Symptoms worsening.

[FreeWolf]

Upped prednisone dose to 10mg on Aug 1 due to worsening symptoms. I felt better for several weeks however presently I have upper body pain: arms, neck, also jaw and head. The jaw/head pain is relieved with acetaminophen but not the arm/shoulder pain. Fatigue has been an issue as well. I am a bit worried about feeling generally unwell and think I must be mismanaging myself. I seem to be blindsided by the nuances of this condition.

[piglette]

It sounds like you are on too low a dose. You have dropped by over 30% in five months which may be too much for you.

[FreeWolf in reply to piglette]

O.K. I'll get that done. Thanks.

[SnazzyD]

I agree with piglette, it sounds like you’re simply on too low a dose. You started Pred only 5 months ago and from the sounds of your bio, you live a busy life and you said, “I don’t give up easily”. I dare say you are one of hoards of us that don’t want to give in and end up making our bodies do way too much even when we think we have cut back. By early PMR standards it’s still too much, especially when the muscles and ligaments become more delicate. Pred is only propping you up, it isn't stopping the autoimmune activity which still seems to be active. If you reduce too fast, you will know about it. It’s a flippin annoying concept if you are active I’ll accept.

In your previous post you said you were going to see your GP regards weight loss etc. Did you go?

[FreeWolf in reply to SnazzyD]

Yes I did contact my gp and it was under his advice that I increased to 10mg. My weight stabilized after that increase. I think that your advice applies very much to my situation. Ironically my stubbornness after I had MS attacks helped me improve after the deficits suffered during a flare. Mind you I was much younger then but I had a comfortable coping strategy with MS even though it was scarey at times and I felt successful with my coping skills. I understood what I could and couldn't do. I feel that I cannot "read" this condition like I can my other diseases. You are very right in what you say. I never even thought about the underlying processes of PMR and the fact that prednisone can make one feel "cured" even though the tap keeps dripping. Thank you for helping me to see this situation in a more realistic light.

[SnazzyD in reply to FreeWolf]

It isn’t easy to ‘read’ one’s condition when the Pred covers the cracks.

[FreeWolf in reply to SnazzyD]

So true.

[PMRpro Ambassador]

It may be autoimmune but recovery from an MS episode is different from dealing with PMR. I think you have overshot the dose you need - and in PMR when you do that you tend to steadily get worse over time because the illness is ongoing over months and even years, Like the others I think you have overshot the dose you need and it all built up again. I am a bit concerned about the weight loss - that doesn't often happen with "just" PMR but can happen if the inflammation is more extensive as in GCA or LVV.

[FreeWolf in reply to PMRpro]

I understand what you are saying and I believe you when you say PMR is quite different.I will contact my doctor re the concerns you mentioned. I thank you for the good advice.

[Palme]

Dear FreeWolf, I want to encourage you that I am off Prednisone. The PMR disease finished with me after 2 and 1/2 years. I tapered down slowly the last half year. Just use what you have to and do what you have to in order to get through. It will end. I am praying for you now. Mother Nonna