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
You probably don't have Cushings Syndrome - you have become what is called cushingoid and that isn't quite the same thing.
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!
I have a slight mustache 😽 which I'm trying to remove - on 13 pred- started at 15 in Dec.
May be all your symptoms are the way the illness evolves- it evolves permanently little by little as time goes by....
We must be prepared for this changes .
Take care. 🍀
Please read ' prepared for these changes. Thank you.
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