PMR still winded in morning 1 year later

Hi Mjhollywood,

I know exactly how you feel. I'm 56 and was diagnosed at 55. I am at 2.5 down from 20 mg 14 months ago. I have learned from this forum that there are many people out there who do not have their symptoms resolve and reach 0 steroids in 12 months time. Myself included. Unfortunately, the doctors often set that up as the expected "textbook" course of recovery. You and I are both in the early onset category. And while it is hard to go from being so active to being limited at only 55, my rheumatologist pointed out that of all the diseases he treats in his specialty, PMR causes the least damage and responds to treatment the most. So, don't spare the treatment. I learned that the hard way when I stayed too long on a lower dose that wasn't working.

Just a few weeks after the onset of my PMR I was in "your neck of the woods." I broke down crying on the Hollywood Beach Broadwalk when 85 year olds were passing me on their morning walks as I (only 55), shuffled along taking short baby strides because I didn't have full range of motion in my legs due to stiffness. One year later, I returned and could actually keep up with (some of) the 85 year olds! Just know that I may take time and you can't rush it. Maybe the gym is too strenuous if you are already on your feet all day for work. I know I could not do that. This is not a time for "getting in shape", but a time for nurturing your body with moderate exercise and things that make you feel good. You are lucky to live is such a beautiful area by the ocean. For me, just being able to walk on that boardwalk by the ocean last month (and keeping pace with the octogenarians) was just the right antidote for body and soul. Be patient and good to yourself. 

Best of luck.

 

Beautifully put! ❤

Thx for the repley.  Have you tried acterma ? And do you know a good doc  in south Florida area ??? I don’t see many people on this site that are trying actemra for Pmr. I would like to hear from them. And does it really burn out the Pmr faster.   ??thx mj

Actemra is not approved in any country for PMR - it hasn't been trialed in it. Just for GCA. It has only been approved in the UK for GCA in the last few days - and this is a UK-based site so you won't come across many of us using it. There are one or two US members with PMR whose doctors have managed to obtain funding in the US - either on pilot studies or via the access programmes which only apply in the USA.

But while Actemra may make the PMR burn out quickly it is very expensive - and it is not M&Ms either. Its potential side effects are really quite considerable.

Never heard of Acterma, and from Eileen's response below, I see why. 

Sorry I can't help with the name of a rheumatologist in Florida as I am in the northeast. There are so many older people living in south Florida that I would think you could find a good doctor. Keep searching and asking. Maybe your GP could help with referral. 

Strangely many people find it difficult to find a good doctor in Florida - over subscription maybe? 

Most informative, thank you, Eileen.  I am at the 5 1/2 mg stopping point, using the dsns method (got pmr sept. 2016) and was doing well using split dose.  Able to walk 5000 steps a day in short spurts, light housework, much improvement in a.m. soreness and stiffness.  However, this past week I've had early evening bone crushing fatigue--you know the kind...too tired to brush teeth, pull back the blankets to get into bed, etc.  it came out of nowhere, as I was doing so well.

i understand that it is my cortisol levels not catching up, that it's part of the disease, etc.  but here is my question:  do I stay at 5 1/2 mg and ride it out until I feel better or do I go back up to 6 mg?  And if it is the latter, how long should I stay?  I am hoping I can ride it out...

today i I have decided not to walk (that will kill my very determined ego); I am going to force my body to rest--or maybe I will walk but only a very short distance.  Thank you in advance for your very patient responses--and everyone else's.  I would be lost without this forum.

Most informative, thank you, Eileen.  I am at the 5 1/2 mg stopping point, using the dsns method (got pmr sept. 2016) and was doing well using split dose.  Able to walk 5000 steps a day in short spurts, light housework, much improvement in a.m. soreness and stiffness.  However, this past week I've had early evening bone crushing fatigue--you know the kind...too tired to brush teeth, pull back the blankets to get into bed, etc.  it came out of nowhere, as I was doing so well.

i understand that it is my cortisol levels not catching up, that it's part of the disease, etc.  but here is my question:  do I stay at 5 1/2 mg and ride it out until I feel better or do I go back up to 6 mg?  And if it is the latter, how long should I stay?  I am hoping I can ride it out...

today i I have decided not to walk (that will kill my very determined ego); I am going to force my body to rest--or maybe I will walk but only a very short distance.  Thank you in advance for your very patient responses--and everyone else's.  I would be lost without this forum.

