tapering: pred withdrawal vs. OA/muscle pain | Arthritis Information

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Hi all,
Help is needed, any input is welcome! How can I tell if I'm having pred withdrawal, a flare, or if the muscle or arthritis pain I'm having is caused by physical labor I am not used to? Here's the story:

I just started a new taper four days ago, down to 6.5 from 7 mg per day.  I've been pretty much okay--I expected a little discomfort. I'm still not completely over a bad cold I got two weeks ago; my doc had me take zithromax because she heard some rumbling in my left lung and felt I needed antibiotics because of being on prednisone. Anyway, once I felt better I decided I'd better get cracking with a new taper since I had been feeling as if the PMR was in remission.

Anyway, yesterday I did some physical labor that I'm not used to.  Tryingn to make a long story short, I did an hour's worth of weed-wacking in the yard.  Then in the evening, my clothes dryer's vent came loose and I had to get down on a cement floor, between a sink and the dryer, and try to get it back in place; this was 45 minutes of torture.  My shoulder especially was very sore.

So this morning I was more sore and stiff than usual. As I said, it's been 4 days now with a .5mg drop. ( I had been taking 7 mg / day for over a month). 

I did an experiment this morning, and took one tylenol tablet (just regular otc tylenol; two is the recommended dose) just to see if it helped. I figure, if that helps with the pain then I know it was just a temporary injury from the physical labor I did yesterday, and not a PMR flare.

Any advice is welcome, thanks!!
freesia

freesia2011-05-05 10:00:11

Hi Freesia - after a day like that I think I'd expect to feel a bit rough! In fact, more than a bit rough! One of those events would have finished me never mind two.

Did the tylenol help at all? The trouble with taking a half dose of painkillers is that often that isn't enough to get at all the pain receptors and occupy them - that is how a painkiller works, they fill up the pain receptors so they can't get messages from the nerves from the painful area and transfer it to the brain so you know something hurts.

We decided over on the UK forum at one time that pain that starts soon after you reduce your dose and gets better over a period of 10 days or so is probably from the steroid withdrawal and your body has got used to it. Pain that starts soon after and then gets steadily worse is most likely because the dose is now too low. So we suggested giving it 2 weeks after a reduction before giving up and going back to the old dose - unless it really is unbearable, in which case we said go back to the old dose, wait a week or two and try the smallest dose drop you can manage with your tablets, reduce on one day the first week, 2 the second, 3 the third and so on. Really be sneaky.

We also tend to recommend not reducing if you have an infection of any sort - and definitely not if you need antibiotics, wait until it is well cleared up and then try. Or if you know it's going to be a busy time, holidays, travelling - delay the drop until you are home and take it easy for the first week. MrsUK always clears the decks and diary before a reduction!

Hope this helps and you feel better tomorrow,
 
Eileen
Hi freesia!
 
Sorry about your troubles. I think about an expression that Mrs K has been using. She "clears the deck" the week she is going to taper in order to avoid what you have experienced. I think you did just what Mrs K wants to avoid - too much physical activities when it is important to take it easy and taper. I think, like Mrs K, that it is better to plan a taper during a week with few activities. You might have read about a regime that I myself have tried at tapering. In your case it would be 6.5  - 7 - 7 -  6.5 - 7 - 7 and then over to 6.5 every day. If you think you have problems, you can drag it out even more before going over to the new dose.
 
I hope you just had the problem due to the physical activities!
 
Ragnar
Oh Freesia, I know it's so tempting to muscle in on things on a good day but you really did overdo it, added to which you're body was trying to get used to a withdrawal of some steroid and I'm so sorry that you are having payback. 
 
The others have already referred to MrsUK's advice to "clear the decks" during the first week of a reduction whilst the body adjusts, but apart from that your body was also still recovering from a cold and antibiotics.
 
I think if I was you I would revert back to the old dose for at least the next couple of weeks to try and ward off a possible flare before continuing with the next slow taper.
 
Do hope you can give yourself some TLC for a few days and that you will feel better soon. 
Thank you MrsE and Ragnar!

I had an entire message written and then we had a power outage! Grrrrrr...I hate it when that happens! Update:
I had four days @ 6.5 mg/day of prednisolone and today I woke up feeling more stiff and sore, so I took 7 mg today.  If I feel better tomorrow I'll drop back to 6.5 mg.  I'm also considering alternating days, one day 7 mg, the next day 6.5, or maybe even 7 and 6.
Maybe that method will work at staving off a flare! freesia2011-05-06 10:03:57Today I did another experiment. I woke up feeling pretty stiff and sore, but decided to take the 6.5 mg of pred, and try taking 2 tylenol tablets (the recommended dosage) to see if the pain was relieved. 

I found that the tylenol made me feel kind of nauseous at first, but eventually it relieved the pain.

