be more than 1mg at a time and, often, 0.5 is better. Some patients are very sensitive to the drop in steroid dose so from now on keep a close eye on how you feel. How you feel is the only real test of whether the dose is OK. Everyone is different.
If you'd had something that is recognised by everyone as being serious you wouldn't be pushing yourself - the problem is you don't look ill to anyone else. You have to learn the pacing bit to be able to do the one thing you can do to help yourself which is keeping moving as much as you can. You can't measure yourself against anyone else - even if they have PMR too. It will get better - and sooner than it maybe feels at the moment. Some people feel washed out with steroids - others could take on a marathon, until the next day!
In a few months time you will look back and wonder why you worried so much. In the meantime - avoid stress, say no if you don't feel able to do something, do what you MUST do first, then what you'd like to do if you are still able and let someone else do the rest. The amount you can manage will increase - you have to learn to listen to what your body is telling you. Don't rush though.
all the best
MrsE
Hi Russelcat,
Thanks for all of the information. I seem to have had the fatigue all along (since Christmas). It is hard to decide if it is from the PMR, the tapering schedule, or the Prednisone itself. The rheumy said from 15 mg, I would go to 12 ½ mg. I think he is trying to taper slowly, but get me off the high doses. He did say that at 10 mg, he would reduce by only 1 mg at a time. Good to know that even that is too much sometimes and it may need to be .5 mg. I agree that knowledge is powerful for us, even though I know that I am blessed with a good rheumy. I have been on some RA forums (since I did not have a clear dx at first) and it is amazing how many rheumy’s either do not seem competent or do not have the bedside manner to be a rheumy.
As far as the raised toilet seat, I have a plastic portable one I have been using since the first week when I could not get off the toilet at all. I read both of your posts to my husband. We had thought about purchasing a new toilet that was high. But after reading your posts, he wants to wait. He is able to remove the portable seat now. The high seat does not hit him right in the legs and is not comfortable. Probably not too many sites talking about toilet seats, but some things take on new relevance in your life!
Thanks for the encouragement about the moon face. I will not be at 10 mg for a while yet (I guess 4 mos since he now has me doing each dose for a month).
And I know what you mean about trying to decide if something is PMR, FM, or OA. I am hoping the knee will improve with some weight loss (priority goal) too.
Before all this happened after Christmas, I was taking Flexeril, one tablet at night for the FM. It seemed to help with sleep, but did leave kind of a hangover feeling in the morning.
Thanks for your input.
Hi MrsE,
If I get down on my knees we would have to call 911 to get me up!
Thanks for the information on the edema. Surprisingly, when I was first on Prednisone, what little edema I occasionally had disappeared altogether. I thought that might have been due to the decrease in inflammation. So I was surprised when in just the past 5-6 days, the edema reappeared. Trying to cut down on my salt, keep the legs elevated when I can, etc.
Thanks again for the information on the fatigue. I want to hurry that process up, but it is good to read that it may take some time and will be in small increments. Also appreciate the advice about starting your day off getting moving in the morning. I do seem to feel better when I do that or if I get out of the house to do a few errands. Probably not only better blood flow, but it improves my mood and outlook.
You mentioned the ladies on the UK site. That is a different site than this forum? Can you send me that link?
As far as the Tramadol, I know it can be habit forming so I only take one at bedtime. The rheumy wants me to continue that, but I am going to try cutting it in half soon. I think the Tylenol helps as much as anything.
I have a form I developed to track how I am doing and I have been using it since my first rheumy visit. It has the date, dose, daytime notes, amount of exercise, amount of rest, pain medications, nighttime notes (i.e. hours of sleep) and comments. I copy the pages and give to my rheumy on my visits and he finds them helpful. Prior to retiring I have done a lot of consulting in healthcare, so have developed many forms, especially for use in longterm care, an industry in the USA that is not as well managed as acute care hospitals. So I couldn’t help myself when I thought a form would help my track and evaluate my progress.
Started back walking today. I was able to walk 6 min outdoors with the brace on my right knee and the cane to support my left hip and ankle. I will stick to 5 or 6 min for a week and then try to increase it. Today I felt like the knee and ankle were holding me back, rather than the fatigue.
