Feeling upset

She did describe her diet, but I felt I needed more information about her condition when she started, how long the recover took, that kind of thing.  I mean, I'd love to be off prednisone and feeling well, even if it did mean having to drink a green smoothie every day and give up tea.

 

Thanks!  And yes, today I had a conversation with someone where I mentioned this thing about "looking well."  My friend has IBS and has to get regular infusions for that, and even she just chuckled and said, "Yes, you do look well." 

"I am not sure persuading my husband will be easy though"

I already cook 2 meals most nights, he is so restricted in what he will eat and most of it I can't eat - the thought of anything with more than 3 lines on the ingredients just turns me off - we go out for that sort of food!

And that from someone who until PMR would have described her main hobby as cooking and baking...

That's a relief. I used to enjoy cooking and baking but now I  find it more of a chore that has to be done! I have no idea how you manage to cook 2 meals most nights. I can summon up the motivation to make a choice of dishes (with difficulty) when I have people coming for a meal and that's only occasionally nowadays.

Solely by ignoring anything requiring effort or thought! Mercifully though the only vegetable he eats is chips (I know, don't go there!). I eat salad by the ton and roast veggies. Very good at doing fish in the oven in 10-15 mins (for me) while he has a burger or bacon or whatever. He had fish last night - Findus fish in sort of batter to oven bake is even available in Italy! The fish counter in our large Spar is superb - have never seen anything to come within miles of it in the UK, even on the coast, and we are nearly 4 hours drive from Venice with a lorry!

OH had cancer 21 years ago - lost a lot of his sense of taste or it altered due to chemo and now won't eat most of the things I used to cook beforehand. He also had great difficulty swallowing things like pasta and rice. He survived what should have been terminal for 21 years, who am I to argue about what he'll eat? 

That makes sense. Chemo does, sometimes, alter ones sense of taste and I have been told by many of the people with whom I worked that when undergoing chemo they had a metallic taste in their mouth which affected everything they ate and drank. I understand why your OH is eating something which he finds palatable. I could live off fish and veg. My grandmother was the same. I live with someone who enjoys fish but likes his meat! It must be wonderful to have such a great fish counter though I think it is improving in some areas of this country now.

 

I have no objection to someone saying "This helped me" and telling me about it. I have no objection to someone disagreeing with me as to whether something I found good for me worked for them. But don't get all "born again christian" about your option or mine. And if you have said "this is the way and all other is wrong" - be prepared to discuss it and explain it without getting huffy.

No Anhaga, pred is not a terrible mistake. It is the mainstream medicine management option - which for GCA is the only answer to avoid loss of vision. And the only proven way of managing severe PMR that is currently available. It works - diet doesn't reliably. And when diet does "work" after several months - there is no proof it was the diet that made it go away. PMR goes into remission spontaneously and there are other things that look like PMR but aren't and don't last as long. PMR responds to pred pdq!

I certainly share your second guessing about the decision to take Prednisone having ended up with AVN in both hip joints!! And my ortho doc wants me off it badly now for sure (as do I) What they don't get is that "a light narcotic" (his suggestion for tx) does not address the stiffness and pain. Remember how you couldn't move due to pain? I don't think we ever truly had a choice if quality of life was in the mix. But I am certainly going to gently push the time table as best I can. AVN also attacks shoulders, ankles, knees. Gawd.

Yes, Gail, I know what you mean about "gently pushing".  So far I've done well.  I am aware that things can turn around very quickly and think I'm alert enough to be able to head a flare off at the pass, so to speak.  I've gone from 15 to (nearly) 6 mg since intital diagnosis in early June '15 and think this is really good and I am happy about the progress.  The thing is, I've also done everything else I can think of (short of a complete "anti-inflammatory" diet as promoted by the evangelists) to change my lifestyle and reduce factors that might be contributing to inflammation.  I figure the lower the maintenance dose of pred obviously the better, but I'm quite reconciled to being on a low maintenance dose for the duration.  I hope there hasn't been any sign of AVN in your other joints?  

There is not really any way to detect AVN until it is at a dire point. I'm told. MRI might show it but often doesn't. I have no pain in other joints.

 saw rheumatologist today. (first time since AVN dx and my surgeries)

He believes Pred did cause my AVN (just bad luck) and endorsed my plan to continue to reduce. He agreed there's no way to know if the PMR is gone in any other way. He suggests a fairly rapid clip, down .5mg  every 2 wks with a close eye on symptoms. I may or may not go quite that rapidly but I am going down. Fingers crossed. Here I go!!!!

You can do it!  Find out about all the anti-inflammatory foods you can, and give yourself the best chance you can!  

I think if you go at that sort of pace you won't know because you will almost certainly develop steroid withdrawal rheumatism - which can be so similar to PMR you don't know which it is. It often takes a couple of weeks for the symptoms that to resolve, for some people even longer, so you risk not knowing at what dose the PMR symptoms return.

I do realise why you want and need to reduce the dose but there has to be a happy medium.

Thanks, Eileen. I appreciate your thoughts. Dr. specifically said he didn't think I would experience steroid withdrawal. But if he said why he thought that I missed the reason.

I was at 4.0 Nov 30, date of my first surgery. Dropped to 3.5 after that and stuck there till Jan 20 (2nd surgery) when I tapered to 3.0.

How soon would you try 2.5?

I am terrified to go too fast and set "something" in motion but also terrified to develop AVN in some other joints since it was pretty damn unlikely ("rotten luck") to develop it in the first place.

Another person where MBChB comes fitted with a crystal ball! They're all over the place!

There's no reason at all not to start trying to reduce asap if you are feeling well - but I wouldn't go at 0.5mg every 2 weeks at this stage - not just because of the withdrawal aspect but also to allow your adrenal set-up to keep up as it has to get its act together too. I'm OK at 4mg but half way to 3mg using the dead slow and nearly stop approach I am so tired it isn't true! 

On the other hand - if you drop the 0.5mg and DON'T have any immediate pain you probably aren't getting steroid withdrawal problems. My reservation then is that if you drop again so soon then you can't see if the PMR is flaring up at that dose.

Obviously I'm not going to say it's unlikely you'll develop AVN at these low doses - never say never - but the risk must be a lot lower now surely?

 

Yes, one would hope the risk would be nil. But my risk was never high. I never took over 10 mg. They wanted to start me at 15mg when I was dx'ed and I asked if we might try 10 first and it knocked it right out. Gradual taper over 2 years to now. Dr. said it's folks like me that keep them humble. i.e. remind them that bad things can happen on this drug. So glad to serve..... (deeply sardonic tone)

I am still on (1) 7.5 Norco post op about every 6 hours. Sometimes 8. That wouldn't mask PMR sx would it?

Don't think it usually would - though I seem to remember someone somewhere used something similar because she wouldn't/couldn't use pred. 

You have a doctor who admits a bit of humility comes in handy? Hang on to him!

Yes, it always makes it feel better when they've made a mess and you serve as the educator    Like me when I was given the wrong abx to go with Medrol and spent 9 months on crutches. Which I was doing fine on until someone insisted I needed a statin - 7 days of that at half dose almost had me in a wheelchair...

 indeed!

and I agree with you. I really do not fault my doctor at all but that doesn't make the path forward any clearer.....courage!! Onward!!

Exactly.  Visualize yourself as strong.