Help with dosage info

[BoaterAnnie]

Hi! I'm new here and really appreciate all the information you are sharing. I was recently diagnosed with PMR. I am 51 (not sure whether that makes any difference, but anyway...)

So my problem is that I travel full time so I don't have the ability to go back to see my dr regularly. I had to fly home a month ago after my husband told me I'd aged 30 years in the past few months and that's when I was diagnosed. I took prednisone 30mg for 5 days, then 25mg for 2 days, 20mg for 2 days etc. until I got down to 5mg for 2 days, then 2.5 for days then stopped.

Everything was improving the whole time I was on prednisone, but after stopping for a few days I felt the symptoms coming back and after 5 days decided to go back on it.

But I didn't really know what dosage to jump back in at. So I picked 10mg and have taken that for 4 days, and it's improved, but not as much as I'd like. I am guessing it would have been better to start at a higher dosage and taper down again rather than be increasing the medication.

Do you have any suggestions on what I should do for dosage now? Should I start at 30mg and do the whole tapering thing again? I have 2 doctors at home and one told me I should stay at 5mg for the next 3 months until I am able to see him again. The other told me to try to go off it, which is what I did. I'd rather not take it - I was hoping it would all go away for awhile after I stopped the medication, but that's not what happened.

I really appreciate your insights. Thanks!

Anne.

[HeronNS]

You need to take pred until PMR has gone into remission. You should be advised to taper your starting dose very slowly until you reach the lowest possible dose which controls your symptoms as well as the starting dose did. Tapering takes months or even years, not a matter of days or weeks. The duration of PMR can be around 6 years, although a few go into remission sooner, and others have to stay on pred for longer. A doctor who advises you to come off pred as soon as you can should be avoided. Pred for PMR is not like the pred which is prescribed in other situations where a patient can taper off relatively easily after the condition has been dealt with, but some doctors don't understand that pred doesn't cure PMR, only controls the symptoms. I suggest you need to get that inflammation (pain) under control again and be stable for at least a month before attempting a slow taper. Five mg will not be enough at this point, although you may be able to carefully taper down to 5 in the next few months, depending how your symptoms are.

Lots of good advice on here, and others will be along soon to offer concrete suggestions.

Good luck!

[BoaterAnnie in reply to HeronNS]

Thank you so much for taking the time to reply. When I got this schedule of dosage from one of my doctors, I had gone in to see him because I had read about prednisone and all the side effects and started thinking that I didn't want to take it all. I thought I might end up with a worse condition like diabetes or osteoporosis and maybe I should just put up with a few years of pain rather than get a permanent condition. So he was trying to talk me in to taking the pred, and gave me a schedule to get off it as quickly as I could because that's what I asked for.

Now, having taken the pred, well ... what a difference! It worked like a charm and I didn't get any side effects like weight gain - although I was only on it for 2 weeks. So now I am more willing to take it.

I guess I made a mistake by trying to get off it quickly, but you don't know until you try I suppose.

Thanks again for your help.

[BoaterAnnie in reply to HeronNS]

Thank you so much for taking the time to reply. When I got this schedule of dosage from one of my doctors, I had gone in to see him because I had read about prednisone and all the side effects and started thinking that I didn't want to take it all. I thought I might end up with a worse condition like diabetes or osteoporosis and maybe I should just put up with a few years of pain rather than get a permanent condition. So he was trying to talk me in to taking the pred, and gave me a schedule to get off it as quickly as I could because that's what I asked for.

Now, having taken the pred, well ... what a difference! It worked like a charm and I didn't get any side effects like weight gain - although I was only on it for 2 weeks. So now I am more willing to take it.

I guess I made a mistake by trying to get off it quickly, but you don't know until you try I suppose.

Thanks again for your help.

[PMRpro Ambassador]

Well, obviously your doctors at home have about as much idea as the doorpost what PMR and its correct management are!! PMR is a chronic autoimmune (probable) vasculitis (inflamed blood vessels) that has a median duration of management with pred of 5.9 years:

practicalpainmanagement.com...