So does this mean that I'm having arthritis pain, and possibly the pred was helping to deal with that pain, and now that I'm tapering, I'm noticing the arthritis pain more? (hope this makes sense).  I really don't want to take tylenol. I'd rather just reduce the prednisolone.

Why do I feel like I'm between a rock and a hard place?? LOL

freesia
I wrote a biggish reply freesia - and the site wouldn't upload it! Since it also refused to send a private message on the grounds the address was not recognised (it was a REPLY!) I'll leave trying again for now and come back later!
EileenHello Freesia
I did do a reply to your earlier post (5th May) because I was wondering if it would be wiser for you to revert back to 7 as it does sound as though either the inflammation is not under enough control to consider reducing just yet or you were having steroid withdrawal pain - if the latter applied, then it could take more than just a few days for the pain and/or stiffness to abate.   I also wondered if when you did the one day back at 7 the pain improved the following day - if so, I would have been inclined to stay at 7 a bit longer rather than go straight to 6.5 that day.
 
I consider myself very lucky in that my blood test markers always corresponded with how I felt so they were a good guide for me and they were always carried out prior to each reduction - if my pain levels increased, the markers also increased.  There was one occasion however when I was somewhere below 5 and I felt increasing pain. At this stage I wasn't having so many blood tests so asked for one - that one came back normal so steroid withdrawal was proved to be the culprit and I stuck with that dose until the discomfort improved.  At the moment I'm trying to head for zero doing the occasional day at 0.5 and when I get to 0.5 every day then I will ask for a blood test just for peace of mind.  Do hope you get to a dose at which you can stabilise soon.  Very best wishes.
Hi MrsE and Celtic,
MrsE that is frustrating and weird about your post not being accepted! All that time spent writing and then "whoosh," gone...I hope you will eventually post another response because you are always so helpful and informative.

Celtic, thank you so much. I did see your previous post but now this new one reinforces what you said before.  I thought my blood tests were fairly accurate at reflecting how I felt, since I had been feeling better (before the taper) as if the PMR was going into remission.  Maybe I do need to go back to 7 mg for awhile. I don't want to end up in the same depressing and horrible flare that I had before.

If it's steroid withdrawal pain, does that start immediately once you lower your dose of pred?

I also don't know if I should be taking tylenol on top of everything else.  All these pains are so hard to sort out ! If the PMR goes away, it doesn't seem as if I should be left with all these other pains, unless they've been developing while I've had PMR (?) and without the pred, I am feeling them ?

I guess I start thinking about my rheumy and how I feel pressured to taper....I won't see her til June 1, but I feel as if I have to have some progress to report.  I also feel pressure about tapering because of the bone loss issue. In one year I will have another bone scan and the rheumy says I'll have to make some hard decisions then. The pressure makes me nervous. I am not going to take those bone medications for something that may not even happen.

Celtic,I'm so happy for you that you have gotten down to almost zero pred! That is wonderful. It gives us all hope.

Thanks again,
freesia
Hi Freesia
Yes, in my experience, steroid withdrawal pain has started immediately I have lowered the dose.  However, once I started trying to taper at what seemed like a snail's pace the withdrawal pain became far less evident.  You will probably have read Ragnar's routine for tapering - well I followed that but even more slooooowly! For instance, I would do 5mgs for 6 days, 4.5 on the 7th, then 5mgs for 5 days and 4.5 on the 6th and 7th and so on until I reached 4mgs.  I then stayed at 4mgs for a few weeks.   The usual recommended time to stay on each dose below 5 is 3 months and I included my tapering time within this timescale.  All very slow but if it somehow works by tricking the body into not noticing the reduction then it's so worth it.  Meanwhile, it's giving those adrenal glands a chance to get back to their usual production of natural steroid (cortisol) as well.  By the way, the dose you are on at present is equivalent to the amount of cortisol normally made by the adrenal glands so there could be a fine balancing act going on in the body at this stage which may add to the difficulty of reducing.
 
If you feel that your pain is very different to previous PMR pain, your rheumy may consider doing a test for rheumatoid arthritis as it has been known for one auto immune disease to follow another.  For instance, I have recently been checked for the auto immune disease Sjogren's, having relevant symptoms.  Thankfully that has been ruled out and a less severe syndrome called Mickulicz's (wherever do they get these names!) has been diagnosed which is supposed to resolve spontaneously at some time!  The dry mouth symptom has now resolved and  just waiting for the swollen glands to go back to normal now which they have done on and off over the last few days, so fingers crossed. 
 
I can also sympathise with your worries about bone loss as I went from having normal bone density to having osteopenia after my first year on steroids, but the theory is that any steroid-induced bone loss occurs mostly during those first few months of treatment, so I'm hoping that my next scan in a couple of months time will not show any further deterioration - I have never taken any bone protection meds, but just try to follow a high calcium diet with lots of oily fish.  My physio is also of the opinion that it is possible for any steroid induced bone loss to recover after coming off steroids in spite of what we hear to the contrary.  So, here's hoping!
 
