1/2 mg decrease!

I quartered my 5 mg to 1.25, halved the 1mg to 0.5mg and have meanwhile several labeled boxes for patching up my dream dose.

Gone even higher - 4mg - it's where I felt best.  Will stick at that for a couple of weeks.

Please listen to your body! 🙂

Constance - why do you want to get lower? I'd accept 4mg with delight 

How did you do 3.5mg since you are on Lodotra?

What side effects at 4 mg? If any? Does a low dose still affect your bones?

Thanks again ☺

Michdonn, the side effects I got were increased ocular pressure - not glaucoma but enough that I needed to see my eye doctor more often for a while.  Increased blood sugar, dealt with through diet.  Possibly bone thinning but I may have been a bit vulnerable already owing to events in previous couple of years.  The ocular pressure diminished by the time I was on 7 mg and I now will see my eye doctor annually instead of every two years as in the past.  The blood sugar normalized similarly, and I've maintained the dietary changes to a large extent.  And I've improved my bone density from a t-score of -2 to -1.6 (no meds) although for over half the year between the two scans my pred dose was over 5 mg.  I have read that the potential effects on bones last as low as 2 mg, possibly even lower.  I think it's because pred does something to the bone building cells.  However I and many others have shown that the bad effect can be wiped out by careful attention to bone healthy strategies - diet, supplements, exercise.  The worst effects on bones occur in the first three months, and I didn't have my first DXA scan until I'd been on pred for about four months.

For me the worst effect has been tiredness and weakness.  I think these are pred side effects, kind of in a roundabout way, because my adrenals have been a bit slow getting up to speed.  I know they can, but it's taking a long time to get back to normal.  Some people clain PMR gave them fatigue but I honestly can say I didn't notice unusual fatigue until my pred dose was down to about 7 mg.   

When the PMR hit we were just rehabbing the house we just bought. I was in trouble, could hardly move, could not put my shirt on, do the buttons or get off the toilet. A walk to the car and I was dead tired. 2 - 3 months later, 20 mg Phred and started to feel better, not normal, but good. I still don't have the endurance I once had, but working on it, with a smile on my face! 🙂

I still have the dream of being pred free.  Ever the optimist!  However, my gut tells me I will be on 4mg for life.

Lodotra 2 + 1 + 1/2 of pred.

Below the threshold that is called the physiological dose - the equivalent amount of pred to the amount of cortisol the body produces naturally and which is essential to life - the side effects are minimal. That is about 8mg - it may be a bit higher depending on the amount of pred the patient absorbs - and side effects are due to EXCESS corticosteroid. By the time you are at 4mg you are well below the physiological dose and your adrenal glands need to top up provision. As long as there is more than is required the body knows that - the same as your heating boiler switches off when the temperature in the house is high enough.

A study purported to show there was still an effect on bones at 5mg - but since half of the population is going to develop loss of bone density anyway, even without being on pred, and approximately half of people on pred develop osteoporosis it is a moot point whether you can lay all the blame at the door of steroids. I and several other people on the forums know our bone density did not change significantly while on pred - despite never taking alendronic acid and in some cases not taking calcium and vit D either. I have only had PMR level doses but for over 7 years - some of the others had GCA and were on pred at some level for about 5 years. 

What is pretty likely is that 4mg a day over a long period is less damaging in all senses than going to an unnecessarily high dose for whatever reason.

Michdonn:  When PMR hit:  I had just recovered from a broken leg, which had led to cancelling a dream trip of a lifetime and losing most of our money (a lot) because we didn't have the insurance we thought we did.  We were planning to build an extension to our house which would be an accessible home for us while our daughter took over main house.  I was heading into retirement.  While I remained undiagnosed and slowly becoming more disabled, we had a winter from hell which had me virtually housebound, plus I was feeling the social isolation of being newly retired.  It was horrible and I wanted to die. We cancelled the house as the final estimate for the build was something like 70% more than the initial ballpark figure (and my daughter moved to another province and better work) but by then my backyard and garden had been completely destroyed to install better drainage.  In the spring my gp, a yound woman who'd taken over from my old doctor who'd retired, literally, 9 days before I broke my leg, and had only prescribed celebrex (I didn't take) left the practice and I had no doctor.  Was told at the clinic that they weren't taking "new" patients, never mind we'd been going there since the 70s.  But I had a meltdown at the duty doctor's desk where they were trying to send me to a walk in clinic, and I was seen.  By a doctor who diagnosed me quickly and has treated my PMR in an exemplary fashion, although doesn't want to hear about any other complains or concerns I have.  I have become overwhelmed by the house I live in.  Hubby and I are both clutterbugs  although I did a major downsize of my things when I thought we'd be moving, PMR really stopped me from being able to keep on top of things.  There is so much that needs doing, like painting shappy walls, getting windows repaired, that kind of thing.  I can barely manage to do the necessary things, whatever keeps the dwelling sanitary enough to live in healthily!

i want an edit button 

Why? Anything in particular? The moderator will delete things if you ask.

