Emotionally on a roller coaster

Hear, hear freda07782, well said!

I would give it more than just a week or two - there is a lot to be said for 3 or 4 weeks at a new dose at these low levels and a lot of people wouldn't reduce more than 1mg at a time, a lot cut to 1/2mg at this stage.

Sounds like a plan. Thanks again for all the help and support.

Lindalee77, I would try 1/2 mg, I was at 7 mg reducing by 1 mg a month when I had my flare up. Next time I will reduce by 1/2 per month, under 10 mg. Hope that, that will work. Keep a log! Good luck

Yep .5 sounds good. Thanks.

Thank you it helps to know that others have felt the same.

Lindalee77, yes I was depressed when I did not know that I had PMR and then after my replase. I had been doing so good. Now, looking forward again looking to get back on my bike. Think positive and keep smiling.

I certainly hope so - that it too shall pass. I am in the midst of a weird emotional cycle at the mo - different to the ordinary stuff .I was trying to get down to 8, failed, went up again, but my 'different' emotional state has not improved ....yet.

Good luck to you. This is certainly a weird disease with many faces.

Hi, Flutterie57, I had to think how to tell you a bit of my story. My wife and I sold our house and purchase another smaller house near house our disabled daughter had bought, she had with us for seven years. She thought she would like to live alone again. So we figured be fun to do another house, before we had contactor's licenses in another state. We were staying in a friend's house. I came down with a intestinal virus, we moved into a motel. I was so sick I could go down for breakfast, my would bring it up and get lunch and dinner in the grocery store. This went 10 or 12 days. I started to feel better, roded the elevator up and down, first time always walked up and down.

But I was getting better, then it happened, could not walk. Had an appointment with my doctor, I am diabetic, told her, she didn't make much of it. Three months later, my wife is working on the house, hiring people to do things I would normally do. I was a total mess, depressed could not put my shirt on, could not walk, she would help me and if I sat on the tolet could not get up. A total mess end of August, back to doctor, I am now on a cane, my wife has to help me in and out of the car. Tell the doctor my story, she said let me get back to you. Called the next morning that she think I have PMR. Go for a blood test, prescription waiting at drug store, start after blood test, next appointment in 2 weeks. A miracle, with in a week walking, no cane back working on the house. Depressed, I thought I was dieing! Yes, I was depressed, very depressed, I just was sinking lower and lower, my wife or almost 40 years, had never seen me not be positive. I got down to 7 mg, had to go to 30 to get relief, is the Phredsone raising hell with my body, YES. Can I take it piece of cake. Depressed, NO, I am going to beat this just like I have done all my life. Hang in there, think positive, put a smile on your face. You can make it!y story, love our little house, spent the winter working as a ski instructor and will again next year. SMILING!

Ski instructor - wow ! Good on you. Thank you for your story. I think my expectations that I would be over this in about 2 years, were maybe too high so I have crashed badly(physically and emotionally) this time. I have always known I would bounce back in the past, but this time it seems a little out of my control. Husband (of 40years) and I had  bought a lifestyle block - 10 acres, with magnificent sea views. We were so excited like kids and within months I crashed like you. I can't keep up and we are both reluctant to give it up. I know I will get my head around it eventually with help from people who understand exactly what I are dealing with, like yourself. Maybe I should go back up a little higher too, but the fear of what the drug might be doing to me,was holding me back. Eileen has answered me on another topic and realistically I maybe should not be so afraid of taking the drug long term. I have just been reminded that life was not much fun without enough of it. Thank you so much for your story. Sometimes I just need to talk to people who 'understand"

Flutterie57, I am glad that I was able to help. We are all on this road together, learning as we go EileenH has been a great help, wealth of knowledge. Last evening I watched 60 minutes, there was a segment, The Prosecutor from the Nuerneberg Trails, probably didn't spell correctly, he said "It? takes courage not to be discourged" a good idea to remember!

Put Smile on face, move on!

Flutterbie and Michdonn, your stories are very interesting.  I have a related sort of story in that we were planning to have an addition built onto our house for us to move into and age in place whilst daughter took over main house.  Long story short, cascade of stresses and my undiagnosed PMR put a stop to that and daughter moved out of province to a much better job.  I still look at our house and know that I can't really look after it, small though it is, and I had looked forward to a more accessible, functional living space.  But the plus side of this has been enforced introspection - in a positive, not a navel-gazing way.  What is this life all about, really?   The questions I asked myself in my childhood and youth about why are we here.  What is really going on in the universe.  Who am I.    Time for that now.   And really, what is my purpose here?  Maybe it is just to walk along the trail and observe the goldfinches, or be delighted when I see my first Nova Scotian cardinal.  Maybe that is what life is about.  This is the day the lord has made, let us rejoice and be glad.

When you did need to go back up from 7mg, how did you decide to go up to 30?  Was it by Dr's advice or did you experiment yourself ? I do the very slow drop, but have not read anything about what you should do when you have a flare up. My Dr lets me muddle along by myself. I have gone back up by 1mg, but I know it is not enough.