Finally, Freesia, don't feel pressurised by the rheumy - everyone is different!
 
 
Something else, Freesia - have you had your Vit D levels checked as a deficiency of Vit D can lead to all sorts of pain?Basically what I said was what Pearl has said - try to taper in tiny steps.  Plus:
 
The effect of the tylenol and the steroids possibly kicked in at the same time so it's difficult to say which did what.
 
There's a difference between a flare and the dose being too low. The idea is to find the dose of pred that controls the inflammation for as long as the PMR is active - only when it goes into remission will you need no steroid. The PMR chugs along at a given level of activity, you find a dose that deals with it and you can function. If you have a flare, the activity rises and you need a higher dose of pred to deal with it. On the other hand, if you try to reduce the pred dose below the amount needed you will get pain again.
 
In addition, as you are reducing, once you have been on steroids for a few months, there is the steroid withdrawal pain to deal with and the pains may be similar. Pain that starts quickly and goes away in a couple of weeks is probably withdrawal pain, it will settle down and you can continue with the reduction after a few weeks at that dose to allow your body to settle down. Pain that starts and gets steadily worse is almost certainly the PMR not being controlled and you will need to up the dose again a bit.
 
By having tiny reductions and taking several weeks to reduce your daily dose by 1mg or even 1/2mg makes the likelihood of success higher. The reduction should never be more than 10% of the current dose anyway - so at 5mg/day that is only 1/2mg and doing it the way Pearl described makes the slope very gentle.
 
I'd go back to 7mg/day for a few days until you feel good and then reduce by 1 mg on one day of week one, take 6mg one day, 7mg the rest of the week. The next week do it on 2 days spread out a bit. The next week 3 days. But if you feel much discomfort at any point just stick there for a couple of weeks and let it settle down. Once you feel good again, add in another day at the new dose. After 7 weeks you should be down to 6mg every day unless you have had problems - but so what if it takes 10 weeks. You will have got down the next step. Then you can start on the next step - but at 6 to 5 mg I would say maybe just try 1/2 a mg at a time, or try 1mg at a time as from 7 to 6 but be very vigilant for the pain coming back and if after getting to 2 days a week on the new dose there is any discomfort, wait a couple of weeks before adding another day.
 
And don't let your rheumy bully you. You are now on a physiological dose - what your body would make anyway. At this point most doctors accept there is little damage being done. Good diet and body weight bearing excercise will help - and not everyone gets osteoporosis. Once she has a dexa result that shows something she can get on her high horse!
 
Good luck - tell us how you get on.
Eileen
 
PS - hope this gets through, 3rd time lucky!
Thanks MrsE and Celtic.

Thanks to your patient explanations I think I am starting to understand the several things that can cause pain with tapering prednisolone. The gradual taper is what I am going to do.  So what if it's slower, at least I will get where I need to be without a lot of unnecessary suffering and discouraging backsliding.

So far with my two attempts at tapering, I've been "okay" at first then I get creakier and more sore day by day. So do you think this means the PMR really isn't in remission or under control enough? I'm just wondering if it could possibly be withdrawal pain. Of course, the results this time may have been skewed by my physical exertions in the back yard and laundry room! I pulled a few more weeds, raked, and moved some potted plants (they weren't really heavy, either) two days ago--I was trying to help the gardener. He showed up unexpectedly without his usual helper and the weeds were almost as tall as me, and rampant all over the yard. Yesterday I was like a vegetable all day, and now my lower back hurts.  I think I'd better cool it and stay quiet to get accurate results. And mainly to not get hurt!

I keep wondering: When you get down to almost zero pred, as you have Pearl, is the pain gone? In other words, no more PMR pain?

About Vit D:  I've been taking lots of Vit D for a long time now. In fact, my rheumy had me go up to 5,000 IU per day several months ago, but unbeknownst to me, my Calcium tablets also had Vit D in them and my levels actually got too high! Anyway I backed the dosage down to about 2,000 IU per day and finally got smart enough to include the amount in my Calcium tablets.  I have to blame this on confusion and stress.  Anyway, it isn't lack of Vit D causing any pain.  By the way (and I feel guilty saying this) my primary care doc is the one who noticed my Vit D levels getting too high...the rheumy wasn't monitoring them...

I'm so glad to know that I am on a physiological dose and probably no damage is being done.  that is a relief!!! I do eat pretty healthy.  I could use some weight-bearing exercise.  I ride a stationary bike every day and do exercises at the Warm Pool, but I need to walk--I love to walk but that is the hardest thing for me because I don't have the stamina I used to, and my legs get tight and don't want to "go" ! The rheumy surely believes she is just trying to help me. I will try not to take what she says to heart or feel bullied.