Oh just careless tying.  I typed yound instead of young, and shappy instead of shabby.   And missed when quickly proofreading.  Maybe we need one of those systems which highlights words which might be misspelled.  I think healthunlocked does that?

Ha ha yes. Empathise. Can't believe - for a former daily newspaper sub-editor - how many mistakes I make. Even Facebook has an edit option. 

To think you couldn't get medical help because you didn't have insurance in humane! At my age (almost 75) I decided that enjoying life was paramount. Grand hopes - then came GCA!! Plan was to cut the chores. I have a landscaper who mows the lawn once a month and - best of all - my 12 yr-old grandchild vacuums my house once a fortnight. My friends laughed at my use of 'child labour' but it came about when I heard she had been turfed out of her father's (my son) house and banished back to her mother's (they have joint custody of the three kids) after throwing a tantrum when he refused to give her more money for a dress. So, I suggested that she does the vacuuming and I will pay her. Son said amount was very generous (which equated to $NZ40 per hour!) but I pointed out it was also a way to supplement her pocket money. Every one happy! Now I wish the boys (9 and 11) will grow up fast. I have them lined up to paint shabby walls too. 

Done it again! 'is inhumane'. Eileen is right. Not just sloppy typing, sloppy in concentration.

Well explained. Thanks. 

Oh it wasn't that I didn't have insurance.  We have universal health care here.  I just couldn't get a family doctor.  About 10% of our province is now without a family doctor, due to mismanagement by our political overseers.  That's about 90,000 people.  They revert to emergency and drop in clinics, neither of which are appropriate for the management of a chronic or long lasting condition, nor, I suggest, for the treatment of any vulnerable demographic - in short, hardly anyone.  In a way PMR got me a doctor, and also my husband as she agreed to add him as well.  This is certainly a change from a few years ago when one could shop around for a compatible gp and we all hope things will improve soon.  At least one can now get on a list of people waiting for a family doctor

We thought we had insurance for the trip through our credit card.  Always read the fine print.  The coverage would have been adequate for a trip across the Pond but it didn't go anywhere near covering a cruise of part of Australia and New Zealand.  What really irked me was the cruise ship company would not allow us to rebook because I broke my leg less than a month before we were to leave....  We were willing to pay a penalty, etc., but, no, we would have had to pay the full amount again.  So much for that.  And it was the first time I hadn't bought separate cancellation insurance because I was assured by hubby that the credit card covered it....  

That is terrible Anhaga, you are a strong person to stand up under all that. But you are still in the battle and that is what counts. Hang in there LADY, there has to be a up side!

I cheat....by coping my post into MS word, spellcheck it and then paste it back in here. I still make some errors

quite a story Anhaga! Remember, what does not kill you makes you stronger... and you strike me as a though lady

Excuse my french but . . . effin' b******s! How many times do you have to have cancellation insurance? Did you get to New Zealand? I live in Auckland.

Here used to as well - and in one of the revamps it disappeared. Last time there was some talk of bring it back - but I suspect the techies don't see it as important. Whereas awarding stupid points is...

And believe me - it's better so than having another revamp!

It's the total amount - when we are intending taking an "out of Europe" trip we take out an annual insurance coveruing us both which comes as standard with something like 6,000 euros total cancellation cover. Our last trip included about 9,000 euros booked items with tour and cruise and multiple flights - so we had to take out insurance for the other 3,000 euros. I had no intention of cancelling - but you never know!

No, we didn't get to NZ.  We had a week there years ago.  My husband went to a conference and I wouldn't let him go without me so we cashed in air miles and I had one of the best vacations ever!  We always wanted to go back and see more of the country but I doubt that it will happen now.  

Sandy, cancellation insurance every time you book a trip.  How else would you do it?  

