Pred

[Oldman-1]

Good Morning folks, the continuing saga of Polymyalgia in my case is a determination to get off the drugs by the end of the year. Whatever the original symptoms, it`s my intention to be as fit as possible without Pred. I`m down to 7mg now reducing by 1mg a month. There are some occassional twinges, but so beit, I will get off these drugs.

[DorsetLady PMRGCAuk volunteer]

Hi Oldman-1,

Your journey seems to have been a bit of a rollercoaster; and whilst most of us have a love/hate relationship with Pred, you seem to have a hate/hate relationship. Not sure that’s doing you any good overall, but if that’s your choice to get through PMR, and as you say - so be it.

Just remember you may be off the Pred by the end of the year through your own determination, but there’s no guarantee your PMR will be in remission by then! In fact it’s highly unlikely, unless you are one of the very lucky ones.

But I do wish you well.

[Oldman-1 in reply to DorsetLady]

Thanks pet. Every intention.

[PMRpro Ambassador]

Nothing much to add to DL comments - except to say that you may find the only choice is no pred and symptoms rather than pred and no symptoms. However determined you may be - in the end analysis PMR holds all the cards. No exceptions.

[ConventCassie in reply to PMRpro]

Operative words: “PMR holds all the cards”. Love this. Need to emphasise this more and maybe it will help acceptance. I was such a tough cookie on ‘prednisone’ I was so afraid of gaining weight years ago I had it put on my record I was “allergic”. My new best friend

[piglette]

As the others say, it really is not up to you what you want, but what the PMR decides. We are really pretty helpless in making the decision sadly. Also you could go through a lot of unnecessary pain when a small dose of pred would have made life so much better. 7mg or lower really does not have much affect regarding side effects and some people stay on that sort of dose for life.

[teesher]

Oldman-1, I have been where you are. However, we PMRers on here have all learned the hard lesson that slow is more, resistance is useless and pred is king. Take your time with pred. It really isn't the enemy.

[Rugger]

I got down to 4mg last summer, flared and had to go up again. Then I flared again at 5mg this Easter and had to go up again. Now I'm just starting to taper to 6.5mg.......

At one stage, I was sure I'd be off pred by the end of 2017 - my PMR had different ideas!

Click on my name and have a look at my graphs in my last post "Happy Birthday PMR!"

We will get off these drugs, hopefully, but maybe not when we decide.

[piglette in reply to Rugger]

PMR RULES.........!!

[Rugger in reply to piglette]

Absoloutely!

[Oldman-1]

I`ve been on Pred for some time now starting on 20mg, Down to 7mg now, I`ve got every intention of getting off them when I`m down to 1 mg.

[Rugger in reply to Oldman-1]

The $64,000 question is how long will it take you (us) to get to 1mg? The next step after 1mg could be 0.5mg, then zero.....

[DorsetLady PMRGCAuk volunteer in reply to Rugger]

That’s what I did (GCA) - and took my time about it too!

[HeronNS]

My initial reaction (after gratitude to the doctor who diagnosed me and gave me pred) was to do what I could to make myself healthier. It seemed to me then, and still does, that there was no point taking pred for some time (at the time I didn't know how long) and returning to the same body which had become ill in the first place. I had lived what I thought was a pretty healthy life anyway and never expected to come down with this hitherto unknown chronic ailment. Of course I could do better and have tried my best. But I still have PMR. I have, however, been below 5 mg, apart from a hiccup (hiccough) last summer, for well over two of the three+ years of this journey. All of us would like to be at pred zero, but I have to say 2 mg and feeling pretty good is not a bad alternative. I would take more if I needed it and believe I achieved 2 mg reliably by following a slow version of dead slow nearly stop taper method, plus, unlike some, I seem to have a very efficient uptake of pred. Your lowest best dose could turn out to be less, or possibly more, but that's what we aim for until PMR goes into true remission. Good luck!

[ConventCassie in reply to HeronNS]

You must be the one! (“The same old body which had become ill in the 1st place”.) I’m trying to remember who suggested “The

Pioppi Diet”. After I gave up the search for “what caused it” I moved on to how one can change the outlook. I do think there could be a connection in my case, but I’m convinced the “anti inflammatory diet” is a very important factor in any recovery and prevention of an autoimmune disease. I have read and reread and studied, analyzed and watched the documentaries associated with the Pioppi Diet. It’s quite an education. Simplified only by the no sugar law. So far I’m thinking the effect it has on my high blood pressure is well worth the sacrifices and effort.

[HeronNS in reply to ConventCassie]

I don't think I've ever heard of the Pioppi Diet unless it was in passing here. The only "weird" thing I've done is get low level light therapy to help reduce cytokine production and help me taper more successfully (never studied for PMR but showed positive results for ppl with RA). I'm thinking of going back to my magic physiotherapist and get treatment for my shoulders which seem to be suffering from some sort of injury, the exercises I have don't seem to be helping, .

[PMRpro Ambassador in reply to HeronNS]

I think it has been mentioned - I bought the book when it was 99p on Amazon. Malhotra is one of my heroes - and I did enjoy the book.

[ConventCassie in reply to PMRpro]

Hi! Yes he’s my ‘new best friend’ and lovely eye candy with all those videos. I sorta read it and was bewildered by all his recipes which I wouldn’t have time for in a million years. But I’m “studying” it now and actually READ it and am learning so much. I’m going to find my way with the foods he likes.

[ConventCassie in reply to HeronNS]

I just saw my doc for an annual. He said to just take something heavy (I’m currently using a 2 pound weight) and bend over, and make big circles (20 times) with it for the injured shoulder and reverse direction (20 times). I’m doing it 3 times a day. He said do it for like 3 weeks & it should get better. I’m trying it as I don’t have “time” to go to PT. Good luck.

[HeronNS in reply to ConventCassie]

I have exercises from my magic physiotherapist which took me some way towards recovery, but they aren't helping any more, I've stalled and regressed in some ways. I'm not in a condition where I could take something heavy, just using a one pound weight. Today I'm resting the injured limbs and hoping things don't freeze as that's been the worry all along, that I'll get frozen shoulder. It all started with pushing snow off the car a couple of winters ago. Then the past winter I used my "good" arm, and thereby hurt it as well. Sigh. I think if things aren't better in another month or so I'll call the physiotherapist and set up some sessions of light therapy. Well, sun is going down, time for evening walk....

[ConventCassie in reply to HeronNS]

I can’t pick up anything heavy either. I asked him about that when he was demonstrating. You don’t feel the weight because you’re not putting any weight on the shoulder. Since you’re bent over it just rotates the whatever in the shoulder. Not painful. Trust me. My injury is 6 years old from a fall. And my standard transmission is painful because it’s impossible to get my car into 1st gear! And-the only stroke I can do in the pool is the backstroke. I’m motivated for it to get better.

[Zofitmogelijk]

Understandable to want to be off PRED as soon as possible. But read my story. I also was eager to go to zero and my gp almost forced me to go quickly. Below 4 MG the pain, stiffness and fatigue returned but I choose to ignore it and tapered. IN February stopped taking PRED and it hurted. My gp said, it might be something else. So struggled until a few weeks ago and wanted PRED. So I take 5mg a day now (shedding some tears) but quess what, feeling much better now. So think twice before setting a goal, the pmr will do that.

[Oldman-1]

I don`t have a GP making the decsions in this respect, it`s a consultant and so far his direction has been spot on. I`m going with the flow...as the saying goes.