Thanks again so much! Eileen, I'm sorry you had to try 3 times to get your reply posted--so frustrating!

I'll let you know how things go. freesia2011-05-09 15:12:38Freesia
I wasn't completely free of pain and stiffness until on the very low doses, probably below 3mg.  Once on 2mg I remember  complaining to my rheumy about lingering upper arm muscle pain which he said was caused by the steroids weakening the muscles therefore leading to easy injury.  I then realised that some time before, the muscle really hurt and went into a spasm when hoisting the rotary clothes line, hence the easy injury.  I finally found a physio who did gentle massage around the arm muscle and my shoulder blade area which he found to be very knotted.  He was very aware of not doing any pulling about or stretching so as not to inflame the PMR, just gentle massage and heat.  After a few sessions the pain was gone and I then realised that had I found the physio earlier I could probably have reduced much sooner as the pain had not been due to the inflammation of PMR!
 
I'm sure you're right that this episode for you is down to all that physical exertion - PMR doesn't like stress of any sort whether physical or emotional.  Plus your body had only just got over a cold requiring antibiotics.
 
As for your legs "getting tight and don't want to go" that is so classic of PMR.  I walked daily even if in the early days I could only manage 5 minutes - excellent for weight-bearing - and I also do Tai Chi - excellent for mind and body, weight-bearing, balance and breathing.
 
As for whether your PMR is "in remission", it certainly wont be at this stage and with the symptoms you are experiencing.  The steroids are not curing the PMR - they are simply controlling the pain by reducing the inflammation until the PMR burns itself out of its own accord, hopefully in 2-3 years; a VERY few lucky people manage it in 12-18 months whilst a few others take even longer.  I do hope you will have a smooth journey to recovery.  Do let us know how you get on.  
 
This was my experience but, having said all this, there are some very lucky people who become almost pain-free at the higher doses.
Celtic, that is very interesting about the arm pain and how pred can weaken a muscle so that you get injuries even after you're almost off the pred . And glad there was a natural cure!

I'm confused about something. I thought the blood tests and the fact that I felt pretty good meant that the PMR was in remission, and that is why I am tapering.  Maybe remission is the wrong word and I should say "the inflammation is down"? 

I didn't realize that the legs tightening and not wanting to "go" was classic PMR.  The thought that I might somehow manage to walk a mile from home and then not have the power to get back terrifies me.  I'm sure there is a more gradual approach LOL. Tai Chi sounds like a really good thing to do.

I'm definitely going to go on the gradual taper.

Thanks again so much for your help and good wishes.
freesia
Freesia
Yes, when your previously abnormal blood test markers return to normal and you become more comfortable that simply means that the dose is controlling the inflammation (mine returned to normal very quickly in the very early days of treatment when reducing between 40mgs and 15mgs (high starting dose for GCA)  but my PMR was certainly not "in remission", just under control.  It wasn't until I reached the 5mg dose that I started to have a few 'snakes and ladders' experiences with a couple of flares necessitating sliding up and down the doses,  If I manage to get to zero and the pain continues to stay away, I will then consider that I am recovered/"in remission" - everything crossed!
 
You will get there Freesia - you will gradually walk that mile from home.......and get back!  If we don't learn anything else whilst suffering with PMRGCA we certainly learn patience!
 
Have you got somewhere around your home where you can go on a circular walk that isn't ever far from the house? Then if you suddenly get to the stage you feel you can't go much further you are close by. I know repeating the same bit is boring but once you get the strength in your muscles built up you will feel more confident. I've just had torn ligaments and can now take the brace off - but walking the short distance into the village and back is a real test after 5 weeks not doing it regularly! I did think about stopping for a sit down in the square
 
It might also help to find some gentle stretching exercises for hamstrings and calf muscles - like you do after exercise. Before I was dx'd I found doing things much easier after an aqua aerobic class - and even better after a Pilates or Iyengah yoga class! It sounds crazy but getting the circulation in the muscles going is the best thing to deal with the PMR stiffness. Gentle but not excessive exercise is the key - not hauling plant pots around!!!!
 
all the best,
Eileen
Thanks again MrsE and Celtic for coming to the rescue.

Celtic, Thanks for explaining--I think I have it straight now about the pred controlling the inflammation, how blood markers play in, and remission. I thought the fact that I actually felt better meant the disease was gone! So why does the rheumy think it's okay to reduce the dose? I guess there is no other way to determine the right time except via blood markers and how the patient feels?  Thanks for your encouragement...I hope I get there Freesia
Re your query as to "why the rheumy thinks it's ok to reduce the dose", as you're one of the PMR sufferers whose blood test markers have been raised on diagnosis, he/she should be guided by the results of those tests preferably prior to each reduction - if they are raised then no reduction.  Depending on how high those results are and how much discomfort you are suffering, then you will either increase the dose or stay on the current dose for a little while longer.  It was my experience to suffer from some degree of stiffness in my legs even though the blood tests were normal right down to the very low doses but  I considered myself lucky in having the guidance of blood test markers that corresponded to how I felt - some sufferers don't have that luxury!
 
