pain in legs for 3 months and Hair on face etc.

It might be partly due to my age but I have no leg hair or

underarm hair but now I have more time to play with my

mustache.

Bless her cotton socks - but my 33 year old daughter has finally given in to having her eyebrows "looked after" and at the same time her asthma pred-related 'stache is dealt with. With very attractive results it must be said! 

Hello EileenH

You sent a reply to my post, thanking you for that.  You mentioned that at one time you had been on different sorts of Predn. at various times.  One you mentioned all your symptoms dissapeared when you switched to it.

Can you offer me the name of some of these Predns?  I did not realise there were different names of Predns which can be tried out.

 Track

out.  

I am in Australia, so maybe some of them are not available here.

I think it is fairly likely you won't get some of them - different countries are in the habit of using different corticosteroids so it depends which are approved by the system and available in the pharamcies.

Prednisone is the basic drug which is not active in the body until it has been processed in the liver to make prednisolone. Prednisone is very often used in the USA while in the UK it is almost always prednisolone. Here in Italy where I live it is methyl prednisolone that is approved by the healthcare system and used - a newer version with a slightly different structure and supposed to have a greater anti-inflammatory effect. That may also mean more side effeccts though not necessarily. It is called Medrol and is also used in the USA.

I was originally on prednisolone with few problems. Here in Italy it was methyl prednisoolone that caused me problems - and the only form of prednisone that is available here is Lodotra (called Rayos in the USA). It is only approved for us in RA in most countries so it is being used off-label - and it is relatively expensive, probably 30 times the cost of ordinary pred. It is available privately in the UK. Whether it would make any difference to you can't be forecast - you would have to try it - and you will have to investigate what the situation is in Australia. I think it is approved for RA there - but I don't know anything about your system.

Hi from Canberra Track!

Hello FlipDover,   happy to hear from someone from Australia, not too many on this Forum that I can find.

Do you have PMR?  I was diagnosed around July, 2015, and have been on Prednisone since, down to 10mgs now, though still feeling discomfort when the medication runs out after approx. 12 hours.

I find this forum very helpful, in fact I took some information to my Dr. this morning about different pred. meds and he is looking into them, which is a plus for him.

take care,

Track

Sorry Eileen I was in the middle of sending you an answer when boom of the screen is went.  So I sill be repeating myself a little I think.  My Dr this morning read my list of some of the Preds. you told me about and he looked up Lodotra (called Rayos in usa), he had not heard of it, but found it on the web and yes it is available in Australia.  He said it was a slow release Pred. which could suit me, he did not have enough time to read up on all of it but will get back to me when he does.  Also the Methyl Prednisolone is the same as the Prednisone I am taking here. So thank you for the advice, will let you know what comes of it.  He also has taken me of my very low dose of Crestor for Cholesterol and he thought this maybe contributing to the leg problem, but somehow I do not think so.  I have been on Cholesterol lowering tabs. for 35 years, runs in the ramily, I know my Cholesterol will go up very high when not on it, he has given me a blood test referal to have this checked out in 6 weeks time along with my esr and crp.

He told me I do have Cushing's Syndrome, but my face to him looked slightly smaller than 2 weeks ago, people are telling me this, though I feel as though I am still a chipmonk.....

thank you once again for your in put.

Track

It is NOT a slow release pred - it is a DELAYED release pred. The entire dose releases at one time 4 hours after taking it (i.e. at 2pm having taken it at 10pm). That ensures the total dose is available at the right time and so has the maximum effect on the inflammatory substances which are released at about 4-4.30am.

But I hope he lets you try it - I like it very much.

Thank you Eileen once again,  I am sure when my Dr reads up on this Medication he will pick up that is a delayed release, he was only skimming through it quickly at the time.

Could you tell me, because the dose releases at one time 4 hours after taking it, do you suffer pains while waiting the 4 hours before it kicks in? I am assuming you don't, but trying to get my brain around how it works.

 

there's a few of us Aussies - there's one up near Brisbane if I remember rightly.

Yup, I have PMR, no doubt about it. I was diagnosed Dec 14.  I've had a rough trot with this beast, but feeling much better these days. If you're interested I've posted a few times about my 'journey'.

This forum is the BEST!

No - it isn't any different from taking other pred when you have 24 hours between doses. The idea is just that you take it at a convenient time (before bed) and it releases at the optimum time (in the middle of the night) without you having to set the alarm and wake up and then get back to sleep. We suspect you could do exactly the same with enteric coated pred if you live in the UK - you would take it at about 8 or 9pm and it would reach its maximum level in the blood in the early morning.

I've met a few doctors who insist it is sustained or slow release - that's why I mentioned it. There is a big difference - sustained relase gives you a steady level in the blood. this gives you a burst of pred and achieves a higher level once off and then tails away over time. Which is the best way of dealing with inflammation.

Thanking you once again Eileen,

I googled Lodotra and printed out a lot of info. very interesting it is.

One article from H Horizon, states that it is planning next step for clinical trials for Lodotra in PMR, this I believe is an American Company, though no date on this paper, maybe trials have already been done.

The 2nd paper I noted was from the UK written by  EMC also very interesting. 

