pain in legs for 3 months and Hair on face etc.
Posted , 9 users are following.
I would like to thank all who answered my questions, much appreciated, thank goodness for this discussion forum.
Maybe I do have Cushings Syndrome, I will be asking my Dr next week in regards, this, I certainly have the symptoms.
Does anybody have the hair problem I have, eg. shaving legs and hair not returning, and white fluff on the side of my face.
Track
1 like, 45 replies
EileenH track
Posted
Cushings is caused by a disorder that is causing your body to make too much cortisol. That is a pathological thing and the underlying cause needs to be identified and put right. The typical symptoms of Cushings syndrome are due to the excess of cortisol leading to weight gain, fat being deposited in particular places, especially the moon face, buffalo hump and around your middle. And the strange patterns of hair growth.
When we are on doses of pred at above about 7.5mg, the equivalent of the amount of cortisol your body needs to produce every day for you to remain healthy, our bodies are exposed to an excess amount of corticosteroid. The body doesn't care whether it is the natural stuff or artificial, the effect is the same and you put on weight and develop the cushingoid appearance: moonface, buffalo hump, fat around your middle. But it is obvious why - you are taking pred - so there is no real need to consider this is a patient who may have the illness Cushings syndrome and do investigations to find where the excess corticosteroid is coming from.
I have been on different sorts of pred at various times, one sort redistributed the weight I had gained due to PMR and inactivity. Another sort left me sprouting a beautiful black beard, gaining a load of weight in the usual places and with muscle wasting. All that went when switched to another sort of pred - but I have no underarm hair now, the rest is normal. I have less leg hair - not all gone but need to epilate far less often (like once a summer!). It isn't all bad...
It is, by the way, possible to lose weight while on pred. I put on weight when I ate normal amounts of carbs while on pred - I lost 38 lbs by cutting carbs drastically even though I was still taking pred. Last week I was at a conference and pigged out on "normal" food, including cheesecake and gained 5lbs over 10 days. After 3 days back at my usual eating pattern with next to no carbs - 3lbs has already gone. I'm not the only person that cutting carbs has worked for though others have lost weight using slimming clubs, providing their class leader understands the problems associated with pred changing the way our bodies processes carbohydrate. Just cutting carbs is free though!
karenjaninaz track
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faye______00403 karenjaninaz
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underarm hair but now I have more time to play with my
mustache.
EileenH faye______00403
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track EileenH
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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.
EileenH track
Posted
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.
FlipDover_Aust track
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track FlipDover_Aust
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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
track EileenH
Posted
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
EileenH track
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But I hope he lets you try it - I like it very much.
track EileenH
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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.
FlipDover_Aust track
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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!
EileenH track
Posted
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.
track EileenH
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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.
EileenH track
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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.
track EileenH
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with thanks, T
He has
FlipDover_Aust track
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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
track FlipDover_Aust
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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
EileenH track
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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!
FlipDover_Aust track
Posted
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
track EileenH
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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
track FlipDover_Aust
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.
-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
EileenH track
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Guess where the weather is best? Though it is having a bit of an aberration at the moment...
track EileenH
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Hope your weather improves soon.
T
EileenH track
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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...
track EileenH
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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
EileenH track
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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...)
Anhaga track
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EileenH Anhaga
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Anhaga EileenH
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faye______00403 track
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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.
track FlipDover_Aust
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Sydney looks as though it has had so much damage especially along the Northern Beaches, homes have collapsed into the seas.
take care.
FlipDover_Aust track
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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.
track FlipDover_Aust
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EileenH track
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track EileenH
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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,
EileenH track
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Has the south coast of Australia been affected today - it looked as if something was approaching.
Buffy61 FlipDover_Aust
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track Buffy61
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I agree with you Townsville is a lovely spot, have visited many times.
Good to see another Aussie on this great Forum.
FlipDover_Aust EileenH
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FlipDover_Aust Buffy61
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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
Buffy61 FlipDover_Aust
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EileenH Buffy61
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It'll work a lot better without work to bash it about - especially ICU nursing!