Nick, this is all water long under the bridge. Over three years ago, don't think of it now.  What I do remember is the day I was on Healthunlocked and I wrote out a post which included all the stressful events I could think of over the previous few years, surrounding PMR.  It came to sixteen things, not counting something which had happened that day.  Instead of posting the account I deleted it, and somehow that helped me let go of it all, an unintended, welcome consequence.  I doubt I could think of all sixteen things any more if I wanted to try.  

See my reply to Nick.  I merely gave my account as a matter of interest, as we discuss what causes PMR!

It's a very long time since I travelled any distance. Still got rellies in Britain but the main mob is in Australia. 

Anhaga, I guess that stress could bring on PMR, but in my case I do believe it was brought on by my system being overwhelmed with another virus. Just too much! Still having my dulse each day, day 90 for the diet and my wife has not had a migraine in 87 days. I do not know if the diet is doing anything for the PMR, but we are on it indefinitely, no Migraines!!!

Keep smiling and moving forward! 🙂

I know migraine can be triggered by certain foods so it looks like she's eliminated the culprit.  Well done!

Except for my husband and children all my relatives are in UK and Europe.  A retirement gift to myself was a short visit with cousins.  Oddly enough I felt quite well while I was there, this is pre-diagnosis, but when I got home and back to my stressful situation everything came falling back down on me.  

Anhaga, she has been a stained glass artist, we think the heavy metals cleanse and good food has done the trick. Now if what I am doing knocks down the virus, we will be golden. My PMR is in check, no PMR pain and working out hard. With a smile on my face! 🙂

Mine are widespread. Political manipulations in post-1940s, after the Brits gave up colonial rule in Ceylon, saw the emergence of (selective) nationalism which disenfranchised minority groups. We were fortunate, we could migrate to Canada, Britain and Australia. 

 

That's interesting, Sandy.  Have you kept in touch?  My father's family (Polish) was pretty well wiped out during WW2.  Other than occasionally receiving word about a distant cousin or so, I am the remnant.  Both mother and stepmother were British, and there are relatives all over the British Isles.  But it's interesting to see how quickly families can disperse and lose all connections.  My husband has cousins in Newfoundland but only keeps in touch with one, and I think it's because she sends us a Christmas card every year.  And being met at a train station in town near Glasgow by a teenaged first cousin once removed, as we we walked to their home she asked me what kind of relative I was.  She didn't know that her father was my first cousin and that I had lived with his family for a few years as a small child.  He hadn't ever thought to mention it.  I suppose being the isolated individual in Canada it's been more important to me to try to retain connections than it is to them; they all have had each other all their lives, and plenty of extended family within easy visiting distance.

We have saying in my country loosly translated..."distant from the eyes, distant from the heart".  I am also one that "escaped", and slowly loosing contacts with family and friends.  If it was not for internet, emails, skype and other applications, I think all contacts would have been lost.

Eight years ago I left Rhode Island moved to New Mexico, I told my family that I would not be returning they did not believe me as I had travelled all over the world. I told them I was tired of traveling and NM was where I was staying. I now they are starting to believe me.

Love it here, keep smiling on my face.

Our community was known as the Dutch Burghers of Ceylon. During the British occupation, in typical colonial disregard, descendents from the Portuguese occupation were lumped together with the Dutch descendents. Ha ha. The (proud and prejudiced) Dutch colonials weren't happy. Not happy at all. So, they formed the DBs of Ceylon. They spoke Dutch, but the British told them to assimilate, speak English or else - go back to the Netherlands or wherever. Many left. Ours is a 900-family gene pool. Lots of intermarriage, very little integration . . . it's no wonder we are known as having a healthy streak of lunacy in us. In the final assimilation demand, post-British, English was removed as first language and Sinhalese was installed first language, taught in schools, used in commerce. Now that was sheer lunacy. It's a language not spoken in any other country in the world. The writing was on the wall - we had to leave. Many passed the rigours of the Australian White Only policy - where we had to prove six generations European and also LOOK white! It broke many families apart. I migrated to Australia during that time. 

The ship I came over had many migrant Polish families. Their stories were horrific!

When my IT son told me about the new thing called emails I just couldn't believe it was possible. How things have advanced since then. Talk with family on Skype, on Facebook, got a Flickr photostream that gave me a new set of like-minded friends around the world.

