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Hi I have had PMR for three years and live in France. My specialist has said I must come off Predisone and has put me on Hydrocortisone Roussel as an interim measure and wants me off altogether early in the new year.
Has anyone else any experience of this drug please.

Mo PattisonHi1

 
I am French and live in Bangladesh, no specialist here but a British doctor who has put me on 40mg of pred.  makes me feel so much better but is not taking all the pain away, night  and morning a bit hard.
 
I do not anything about this drug you dr want you to take but it is alway good to see different ways in different countries,
A doctor in France via a friend told me that I should take sels de nivaquine, do not know the word in English, do you take that? and as well shoud take calcium and vitamine D, suppose standard if you take prednisone. Desease new to me and would love to share your experience, still a slight doubt for me, will try to get to Singapour to see a specialist in the new year. Do you have days without any pain at all.  Mind you only started on wednesday and had just one free day of pain and the rest managable.
 
Amities
 
veronique
Hi Mo Pattison,
Can you tell us more about Hydrocortisone Roussel, if you tried it. Thanks,

freesia

Hi all!

Hydrocortisone is another corticosteroid but it has a shorter half life in the body (your body gets rid of it faster). You need a dose about 4 times higher to get the same effect because of the way it works - it's not really higher, it's because of the structure of the drug.
 
But Mo - why is your doctor wanting to get you off steroids (or, at least, prednisolone)? Is there a medical reason for it? If there isn't, go to the UK pmr-gcaUK  northeast support site and look at the articles there about using steroids which have bits about coming off/reducing steroids. Some doctors are very keen to get you off steroids - which may not be helpful as they are the only drug which controls the inflammation which is what is causing the pain/stiffness of PMR. They don't cure it, just make it liveable with. Nothing has been found yet which cures it.
best wishes,
MrsE
I feel that my rheumy is anxious to get me off prednisone, too--I think it's because I won't take Fosamax, etc, and she is concerned about bone loss since I already have osteopenia. However, I feel as if she is trying to rush my body and doesn't understand that PMR has a mind of its own (as mrs UK would say!). Freesia;
I've been on pred for 5+ years now, trying to keep it as low as possible, having started at 60 mg and now trying to keep it at 5 mg or lower, and even stopping for up to a month at a time; however, always having to start over again due to pain.  When I was diagnosed with GCA/PMR, I also was diagnosed with osteopenia with a DEXA bone scan but, like you, refused Fosamax.  I have been taking taking calcium plus D plus magnesium religiously hoping to ward off osteoporosis, along with eating calcium-rich foods.  Basically I was managing this by myself due to lack of insurance, but lately became Medicare eligible and was sent for a DEXA scan.  My T scores have plummeted and now I am into osteoporosis.  Therefore, on the advice of my doctor, I am reluctantly going to take Fosamax, as my MD has stated I am at severe risk of fracturing a bone if I should have a fall.  Very discouraging news as I was doing okay with pain management but now my bones are falling apart.  Maybe you should reconsider Fosamax if you are in a higher risk category for osteoporosis (slender body habitus, family history, etc.). 
 
Best wishes, Nancy
Hi Nancy,
I'm really sorry you are into osteoporosis. Thank you for your post. If the PMR continues I could be in the same place as you in a few years.
As far as the bone loss, I've been doing the same as you with calcium and vit D supplements and getting calcium in my diet.  I guess that pred is too strong an opponent ? I'm afraid of the side effects of Fosamax; I already have acid reflux that was aggravated by prednisone (I put all this in a previous post in another thread, sorry if I am repeating myself!).
Let us know how you do when you start the Fosamax.
Take care and I hope things go well for you.
freesia
Hi imainfp - or Nancy (you know which you'll recognise)!
I've just posted a relevant item re alendronic acid (Fosomax) over at the other thread that you might be interested in. You were on a very high dose initially which meant your bone density was very much at risk - had you been on the low dose you've managed to get to it might not have happened. However - since you are at that low dose, you could try taking double the dose on alternate days (i.e. 1 day on, 1 day off). This has less side-effects longterm if you can manage on the alternate day dosing - some people don't find the anti-inflammatory effect is enough to last the two days between doses. It's recognised way of taking steroids for patients on longterm maintenance steroids in other diseases.
 
all the best,
MrsE
Freesia;
I used to have acid reflux but not anymore, but now things get stuck in the esophagus on the way down; even water sometimes.  I drink some water before taking pills to make sure things are going down, but even then sometimes something gets stuck.  It's a horrible feeling.  I have an appointment to get endoscoped in 3 weeks to see if there is scarring and maybe they can use balloons to stretch the esophagus to open it up a bit more.  Hopefully things will go down more smoothly after that.  My first dose of Fosamax went okay, but I drank a glass of water before, with the pill, and then after to make sure it went down and dissolved in my stomach and not esophagus.
 
Mrs. E;
I have in the past tried the alternate day dosage and sometimes it goes okay and sometimes it doesn't.  Right now I just dose myself according to how I feel on any particular morning to what I feel will get me through the day, trying to stay at 5 mg or 2.5 mg.  I'm terribly afraid of headaches, since my journey with prednisone started with GCA, and then I will up the dose to 10 mg and see if the headache goes away.  That usually resolves the headache, and then I go back to my lower dose. 
 
Thank you both for your support.
 
 
Hi Nancy, I'm glad the first dose of Fosamax went down okay.  I'm sorry about the trouble you are having with your esophagus--I sure can sympathize. Wishing you luck with your endoscopy. Let us know how it goes.
freesia
Nancy, I have had my esophagus stretched 3 times over the past 15 years, and it has been extremely successful each time.  Since it was done under light anesthesia, it was pain-free.  Of course, it would be better if the success were permanent - and perhaps yours will be - but it's good to know that it can be repeated if necessary.  I wish you the best of luck with all this PMR business!
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