I so agree with MrsE's suggestion of doing a "circular walk that isn't ever far from the house" for that is exactly what I did and the area in which I live is such that I was able to increase the size of the circle (block) as I felt able, occasionally stopping to sit on either a seat or someone's wall
 
BTW you mentioned in an earlier post that you're lower back was hurting following that mammoth physical experience of your's!  I do hope it's better now but one little tip I discovered each time my back decided to misbehave (I have a slipped vertebrae) I donned a support girdle (not too tight!) and within 2-3 days all pain gone.  I was fitted with a made-to-measure support many years ago when my spinal problem was at its worst but that no longer fits (PMR tummy and/or advancing age!)
 
Take care, Freesia.

I'll try to explain the thinking behind the pred reduction:

When you are diagnosed you are given a dose of pred that will almost certainly deal with the amount of inflammation usually found in PMR and steroids are the only way of dealing with it at present. Nowadays in the UK the recommended amount is generally 15mg, occasionally 20mg per day. In the past they used much higher doses and even today some doctors still do. It may even be that it is difficult to get it under control at first. A higher dose will do it quicker, I had a lower dose (15mg) and it took a few months before all the bursitis had gone, the muscle pain went quickly. Studies have been done which have shown that the 15-20mg level is enough and obviously means that the patient is exposed to less artificial steroid than if they are started on 40 or 50mg which are used in other diseases where steroids are used to combat inflammation. I'm thinking there of asthma or flares in Crohns disease and so on. However, there the pred is used for a short period of time, as soon as the inflammation there is reduced the steroids are tapered very quickly and stopped.
 
In PMR the inflammation is being caused by an underlying disease process which hasn't yet been identified and all that can be done is treat the symptom - the pain and stiffness caused by the inflammation - by reducing the inflammation. So you give a dose of pred high enough to get it under control - and if steroids didn't have any downsides you could stay on that dose for a long time and feel great, ready to springclean every day! However - steroids are not vitamin pills, they have more than 80 recorded side effects. Some are relatively unimportant but others are much more significant and a few even life-threatening. That doesn't make them bad drugs, all medications have side-effects and even ordinary OTC painkillers can be very dangerous if not used carefully and correctly (quite modest amounts of Tylenol can kill by damaging your liver, for example). So the aim is to get you reasonably symptom-free and then try to reduce the pred until you find the lowest dose that will keep YOUR symptoms under control. That will obviously depend on how severe the underlying disease process is. The disease is still there but you are not suffering. In some ways it is like diabetes. The body doesn't have enough insulin to deal with the sugar you are eating so you become ill. If you give medications to boost the insulin or make what is there more efficient you are no longer sick as a result. The diabetes hasn't gone away, if you stop the medication you will be ill again. With PMR if you stopped the pred - the PMR pain will return pretty quickly.
 
So it becomes a test - give the patient a smaller dose of pred, is the patient still able to function and be in no pain? They're OK, leave it a few weeks and try another reduction. Are they OK? Yes - rinse and repeat! No? Pain is back, OK, we need to go back to the dose they were OK at and rest here awhile before having another go. The dose that keeps you happy and able to function is the right dose, if a smaller one means a return of the PMR symptoms, it is too low - for the moment. In many patients, about 75%, the disease process causing the PMR will die away after a few years - anything from 1 to 4 years. This is what is called remission. What is causing the disease hasn't really gone away altogether, but it isn't active, like a volcano. Think of it like a bush fire, it can burn quite strongly for a while and then slowly die down and not be strong enough to get to the next bit of wood and set it alight. When this happens, you shouldn't need as much pred, if you are really lucky you may not need any. So every so often the doctor should be trying to lower the dose of pred you are on.
 
When you lower the dose two things can happen. One is that the pain of the PMR comes back. The other is that the reduction in the steroid dose can cause withdrawal symptoms. Unfortunately they are very similar: muscle and joint pain usually, brain for, feeling bad. Usually the pain from steroid withdrawal will start quite quickly and then, over the next couple of weeks, start to improve bit by bit and eventually go away. If the PMR is no longer being effectively controlled the pain tends to start after a few days and then steadily get worse as time goes on. So you need to hold out for a couple of weeks before giving in altogether. That's why we suggest clearing the decks, cancelling commitments, choosing a period with no vacation or travelling plans that can't be adapted if you don't feel good and avoiding unnecessary stress. And that means not doing the gardening or babysitting or decorating. This isn't for ever - it's for the two weeks after the dose reduction. Then you can gently get back to normal IF THE REDUCTION WORKED OK. If it didn't you'll be back on the previous dose where you were OK anyway.
 