I remember the first computer (at work), everything was saved to audio discs! Then one day, my boss dumped a Mac on my desk and said there you go have a go at doing graphic art. Wow! Eventually I joined the Computergraphics section. What a job! Sometimes showing animation film makers how to do animation by computer. Nice to have been through it all.

And yes, through Facebook I have reconnected with family, school friends. 

Sometimes it is hard to believe man's in humanity to man. My dad would never talk about his early life in Ireland. Then I read Angela's Ashes, then I think I understood better. One of the things he did talk about was a house burned down and the town folk build a sod house in a day for the family to live in. What a world!

Sandy, that's fascinating.  I never knew anything about that.  Have you written your family history down for future generations?  My father dictated memoirs shortly before his death and we got them transcribed, edited and published.  Anyone interested could look up kryszek amazon and get a kindle copy.

Sandy08116, I grew up in the world of technology. AT&T. Before we had computers, teletype where we learned the basics of protocols. Then we got smart terminals to connect to mainframes in other central locations. I started programming the keys on the smart terminals and I was off and running into the new digital world! 🙂

Excellent book. 

I maintain a database of all Dutch Burgher families. Including articles, photos, family details that people have sent me. The Dutch Burgher Union published family trees in their journals. One of my ancestors lived in Thonon, France. He is described as 'On the 13th April 1387 the city of Thonon (Haute Savoie, France) granted him (Pierre de Alpa) his Bourgeoisie title. The written act has been lost between 1744 and 1748 and could not be found. However, a note of 1615 deposited in the archives of the County Vaudois has the following information: Pierre is mentioned as being Chamberlain of the Dame of Savoie, even with the title of equerry.  Two other titles concerning Pierre the first dated 22 January 1390 reads: Pierre de L'Alpe, Chamberlain of the Contesse of Savoy'. His grandson moved to Switzerland and we were from this branch. A 'scroll' was published, showing the tree going back to the 1350s. Fascinating accounts of Napoleonic times; mercenaries, adventurers, freedom fighters, politicians. One, Amédée Emmanuel François Laharpe, was a general in Napolean's army. Killed by friendly fire, his bust is in the Arc de Triomphe. Another, Frédéric-César, was tutor to the grandchildren of Catherine. The 'Ceylon' and 'South Africa' branches started when two brothers, members of the de Meuron regiment, were employed to look after the interests of the Dutch in South Africa and Ceylon. I am from the latter branch. The de la Harpe family. 

 

My laptop has died.  Will try to remember to reply more adequately when my new one is up and running.

Condolences!!

Anhaga, my wife has a laptop, never liked them always used a desktop. Got rid of the old desktop. Have a tablet which I almost never use and do almost everything on my cellphone. Just like one of my grandkids, you got smile, my wife tell me that I as bad as the kids with the damn phone. Big smile on my face.☺

Sandy and Michdonn, the laptop woes were my own fault.  Had problems with screen going black, but I would just turn off and on again to get picture back.  Well, turns out the video cable needed repair and eventually it shorted out the motherboard!  I got a bit of a scolding from the technician who said it was a good machine which should have lasted at least another five years.  I like the laptop.  Would never go back to a desktop again, ties you down!  I don't have a smartphone, to cheap to pay for an expensive data plan.  I did enjoy my Playbook when it was new and still supported by Blackberry.

Sandy, it's great you've been able to keep such a good record for yourself and for descendants.  I feel lucky to be able to go back to my grandparents! 

I'm not even sure I could manage that!!!!

Anhaga, 98% of what I do is on my cellphone, the rest a little on my tablet, good for reading large articles, use the laptop mostly to store somethings. Cellphone not always right thing use, but it is right there in your pocket, so convenient.

I with you, really know very little about my heritage! Knew only one grandmother and she died when I was about four! She smoked Luck Strike cigarettes, when the color of the package changed from Green to White, the green had gone to the war. That's is about all I remember!

Sad!

Of course I never met my paternal grandparents and only knew my maternal grandmother briefly before emigrating to Canada.  Did see my grandfather again a few times years later when I began to visit the UK cousins.  But I was very warmly treated by stepmother's family, so had an honorary grandmother through her.  <3

Anhaga I had my mother's aunt, who treated us like a grandmother, and I do remember her fondly, she died while I was stationed in Germany. I had planned to be discharged in Germany, but when she died my mother asked if I would come home, which I did! She was a power house in Boston politics, quite a Lady!

Thanks. It's community that no longer exists. We were the last generation. Kinda sad.