My Dr has taken me off my Cholesteral tabs, Crestor, as they can create pains in legs as well as the Pred.  I have been off for 3 days now and a slight improvement, though not much at present.  I have been on Chol. lowering tabs for 35 years, a hereditary thing, Mother, Sister same problem.   I know my  Cholesteral will go up into the 9 readings as has done in past, so I do not know at this stage what he hopes to control it with when this happens.  On 0.25mg crestor keeps reading down to 5.

 

It is already used in PMR by German doctors - and the odd Italian one since I'm on it! It was developed by a German company after German research but the regulations about use of such drugs for reimbursement in Europe are a bit different. The trouble is it is so much more  expensive - in the UK they have already discouraged its use for RA morning stiffness. 

Some hospitals won't use some of the statins at all because of the joint/muscle pain. Usually people who've been on them before are OK but the problem can occur at any point.

Well Eileen I had a visit with my Dr. this past Monday and he was quite impressed with the Ladotra information, he suggested I try it now, but then changed his mind as he is bringing me down slowly of Prednisone and thought it might be better to stay on current dose at present.  When I have a relapse which I am sure at some stage I will, he will put me onto the Ladotra, he has quite a lot of RA patients he is going to trial on Lad. He has suggested I go down 1mg of Prednisone per week, I was a bit sceptical about this, what do you think?  I thought every 2 to 3 weeks.  I am now taking 9mg as from yesterday.  My legs have much improved though still tingling at times and I am still sooooo... tired.

with thanks,  T

He has

Personally I think that 1mg a week is a bit fast.... have you looked at the 'dead slow, nearly stop' method?

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

If you follow this link you will find a thread where the first post has lots of useful links and about post 4 or 5 you will find a couple of posts with a description of the whys and wherefores of the "Dead Slow and nearly Stop" reduction plan

Thank you FlipDover,

I have printed out your link for 'dead slow, nearly stop method', sounds interesting, i certainly throught my Dr's dropping 1mg every week was too fast, I have no intention in following that method.

Damn cold up here at Lake Macquarie, happened all of a sudden, I expect same where you are down South, I feel the cold makes this PMR worse especially in my legs.

talk soon,  

Track

One mg a MONTH  is more like it - at 1mg a week you are not staying at a new dose long enough to find out if it is still enough to manage the inflammation and then below about 8mg you aren't allowing your adrenal glands any chance to catch up and start to produce cortisol reliably again. It wouldn't matter but cortisol is essential for day to day function, without it you can become VERY ill and it can happen suddenly if you are exposed to any stress.

Looks as if you have about the same sort of weather and temperatures we have in northern Italy this week - yuk! I've been to Lake Macquarie - we drove from Sydney down to Melbourne along the coast. I think we must just have stayed overnight at Coffs Harbour between Brisbane and Sydney - barramundi for firsts and the best chocolate gluten-free cake I've ever tasted to follow!

And yes - I'm trying a 1mg reduction - and our weather is playing havoc. You at least can blame approaching winter - this is meant to be summer!

Winter has arrived - like you said, all of a sudden. We had -4*C night before last. BRRRRR.....

I'm hoping for a cold winter, I love suggling up inside with hot soup on the stove.

Mind you, getting out of bed to get to work early in the morning isn't so much fun lol

Will certainly take your advice Eileen, I knew Dr was incorrect, he knows me by now and knows I will do what is best for myself, he is quite young and takes it quite well.  

Happy to hear you have been through Lake Macquarie and down our coastline, were you born in Italy, or come from England?  Italy is a lovely country, so is England, my Grandmother came from Kent, Eng. came out to Oz in 1908 with my Grandfather to Sydney. 

take care,   T

 

Thanks FlipDover,

.

-4C is sooooo cold, we have been down to 7C which is cold for here.  Plenty of rain last night about 88 mms which we needed.   I am in the soup phase now as well, love making all types and freezing them

T

I was born and grew up in England, in Herefordshire, went to Uni in Scotland at 18 and since then have lived in Scotland, Germany, Scotland, north of England and now have retired to northern Italy, the German-speaking area. 

Guess where the weather is best? Though it is having a bit of an aberration at the moment...

Sounds a very interesting time living in various countries.  I lived in Canada in the 80's for 2 years, Vancouver, that is my only experience of working overseas.  We saw the dreadful floods in Germany 2 days ago, that poor village was over run with water, also in Texas USA, flooding, and we are expecting plenty of rain again within the next week, seems to be rain happening all over various places in the world.

Hope your weather improves soon.

T

 

"seems to be rain happening all over various places in the world"

that thought strikes me when I look at the Sky News world weather item! It made me wonder about the fires in Canada yesterday - and this morning they say people are begining to go home. They needed rain - could have had ours.   All that wetness in Germany (which hasn't been mentioned on Sky news by the way) is on the other side of the Alps from us - thank goodness, it can stay there! At least they provide a border that is hard for weather to cross as well as getting in the way of trade...

