PMR, prednisone

Hi Layne. If you read the above it is recommended to take whatever pred is required to give you a decent standard of living. PMR will not just go away so trying to live with less functionality is not going to work, you will just suffer even more each time you have a flare. The harsh reality is that if you have PMR only time will heal it (if at all) and no mind over matter thing is going to beat it, sorry. As regards preds not kicking in until the afternoon, those of us that tend to take them in the morning all suffer the same fate. Good luck anyway whatever you decide to do.

Thank you.  I reread, I missed the bottom of MrsO paragraph that describes... So sounds like most of us are 50-70% which feels better than the 100% in pain. 

Well I hope for all of us to heal soon and feel better and better!!! Blessing to all! 

Welcome Layne, I have had a couple of flare ups one being an overenthusiastic doctor trying to get me to reduce too fast. The pain before pred returns, I feel exhausted and also feel as if I am suffering from flu, in fact I feel like death! 

You say that the pred does not kick in until the afternoon have you tried taking it earlier? Which type are you taking? Is it a coated version? 

As tavidu says PMR is for the long term it usually lasts at least two years and often much much longer. The aim is to get down to a maintenance dose of pred where you are still comfortable. It then can burn itself out when you can stop taking pred, but the PMR is always hanging about in the body so can resurrect itself in the future. It does seem that getting off pred too quickly can exacerbate this, but that is not a scientific statement on my part and may be wrong.

 

Good to know...the words "maintenance dose"... I was beginning to think people were pain free on their Pred! Good to hear others experience, such as you said, tapering too quickly. I went up 1 mg today to see if any difference. 

Is the Pred coated? I don't know. I don't think so. I take 1mg x 8. All with my 3 egg whites as prescribed by doc. Usually before 8:00 a.m. I have to take my thyroid, Levothyroxin, on empty stomach 1 hour before breakfast. 

I was hoping I'd be one of those who didn't have PMR for long... Going on 7 months now.  Most pain in shoulders and hip area when I use those muscles.  My pain in two spots in my back are probably not related, old injuries, but they hurt all day unless I just don't do anything. Fortunately I guess, I lost my work career years ago (software engineer), so my husband brings home the bacon. bless him, but it allows me to stay home. 

I used to be the athletic, healthy one on my family!!!!

Thanks for your response and sharing! 

Hi layne, yes it's hard. I'd never heard of the condition and pre PMR always counted my good health as one of the best things in my life. Then to come down with PMR shocked me to the core especially as I was only 52 when diagnosed. Like you I was very sporty, tennis, Zumba, swimming, jogging, walking, horse riding, then to end up in a situation whereby I could hardly walk scared me witless. However, just over one and a half years on and I'm now down to 8mgs of prednisolone I know that things will get better.

this condition is long haul, 2 years minimum, approx 5 years normal and some of us may never get better, the auto immune condition never burns out.

have you ever heard of the Bristol PMR plan, look it up, it is the gold star treatment and we should all be receiving treatment in line with this plan, then at 10mgs follow Eileen's dead slow and almost stop tapering plan. I adopted this plan following a flare in December and I've got down to 8mgs, yippee! However, although I don't like taking preds, preds are the only drugs that can help us and I'd rather take the drug and have a life than to not take preds and as good as be disabled. I wish you all the best, christina 

Hi Layne, I was given the impression when first diagnosed with PMR that I could take pred and then carry on as I did before, ho ho ho. 

Sounds like your pred is not coated if you have 1mg tablets. What are the egg whites all about?

She said I can only eat meat (lean, ha, I love beef) and veggies and said 3 egg whites for breakfast and fruit.  Well, I'm severely reactive Hypoglycemic, so when on 20 mg of Pred I was so high I could easily eat fruit!!!! I was so excited!!! But now I can not. My blood sugar drops really low after I eat fruit. Bummer.  So, no flour, no rice, no grains, no beans, no dairy, no sugar.  Sometimes I eat fruit, but I just have to nap afterwards and make sure I don't need to be smart...ha.  Yeah, doctors just don't say much about it other than could take two years...I didn't believe that...ha... Til now. 

Layne, my goodness you are left with virtually nothing to eat. I am still not sure what the egg whites do! I know lots of the x-ray celebs live on egg whites and make omelettes out of them. Meat sounds a lot better. 

Hi Layne, Just to add a  thought. I don't know whether you're male or female or what age you are BUT, looking at your diet above, I have to ask - where is the calcium which your bones need esp. if you've been on high dose Pred. for an extended period? As it seems you can't eat 'dairy', you should talk with your GP about calcium tablets for bone protection. 

Good luck with the slow Pred. tapering and keep in touch. J

Hee, hee, egg whites since egg yokes are high in cholesterol and Pred not good for cholesterol. I do eat egg yoke at least once a week! Otherwise spinach and red bell pepper with my eggs, yum. And Pred.  

Oh yes, ugh, 1200 calcium, which I can't stand to take, and 5000 vit D, as it was low! Curcumin 1000-1500, not sure it does anything. Also, kale high in calcium. Spinach has protein.  I feel like a horse eating so many greens, 

and I'm a female, 54, with a typically guys name, ugh.  

also, doing light weight lifting with muscles that do work without pain, for bone strengthening. 

They have now discovered that egg yolks are not bad cholesterol any more they are now OK, after all those years of not eating eggs. In fact they are supposed to be a good food for PMR. 

Don't know where you doctor gets ideas from but it is now realised that the cholesterol in egg yolk is "good" cholesterol and helps reduce the "bad" cholesterol. And anyway, it is your liver that is producing the extra cholesterol - what you do in your diet is immaterial unless you were eating lard by the bucketful.

Weight lifting won't help bone density - it is bodyweight bearing that is important, enough to make the bone deform every so slightly. Cycling and swimming don't make any difference either - whereas stomping down the stais will.

That was my first mistake - I didn't know you should slow down -I have only read it on here. I only had 3 good days, overdid it, and it all went to custard.

I'm seriously immpressed !!  Take care, J

I bet to differ about weight lifting and bones, WebMd says:

Well heck, can't get link to paste...

...strength training over time can help prevent bone loss and build new bone...post menopausal saw increase in bone density in spine and hips on older women...

and  I've heard all my life weightlifting, weight bearing exercises, running, walking on hard service, resistance helps bones be strong.  Yes, swimming doesn't, darn it.  Probably cycling not unless maybe climbing serious hills???

 

Both swimming and light weight cycling are also recommended for PMR for flexibility in the shoulders and hips. Although weight bearing exercise is good for keeping the bones strong. 

If the weight lifting is heavy weights then yes, it will be enough to deform the bone and encourage bone formation. However - lifting heavy weights is really NOT a good idea if you have PMR. Cycling doesn't however steep the hills are - it doesn't deform the bone.