Is this a PMR flare up ?

Hi Christina.   I just replied, but seem to have lost it, so I will start again ! I am fine when I get up, the pain comes on during the morning when I am active, and then gets a bit better when I have a rest or a lie down.  Also I am not stiff in the mornings.  It started about a week ago and at the moment my shoulders, arms and hands and fingers are quite painful.  I have just had blood tests and am waiting for the results.  I wondered if my lowish vit D levels might be having an effect on me.  I am also seeing a neurologist because I have bad tingling and pins and needles in the lower half of my body, which may be side effect of pred or my beta blocker.  Thank you for your concern, best wishes, Jan

Jan, have you been doing anything recently whereby you are using your muscles more than normal. When I experienced a flare in December last year I woke up with the PMR symptoms yet your symptoms appear throughout the day. I have developed pains in my neck, shoulders, tops of arms and both thumbs but the pain is not PMR pain, it's the sort of pain you get when you've over worked yourself and I have as I've recently started all this years gardening chores. But it will be interesting to see what the neurologist says especially re the pins and needles in the lower half of your body. I do hope you get an answer soon. Regards, christina 

I have done more heavy shopping than usual and i have had to be more active in the last week owing to family staying.  I really cant tell if it is muscle pain due to overdoing it.  But I do feel ok when I wake up and for an hour or two in the morning.  I have also been more stressed in the last week or two.

I think that is your answer - if you have to do more than usual you might need a bit more pred to cover the extra activity. 

But if you have family staying - do what I do. I do no shopping except for absolute basics until they arrive and then we go to the supermarket and they shop while we pay. They also have their bedding sitting on their beds, they make them.

And while these days a vit D of 45 would be considered as low - it was considered as perfectly acceptable to have a vit D above 30 until recently. Low is 20 or under - and even at that it didn't cause me problems. A level of 45 at the end of the winter is not too bad at all, even by current thinking, different thing if it had been 45 in September at the end of the summer which is when it should be at its highest!

Thanks Eileen, it is good to hear that.   But is it ok to take a bit more pred just for a few days.  I was on 7mg, went up to 10 this morning, it is already making me a bit tearful !  Sounds pathetic, but i react very quickly to all the meds i have ever been put on.  If, in future,  I have to do more than usual, is it ok to take a bit more pred just for a few days and then go back to 7 again?

also, how much more should I take?  

Yes, upping the dose for a short time doesn't usually pose any problems in going straight back to the former dose - providing of course it isn't a proper flare starting up. Although if you are so sensitive to changes and/or medication it might be better to go back down 1mg at a time every couple of days.

How much should you take? How long is a piece of string? It depends on what you need. Even 1mg more can sometimes make a massive difference and you can only tell how much you need by trying.

Have you ever tried splitting your dose? For some people taking it in smaller chunks often minimises its effect or taking it late at night allows them to happen overnight and daytimes are better - and for some as a plus they can manage on a lower dose and still get god morning stiffness control.

I have never tried splitting my dose as One of my side effects is palpitations and irregular heart beat at night, so my GP and cardiologist think it is better to take the pred all in the morning.   Also since going on pred I have not suffered from morning stiffness, thank goodness!   Having been on the raised pred for over 2 days my pain is much reduced, so very pleased I came on here to get advice.  Thank you to you all.  I just wish there were not so many horrible side effects to deal with !  I am trying to deal with it one day at a time, but sometimes it is difficult not to think of the possible months or years ahead.   I thnk if I can get down to below 5 mg or hopefully 3 mg My side effects will ease off.   Take care

Irregular heartbeat and palpitaions at night may NOT be a side effect of the pred but a side effect of the PMR. I can say that quite categorically since I developed atrial fibrillation soon after the PMR started although neither I nor my GP linked the symptoms I had to a/f. It was eventually diagnosed after a nasty (rare) reaction to iv diazepan for back problems and treated medically very successfully with propafenone. By that stage I was on pred - but the pred had not made it any worse and it was only when I didn't get any further episodes that I realised these problems in the first 5 years of PMR were due to a/f. The cardiologist is confident it was due to the autoimmune part of PMR damaging the electrical cells in the heart - it definitely wasn't pred as I wasn't taking it when it started.

