Log in
PMRGCAuk
7,689 members12,862 posts

New to PMR

Hi, I'm new to writing in forums and somewhat new to the wonderful world of PMR. I was diagnosed last July at age 51 after developing the classic symptoms of bilateral pain in the legs, groin, arms and shoulders. Extreme fatigue also accompanied the pain and after an initial dose of 20MG of pred (SED rate was 66) the symptoms improved dramatically. Since then I have been gradually reducing the pred at 1mg every two weeks to 12 mg when I experienced my first set back. A bout with a head cold and fever caused the SED rate to shoot back to 49. During this set back the soreness and fatigue have significantly increased and are prevalent throughout most of the day. My GP put me back up to 13MG but I am doubting its effectiveness this weekend. As those that have written on these posts know, this is a real bummer. Until PMR I was extremely healthy, active, positive, and loved to go full speed at work or while hiking, skiing, etc. The realization of the limits that PMR is either setting or I am setting because of PMR is the hardest thing to get used to. The fatigue is the one symptom I could do without. From what I gather through these posts I need to reset my expectations and find things to do to replace so of my activities with others that I find satisfying. Maybe writing in forums will do just that!

Thank you for reading and most importantly, thank you for sharing your PMR journeys as they are as helpful as that initial jolt of Pred that we all experienced.

14 Replies
oldestnewest

Greetings and Welcome peter :-). I can well-relate.

Thanks for your Post - just a very quick response:

Your PMR situation sounds very typical, and I'm sure the PMR / GCA 'Aunties' (experts) will be along soon with their advice, wisdom and recommendations for managing, and coping with PMR.

There are relatively few of us Lads here with PMR, so it will be good to follow you on your Journey. It's not always an easy or straightforward one, but you are in very good company here.

Please keep us posted, and try to stay Positive along the way.

'Uncle' MB

2 likes
Reply

Thanks Uncle MB. Since my diagnosis I have been quite surprised at the disproportionate level that PMR affects women versus men. Although we don’t choose this sort of thing I’m glad that I’m not alone. Will write again when the situation warrants. Best, Peter

1 like
Reply

Hi Peter, and welcome,

I doubt if 1mg is enough to make a difference, it may do, if you’ve caught it quickly enough, but if no change in a couple of days then an extra dose may be required.

As an ‘Auntie’ you might find this screed of mine helpful - hope so

healthunlocked.com/pmrgcauk...

Take care

2 likes
Reply

Thanks for the screed! My plan is to test my SED rate early this week and notify my GP of the continued symptoms. Will update if situation changes. With much appreciation, Peter

1 like
Reply

Hi Peter and welcome to the forum. What a familiar story!. Perhaps gentler reductions from now on? Acute illnesses like colds and flu are always a set back. PMR loves company. The deathly fatigue is a bad symptom. I gave into it in the end and I really do rest after any activity and usually try to have a nap in the afternoon. This helps so much and coupled with going to bed around 10 pm I don’t notice the fatigue so much. I actually look forward to a nap now instead of feeling rebellious about it or guilty. Thankfully for most of us PMR is temporary and treatable. Treat yourself kindly and you’ll be back on the slopes one day. Stick with us and let us know how you are getting on. You may find that 15 mgs for a few days does the trick. It’s pointless rushing down, it’s like snakes and ladders - you are bound to hit a snake if you go too fast by too much.

2 likes
Reply

Thanks Jane. I have been trying to stick to a consistent bed time of 10 pm and when I do, it really helps. Will keep you posted. Best, Peter

Reply

Thanks for that reminder...consistent bedtime. I was doing that last year, since Jan it’s gone a bit pear shaped. Winter Olympics aren’t helping! I must reorganise myself!

1 like
Reply

Following the Olympics is tough on sleep routines without PMR! Will try my best. Take care.

1 like
Reply

Welcome, peter, to a club nobody wants to join, and we all cheer when a member feels ready to leave!

