It is amazing to know you are there.

[lisbonportugal]

It's like having a best friend, doctor, and psychologist. I so appreciate you so very much. I was diagnosed with PMR 2 years ago. I went down to 0 Prednisone this last July, 2022. I was so happy. I had a severe flare up right after I stopped the Prednisone. My pain was so much more that the original pain that set the diagnosis in motion.

I had to go back to 10mg. At this time my PMR is still active on 10mg. I don't feel well, I have symptoms that are minimal but they are there...headache, shoulder pain, wrist pain, heavy feeling in my head, eyes heavy and watery.

Please help me to make a decision to either go up on the dosage of Prednisone, or to tolerate symptoms that may go away and stay on 10mg for a while. I am telling you all this, because if I tell my doctor she will automatically put me on a higher dose. Hugs, Alexandria

[PMRpro Ambassador]

Only you can make the decision - but I suspect there will be a lot of support for going up a bit. There isn't really a lot of sense in being at a dose that is too low to eliminate all the inflammation each day as the left over inflammation will just build up and, like a dripping tap will fill a bucket, the inflammation will eventually take you back to where you were.

[lisbonportugal in reply to PMRpro]

Dear Ambassador, shall I try to go up a mg at a time? Or, 5mg at once?

[HeronNS in reply to lisbonportugal]

I know PMRpro will answer tomorrow, but from the East coast of North America where I'm still awake although I shouldn't be: if you are not doing so well, the extra 5 mg is a good idea. I've tried both the creeping up mg by mg, and the hit it on the head with 5 mg, and I have to say biting the bullet and taking the larger amount really is better, and you would almost certainly need less pred in the end. Certainly with the symptoms you are describing I think 15 mg would be a really good idea and then see how it goes. Remember, pred may be a serious medicine, but it is also your friend when you have PMR or GCA.

[lisbonportugal in reply to HeronNS]

Thank you so very much HeronNS for your thoughts and royal support. I thank you also for answering in detail about the going up one at a time as opposed to 5mg at once. I am going to take your advise. Go to sleep now. Sweet Dreams

[HeronNS in reply to lisbonportugal]

Reading your comment about how your head feels, and your eyes - yes, if you haven't been examined yet, GO NOW! Good Luck - and do let us know how you get on. 🍀

[lisbonportugal in reply to lisbonportugal]

Does PMR effect the eyes? Does it effect the brain? Is there inflammation that can occur in the head area. My eyes feel not well, and my head feels inflamed.

[PMRpro Ambassador in reply to lisbonportugal]

PMR doesn't - but its big sister GCA does. About 1 in 6 patients with PMR go on to develop GCA, giant cell arteritis. Has your doctor not told you about it and the symptoms to watch out for? Visual symptoms, headache, feeling more unwell, amongst others.

[PMRpro Ambassador in reply to lisbonportugal]

Creeping up never works well - you are always playing catch-up as the inflammation worsens.

[piglette]

If you try and tough it out, I would put my money on PMR winning!

[HeronNS in reply to piglette]

Yes indeed.

[DorsetLady PMRGCAuk volunteer]

Few comments -

2 years is not long for PMR -despite what many doctors think,

10mg is below the normal starting dose for PMR - certainly in most guidelines,

As PMRpro has said no point in being on too small a dose.

Even without doctors advice, I would be considering 15mg …. Which is usually the starting dose most doctors go for.

[lisbonportugal in reply to DorsetLady]

Dearest Dorset Lady, you are always right here for me and others. I am concerned on going up to 15mg because I have had so many side effects from Prednisone. I don't know if 15mg will through me into more side effects. My eyes are watering and look sick. Is this a symptom of PMR?

[DorsetLady PMRGCAuk volunteer in reply to lisbonportugal]

More side effects at 15mg than at 10mg…unfortunately you won’t know until you try, and up in one go, don’t try creeping up.

Can’t remember exactly what side effects you had, but you don’t have other health issues that could be exacerbated by Pred do you?

Eyes watering aren’t a common symptom of PMR, but may be due to Pred, have they been thoroughly checked, they should be just to rule out GCA. and what do mean head feels inflamed? Another possible GCA connection, although PMR can also make head feel odd. Along with all the other things you mention I do think further investigation is required.

[SheffieldJane]

When my PMR began behaving like this, it turned out that I had developed non-cranial GCA/Large Vessel Vasculitis with none of the typical TA symptoms we look out for, I just felt really headachy and ill having been sure that PMR was in remission. I was diagnosed by ultrasound and my Rheumatologist organised MRI scans as well. It may be that more investigations are needed. It is common to get both diseases. Early days for you with PMR though ( alas).