Sorry it has taken so long to reply,   I am having problems with my my laptop.   I will mention your story to my cardiologist when I next see her.          Mine started about 3 weeks after I was put  on pred, so i think it was assumed it was due to the pred.  Just shows how wrong it is to make assumptions !!  Thanks Eileen

Thanks Diana.   Probably the weather doesnt help !  I am surprised that it was my right wrist that became swollen, as I am left handed !  It just feels like a different sort of pain to before.  Best wishes to you

Mrs O,  You are right, it is not the news I wanted to hear, but I understand what you are saying.   How do I do this?  If I go up to 10 mg and the pain gets better, how many days do  I stay at 10 and then how do I reduce again ?  Do I have to do 1/2 mg each time for 6 weeks all over again ?  Its all so depressing to think about going through it all over again.  On the other hand, I am terrified of getting GCA, so it is the lesser evil.   I will go up to 10 tomorrow mornng.  Thank for your advice, jan

Jan, take one step at a time, firstly trying the 10mg for a few days to see if the pain resolves.  If it does, and I hope it does, then you should remain there for a couple of weeks.  Can you pinpoint at which dose the symptoms, started to return?  If so, then you may be able to reduce back down a little faster than before BUT only to a point just above where those pains started to appear.  And no more heavy shopping, people to stay or stress - all probably the reason for the flare.  So lots of rest and lots of anti-inflammatory food including sardines! 

The pain started about a week ago and I have been on 7mg for over 2 months.  I have always felt tired, fatigued, since before I was diagnosed, so it is only the pain which has come on recently.  If the pain does not resolve, does that mean that it is not a flare up and that it could be muscle strain ?  On the other hand, if it does get better, can I drop from 10 to 71/2 mg after 2 weeks ?  Thank you for the advice, I really appreciate how kind you are and all the other people on this forum.

Jan, hopefully the 10mg will work - think positive!  As I said, one step at a time, but I don't think dropping from 10 to 7 1/2 after two weeks is wise. Better to try a half mg reduction first of all and then if all goes well perhaps another half mg reduction after another two weeks.  You have already had a hiccup and you don't want another one, I'm sure.  

That is what I will do.   You dont think there is a possibility that i am suffering from muscle strain from overdoing things  ?   Probably better not to risk makng the wrong decision.  Thanks Mrs O

Jan, anything is a "possibility" but we can't see or feel your pain, plus we aren't doctors so are only able to advise you from our experience.  And in my experience the widespread pain that you have described sounds remarkably like increasing inflammation as opposed to "muscle strain from overdoing things".  If the latter was the case, it would be more likely to be confined to one or two areas as opposed to being so widespread.  Of course, overdoing things to the extent that you have mentioned, plus the stress to which you refer, has no doubt contributed to the increasing inflammation.  Plus, you had a yo-yoing situation with the doses at the beginning, having started at far too low a dose to tackle the inflammation of PMR - unfortunately, none of this will have helped.  

One additional thought:  have you had a Vit D blood test to see whether you may be deficient?  Such deficiency can lead to pain similar to that of PMR.

Everything crossed for you, Jan, that the increase to 10mg will relieve your pain.  Do let us know.

 

I had a blood test a couple of days ago, just waiting for the results.  My vit D level was 45 a couple of months ago, which is lowish.   I have taken the 10 mg this morning, will let you know how the day goes.  Thanks Mrs O.   Are you now free of PMR/GCA?

Jan, duh!  Apologies for repeating myself about the Vit D - my night's sleep has obviously not proved very refreshing!

Yes, had both PMR and GCA for a total of 6.5 years (including one year undiagnosed).  Have been in remission from both for approaching three years.  Proof, if proof is needed, that you WILL all recover from this frustrating condition.

Don't worry !    I do it all the time, not sure if its my age or the medication or a bit of both probably !!!   So pleased you have been clear for nearly 3 years, as you say, it is good to hear that one day we all will.   Sooner rather than later hopefully too !!!!