I know what you mean.  it is only within the last few months that I've felt okay just taking a day off and not going for the walk, or maybe jsut going for a short one.  I wear my pedometer every day, and it bothers me not to achieve 10,000 steps.  But on the other hand, I do manage far more often than not, and because I've been so good for so long I think it doesn't hurt to have a day off, so to speak.  The key thing is not to let that day off turn into a week off, and to lose one's level of fitness, achieved with such care.  Personally I don't think it's a good idea to increase pred in the face of fatigue (not unless adrenal function really is proven medically to be dangerously impaired).  How will our adrenals ever get back on track if we keep letting them off the hook, so to speak.  Sorry about mixed metaphors. 

If it improves a bit, albeit slowly, then stay where you are as that is more of a prod to the adrenals to function. But if it doesn't and you can't function then you may have to go back - or alternate 6 and 5mg maybe? And if it doesn't improve - definitely worth asking the GP about the possibility of a synacthen test (ACTH stimulation test) to see if your adrenals are CAPABLE of making cortisol. It doesn't mean they ARE doing so, but if they aren't going be able to do so anyway it is useful to know so you don't keep banging your head against the proverbial brick wall1

Thank you...I'll wait awhile to see whether the fatigue abates, and will stay on 5 1/2 for as long as it takes.  I thought that by doing the dsns that I wouldn't have fatigue, but once again, pmr triumphs!   If the fatigue persists, I'll do the 5 1/2-6 mg waffle plan to get things back to where they were.

i am loathe to have the acth stimulation test because I am so very hypersensitive to medications--am afraid I'd be one of the ones with the side effects from the injection.

thank you, most appreciated.

It is maddening not to be able to do what I want.  As I told Eileen, I'll power through the fatigue for awhile (and take a day off as you advised) to see if it abates.  I've been walking just short of a mile in the afternoon; I'll cut back on that for now--go in shorter spurts.  A doctor once told me, "you can't exercise with determination when you have chronic pain."  (This was pre-pmr, but definitely undiagnosed early onset).  I've always been determined to power through, no matter what.  It kills me to be fatigued.  Thank you for your always kind and thoughtful comments.

I did myself in yesterday evening by shifting, very carefully, rather too much heavy snow out of my driveway.  When I got up this morning I could hardly move  I had to walk this morning because despite yesterday's efforts I still couldn't get the car out, so have done approximately half my daily goal which makes me happy, but will be moving a bit slowly the rest of the day.  🐌

Hi Twopies,

I was having the same problem on my most recent taper from 2.5 to 2.0. For me, the symptoms just kept getting worse with each passing week until in the end not only was the fatigue worse, but I developed depression. I would strongly advise not to stay too long on a dose that does not work for you. I tried to stick it out on the lower dose for 5 weeks. That was much too long. I had never experienced depression before, but having gone so long on the wrong dose, I became numb inside. For me, that was much worse than the fatigue. Once I went back up to 2.5 the clouds lifted and I felt alive again. I read some research linking depression to the auto-immune/inflamatory response which can cause chemical changes in the brain. 

Bottom line, if the dose doesn't work after 2-3 weeks, go back to last dose. Don't let your symptoms spiral downward for too long!

Really good advice!  Yes, sometimes I blubber my brains out for no reason.  I read in the beginning of this journey that depression was a possibility but I had read it was due to the pred. No matter, it’s not good either way.

How long did you stay at 2.5? Or if you are still on it, how long do you plan to stay on it before going back down to 2? 

I was only on 2.5 for 2 weeks and then my doctor had me reduce to 2.0.

I was feeling good on 2.5 but as soon as I went down to 2.0 I felt bad, and went from bad to worse. Stayed on 2.0 for 5 weeks. 

Then back to 2.5 for 1 week. 

Tried reducing again for two days but could tell immediately it was effecting my emotional well-being as well as physical. 

So now I have been back on 2.5 for 11 days and am doing so much better. The difference is like night and day. My doctor wants me to stay on 2.5 for another 2 weeks and try a reduction after that.

I am thinking I would like to try 2.25 since I have had a couple of failed attempts with 2.0 That would require getting the .25 in liquid form. My doctor was not in favor of this only because I would be using both pills and liquid (two 1mg pills plus .25 ml). I don't see why that is a problem. Wondering if anyone else has tried that?