We down the East Coast of QLD and NSW are going to experience the BIG WET, due to arrive on Saturday evening, they have predicted our huge rivers are going to flood, at least 4 of them.   Two days ago we had 65 mms of rain here, after not having any for about 1 month.    The fires in Canada were horific, so many losing their homes,  lucky only 1 life lost, 1 too many.

I am managing on 9mg of Pred. 4 days now, will stay on for 1 month, though I am very tired, want to sleep a lot, which is not like me at all, it frustrates me, I am putting off doing a lot of things around the house.

T

t

Too far east for Alice Springs to get a real river I assume? 

If you are suffering increasing tiredness as you reduce, slow down. Although the received wisdom is that the physiological dose is about 8mg, some people don't absorb the pred fully and so effectively are getting a lower dose all the time. Or they need a bit more to function. Let your adrenal function catch up - it isn't a race to ero (or any other dose...)

Track, do you know, the fire that caused the evacuation of Fort Mac is still officially "out of control" although not threatening the city any more.  Apparently the air quality is dreadful so people are very slow to return and no children or people with respiratory problems are going back yet.  Still no running water....   Quite a catastrophe, really.  So when are we humans going to see the light and stop extracting every last drop of fossil fuel from the land?    

Thanks Anhaga - I was wondering that because they haven't had rain like so many of us in the rest of the world have they?

In certain respects this fire is interesting because it threatened a major human habitation, as well as impacting extraction industry to the extent that the economy of the country trembled!  But huge fires like this do take place in remote areas from time to time, caused by lightning.  The problem as I understand it is that because of a warming climate the fires will become more frequent and tend to get larger.  Fire is a necessary part of the life cycle of a forest, but once again human activity has tipped things out of balance.  I guess we can almost look on this as a metaphor for our own private fires, the inflammation of PMR.  What can we possibly do to regain our balance and begin the healing?

My understanding in my part of the world (U.S.) a lot of this

weird weather is caused by El Nino.....Florida usually has

warmer than normal winter and CA has a wetter than usual.

Don't remember all the changes that certain areas have

in an El Nino year but think one of them is less hurricanes

for our area.  

Hope all is okay down in Canberra and you escaped this horrendous storm.  We have been very lucky at Lake Macquarie, no wind only rain so no flooding as well.  

Sydney looks as though it has had so much damage especially along the Northern Beaches, homes have collapsed into the seas.

take care.

We are fine, although a little soggy!

I heard on the radio on my way to work this morning that the SES in Canberra had 180 call outs.  Mostly collapsed ceilings but a couple of floodings.

Glad it was this weekend and not next - we are heading north to QLD in our caravan.

Have a wonderful caravan holiday to QLD, take care.

Have been wondering about you Track - the emphasis on our news has been on Sydney, the coast. I suppose I assumed Canberra would be fine being so far inland. Despite the worst stuff here being in southern Germany - and it's difficult to get further from the sea than that!

Eileen,   we were very fortunate, Lake Macquarie only had rain, no wind and no flooding rivers, it bi passed us.  Sydney is in a real mess as so much damage, so far 4 lives lost.  

Canberra did have problems, the rivers came up, another 2 people missing there, there has been very few places spared on our huge coastline.   It has now travelled down to Victoria and Tasmania, so much damage in Tasmania, who would believe it.

Houses in Northern Sydney beach suburbs have had houses lost into the sea, the coastline washed away from underneath them. 

Hopefully the worst has been and gone, though they have issued another King tide warning in Sydney later tonight.

Thanks Eileen,

I've been looking at the Sky News world weather forecasts and wondering where in the world it wasn't raining! The answer is the west of the UK and Ireland - where it always rains usually...

Has the south coast of Australia been affected today - it looked as if something was approaching.

Come north Flip!! I live in Townsville and it is still lovely!! Was a balmy 16deg when I went home from my night shift this morning!! Actually managed to sleep with just a fan on....no air con!! We were living and travelling in our caravan until we ended up in Townsville...love it so much we have stayed and bought a house etc!!!

Hello Buffy,

I agree with you Townsville is a lovely spot, have visited many times.

Good to see another Aussie on this great Forum.

The South Coast was battered, but not as bad as Sydney and Tasmania. Tassie has lost lives and we lost one bloke last night at a river crossing not far from my home. Very sad.

 

How long were you travelling for? We've had a van for over 10 years, and just upgraded to what I call a luxury three roomed apartment - it's a Lotus  if you're interested in looking it up. We are still working, but will be travelling/living in it when we retire in a few years (and our daughters stop getting married and having babies that we need to be around for!).

I've been to Townsville a few times - and spent weeks on Magentic Island. I lived in Katherine for nearly a decade and I can't stand the heat any more! It's currently 7*C outside and I love it! lol

 

We travelled and worked for only 2yrs. I am an Icu nurse so picked up 3 month contracts as we went. Generally worked 3 months and travelled 3 months in our Jayco Starcraft. Got offered great job in Townsville so took it. Found a house at a price we couldn't resist so have settled here...until I get p...ed off at work one day and then we will hit the road again! Was a great lifestyle and will def hit the road at retirement! Assuming this aching body still works ok!! 😂😂😂

"Assuming this aching body still works ok!!"

It'll work a lot better without work to bash it about - especially ICU nursing!