I have been on 7mg pred for over 2 months and have always felt tired and fatigued. The last few days I have started having aching and pain in my neck, shoulders, arms and upper legs. Also my hands and fingers. my right wrist became hot and slightly swollen and painful. I am hoping that Eileen and Mrs O will read this and be able to advise me if I am having a flare up. I do not want to increase my pred unless i really have to as I get so many side effects. I would be very grateful for your advice and also from anyone else who is going through the same thing. I am waiting for my latest blood test results because my vitamin D is borderline at 45. Thank you in advance for your help.
Hello jan, sorry to hear of your pain. Have you been waking up with this pain or has the pain come on throughout the Day? And, has the pain got worse over this period?
None of us want to be on preds because of their side effects but if they are keeping the inflamation under control, then sometimes we have no choice. You say you have been on 7mgs for 2 months so it would be a terrible blow if you were to experience a flare now. I wonder if it would be worth requesting a ESR/CRP blood test to see if your levels have increased. Oh this PMR lark, it never rains when it pours!!! Hang on in there and hopefully Eileen or Mrs O will answer you soon. Regards, christina
Poor you, what a nuisance when everything seemed to be going well. I am sure Eileen will have some of her valuable experience to help but it does sound very much like you need to up the dose for even a short while rather than let the flare get a hold. I have pain in my wrists, more in the right wrist but I rather put that down to use of the computer mouse which might be above and beyond what is reasonable all focused on just one? muscle. Maybe it's the sudden changer in the weather from dry and warm to wet and windy? All the best, Diana
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
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
Jan, from the symptoms you describe, you are without doubt experiencing flaring inflammation. I know how frustrating it must be to hear that, but it isn't unusual to experience such flares in the first 12-18 months of treatment.
Your Vit D levels are quite low - normal is anything between 75 and 150/200 depending on which health authority you come under. However, I doubt the low Vit D is the cause of the amount of pain and fatigue you are experiencing - with a reading of 36 when first tested, I certainly was not experiencing any such symptoms.
If it was me, I would increase the steroids to at least 10mgs for a few days to tackle the inflammation before it gets any worse otherwise you will need to go even higher. I'm so sorry that this won't be what you want to hear but you do need to get the inflammation under control, Jan, to ward off the risk of GCA as well as other nasties. I do hope you will soon start to feel much better.
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
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
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.
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 !!!!
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.