Lodotra

GDay Jane..........I have had PMR for 15 years....and have been unable to get below 5....that i take in the morning only......to get down to 5 i have had to drop one quarter mg  at least every 6 weeks...(.had to chop up the tabs)

After a major flare i would up the dose to about 10 daily then start reducing again...

Now , if i have a flare i double my dose for 3 days , then drop straight back to 5 daily.....I take Fozamax to aid bone density........

​The body produces about 7 mg daily on average....so if we are on five

​the body should be doing  its share... I had no success  with methotrexate, it made me as sick as a dog.(i would prefer to keep away from it just quietly)

Unfortunately little is known about PMR , origin or positive cure...so most people

just do whats best for them through trial and error  with some help from their Rheumy .....sounds silly but i feel thats the case....

​..........as every body seems to react differently...........

​............................Billy....................

 

I've had PMR for 13 years, have been on pred for 8 years and have not really got below 5mg - had a brief essay to 3.5mg but was rapidly back at 4mg and then 5mg was better so stuck there. Then I had a big flare - back to 15mg in January last year. Am now back to 6mg (just) and if I get to 5mg again that will do me fine. But I am lucky - the doctors here are very laid back about pred under 8mg/day, "you need what you need".

If you have gastritis I'd have thought enteric coated would be better than plain plus a PPI which just adds another layer of potential side effects. I assume you are in the UK since enteric coated is only available there. It comes in 5mg, 2.5mg and 1mg pills (the 1mg has only been available since last August, most doctors don't know about it).

Lodotra is just another form of coated pred really but instead of being gastroresistant (enteric coated) so it passes through the stomach and is absorbed further down the gut, the coating breaks down suddenly in the stomach after 4 hours (you take it at 10pm within 3 hours of a meal) and the entire dose is available at once, just 4 hours later, and is released at 2am, the time a study showed was the optimal time to take prednisone to avoid morning stiffness, but you don't have to wake up to take it. I take it - I love it. But it isn't available in the UK on the NHS, just privately and it is expensive at about £25 per pack of 30 tablets whatever dose they are. You need 3 packs to make up the dose - so a month's-worth is £75-100. I don't live in the UK - if I returned I'd try to get away with the enteric coated which should work in a similar way if you experiement a bit.

It doesn't matter how long you take pred for - while the dose is more than about 8mg your body stops producing cortisol because that is enough to do the required under most circumstances. It's like your central heating boiler not producing heat when the thermostat says it is warm enough.When it gets lower you adrenal glands will generally start to produce the required top-up - providing you reduce slowly enough. There are very few people where they don't but you would know - you would get increasingly tired, the fatigue would make pMR fatigue look a doddle. And there are other symptoms to suggest tehe is a problem.

Does make me wonder and worry a bit about a rheumy's knowledge of immunology if he wanted to give you mtx when you have primary immunodeficiency. I'd have thought pred was bad enough as an immunosuppressant. 

In PMR your entire dose should be taken in the morning for best results in terms of suppression of the inflammation. The antiinflammatory effect may not last a full 24 hours and some people get a better result by splitting the dose in some way, it varies though. As I said, 2am is the optimal time for avoiding morning stiffness but otherwise it isn't that critical - though the sooner after 4.30am (when the inflammatory substances are shed in the body) you are able to take your pred the better. That way they have less to do - some people wake and take their pred early and then settle down for another couple of hours by which time it has started to work.

Have I covered it all?

Hi Jane when my pain was in both shoulders  , hips and legs I bought a spray at Health food store all natural oils and was listed as good for Inflamation pain,  until that point could not get much sleep because of all the horrible pain but it worked miracles for me . 

I agree with what Eileen said. I had the shoulder pain at night too until I did as Eileen suggested, split the dose and that has handled it. Now I can sleep at night.  I take 3 and a half mg pred in morning, and 3 coated (Rayos available in US) at 10pm. Works like a charm.  I'm slowly reducing but waiting till school is out to continue reducing dead slow method. Way too much stress to try to reduce while teaching.