In the absence of anything better, this is a good outline of a successful approach to management of PMR which is written clearly enough for you to follow without necessarily having a doctor handy to interpret:

rcpe.ac.uk/sites/default/fi...

If you have an improvement at 10mg I'd think that 15mg will be plenty to start at - the recommended starting doses are in the range 12.5-25mg/day and the lowest effective dose should be used (Recs 2 and 3 here):

rheumatology.org/Portals/0/...

It's all very well telling you to stay at 5mg for 3 months but if 5mg isn't enough to manage the daily dollop of inflammation that is a complete waste of time. The underlying autoimmune disorder attacks the body tissues and creates inflammation. The inflammatory substances are shed in the body every early morning - so once the accumulated inflammation has been cleared out with the starting dose of pred, the daily dose should be reduced SLOWLY to find the lowest dose that clears out the daily addition. The autoimmune bit seems to be most active at the start and does fade over time - but hoe long that takes varies from person to person. I haven't come across anyone on the forums in 10 years who was able to drop from the starting dose to 5mg in a few weeks successfully. I was given a 6 week course of 15/10/5 each for 2 weeks - I got relief in 6 hours, within 6 hours of missing the first 5mg tablet I was as bad as at the start, in bed, unable to move and in tears. I never got back to 5mg again for well over 4 years. Once it gets away from you, it is often harder to get under control.

I hope this helps for a start - where are you? Do you have a doctor handy to provide pred or were you given a good stock? If you have any questions - just ask.

[BoaterAnnie in reply to PMRpro]

Thank you PMRpro for all the information! Those links are really helpful for me. It's always hard to find good information on the internet. I mentioned to the previous person who replied that this dosage schedule was given to me because I was honestly a little scared to take it all after what I've read on the internet. So I went back to my dr saying I didn't want to take it and maybe there was some other alternative where I could put up with some pain and not get the side effects associated with pred. So he gave me this dosage schedule so I could get off it quickly. But now that I've taken it, it made such a huge difference!

But like you say, I don't want to let it get away from me and have a hard time getting it under control again. So now that I'm back in pain again, I'm thinking I'll just do the whole thing over. I was doing great tapering down on this quick schedule until I got to 10. That's why I decided to jump back in at 10. But it doesn't seem to be working. I have taken 10 for 4 days and still have pain. Whereas when I started at 30 the pain was gone in 4 days.

So now I'm thinking I'll start over. I'll take 30 again for a few days to get it under control and hopefully taper down to 10 and if I'm still good, then I'll start tapering down really slowly like the suggestions I have read here.

I am in southern Arizona now (I am Canadian) so I could fly home easily if I have to. But I did get a good stock from the dr so I think I'll be okay that way.

Thank you again for this treasure of information. Much appreciated.

Anne.

[DorsetLady PMRGCAuk volunteer]

Hi,

PMRpro has given you some good links, but this is from a patient’s perspective so might help as well -

healthunlocked.com/pmrgcauk...

[BoaterAnnie in reply to DorsetLady]

Thank you so much! That is a great write up and really helps me a lot. It is the "slowly" part I am having trouble with and I guess it's partially my own fault because I read bad things about pred and went to my dr saying I didn't want to take this nasty drug and wanted something else. So he talked me into doing this short course. I felt like I got my life back!! Now I think I just have to do it again and do the tapering properly.

Thanks again for this information, very useful.

Anne.

[DorsetLady PMRGCAuk volunteer in reply to BoaterAnnie]

Hi,

None of us really wants to take steroids, they do have some unpleasant side effects, but they are the only drug that will control the inflammation caused by your illness.

Whilst you may get some of the side effects, you won’t get all of them - and steroids do allow you to get on with life again. But a little slower.

Take care.