The dead slow method was developed to help us get through reductions at the lower levels.  On the other hand, if you were to try the dead slow method and it still didn't work, I'd say you'd reached the level your body needs in order to control the inflammation.  I use the dead slow method and if at the end of a taper I don't feel as well as or better than I did at the beginning I know I'm not ready for the lower dose.  And it's pretty standard that at the lower doses you need at least a month at a dose before you know if the reduction is working.  My doctor made the mistake of suggesting somewhat faster reduction when I was at 1.5, and my equal mistake trying to do what she said resulted in a flare which has set me back by about a year.  From now on it's dead slow nearly stop all the way, with an emphasis on stop! 

No - depressive mood can be an integral part of PMR/GCA and is listed as as a symptom. It may be the inflammation and there is a link to chronic inflammation. But it may be just so. It is certainly there without pred too.

So actually you had reduced by 1mg - or 33% - in a few weeks. Your doctor is a clown - you need AT LEAST a month at each new dose - and the lower you go, the longer you need. For comfort, no reduction should be more than 10% of the current dose. Not only to allow your body to get used to the new dose before moving the goal posts again but also to cajole your adrenal glands to stage a slow return to duties.And there is no reason at all to worry about mixing liquid and tablet forms - except that liquid format costs about 30 times what tablets do (in the UK at least). 

If your body has revolted twice already at the same dose it is telling you quite clearly it is not yet ready to go lower. Your GP is putting you at risk of a flare - and having to go back considerably higher. Why's he in such a hurry? You are at a low low dose, well below the physiological dose, the amount of corticosteroid your body produces in the form of cortisol anyway. All that happens is that your body tops it up to the level it needs, And the evidence is that there are no serious problems long term at PMR-type doses:

https://www.medpagetoday.com/rheumatology/generalrheumatology/66912

is an article about work from a top PMR expert at the Mayo Clinic, Eric Matteson.

Thank you, Eileen! I don't know why my doctor is in such a hurry. I already had one flare that lasted a few months after trying to reduce from 5 mg. Then recently, I experienced depression when reducing from 2.5 to 2.0 so quickly. 

I will check the price on the liquid. I don't think there is a big difference in price here in the US because the pharmacist recommended trying it. I really think it could make all the difference in achieving a reduction. When I find out if it is a viable option price-wise, I will let you know. 

The timeline I was given at my very fist appointment was to go from 20 mg to 0 in 12 months. There was some mention of possibly taking 18 months, but it sounded like that was in "rare" cases and not expected in my case. I felt very defeated when I did not achieve those expectations. As soon as I was not able to keep to that schedule, it was suggested I switch to methotrexate. Thanks to the information and support from this forum, I felt I was making steady progress and should continue on the prednisone (which at the right doses was working wonderfully). The doctor's thinking had to do with long term bone loss from steroids. However, after being on steroids for almost I year, I had a bone scan and scored in low normal range for my age. 

My plan is to stay on 2.5 for 1 month and then try and persuade my doctor to prescribe 2.25. I have not had to use the dead slow method yet, but might have to resort to that at some point. 

 

Your doctor is in cloud cuckoo land! The work in the article I gave you the link to also established that PMR lasts on average (a median time of if you want to be picky) just under 6 years. Only very small numbers are able to get off pred in a year - so I am totally lost as to where so many doctors get this 1-2 years concept from. It is totally unrealistic. I can only assume that the patients who fail are labelled with fibromyalgia - which pred does nothing for and neither does anything else. Good get-out "sorry, there is no treatment..."

If he won't listen to better scientists in the field than he is - find another.

Hi Eileen,

The article you referenced is so helpful. Thank you!

I checked with the pharmacist and the price of the liquid prednisone is not substantial. One month of pills is approximated $10 (US) and one month of liquid is $20 (US). According to the pharmacist, the liquid is used very often here for children and elderly.

I'm still waiting to hear back from my doctor as to whether he will approve the reduction to 2.25 instead of 2.0. Plan to explore other doctors if I keep getting resistance to my own timetable for reduction.

I am so surprised by your information about average length of symptoms being 6 years. I was really feeling like an "outlier" and failure when I wasn't all better and down to 0 after 12 months. Your encouragement and enlightenment on the subject means so much. It makes it much easier to "soldier on" knowing this is the normal course of the condition. Adequate knowledge and realistic expectations are so important for patient morale.

With much gratitude,

Gail  

Oh I know - but it seems to be a very English language thing. Not too sure who are worse, the Americans of the Brits. They are mostly a bit blinkered. Mainland European doctor are taught from an early stage it lasts 5 years on average!