Moon face question

If you already have symptoms back the last thing you need is to reduce the dose! You don't take pred for a short while and taper off, you look for the lowest dose that manages the symptoms.

I had 5 years of PMR without pred - I gained weight, I could barely move and was permanently in pain. I didn't go out except in the car because I couldn't - and when I did go out in the car, if I couldn't park within about 50 yards of where I was going, I couldn't get there. I often turned round and went home. Using a walking stick didn't help - because my hands hurt too much to hold it. It wasn't until I started taking pred that I realised how restricted my life had become, I couldn't use stairs - even at home I crawled up on hands and knees and stomped down one step at a time like a toddler, holding on to the handrail for dear llife as I was so scared of falling.

Putting on weight was the least of my problems.

I do NOT need a lecture my question was a genuine remark and my symptoms have never gone away,never got any better and since I have been on preds since last June I have never felt so ill,as well all the blurred vision,suffer breathless a lot of ails I never suffered before ,sorry to have bothered you !!!! 

Beg your pardon I'm sure - I was merely telling you what happened to me. But if the symptoms haven't changed at all with pred - you very likely don't have PMR.

I agree with you.  Prednisone can actully be a way of diagnosing as it generally relieves symptoms almost immediately.  If there is no relief at all, it would seem a bti out of order to continue taking it.  You were being very helpful, not lecturing at all.  :-)

It isn't 100% - they've changed their minds again! You may get relief with pred even with other things. But if someone DOESN'T get significant relief with a moderate dose - it is far more likely to be one of the other causes. 

Maureen, when you first started on pred did you get that magical improvement in symptoms? You may not be completely pain free but at least you can start to live your life again. If not as others say you may not have PMR or the dose was too low. Also if you are having eye trouble have you thought it may be GCA. 

Maureen, another side effect of prednisone is a "short fuse." I value this site so much because it is the one place I can share whatever is going on with me and PMR with knowledgeable peers. Sometimes I get helpful advice, other times I witness someone else's truth-telling. Take it or leave it, sharing our experience, strength and hope is not a "lecture."  And, I must agree, if you have had no relief since June, either you are not on enough prednisone, or something else is going on. Best wishes to you, and I hope you'll keep us informed of your progress.

Everything you have described above how you felt, is how I am feeling right now, even to the point of coming down stairs like a toddler..... so much pain,  feel so low with it all...all because the rheumie told me to lower very fast in 5 weeks.....wouldn`t wish this on anyone...(well the odd one?) so hope to get anwers next week, but your advice in the past has been invaluable, so you can "lecture" me any day....Thank you.....

I wonder what the rheumy will say next week - if that description above is the clinical picture in PMR, and I'm pretty sure there are plenty of doctors and patients who'd say yes, it will be interesting to hear what he thinks. Especially since a lowish dose of pred managed it before.

Hello Maureen, I too agree with susan29426 below. We have all been there and know the frustration this pmr can cause. Hang on in as personally I have found this forum a life saver.  

The factual level of content is reassuring and helpful, it is easy to be misled on the internet, but here you will find sound advice from people who are experiencing the same as you. Goodluck

I know my moon face and weight gain should be the least of my concerns.  My GCA has been under control on 14 mg a day and I plan to reduce to 13 next week.  Not being in pain and having the ability to function is/are much more important than what I (we) look like.  I get it, bu I'm just looking forward to being "me" again in the mirror.  Wrinkles and all

I banned mirrors - and dreaded going to the hairdresser! Where at least I have to take off my glasses so can't see a lot.

And my wrinkles are appearing  - don't think I had any pre-pred anyway...

Ooooooh nooooo do you mean Prednisone causes wrinkles tooooo !!!!

No - it fills them in   . Take pred - no wrinkles! Cheaper than botox.

It's because of the weight gain around your face really. Take away pred, lose weight - back come the wrinkles.    I've been on pred a LONG time - I was young enough not to have any then...

Lol ok... well The wrinkles around my nose are going way you were right but my cheeks are so big now but I do seem to have wrinkles under my eyes must be just my age ha ha

Is it fluid making your eyes puffy? That doesn't seem to fill the wrinkles - it makes bags. 

Didn't ever intend being a bag lady... 

Ha ha bag lady ... I can laugh but mostly I'm sad, I really hate these bags under my eyes .. it's bad enough that I work graveyard shift and I never get enough sleep but now I have to look like it too!! What can I do to stop the fluid ?

Honestly don't know - I wish I did 

Ok thank you Eileen 😊

I don't know either but I've read that drinking plenty of water actually helps with ridding body of extra fluid retained because of steroids.  That sounds so counterintuitive, but....

Eileen your comments please,my gp had told me that she wants me off the steroids later this year is this because I am 80 ,I appreciate your knowledge 

 

It all depends whether the pred is actually helping you feel better.

But there is absolutely no justification saying you need to stop taking pred just because of your age. If it helps - why stop it?

I know two ladies who were/are on pred at over 80, one is over 90. It still gives her a better quality of life - which is what it is all about. Every time a GP says she needs to reduce her 5mg dose - she has increasing pain and even more disability and is miserable. 

I'm in my mid-60s, if I were to be told I needed to take pred for the rest of my life I wouldn't be at all bothered. And I certainly wouldn't accept a blanket "You need to stop pred" without some VERY good reasoning. I keep trying to reduce the dose and when it works, I reduce. But I am not prepared to lose my quality of life for a GP's (or any other doctor's) principle.

Of course - she may be one of the many who believe that if the problems have lasted more than a couple of years it can't be PMR. Which is baloney - PMR lasts as long as it takes to go away.

I was diagnosed with PMR in August 2016, misdiagnosed for 2 years prior. Everything I have read about the subject points to being on prednisone for years. I have gained 12 lbs, gotten a moon face, thick neck and an assortment of other problems including osteopenia. I worry about what is waiting down the road. My rheumatogist is weaning me off the prednisone. From 15 to 7.5 now. Since coming down from 10 I am beginning to become symptomatic again. Feet, knees, right hip are acting up. What a battle!

For your rheumy to be weaning you below this dose after just 6 months is particularly silly if you are now developing symptoms again - does he WANT you to develop a full-blown flare? If they won't be reasonable - I would seek another doctor who will listen and react. You are in the US - which I assume means that your PCP is unwilling to manage your care and I do know the problems so many US patients face.

You can help reduce the weight gain, and for many of us that also meant losing the moonface and fat neck and the midriff bulge, by cutting carbs drastically. Including fruit.

The osteopenia may NOT be due to the pred. I had my first dexascan shortly after starting pred - it showed osteopenia, but that is normal at our age and doesn't require aggressive treatment. I have taken calcium and vit D for the last 7+ years on pred, my bone density is almost unchanged, the readings are still perfectly acceptable for my age and I am not alone in that.

Thank you Anhaga ... I will definitely up the amount I'm drinking .. hope it works .. I work graveyards and I drink water all night long for eight hours and then I go to sleep but I keep water by my bed not sure how much more I can drink... lol

Are your electrolyes okay?  Sounds like you get plenty of water, but sometimes we avoid salt a little too much.  Maybe a dietitian could advise?

I was just thinking of that .. I'm gonna ask my Dr .. also I'll go by drinks with electrolytes.. very good idea .. thank you !!!