What should the PMR pain/stiffness goal be while tapering prednisone?

Hi all....wonderful to have all of you to talk to and read about.

So, here is my comment/question. I am currently at 10 mg pred...experimenting with 5 mg a.m. and 5 m.g. p.m. Seems to be helping me, especially in the morning, be able to deal with my pain and stiffness. I honestly can't tell you if the pain is from having tapered from 25 mg to 10 mg too fast or if these are withdrawal symptoms or both. I didn't taper very fast but did not do the dead slow method. Currently, the stiffness is intermittent...some days I have none. The pain is in lower arms, wrists, knees, neck a little bit and shoulders and hips to some extent. Often, it feels very different than the pain I had before I was diagnosed. Some days are very mild and some are more severe. I am dealing with it, and I can function, and at 10 mg I feel like me again. If I go back up to say 25 mg., I can completely eliminate all pain/stiffness. Unfortunately, at that level, I had really major side effects. What is a major side effect? That, in my opinion, is in the eye of the beholder. If I'm a complete raging bitch (I was), that's a major side effect...especially since I have a full time job and was biting people's heads off! Not working is not an option for me financially. I had heart palpitations, all of the fat redistribution, moon face, gained weight, was depressed, etc. etc. So, the absence of PMR symptoms was great, but not worth the total package of side effects that went with that prednisone dose.

So would this be considered an OK compromise...some pain and stiffness (no matter where it's coming from..PMR or withdrawal) with a lowish dose of pred (10 mg) to keep things at a manageable level? Of course, eventually would be shooting for reducing pred, but right now it's not an option. Is this dangerous...I am assuming this may put me at more risk for eventual GCA? maybe not? Will this make my PMR last longer? Will I have long term effects from letting the inflammation have its way, even if it is more muted?

Any comments greatly appreciated, and thank you all again for sharing and caring!!!

27 Replies

oldestnewest
  • What I usually say is whatever you got at the starting dose is what you use as your yardstick - you want the lowest dose that allows that level of relief. However - many are happy to compromise as you are.

    When you say some pain and stiffness - what do you mean? Most of us do to be honest, some people are never totally pain-free. Anyone who works either accepts that or needs a higher dose. For many of us it is associated with what we did the day before - lifestyle changes are also of significant importance. If the stiffness/pain appears after you having had a particularly good day and you having done a bit extra then that is normal and understandable. If it is more bad days than good days you perhaps need to think again. But that is up to you.

    I don't think it is dangerous as such - I had 5 years of PMR with no pred at all. I have atrial fibrillation - it happened pretty early on in the story, would it have happened with pred? Probably. All the pred does is manage your symptoms, the cardiologist thinks it is the autoimmune part of the illness that caused the a/f and the pred does nothing to change that, it chugs away in the background while you carry on living with the aid of pred. What probably is risky is to allow the inflammation to run totally uncontrolled as then it probably is damaging blood vessels and there is a component that possibly increases the risk of some cancers - it is known chronic inflammation is a risk factor. How big that is anyone's guess I think. The more muted the better.

    Does it put you at risk of eventual GCA? No idea - and neither has anyone else. Some experts expressed the opinion it did and I know I have read a figure (so has Celtic) but we can't find it again and other experts deny it. One in six will go on to develop GCA - and it may be sooner or it may be later.

    Will it make PMR last longer - again, no-one knows. Maybe my 5 years no pred is the reason that, after 12 years, it is still there. But there are others with long histories who were diagnosed relatively promptly. Again - the autoimmune cause is not affected in any way by the pred. It is now being thought that PMR is a heterogenous disorder - there are different versions. But there is no way to predict which version you may have. Or how long.

    If you are happy I think that is all that really matters - I'm pretty happy with where I am. I'd rather not have it, I'd rather not be on pred. But in the general scheme of things? It's not too bad - I have a reasonable quality of life and that's what it is all about.

  • As always, PMRPro, you have such great insight and help me understand so much, so thank you! I do agree that from all that I read it seems there are many different versions of this disease. As such, a one-size-fits-all strategy for managing it is not a good idea. Unfortunately, so many in the medical profession seem to try to do that. Maybe it's because they only see this disease infrequently? I am much happier now in spite of increased pain/stiffness, so agree with you....if you are happy that's what really matters.

