Possible Flare

[Sandy1947]

Did too much last weekend, ate food I don’t normally eat (night shades, Chinese, a little dessert). At 16mg Pred for 9th day and have some pains in neck, legs and arms. Took Pred 5:00 am not much relief at 8:00 am. Yesterday Rheumie said blood markers were normal after 4months and to stay on 16mg. I know better than to take this as gospel. At what point do I increase? How much? How long do I stay on higher dose? Too bad progress of PMR is not linear.

[Suedeshayes]

Hi Sandy, am so sorry to hear that you are struggling. I don’t think I have enough knowledge yet of medication increases, so won’t advise , but leave it to our more experienced people.

Just wanted you to know I’m thinking about you. Sue x

[Sandy1947]

Thanks. I am being a cry baby so I appreciate the thoughts.

[HeronNS]

I know you have a busy life and there are some things you have to do, but is it possible for you to take a "holiday" from some of your activities? I find even good stress (getting together with a friend for coffee) can be bad for PMR. Sad but there it is. It took a while but I'm getting better at getting a period of down time after every period of activity. Down time can be something active, like walking along our local trail, but not with someone I need to socialize with. Anyway, that's my personal opinion. I'm rather afraid of pred and will do what I can to avoid having to increase it. There may be some other kind thing you can do for yourself which will help. For example some people swear by Bowen therapy, although it doesn't work for everyone.

[nevagivup in reply to HeronNS]

Hi Sandy1947. You are so right HeronNS. I know exactly how you feel about socializing. I went along with it for 8 years, trying to live a normal life for the sake of my friends and my hubby, but for the last year I have been so low in energy and drive I just apologise and refuse. Because I simply cannot find the wherewithal to be jolly, engage in debates etc. So what if they think I am neurotic or whatever, I am putting me first, at last. By now my adrenals are not recovering and I'm waiting for a Synacthen test to confirm. If they are not capable of recovery it means a higher dose of Pred for life. I do believe that I may have recovered sooner, even thrown off PMR, had I listened to my body and not hidden what it was truly like all those years. I sacrificed my health. Take care of yourself Sandy1947, because only you know what you are feeling and experiencing.

[Sandy1947 in reply to nevagivup]

I appreciate the advise. Yup, do what’s best for you!

[HeronNS in reply to nevagivup]

I recently spent a day with friends in Toronto. Normally we'd have done something notable, like going to a museum or a play or something. Instead we went for a nice walk along a nearby trail, and spent most of the rest the time chatting and looking at old school memorabilia (we went to the same school and she has saved everything, currently downsizing 😆 ). It was relaxing for us both. I don't feel my short, rare visit to the big city was wasted at all, though at one time I would have to have done something, perhaps to prove I'd really been there!

[Sandy1947 in reply to HeronNS]

Bonding with friends is meaningful. Last weekend friend visited from Boston and Wisconsin. We had a late dinner in a noisy restaurant in NYC and I got to bed too late. The next day we walked about 8 miles in total...not all at one. Monday we went to a gallery, visited my grandchildren and had Chinese food (doesn’t go well with PMR)! Way too much activity!

Now I’m resting at my mother’s house waiting for the muscle soreness to subside I feel like this is a new kind of hangover. By the way, I don’t drink!

[Sandy1947]

Thanks for your input. I will rest and not participate in too much activity. I think I became cocky when I felt better. Payback is a b....!

[HeronNS in reply to Sandy1947]

Yep, we've all been there! It does get easier....

[Hidden]

Hi Sandy!

You are writing a chapter in my book! If you enjoy the good days too much there is always hell to pay the next. The only good thing is the good days are truly increasing as time goes on so I don't have to be a maniac, I can slow down and enjoy a bit. The other part is the food. There have been so many times over the past two years where I have deviated from my diet and -boom- down for the count. Don't know why, it just is. There were times I would increase one or two days only by 1 mg and it helped get over the rough spots.

Here in North Carolina it's 10 AM and I am still in my pajamas, thinking of going for a long walk, it's a beautiful day! The art of chilling on a "good day"!!!

Blessings-Karen

[Sandy1947 in reply to Hidden]

Thanks for your response. Thinking of you in your pj’s makes me feel better. Sometimes I feel like a slug when I rest. Pre PMR I was always being productive. Four months into this I’m learning but rather slowly the importance of rest.

[barbthy in reply to Hidden]

I too am in North Caroina - diagnosed with PMR since July - currently on 12 mg split dose and doing ok ( I think). Am recovering from auto accident end of August and have a fractured neck at C2 which shows minimal healing due to osteoporosis, prednisone and my age 81. Try to nap for an hour in the afternoon, it really helps and not doing much due to accident also have broken ribs and sternum and caring for husband with multiple fractures from same accident.

[Sandy1947 in reply to barbthy]

Oh my, you really have your hands full! An auto accident, PMR and wifey duties! My heart goes out to you. Hope you and your husband have a speedy recovery.

I was just in Charleston 2 weeks ago. It was wonderful.

[SheffieldJane]

Resting in this case is being productive!

There's learning for us all in this. Now that my darling grandsons are in Australia and I am not woven into the hands on childcare, I do feel physically better. Sad but better. 🙁

[DorsetLady PMRGCAuk volunteer]

Hi Sandy,

You’ve highlighted the problem - done too much! Give yourself a couple of days of good quality rest. If things don’t improve after that, try an extra mg, or two, until you feel better again. If it’s less than a week, then you can probably come back down to 16mg fairly easily.

[Sandy1947]

Thanks Doc! Resting at my mom’s. Not good at it but practicing!

[Suedeshayes in reply to Sandy1947]

How many mg are you on each day if you are coming down to 16?

X

[Sandy1947 in reply to Suedeshayes]

On 16mg now. How about you?

[PMRpro Ambassador]

As I have said elsewhere I think you are suffering DOMS (delayed onset muscle soreness) from overdoing things - and made worse by sinning on your diet!! I don't think it is necessarily a flare and increasing pred probably won't help as a result - it is the same sort of muscle pain anyone would develop if they tried to do far too much. PMR or not. You have to remember your muscles are being attacked by the autoimmune cause of PMR and they are intolerant of acute exercise. You have to do your bit in that respect.

healthunlocked.com/pmrgcauk......

[Sandy1947]

I appreciate your wisdom and experience. You are the Pro!

[Sandy1947 in reply to Sandy1947]

Feel so much better today! Thanks for alleviating my flare fear! Glad I didn’t decrease Pred! Rest is key.