Side effect Question

I am down to 7mg per day so this is good info to know thanks Eileen I did not have an side effects either did gain a bit of weight but recently lost it and some more so that makes me feel very good for sure hope the tapering continues and no flare ups . Thanks again all the best to you 

Thank you, I am wondering what steroid you are on?

No problems with increased appetite, and therefore no weight gain. I find I'm not so tolerant and can get a little emotional, which was never a problem before. Slightly raised blood pressure, and low vitamin D, but better now I'm taking supplements. I'm currently on 9mg.

I'm on a form of prednisone called Lodotra in Europe, Rayos in the USA. It is a delayed release form you take it at 10pm and it releases at 2am - the time that has been established in a study to be the optimal time to take it for best relief of morning stiffness. It isn't available on the NHS in the UK and it seems to vary from insurer to insurer in the USA where it is ridiculously expensive for some reason! 

I had previously been on first prednisolone and there I can't say I noticed any side effects, I didn't gain weight but the fat redistributed to the usual places! Later I was put on Medrol/methylprednisolone which was a disaster in terms of side effects - weight gain, skin and hair went mad and I had a lovely black beard! All went again on Lodotra.

Low vit D isn't due to the pred - it is commonly found in autoimmune disorders especially as well as the general population.

Hi ClaireJG

I too now on 25 have had actually no appetite, and weight loss. I atrribute it to no sugar,salt carb diet. and hooe that trend continues. and now reading posts i think maybe it can!

gina

 

I hadn't realised that. Thanks for the info. My Rheumy checked both my calcium and vitamin D and wrote to me and my GP telling me my vitamin D was low and I needed supplements. I presumed it was due to the pred. The Rheumy also wanted me to start Alendronic Acid, which my GP prescribed, but I'm aware of the side effects, and am happy with my calcium and vitamin D supplements, so have so far resisted! I'm not keen on drugs to treat the side effects of drugs because they come with their own set of side effects.

Have you had a dexascan to assess your bone density?

I was surprised to be prescribed Alendronic Acid, when I hadn't had a dexascan, so had no evidence of osteoporosis. My Rheumy actually thought I was already on Alendronic Acid, but she can get a little mixed up regarding what I'm taking. I was briefly on Adcal, which brought my vitamin D levels up.

Many of us just take AdCal the entire time - it is often enough if your bone density is good at the start. My bone density has barely changed since I started taking pred nearly 8 years ago, I took a whole 4 tablets of AA before discussing it with a different GP and we decided together that we would postpone it at least until I had a dexascan. The results were good and I never took any more. It is beginning to show "feet of clay" and the recommendations now are that it shouldn't be taken ad infinitum (which is what the company said was possible to prevent loss of bone density) but for a limited time. I'd rather wait to see if there is justification - it is thought (and there is evidence in a recent study done in UCL I think it is) that when used for too long it causes brittle bone to form, with cracks in it, which can cause spontaneous fractures.

Hello Eileen & all... curious to know the difference between Lodotra and enteric costed prednisolone?  if enteric coated I assumed it was then slow release but perhaps thats wrong?

I take with water only at 7am an hour before b/fast. Have various levels of muscle weakness/pain on movement throughout the day really but ignore it and keep on gardening !

Re A Acid..there was a nuget of info on Radio 4 recently where they disclosed that under a  ? electron Micrscope they could see that A Acid was responsible for micro fractures not visible in normal XRays !! 

I too was put on it without a dexascan which then showed osteopaenia but I have notice a deterioration in my joints/OA since being on steroids for 15 months. 

I now take Accrete D3 but notice cloudy wee which I'm pretty sure is excreted calcium...does anyone else get this?  re magnesium/vit K2...I do eat a good fresh diet etc.  

 

Enteric coated or gastroresistant tablets have a hard outer coating which is not broken down by the acid environment in the stomach. They pass through the stomach unchanged and are broken down and absorbed further down the gut. You could call them slow release but that isn't really accurate, the primary point is to protect the stomach lining, but the pred is absorbed more gradually as the coating is broken down, a not like sucking a Smartie/M&M sweet.

Lodotra differs in being a delayed release formulation. The coating is designed to break down in the stomach after 4 hours - to achieve that the coating is thick but needs an acid environment created by there being food present in the stomach. They must be taken within 3 hours of a meal or together with a substantial snack such as bread with ham or cheese. When the coating splits open it dumps the entire dose into the stomach at once, exactly the same as when you take uncoated pred all at one with a sip of water, and the entire dose is absorbed quickly. The idea is to make it easier to effectively take ordinary pred at 2am but without having to wake up to do it!

I find I have problems if I take my calcium/vit D tablets and then don't drink as much as usual - when travelling for example. Can't say I've noticed cloudiness but I do sometimes get the symptoms of cystitis - which could happen if the excess calcium was causing grit to form.

A company called Skye Pharma introduced a product called Geoclock and worked with other pharmaceutical companies to produce Lodotra/Rayos. Geoclock (patented) is a special coating which is more complicated that just an enteric coating.

Re the Vitamin K2 - you are very unlikely to be getting more than traces of K2 in your diet, unless you are eating a couple of ounces of natto (fermented soybeans) every day.  This is why it's one vitamin that will almost certainly need to be supplemented, unlike most others which we can get from a balanced diet.  Apparently we used to get more when our animals were grassfed, because with that diet they make K2 for us.  But now that most are grainfed they cannot make K2.  

thanks one and all...more nuggets of helpful info.