[SnazzyD]

Hello, the difference as you put it, the 51 makes is that you probably weren’t expecting to be blindsided by something that puts a handbrake on your lifestyle. This is a game changer that requires a bit of a rethink, not necessarily a full stoppage but an apparaisal of how you go about life. Caring for yourself so that your body gets chances to recouperate and to manage side effects is essential. It isn’t a case of pop a pill and carry on as if nothing is wrong, you’ll most likely pay for it at some point. Once things are under control you’ll probably start to realise that you weren’t right a while ago and that you feel much better now.

[BoaterAnnie in reply to SnazzyD]

You are so right! It's amazing what we get used to. I mean obviously I was in a lot of pain and couldn't even put a sweater on, but once I started taking the pred and almost all of the pain went away, I felt better than I had in a long time.

On the other hand, my body has never cooperated with what I want to do in life, so all this would be more shocking if it happened to someone with a body that worked better!! I had a back injury when I was 12 and back surgery when I was 30, so I've never been able to carry heavy things and I hurt my back on a pretty regular basis. I've also had neck injuries and knee injuries. In a way that is how I knew something was up because I've never done anything to injure my hips or shoulders so when they started acting up I knew something was very wrong.

I try to be kind to my body, but always end up feeling like it betrays me every time.

Thanks for taking the time to reply, I appreciate it.

[SnazzyD in reply to BoaterAnnie]

The thing I learned when at 54 my body couldn’t hold back the tide any more is that we can’t treat our bodies like they are a stubborn mule that stops carrying the load purely because it is a moody beast. My last 2 years has been a very hard lesson of working in partnership with it and it’s still not job done. Even after 30 years of nursing and seeing this in others, I was still blind to my own double standards because I couldn’t cope with the thought of change. My self esteem and identity hinged too much on it. I dare say if you’ve had injuries, your body isn’t being uncooperative it’s doing the best it can in the circumstances. The other hard lesson I had to learn is that we age. I know that 50 is the new 20 and all that and not old at all, but it is still 50 and I have noticed in people that the chickens of past traumas or unresolved issues start to come home to roost. Being angry at one’s body is just a waste of time; there’s too much life to live, so one has to adapt.

[BoaterAnnie in reply to SnazzyD]

"we can’t treat our bodies like they are a stubborn mule that stops carrying the load purely because it is a moody beast" - haha, I love that. Your point is well taken. That's exactly what I've been doing. I'm always angry at my body.

On a similar note, I am doing a guided meditation thing right now, you just listen to the app and the fellow tells you what to do. It was about pain management and the guy said that if you are angry about your pain, it causes more stress in your body, which is not conducive to healing. I thought that was interesting. So I'm trying not to resist it, but to just accept that this is what is happening.

Thanks again for your reply. This is all helping me very much.

[Breconblue in reply to SnazzyD]

I can really identify, Snazzy. I am older than you, at 62, retired from Nursing after over 40 years. Hardly took a pill and never regularly in that time. My identity was as a fit, healthy worker with an active social life. I developed " frozen shoulders" which in retrospect was prob PMR and staggered through my last 2 years at work. I was a Sister, running busy unit, suddenly, I had no work to get up for, and could barely move! Husband still works, and I'm now taking so many pills the pill holder is bursting.. you really have to readjust your own self image, don't you?

[SnazzyD in reply to Breconblue]

Yes indeed! Going from capable to being relatively useless is quite a blow. Makes describing oneself to others a challenge too, when the inevitable, “what do you do?” Is asked.

[HamishPMR]

If you are in thr uk, google " nice pmr dosage"

[BoaterAnnie in reply to HamishPMR]

I'm not, I'm in the USA right now. Too bad, it looks interesting, but only available via subscription if outside the UK. Thanks anyway, maybe it will help someone else.