However, some doctors don't appear to understand that, whilst many patients on steroids can deal with a 5mg/day drop in dose when tapering after an asthma attack or something else when they have only been on steroids for a few weeks, the situation in PMR is rather different. This is a chronic disease that smoulders away for a long time:to keep our fire analogy, you have covered it with a very fine layer of dust or sand that is stopping it breaking out again by keeping the oxygen in the air away. But if you kick at the covering, the fire will flare up and might be strong enough to get going properly again. And that is what happens if a doctor gets too enthusiastic and makes too big a reduction, encouraged by the blood values looking good. Yes, they are good - but only because the inflammation is damped down by the steroids. Allow it to start up again and you may be in trouble - some studies have shown that it is more difficult to get the inflammation back down if you yoyo the dose and allow it to flare up. And in the end the total dose of steroids taken by the patient from beginning to end of the treatment is higher than if they had been less ambitious at the reductions.
 
Over on the UK forum, there are several people who are having great success reducing their dose by only doing it half a mg at a time - they have tried 1mg without success. Ragnar, of course, was the original "softly, softly, catchee monkey" advocate. Some expert rheumatology doctors recommend that in PMR a dose reduction should never be more than 10% of the current dose at any level - and at about 10mg that means 1mg at a time. But some people find that 10% is still too much above that level. Below 10mg, 1mg soon becomes more than 10%. At 5mg/day 10% is now only half a mg. And at 3mg/day, that half a mg has become 17%. I take 17mg every 2 days - and I cannot manage more than half a mg reduction at a time without problems, that is 6%. Since I made the reduction that small, I'm doing really well and I can reduce by that much every 2 weeks - very very gradual but in just over 2 months I have reduced my dose from 20mg/2 days to 17.5mg/2 days which is a significant amount.
 
I'm sure I've missed something but does this help? If not - give me a specific question!
 
cheers, Eileen
 
Celtic and MrsE, thanks again.

Celtic: I am going to try a walking "program" again. I have the walking poles but never used them . I guess this what you use for Nordic Walking, is that right? It's amazing that Nordic walking actually reversed someone's osteoporosis!  I also will get into a Tai Chi class.  I have one of those wide black belts  that are worn for support when one is lifting things--maybe that will work for my back.  I'm sorry about your vertebra--that must be so painful--I hope it is better now.

MrsE: Thanks for a wonderful and thorough explanation. The analogy of PMR with a bush fire is really good. I'm trying to absorb all this! I hope you and Celtic don't mind that I print up some of the posts and read them when I'm not at the computer.  If I read them enough everything will eventually "click", I hope.

I can't think of any more questions right now! I'm sure some questions will arise and I will post them!

Thanks again to both of you for being here for me and everyone.  I appreciate your help so much. 

Best regards!

freesia




Freesia - I've just posted that over on the UK forum with additions and suggested they print it out. It really is the only way to know whether you have "got it" - making notes, writing down questions. I know exactly what it is I'm trying to convey - I don't know if it is as clear to anyone else.
 
There are two sorts of walking poles - I have ordinary ones that are adjustable in length for using both going uphill (like walking sticks) and for support going downhill so you don't runa way with yourself when they need to be longer. I haven't tried Nordic walking but there the poles are quite long I think and it is the action where you sort of leave the one pole trailing behind whilst the other is starting the next step that is important - an appalling description I know but I know what I mean! I'm sure Celtic can explain much better!!
 
It is the weight bearing bit that tells the bones they need to make bone tissue - every time you put your foot down forcefully the bones deform or bend a tiny, tiny bit and that signals to the bone it needs to get stronger. Very clever stuff goes on in our bodies so they work right!
 
take care,
Eileen
Freesia - I think that's a great idea to print off anything that you feel may be of help both now and in the future - after all it can be a fairly lengthy journey with PMR and/ GCA and it is virtually impossible to remember everything you read or to find something that was posted a long time ago.  I keep everything I feel may be useful for future reference in a file (including any expert publications) together with my record of blood test results, dosages etc.
 
Don't know if I can add much to what Eileen has said about the Nordic walking poles but here goes:  they are very similar to the sticks used for normal walking, with a pointed tip at the base (this has removable covers which are attached when walking on such surfaces as concrete) and they are adjustable to suit your height.  They have to be high enough to be able to place in front of you with your arm outstretched as if you are going to shake hands and then straight arm goes back and pole is placed into the ground a fair way behind you.  I learnt with a group and although this might seem unnecessary, there is definitely a correct way to do it to gain the most benefit.  They can be especially beneficial with PMR as they actually give you support.
 
Another fantastic weight bearing exercise for your bones is simply using the stairs.  We've occasionally considered moving from the house to a bungalow but knowing that the stairs are such good exercise I think we'll stay put for as long as we can.  Coming down the stairs is, of course, the best bit for your bones but, obviously you've got to get up there first!
 