  • Hi dianelee,

    I knew that PMRpro would come in with an intelligent answer to your dilemma. But I just wanted to say that your "raging bitch" made me smile. I told my husband that " you see it's not only me"' so he could withdraw the divorce papers. Good luck!

    I caught sight of myself sideways on in the mirror today and saw the beginnings of a buffalo hump ( dreadful expression, as is moon face)

  • Hahahaha....so SheffieldJane it is nice to know that I am not the only raging bitch. I have calmed significantly and people don't turn and run when they see me anymore! ;-) Glad you avoided divorce, as well! Never really got the buffalo hump (so far anyway), but lots of weird fat padding in other odd places. :(

  • Excellent questions as I am also tapering and doing pretty well. My appetite seems to be slowing down. Thank goodness! Where were you dose wise when side effects started to diminish. I too work full time with no other alternative. I have completely changed my work and weekend schedules so that I can rest more. It has actually been better and I am enjoying the changes. Also I am now getting up at 4 am where I was a night owl before but job accommodate me to come early. So my housework schedule is different too but all do able. Wishing you well on your journey🐰

  • Honestly, bunny, it seemed like as I reduced the dose the side effects slowly diminished also. It was much more noticeable once I was under 15 and now at 10 I see significant differences in my appearance, attitude, sense of well being. But, of course, the stiffness and pain also creeped back in when I got under 15. I have done some schedule changing also. I plan my active events (like house cleaning) for later in the day when I have very minor pain and/or stiffness, if any. I also get up at 4 a.m. and am no longer a night owl, and that works best for me as well. Thank you for the good wishes, and same to you.

  • My doctor says I should feel only normal morning stiffness on waking. Nothing that gets in the way of getting going with the day. Good and more difficult days are often due to weather and yesterday's activities but if the fatigue and tears start showing up regularly then I know my prednisone level is off. You may want to consider just going up a little, not all the way back to 25 and rest there a bit. See if it helps. I am also a working Mom so I know how hard the juggling act can be. But as I keep hearing from a good friend and fellow teacher- you can't take care of everyone else if you're not taking care of you!

  • He's not entirely right - it all depends on how long the antiinflammatory effect of the pred lasts for you. Some people can be excellently managed on pred once it has acted - but it doesn't last overnight and they would wake very stiff. That is the beauty of the Lodotra formulation - which has acted by the time you wake and so no morning stiffness. It keeps me going the entire 24 hours but I imagine there will be some it doesn't - although once you are able to get moving the stiffness does improve over the day as you are active.

  • I learn so much every time I sign in! Just reading about Lodotra after seeing it in your post, PMRpro, sounds like this is pretty well designed for our PMR issues! I am going to find out more about this so thank you!

  • It was designed for RA in fact - they did a study and discovered the best time to take plain white pred for avoiding morning stiffness problems was 2am so the company then developed an outer coating that disintegrates 4 hours after being taken. Everyone I know who has been lucky enough to get it finds it excellent.

    Unfortunately it is, of course, far more expensive than plain white pred! It is used here in mainland Europe, in Germany and German-speaking Italy at least. In the UK though they won't even consider it unless you pay privately and although it is approved for RA its use is discouraged on cost grounds. In the US it depends on your insurer, some will, some won't.

    I think that in the UK you could do something similar with the enteric coated pills, taking them at about 7 or 8 hours before you would be getting up. I discussed it with a rheumy a bit back and she agreed, and told me that there had been a proposal to do a study comparing enteric coated and Lodotra - the Lodotra people wouldn't play! Which fuelled our suspicions!

  • Wow...interesting! I just tried looking up Lodotra on the pharmacy coverage page for my health insurance and it is giving me an error message, saying no drug matches my search. So, I will do some research to see what the problem is. Usually, even the most expensive drugs will show up with the crazy high cost estimates.

  • You're in the US? Called Rayos there.

    In Europe it costs about £100 per month depending on the dose (each 30 tablets costs the same whether it is 1mg, 2mg or 5mg) and you have to make up the dose from those tablets so it could be up to 4 tablets and each 30 tablets costs about £25).

    And in the USA it is STUPID money! Someone told me it was IRO $2,000 for 30 tablets. Now THAT is disgusting profiteering on someone's part...