I sat still with my reduction when someone came to the office and gave me their cold for the holidays. If I recall correctly, I was just about where you are. On a couple of days when I felt really achey, I took and extra .5mg or 1mg and felt somewhat better. (After a few knock-down, drag out fights with my rheumy, I now pace my taper myself and add .5 or 1mg for a day or so as needed, which hardly ever happens.)

I stayed at the taper dose until all symptoms abated, then went back to reducing .5mg for a week, and resumed a 1mg/week taper after. I believe I avoided a flare by doing that.

Maybe you should have the same discussion with your rheumy.

Reply

Welcome. Sorry to hear about your recent setback. But from the description of how well you were doing before your illness, I suspect you'll be back to normal for PMR in a short time.

Fatigue is a bummer.

Take it easy if you can. It is hard to hold back when one is a go getter.

1 like
Reply

Hi Peter,

Sorry to learn of your recent diagnosis of PMR. That is one thing you, and the rest of us with this affliction, could well do without!

I am one of the "lads" Uncle Mark refers to, who is on this forum. I am a bit older than you at 78, but I was fit and healthy when diagnosed just over three years ago. I started at 30 mg, and am now at 5.5 mg, so it has been a long journey.

As a starter, I recommend you read Kate Gilbert's book - Polymyalgia Rheumatica and Giant Cell Arteritis: a survival guide. Also, there is some excellent and very helpful literature available from pmr-gca-northeast.org.uk. All this will hopefully help you to get to understand what PMR is all about.

I realise you are concerned about blood markers, but lots of us (about 20%) have normal blood markers throughout, after the first doses of prednisolone. Certainly, that applies to me.

Yes, you will have to get used to the fatigue. The main thing that helps here is to give yourself plenty of rest, and don't try to do too much, especially on days you feel a bit better. PMR comes back to bite if you do that.

Also, my experience would tell me that it very important to taper your prednisolone slowly. I have not had a proper flare over the three years, but I have had to make small adjustments upwards on about five occasions, when I have felt symptoms begin to return. Catch it early is my motto.

Fortunately, and contrary to some, I have an excellent GP, who has allowed me to manage my pred doses on my own, so I have had no pressure to come off the preds too quickly. Basically, I just listen to my own body, and, when appropriate I have sought advice from this excellent forum.

Good luck

Paddy

2 likes
Reply

You seem to have identified what you need - now you just have to do it!!! Easier said that done for most!

The raised blood markers could equally well have been the cold - they are very non-specific. The symptoms do tend to reappear with such infections - but if you are going to not wait it out, 1mg is a bit of a sop! Back to 15mg for a week would have been better probably. And reducing at 1mg every 2 weeks is actually a bit speedy until you have the measure of YOUR PMR! It isn't like Mark's or mine and what works for him or anyone else may not work for you.

In case you haven't seen it - to add to DL's screed:

healthunlocked.com/pmrgcauk...

PS - a kip in the afternoon may allow simpler adjustment to the Olympics! I haven't stayed up (wasn't anything worth it since the alpine ski races have been postponed) but all I like is repeated during the day on one of about 5 national channels (German, Austrian, Swiss, Italian and Eurosport ;-) ). I find curling tends to be a bit soporific and I just don't get icehockey despite its popularity here!

1 like
Reply

I have conferred with my GP and I’m going back up to 15mg from 13. Looking forward to the relief. Then we’ll see about tapering after a couple of weeks. Fortunately my GP has experience w/ PMR and is not in too much of a hurry to reduce.

This forum has been a great place to learn and be supported during my first set back. Nothing is to linear with PMR I gather!

With much appreciation, Peter

1 like
Reply

Hello,

Just a thought, I don’t know at what point you were tested but a decent head cold could quite easily send the ESR up. Viral muscular pains could also confuse the picture, but you know your pains better than me.

1 like
Reply

You may also like...