Thanks for posting so much information. It is well aprreciated. I also pick up things from your responses on other threads. Nanatjjj: many disabled toilets here in Europe have toilet bowls that are higher than usual, especially in the ones that are wheelchair-accessible so try looking for those - I know what you mean about low ones, I find US ones horribly low sometimes!
Forms - what a great idea! Many of us do keep a note of our doses and how we respond, some in far more detail than others! It is useful for your doctor - and also for you when you have a bad period or a flare and you need to remember accurately what it was like the last time.
A really good way to try to deal with the swollen feet and ankles is to raise the foot of the bed on something. Feet need to be above the level of your heart for best effect so if you can do that overnight it saves quite as much gymnastics during the day! The return of the edema seemed to follow the reduction in the dose then? Are any of your other PMR-type symptoms more apparent? It may just be the PMR is protesting and making itself felt again - you seem to have a very good rheumatologist (I know loads of people who'd like his name!) so if you do have any return of what are definitely PMR symptoms I would ask if he would be happy to slow the reduction from 15mg to 1mg steps. You may also have something else going on - an infection of some sort, or have you had any other stress recently? Loads of people find that is enough to upset a planned reduction - and we often suggest to people to alternate their old and new dose for a week or so before moving to the new dose every day. It's all about fooling your body into not noticing the reduction! I know the doctors day "this will be fine". Unfortunately most of them have never had PMR and don't know what a pain it can be - not just the pain you have but also what a mind of its own it has! And it will behave in one way with someone the first time they get it, it goes into remission and when it comes back it has changed its coat and won't play ball the way it did the first time.
Is there any chance you can get to a warm pool and exercise in the water? It will get you moving with less strain on the knee and with less problem with your weight - we are all almost weightless in water
Low mood is part of PMR, or can be. Anything that helps you FEEL better is good. When you take your trip, make sure you plan plenty of rest stops and don't make any cast in stone plans - there is no point in overdoing it and being miserable for the whole of the trip. Speaking of which, that's probably a good idea not to replace your toilet just yet - although at some point you may find it appropriate, at present any changes should be of the flexible variety. Both of you have to live with such changes and they can be expensive mistakes.
Here is the link to the other forum - I'm sure you'll enjoy reading it. You have to register to post but you can read without - I think! Some things changed recently. They are also fussier than here about what you mention in a post - no links to other sites allowed, no doctors names and so on. It's run by doctors so they are quite keen to keep rubbish out.
Any other questions you might have - ask away, here or there, we're always pleased to try to help!
MrsE
Hi MrsE, thanks for the link and information. I used to use the pool, but not for a year or so. Right now I think the fatigue is bad enough that I dont think I can even get a wet suit off!
However, it is on my list of exercise goals, so maybe soon. Trying to talk hubby into going with me (he could use the pool or the exercise track) to our senior center that has a nice warm pool.
Oh, and here is the form I made. Maybe someone else would find it useful. If you use the landscape page set-up, it gives you more room to write.
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When I first started prednisone for PMR, it knocked me out. I was tired all the time, it seemed. I'd go to bed for a nap in the afternoon and sleep for 2 hours. I guess it just took time to get used to the medication...and I was only started at 12.5 mg for a few days, then down to 10 mg. So that is not a really high dose, and it threw me for a loop.
I'm learning that you do have to be patient with this disease, and cut yourself a lot of slack. It's no good beating up on yourself--it won't do any good and it isn't your fault you have this disease.
I've learned a lot from MrsE and MrsUK, and lots of other members here.
*Nanatjjj, that is a great chart. I may copy you! * I'm so glad to hear you are making some progress with your rheumy!!!
freesia2011-03-23 18:11:56Thanks freesia. I have wondered how much of the fatigue was actually due to the Prednisone. Hard to tell if it is the PMR or the Prednisone or both! Trying for patience but I have never been a very patient person. I know I have to learn to live with this, so trying to plan my days accordingly. You're welcome, Nanatjjj. If the extra fatigue is new since starting pred, it's probably your body getting used to the "new" medication. After all, pred causes some serious changes in the adrenal glands. Your body needs to adjust!
This has been a test of my patience also. I can be patient with some things, like sewing and painting, but this disease has proved I'm not a very patient person in some regards. The universe is testing me (us)!
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