Hope you're giving yourself that TLC, Freesia! 
Hi MrsE and Celtic,
I feel so dumb but I need to keep going over and over the information so it will sink in, and it really helps to have it printed out...otherwise it could get lost when new threads are started.
I just found a website that shows how to use the poles, and all about Nordic walking, etc.  http://www.adventurebuddies.net/03-01-poles.htm
I have the adjustable poles, and I think they have the plastic covers on them, so I probably could do Nordic walking but need to study the site and video a bit more. 

Celtic, I have stairs all over the place in my house, and I go up and down stairs all day! wooo hooo! Glad I have this "exercise equipment" for free right in my house!

I'm trying for the TLC. I don't know what is happening to me but I feel like my entire body is aching. I guess I'd better stop the tapering. I did take 7 mg today, up from 6.5.  I've even been wondering if the zithromax (antibiotic) I took for my cold might have caused this sudden downturn? Or the cold itself might have set me back?  I was doing so well until then. I started trying to taper a few days after I ended the zithromax and felt better.  I guess there are too many possibilities for why I'm worse now--doing the yardwork just added another possibility.  Good reason to clear the decks when one is trying to taper.

Yesterday I saw my primary care doctor and asked her if I might qualify for Handicap license plates or placard in my car...She flatly refused. I guess she is strict about this ? The more I think about it the more it is bothering me...doesn't she consider being somewhat crippled as much of a handicap as having a heart condition? In fact, maybe someone with a heart condition shouldn't be driving at all, with the crazy drivers we have in California!  Oh well. I know that Handicap status is really a scam, with a lot of people who don't deserve it driving around with Handicap plates and/or placards.

Have a good day everyone, and thanks for all your help. Wish it were a PMR-free day!

freesia
Freesia
I'm so glad you've decided to go back to 7mg as that is where you were last at your most comfortable.  I do hope things settle for you back at that dose and, if they do, stay there for a good few weeks before trying to reduce again.  The guidelines suggest a 1mg reduction each month from 10 down to 5mg but several people on the UK forum who failed to achieve that amount have succeeded by doing just 1/2mg drops.
 
It's a pity that your Dr doesn't recognise the fact that PMR is a disabling condition - I applied and successfully received a disabled person's parking badge and it renewed my confidence and gave me back my independence.  If the decision doesn't just rest with your primary care doctor, perhaps there's another avenue you can explore.
 
Hope it's onwards and upwards for you now, Freesia. Hi Freesia,
So sorry you are having trouble with your doctor about the handicap parking. I have had a handicap sign for my car for a few years now and it has been a God send. I was not diagnosed with PMR until this year, but have had enough mobility issues from OA with a bad knee and other joints that I have needed it for a while now. I agree with whoever posted the fact that it increases your independence. Otherwise, I would be reluctant to try some errands knowing I could not make it. That just makes us more isolated and dependent. I do understand the need for exercise, but we are supposed to be careful with what we plan for exercise so that we can limit it when we get pain. Having to walk a long distance in a parking lot does not give us that opportunity if we begin to have some trouble or are having a bad day. Seems like your doctor does not understand this. I also wish that our culture would stop worrying about others taking advantage. Yes, maybe there are some that do that, but most of us need the help and that stigma either keeps us from seeking the help or keeps some doctors from providing that help! I'll get off my soapbox now. Hi everyone, 
 
I have been reading the messages, and let me say thanks to everyone,  the knowledge
I get from this message board is so great!! I took my pred. at 3 am, was in a lot of pain
with my jaw and temple.  Its been 8 hours and I am getting relief. 
 
I have felt all your pain,  because I have experienced it, that makes a difference.  I think my  doctors just can't imagine the pain so its sed. rate  no matter how you feel or what
your symptoms are.   Or, should I say that is how it is where I live...Maby I need to move.
 
I was about to down size and get rid of my stairs but thanks to all the good messges I
read, I will keep to help with my weight bearing exercise.  See how helpful you are.
 
Pearl, thank you for a copy of presentation,  I made a copy as I have before to read and
remind me what I need to discuss with doctor on June 2nd.  Here is an example of my
dr. visits.  Dr.  How are you today?   I tell him about pain in jaw, temple, tongue and
ask if I need to up the pred. or consider possible late gca,  he felt of my temples and
said, we will get a sed rate and if its the same or lower than 2 mo. ago then we will
lower 1mg.  Take this to the lab...thanks,  see ya in 2 months.  End of dr. visit. 
I dread even seeing him much less trying to talk to him....Its very stressful.  I have been
to 3 other doctors,  and they just scratch their head and really never tell me anything
just we can try this drug and if pain in jaw and temple gets better then its probably
trigeminal neuralgia,  I said, I really want to know if its gca or tn before taking more
drugs.  he said, but this will help us diagnose.  He said take it a week and if it helps
we will be on something,,,,I came home read the side effects of the med. and the number 1, was vision problems, possible seisures etc.  so I put it in the cabinet and I'm not taking.
I want nothing to interfere with my vision because gca causes you to have vision problem
then blindness. and if I took the drug I wouldn't know which one was causing it...So,
I keep my 60mg of pred with me at all times.
 
