reduced to 10 mg june8, now rheumy says stay for another 3 months

[arvine]

well if you have followed my story, i started on 40 mg of pred llast oct, diagnosed by my gp, got relief from not being able to lift my arms to brush teeth, hair or dress, down to 10 june 8, also have had the stress of my son beiing diagnosed with cancer, multiple myeloma, i thought when first went down to 10 then, didn,t feel shoulder pain, now in left shoulder,, too much, but soon became apparent in second or 3rd week of reduction, shoulder stiffness, pain, actually hip and whole body was hurting more, especially for first few hrs upon awakening in morning, saw rheumy aug 2, blood work had not changed, never has shown inflammation markers much, told her what was happening, decide to have me stay at 10 for 3 months, still have same symptons as in june,, has anyone had to stay at that level for so long, that would be 5 months at least on 10 mg, no improvement just tolerating and managing , as day goes on, seem to have more mobility, really is bad some days if i have unknowningly slept on bad shoulder,

[PMRpro Ambassador]

If 10mg is the lowest dose that manages your symptoms - then that is the dose you may be at for some time. You aren't reducing relentlessly to zero - you are looking for that lowest dose. Then you aren't on too much or too little. It doesn't mean you won't get lower - just not yet.

[SheffieldJane]

Yes but 10 mgs is not doing the trick is it Arvine? You are still experiencing significant pain. I feel a bit out of my depth here not knowing your medical history and not being medically trained. In my head, a slightly higher dose that banishes the pain and therefore the inflammation might in the end enable you to reduce sooner. Might be worth initiating that conversation.

You are under extraordinary stress with the worry about your boy. In your place I wouldn't mind being propped up by Pred for 5 months.

Thinking about you.

[arvine in reply to SheffieldJane]

thank you sheffieldjane, my rheumy didn,t really want me to increase, and i don,t really either, she said take tylenol, which as all of us know doesnt really alleviate hurt and pain, she believes it,s the extra stress, i am functioning but at a very slow pace for most part, trying to still help out with other family, don,t get reasonably mobile til late in day, then very tired, i will hang in another week or so, maybe see her before my next scheduled appt, as i said, bloodwork shows nothing has gotten worse, and she is using that as guideline as well,

[HeronNS]

It sounds like you are under a great deal of stress. As both you and your doctor are unwilling to try a higher dose of pred, at least just yet, is there something else you could do to help alleviate the stress? There are probably some things you do which you could just let go for now, for example. And I know many have received a lot of help from various types of gentle physical activity or massage, etc. Take time for yourself, for something which really pleases you and makes you feel better.

[Hidden in reply to HeronNS]

hi...i have been at 13mg since April and some days that doesn't feel enough. those time usually relate to me really over doing it. I have been on mycophenolate for 8 weeks and will probably have to reduce. I.am try the dsns fans on my own part so when I see rheum in Sept a clearer picture of where symptoms are will be evident. With boat load of pain meds I am on for another condition should control breakthrough pain. that it usnt tells me pmr still actively kicking my butt despite markers lowering.

I agree that you should be kind to yourself. hope its get sorted to satisfaction.