Two weeks into Pred - then!

[Patricia157]

As I previously reported my GP started me on15mg on January 2nd which appears to be approximately the correct dose. I am having no issues but will see my doctor tomorrow to see what he has in mind for me. Any little tips on what to ask for my first visit to my doctor would be appreciated?

I had meant to do more in depth reading before tomorrow but I had to rush my husband in to A&E on Saturday with the diagnosis of Super Epiglottitis. I have been concentrating on him with such a serious condition. He is on 100 mg of steroids so my 15 mg is a drop in the ocean.

What a great start to 2015!

[PMRpro Ambassador]

Oh rats! Not nice epiglottitis - my daughter has had it twice, once REALLY badly.

15mg is just the starting dose - you will be expected to decrease it slowly. For speedy info about reduction rates try this:

rcpe.ac.uk/sites/default/fi...

Some of us think slightly smaller steps are better, especially from 10mg. Do not allow your GP to rush you to reduce, as that paper says, 6 weeks at 15mg is where you start - and that will give you plenty of time for reading up.

If you haven't already had one offered, ask for a dexascan within the next 3 or 4 months - don't accept being given alendronic acid until you have had one which says you need it. I assume you are already on calcium/vit D supplements?

That's a start!

[Patricia157 in reply to PMRpro]

Thank you for your help and advice. Also DaveD. My husband is now over the worst and has starting eating. I had never heard of this condition developing from a sore throat but I only got him to A & E in time. A few hours later could have had a different ending. Like PMR & GCA the illness mimics other conditions and is hard to diagnose. It just happened so quickly.

Many thanks

Patricia 157

[Hidden in reply to PMRpro]

I have read up on the possible side effects and they certainly put the frighteners on you! but what is your main concern. I have sciatica and soon after taking alendronic 70mg one/week I think the sciatica is more painful. I know imagination can play a part in all of this, but seriously I think it is worse. Got any thoughts!?

[daveD]

LO Patricia.PMRpro has all ready given you sound advice.just to add, I have kept what I call my log book to keep a record of of dosage & tick off each day when taken, all so a record of any problems.I have all so Book marked the slow reduction plan onto my Lap top.Best Wishes to you and Hubby.Dave

[Patricia157 in reply to daveD]

Thank you so much for your help.

[Charlie1boy]

Woops PMRpro! What is the problem with Alendronic Acid? I have been told to start taking it on the basis I would need it for bone strength. I have started a vitamin D supplement, and reckon to get enough calcium in my diet.

Am hoping to reduce steroids from 30mg shortly, as the pain seems almost to be under control. The steroids just seem to make me very sleepy.

Thanks for all your posts. I seem to be luckier than most of you.

[PMRpro Ambassador in reply to Charlie1boy]

There is no way of knowing if you "need it for bone strength" without doing a dexascan. I intensely dislike the practice that is growing of giving medication "just in case" without some indication of need. AA was marketed very aggressively and a generation of doctors grew up believing that it was totally innocuous and will prevent femoral fractures in every elderly person. It has some unpleasant side effects and some clear contraindications - but it doesn't stop doctors insisting patients take it without any consideration of that. If you have low bone density, fair enough, take it if you can. But its use without need is also exposing you to its possible side effects without need. In fact, only about half of patients on pred develop osteoporosis, many of those would have developed osteoporosis anyway but it is NOT 100% certain you will.

In the meantime, it has been established it is not a good idea to take it for more than 5 years without a break since at that point it becomes more likely that a few of the worse side effects may occur. Some dentists will refuse to do certain procedures if a patient is on AA - and stopping taking it doesn't help a lot because it remains in your bones long term. If you take it, you should check with a dentist beforehand in case you may require certain things done in the foreseeable future.

Whether you get a good supply of calcium in your diet or not - when on pred you should take some extra, pred makes you excrete it faster, but it is possible one tablet a day may be enough if you really do have a lot in your diet. Either way, I have been on pred at doses above 10mg for most of the last 5 years and only take calcium/vit D supplements. My bone density is unchanged and acceptable. Many others are in similar positions - without AA.

[Charlie1boy in reply to PMRpro]

Thank you very much for that information. I have no reason to believe that I have any problems with bone density, though, as you say, that can be checked. I have upped vit c in my diet, and am now taking a vit d supplement. I will discuss the Alendronic issue with my GP when I next see her, to see if I may come off it.

Thanks again - most helpful.