That is a timely reminder for me. I love that sentence 'walk along the trail and observe the goldfinches'. That is the mindset I adopted 2 years ago -' I will just take 2 years out to admire the view and smell the daisies.'  I (and Drs) just should not have put a time  frame on it . Thankyou for your story. I am back on track.

 

Anhaga, believe me I have had a charmed life, wild high and low, low. But would not change my life for anything, each thing has seemed to help me in some other way. I do not know how this experience is going to open another door. But I am planning a new workout​ routine for when I can start. Got to get back on my bike.

Keep smiling!

Flutterie57, my flare started in early May. I was on 7mg at the time and had been doing well. About half to 6 mg dropping 1 mg a month at that point. I was thinking I was reducing too slow, I just wanted off. Then it hit, jump up to 10 mg, no help, then 15, then 20, no help. My wife rolled me a wheelchair to my doctor's appointment. She then put me on 30 mg, hoping to come down to 27 1/2 this Saturday. I will be asking questions on pain levels before reducing to see what everyone thinks. Keep smiling Flutterie57.

That is so scary. I am at 6.5 and the perd pushed me from pre diabetic to diabetic along with raising my blood pressure. I also want off but I am at present just being thankful for what I have.

Lindalee77, I been that known a diabetic since 1962 when I came out of the service. On one of the other forums several hours ago I commented on eating too much fruit. I was making the comment to EileenH. If you don't find it or have questions, contact me on this forum, and I will comment back. I changed my hold diet and my readings were the lowest, could not, still don't, till I jacked up the Phedinsone. I will be active tomorrow

Life is Good, want to be better, life style changes have to be made, but you can do it.

I like your attitude Anhaga - in the end life IS each day -  and one of the most meaningful parts is just 'being' in nature if you can get to do that. Whatever we struggle with - health well-being anything that challenges us   - ultimately making the best of what we do have is the 'best' any of us can ever do ... and 'observing goldfinches' sounds quite perfect to me - there IS I think real 'meaning' in that.

Best wishes

Rimmy

"have not read anything about what you should do when you have a flare up"

One basic suggestion is to add 5 mg to the dose where the flare occurred, get things back to normal quickly and go back also fairly quickly to the dose ABOVE where the flare happened - but that really only works where the flare was due to reducing too far or too fast. If it is a a flare of the activity of the underlying autoimmune disorder then you may well have to go back to the beginning because you have no way of knowing what dose you will need for this episode. Where patients have had real relapses after a few years off pred altogether they have almost all said they were different in character - in dose needed and patient journey. I have had a few such flares and mostly needed to start over - though the reduction afterwards has varied funnily enough.

"What life is this if, full of care, we have no time to stand and stare..."

You could be run over by a bus/truck tomorrow - and reading the reports it often seems to be seniors with impaired mobility who are caught on corners or pedestrian crossings. The pred helps the mobility problems - not to mention all the other bits. Jam today is my motto, I'll be a long time dead.

A colleague of my husband's who was a rabid antismoker was once told that "you have to admit - in the end all that will happen is you may die healthier than me!". 

Cutting dietary carbs drastically not only helps with weight problems when on pred but also helps with the potential to develop pred-induced diabetes. It will also help with type 2 diabetes - because what is the point of eating carbs just to require medication to keep the BS level down? Don't eat them in the first place and that need is reduced. Contrary to popular belief - you don't need carbs, they are not essential at all once your body adjusts, but we certainly do not need the quantities the normal western diet includes these days - above all, not the added sugar. And fruit - as Michdonn refers to, is sugar, whether it is good or bad.

Thanks Eileen. I will try 5.. I did not want to overdo it. I am not as bad as Michdonn, but going back 1 has not helped.  I can't concentrate, because the pain level is just a little too high. It is like the snakes and ladders of life.

Great metaphor!

Oddly I have lost close to 15 pounds since this all started. I have cut back on carbs

A

Nd I am better for having done that. I am hopeful that in about a month when they repeat my a1c I can get off the metformin. We will see. I will not be devastated if that doesn't happen but I would prefer it.

Lindalee77, getting off metformin great, I am so happy for you. I really do not remember when I was not on an oral drug. I don't was I on oral first or did I get my test kit first. I do know at first I would carry something? all time, because my glucose levels would drop. Metformin has been a great improvement. Good luck?

I want the pain to stop, it is worse than the side effects of the Predinisone, ready to jump out my skin most of the time. Today doctor's screwed up my prescription and then tried to tell I was wrong. It was not nice, but the doctor called back in less than 1/2 hour. And I did get my meds. The Predinisone makes the diabetic neuropathy go crazy. Has it affected anyone else neuropathy?

Has it not stopped even though you have gone up to 30? I am not diabetic, but my proximal neuropathy is fairly intense.

Hi Flutterie57, the pain is much better, my wife had to roll me into Medical Center in a wheelchair before the Phed was increased to 30 mg, I think we wait to long to 30 mg. Today I am still in pain, but able to walk slowly without using my cane. Carried my cane, but did not use it.

The Pred has definitely has had adverse affect on my neuropathy, when on 7 mg the neuropathy was much else, can not wait to get off may rushed, don't know.