  • Thank you! Yes, now it comes up on the pharmacy website. The retail cost is about $2,500 for 30 day supply (60 5mg tablets). My insurance has a $200 limit so that's what I would pay. Compared to the $4 I pay for 30 days or more of regular pred, it's a big jump, but maybe worth it.

  • Dianelee, My doctor got me a special coupon for the ryos and I got a 90 day supply for like $60. And I have to pre-order it through a special pharmacy call quick care pharmacy in Rancho Cucamonga California. And they said they could continue to grant me that price. It's only 3 mg per tablet though

  • PMRpro, folks in the states can purchase Lodotra from northdrugstore.com in Canada. 100 - 5 mg tablets cost $225.00 USD. 30 - 1 mg and 2 mg tablets are priced at $79.00 USD.

  • dianelee, look up Lodotra at northdrugstore.com in Canada.

  • thank you Admiral!! I will check it out for sure!!

  • Thank you TooSore. I may need to go up a little...but really enjoying feeling much more like me again, in spite of some of the PMR symptoms creeping back in. Today is cleaning day...we will see how that goes...ugh.

  • It is much better to go up a little, remember, the quality of life! I had to go up a little, now I can see that I start putting up with pain and don't realize it until I get a major flare!! I think I'm going to enjoy the awe feeling on 7 verses the ouchies on 4💕💕💕

  • TooSore, As I mentioned in a previous post, I am being treated for PMR with weekly 80 mg injections of depo-medrol. While the average daily dose is 11.4 mg per day over the week, the drug is released from a “bolus” in the muscle on a constant but declining rate over eighteen days. On the first day, the serum level is a nearly constant 20 mg over a 24 hr. period. On the second day it is 15.3, on the third day it is 13.7, on the fourth it is 10.3 on the fifth it is 8.4, on the sixth it is 6.4, and on the seventh it is 5.9. Because these serum levels are maintained over 24 hour periods, there is no pain or stiffness to deal with. The exception occurs, however, when I am physically active over the course of a week. In this case more steroid is released when my heart rate is elevated and more blood passes over the bolus, and this leaves less remaining for the final days of the week. In these instances, I may experience some hand and shoulder pain on the seventh night. My physician plans to begin the initial tapering in mid November, (based on CRP and Sed Rate) so I will soon see how I feel with an average of 10 mg daily and 5.6 and 5.2 mg respectively on the sixth and seventh days.

  • Admiral06, I remember your post about this. I'm always interested in alternate/additional treatment methods because you never know when you might be the one needing them. So far I have been managing fairly well on prednisone with the exception of a few months late winter to spring when my first rhuemetologist was dropping my dosage too fast. It prompted me to do some research, find all of you, and a new doctor!

  • As I have learned PMR/GCA is a journey unique to each of us, we all experience it differently. I saw my doctor in June 2015 and she immediately contacted the hospital who saw me within a week. I was put on 50mg Prednisolone by the doctor with the hospital's say so. The consultant I saw set up a plan for me and advised on medication required. It was stressed that getting me off Prednisolone as quickly as possible without compromising the treatment of the PMR and some GCA indicators at that time was the aim. At this point in time I am on 3mg a day and since I came down by 5mg monthly until I hit 10mg and then by 1mg a month to 5mg and now 1mg every two months. I have only had one increase in that time when the filler in the 1mg tablet didn't like me, and from 7mg I was put back to 10mg. Since that time I have cut up the 5mg uncoated tablet - fiddly but it works and reducing the amount taken as soon as one is able has been my motivation since the PMR was diagnosed.

    PMR I was told when starting this treatment is only around in the system for about 6 months, after that the treatment with drugs is continued to ensure that the PMR does flare up again. I have found that reducing Prednisolone causes withdrawal symptoms, some quite nasty ones, however, for me I have treated this with a pain killer recommended by my GP and not increasing the prednisolone until the symptoms of withdrawal settle. All I can say is I will not deviate from the plan set out by the hospital and GP unless they tell me too as the object is to get off Prednisolone as soon as possible, given it is an addictive drug.