Also the discussion about bone scan and osteopenia was very helpful.  I can't say thank
you enough to MsE. The posting of pred. tapering was so complete and so helpful.
 
Winnie, I haven't seen a message from you, hope you are better.  Let me know if
the 60mg. has taken care of pain.  We have the same symptoms, so I know how
you have been feeling. 
 
Ricky,  I hope the lipitor is working for you.  That is a good idea taking 10mg every other
day.  Once the chol. is lowered can you stop taking lipitor, or will it come back up when
stopped?  I noticed you are from the states,  the sunshine in Fl. should make you well!  
 
 
Smiles to all, have a great day!
 
KaCee
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
 
Hi KaCee,

I see you're located in Texas.  Sorry to read of your frustrations with the Dr's.  I would be frustrated too.  I would hope your Dr. would call you after the results of your blood tests to let you know the results.  That's what mine does to tell me the SED rate and what he suggests for me to do.

On the Lipitor question, I think I'll probably have to stay on that... but hopefully on a low dose.  Lipitor does work for me on lowering my Cholesterol, and since I was off it completely when I had a flare 6 wks ago, it probably wasn't the cause of my PMR. I'm currently taking 10 mg or 1/2 of the the 20 mgs QOD (every-other-day).

Hope you start feeling better soon. Cheers. KaCee,
I hope you are feeling better.

I have to say, I don't like the way your doctor is treating you. I know they have a lot of patients, and a lot of stresses on them, but he/she doesn't sound too personable.  I wish you could find someone who will at least listen to you.

I've had a somewhat similar problem. Although I like my rheumy, she expected me to be able to reduce the prednisone by one mg every two weeks! I think she understands now that my body is just not able to tolerate that at this time.  I wonder if they are taught rigid methods of tapering and don't consider anything else?

Also, I think you are smart not to take the medication that can tamper with your eyesight. Why muddy the waters when you are on the lookout for possible signs of GCA ?

I wish you the best, and keep us informed.

freesia
Freesia - I think what happens with the rheumatologists and tapering is that in most uses of steroids they (and other docs as well who use it in asthma and gut diseases) give a short course of steroids of say 20/15/10/5 mg/day, each dose for a week at most and then stop. This is done to avoid the effect on the adrenal glands. If it didn't work enough, a second course is given. Then there are the patients who need it at a lower level for many years, in some cases life where they know there will be adrenal suppression and accept it. And rheumys use it a bit in RA but are much more likely to use other drugs alongside it there and the pred will be at a much lower dose, maybe 5mg.
 
The perception has been in the past that PMR lasts a couple of years and is gone - so they look at tapering over that sort of period and know that it will take longer to get the dose down after 10mg so they try to get there as quickly as possible. Some people can deal with the bigger step reductions at the higher doses - and others can't. PMR isn't that common and even a rheumy may only have a few patients so they don't have the benefit we have here on the forums of seeing a lot of people dealing with PMR. I'm involved in 3 different PMR forums and hear the stories of probably 30 or 40 people on a regular basis and more on an occasional basis. I would say that a good 10 to 15% of them struggle with the reductions suggested by their doc at the 15mg and above level - and the vast majority on lower doses need to take it VERY slowly, for example to reduce a dose by 1mg, start by doing it on one day the first week and take the old dose the other 6 days, then 2 days the second week and so on. Some even take it slower, staying on each step for 2 weeks - so they take anything from 6 weeks to 3 months to drop their dose by 1mg/day.
 
I know a lot of docs are very iffy about the social media and its role in medical matters. You can understand it when you look at some of the sites and their - frankly - whacky ideas about traditional medicine. I'm a scientist and everything I write is based on my reading of medical publications and textbooks (rheumatology and medicine) and - much more importantly in some ways - on the experiences I have heard from a fairly large patient group compared to the number seen by any single doctor. I hope they'd approve of my writings!!
 
And Nanatjjj - if you're looking in this thread - the post I mentioned over on the other thread you started is the one at the top of page 3 of this thread!
 
Eileen
Hi Eileen, Yes I did see and read your post at the top of page 3 of this thread when you posted it. Also looked it over again today. Thanks. MrsE, thanks for your input about rheumatologists and prednisone dosing. Very interesting.
I don't blame them for being skeptical about some of the so-called "medical" information online. Some of those sites are so whacky, and some of the ones where people post their opinions and ideas --well, they are not even worth reading!

best regards,
freesia

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