[cycli]

Did they test to see if your adrenals were working again? If not you shouldn't be off pred. It sounds like you have something else going on. possibly GCA. Either way 10mg clearly isn't sufficient to cope. I'm very sorry for you as you must have been elated to be off pred. We all wish for that. i'm down to 15mg now after 15 months and hoping. We can't tell you to go up or down medically and if I were you I would ask my GP and Rheumatologist to see if it had morphed into GCA

[lisbonportugal in reply to cycli]

Hello Cycli, I had an appointment for the cort stem test and I started back on 10mg before the date could be accurately tested. So, it was cancelled. Thank you for writing me. I feel so defeated.

[cycli in reply to lisbonportugal]

know the feeling. It seems like we have to work everything out ourselves. I'm bloating something awful at present. feels like Iam exploding. Constipated so nowhere for gas to go. Sitting up to relieve pressure on spine/nerves at present. Probably the result of pred. induced myopathy according to some of its effects. Your rheumy should have had you in for that test before getting you down to zero. Sounds like another failed expert. Sorry for your state. If you are still having pain then you will have to decide for yourself if your specialists can't advise. Good luck. As for me I'm glad I am a bloke and never had to be pregnant. that last month of term must be hell.

[Flivoless]

You mention problems with your eyes. IMHO you should get this checked immediately - A&E (ER) if necessary.

[PMRpro Ambassador in reply to Flivoless]

In the UK the MECS option is probably far more use and accessible than the ED. They will refer you appropriately having carried out he necessary examinations - and probably have better equipment than the ED!

primaryeyecare.co.uk/servic...

[Flivoless in reply to PMRpro]

👍

[cycli in reply to Flivoless]

Do you still feel defeated or has your situation improved now?

[lisbonportugal in reply to cycli]

Hi Cycli, Thank you so much for following me.💓 You are a keeper for sure. I had so much pain from the flare that I had to raise my does of Prednisone to 15mg. Pmr Pro advised me not to inch up. He was right. I am OK now. It has been hard to quell my fears of retaliation from the Pred. I hope to go down .25 in a month. Love, Alexandria

[PMRpro Ambassador in reply to lisbonportugal]

" He was right" - She

[cycli in reply to PMRpro]

your turn 😂

[cycli in reply to lisbonportugal]

Good for you Alexandria. As you can see below I posted to the wrong person, but you understood anyway. You are on same dose as me now, snap. I've been on 30+ over a year and I understand your issue with it. It has different consequences for each of us and we all have to adjust and cope in different ways. Keep smiling. I'll copy below something I posted on another thread. It might help.

[Flivoless in reply to cycli]

"Defeated" Cycli?

[cycli in reply to Flivoless]

sorry Flivoless. I posted incorrectly and should have been to lisbonportugal who answered despite my mistake. Either way hope you are well.

[Flivoless in reply to cycli]

Oh, thank heavens for that. I thought my memory had finally departed me. 😱

[cycli in reply to Flivoless]

can't remember if that happens to me

[cycli]

You can't accept anything fully until you have understood it properly and therein lies the key problem with this condition, I think. Firstly, many sufferers never knew what was happening to them for years while trying to come to terms with debilitating symptoms that weren't diagnosed. When it was finally recognised and treated the effects were more profound and embedded. I and PMRpro are such. There are many others here. All our stories are different as is our approach to dealing with this. I and others believe that such a path make the recovery and remission pathway harder and longer. If diagnosed early, it seems that the recovery path may be shorter and less troublesome. Therefore, it is imperative that you don't jeopardise your eventual recovery by adding complications and possibly embedding the condition by stressing your system unnecessarily whilst trying to recover. Our motivation for how we cope now with the new situation is affected by our personalities and needs. What we want to do is unfortunately secondary to what we are allowed to do by this condition. Giving up something you are good at; love doing and wish to continue with is almost impossible unless you have to or simply cannot continue. Only you will know that and will ultimately make the decision one way or another. Until you reach that point you will continue to hope for a return to some form of normality. If you are at that point you will have to make a decision and you will. It may be possible to return to some form of what you did or by then you may have another pathway. What is important now is that you give your body every chance of getting through this because you cannot MAKE it do what you want. We all unfortunately have some things we simply cannot stop doing. Try to limit these to essentials. I have quite a few of those and have therefore to take a more difficult route through medication and symptoms while coping. Much of the advice here has been to try and help you take a route which won't lead to this. You don't want to end up the way I was finally before diagnosis so be careful how hard you wish to push your body and whether or not it is worth the pain I can guarantee waits at the end of that path. I had no idea what was happening for years whilst I pushed on through the condition like many before me. You are lucky in that it has been recognised and is being treated however hard it is to come to terms with. I wish you well on your journey and a painless reduction on your way to remission.