    The side effects of Prednisolone including weight gain and the moon face will gradually disappear with the reduction in dosage I have found, but for me one of the worst side effects is feeling totally ravenous and needing carbs, but it subsides as the body becomes used to the lower dosage and it doesn't seem to affect my weight.

    I have been given as much support by my GP as I have needed and am able to ring to ask for a telephone consultation if at all worried. This has been so helpful as if she is perturbed by what I tell her then she gives me an appointment usually within 48 hours or less. I have my bloods check regularly for the inflammation level too.

    Every new tablet I am prescribed I read the enclosed leaflet thoroughly given I have a long history of bad reactions to drugs and a number of allergies to them as well.

    I hope my experiences have been of some help.

  • Just 3 things:

    PMR is DEFINITELY in the body for more than 6 months. I had it for 5 years before I went on pred. It is still there 7 years later. I am by no means the only person.

    Pred is not "addictive". Your body may be dependant on it - that is NOT the same thing.

    For the majority of us, no pain-killers touch PMR pain. They might help with steroid withdrawal rheumatism pain - but it is far better to adjust the reduction to be small enough for your body not to notice the change in dose so much. Then you don't need any painkillers.

  • I'm sorry your answer is just what I was expecting, but then I thought I had said that this was MY experience and into that comes the fact that this was what I was told by the Consultant and that yes I would have the inflammation and the stiffness first thing in the morning which would last for far longer.

    I do understand only too well what being dependent upon means and what an addictive and non- addictive personality is too. I was left on Tramadol for too long. I got off it fairly easily even though I went cold turkey which was unbearable at times given I have a non-addictive personality and know that for some it will be far harder. I can only speak from my own experience.

    I only need to take painkillers for the time it takes for my body to settle to the lower dose - I thought that was what I had written.

    I do not suffer from rheumatism so cannot comment on that.

  • I didn't say it wasn't your experience - what I said was that PMR lasts a lot longer than 6 months for many people, I was disputing what the person who told you that had said. I know a lot of rheumies in the PMR field and have read a lot of medical literature. No-one else has ever suggested that. It is now thought there may be different forms of PMR, probably one that lasts up to about 2 years, one that lasts about 5 years (which is the length of time other countries suggest) and one that is indefinite. One of the criteria used to be that the pain and stiffness had lasted more than 6 months.

    I didn't mention rheumatism either - the medical term for the pain you develop when reducing a steroid dose is "steroid withdrawal rheumatism"

    You have been very lucky in your medical care though - a 48 hour wait for an appointment is in most people's dreams (except mine, I see the GP within 3 hours of deciding to go - there is no appointment system, you turn up and wait!)

    I do hope your reduction continues as well as to date.

  • Hi Hampshire_Lass,

    As you say, our journeys are unique with PMR.

    I think that one thing you have said here would be challenged by others, and that is that PMR is only 6 months in the system, if I read what you wrote correctly. I don't think the medical evidence backs that up, and there are many who battle PMR for years without using prednisone.

    I certainly understand what you are saying about pred withdrawal symptoms vs. PMR symptoms. One thing I have not mentioned in other posts is that I sometimes take arthritis strength Tylenol and the Tylenol usually has a very profound affect on the pain! When I first had PMR, before diagnosis, taking Tylenol or other over the counter pain relievers generally had very little, if any, affect. That leads me to believe that the pain comes from withdrawal more than PMR. I also have looked at websites for prednisone withdrawal for people who took it, or are taking it, and do not have PMR or other inflammatory conditions. I see that their experience often mirrors mine with the kind of joint and other pain they have with the withdrawal.

    Time to get ready for work. Thanks so much for sharing your experience!!!

  • I can only repeat what I was told by my Consultant and quite understand that the views on this illness are just as varied. A diagnosis and plan of treatment is set up for each one of us and it will be different in all respects. I had to rest completely for 6 months at the start of my treatment literally. I am retired so that wasn't a problem for me. When I went to see my doctor initially I could hardly move, I couldn't dress myself, etc. Moving and painful joints and the stiffness were unbearable and this came on over a period of days. The Pred took effect almost immediately.

    I was told by my GP, whom I have to say has been totally right in all she has told me and how to deal with it that when decreasing the does the for a period it can give one a small dose of the initial PMR symptoms until the body settles to the lower does - I totally agree.

    Hope all goes well for you.

You may also like...