[Rosedail]

Oh my gosh! I'll just be one more voice I'm sure, but I'll chime in anyway. Your physicians do not know enough about PMR and Prednisone tapering, even though one of them apparently diagnosed you!!! PLEASE get a new physician who really understands and is experienced with PMR, preferably a Rheumatologist. I was diagnosed when I was 52, and I was fairly certain it was PMR because my mother had had PMR as well in her 50s (and probably also her father although they called it rheumatism back then). Still, even though I had seen my mother go through it, it was still hard to accept. I was otherwise healthy, active and had a very busy life. It seemed to come out of nowhere! My first primary care physician was loath to diagnose me due to my relatively young age, so I got worse and worse for months until I could be seen by another physician. She prescribed me prednisone and, although I hated to go on it as I had seen my mother's face puff up for a few years, it allowed me to walk again, get up the stairs again, and get out of the car again I had to wait three months to see a Rheumatologist, but she confirmed the diagnosis and hoped to get me off the prednisone in 18 months. Anyway, it took me 2 years to slowly wean myself off of the prednisone and get through the PMR. I did get the "moon face" but I have no regrets about taking the prednisone. I had to cut back on a number of obligations, but I kept working. My Mom took 3 years to wean herself, although the last 9 months were all at 1mg. I was one of the lucky ones as two years is probably pretty close to the shortest time I've heard of anyone successfully getting through the PMR. It's been several years since getting to zero prednisone and, excepting a few joint issues and general aging, I am doing well. Hiking and biking, etc. Also, I started on 15mg...I recommend speaking to a knowledgeable physician about re-starting at the lowest dose where you feel "able bodied". Best to you!!!

[Rosedail in reply to Rosedail]

Oh by the way, this is an awesome support group so I hope you read through others' experiences, read up on diet, taking calcium, etc. and visit often for support. It will keep you as healthy and as sane as possible through a somewhat rare disease that many other people in your life will find hard to understand. I didn't find this group until the very end of my PMR, but it helpful anyway, especially for some of the lingering joint issues. PMRPro, Dorset Lady, HeronNS, and so many others are extremely knowledgeable and experienced and oh so generous with their time and support!

[BoaterAnnie in reply to Rosedail]

Thank you so much for your reply. It's great to hear about everyone's different experiences and that it is possible that it could be just a couple of years. Although I know for some it has been 6 years or more. But at least this is something to hope for.

When I get back to BC in May, I'll be there for a few months, so hopefully it will be enough time to get to a specialist and get the tests done that my drs already want. I only went home for a week. You have me thinking though that perhaps I should call and ask for the referral now, otherwise by the time I get an appointment I will be gone again. I travel full time, but it is in an RV and I've been doing it for 8 years, so it isn't as difficult physically at it might sound. I usually do one or two more difficult trips a year, maybe an international trip and some kind of wildlife trip that requires difficult hiking, but I haven't made any new travel plans until I get this PMR figured out.

I know I should be concerned about the more serious side effects of prednisone. And I am. But honestly, I am concerned about moon face. How vain. I know. There are bigger problems than a puffy face. But there you have it. Do you happen to know if this is a side effects that is somewhat random, or does it correlate to long term usage of a certain dosage? I was glad to read that even though it happened to you, you still didn't regret taking the meds. I understand now what a huge difference it makes to quality of life. Before I took it, I couldn't even put a sweater on let alone carry my big lens around.

Thanks again for your reply.

[PMRpro Ambassador in reply to BoaterAnnie]

Moonface mostly correlates with continuing to eat carbohydrate foods - if you cut them drastically you can avoid excessive weight gain and very often also moonface. A few of us don't see any evidence of it when we look in the mirror - I did develop all the signs of Cushing's syndrome on one form of corticosteroid, I was switched to prednisone and cut carbs drastically and lost 35lbs of pred/PMR associated weight within about a year and the doctors at the local hospital all agree - no signs at all I have been taking pred for over 9 years. Definitely no longer Cushingoid.

[BoaterAnnie in reply to PMRpro]

Okay that's good to know. I actually went on a low carb diet about 2 years ago and lost 30 pounds, which I had gained due to a different medication (which I am no longer taking). Since then I've pretty much stayed the low carb so hopefully that will do it. Thanks again for all the info.