5 mg Pred

[zoey12]

has anyone experienced going down to 5 mg after 6 months on pred And still at this low dose getting new side effect s. I thought when I got down to 5. I would not get new side effects and even though following your advice on this great site. I eat more or less correctly my stomach is still slowly getting bigger. But my hair is now falling out. Quite a lot. I am very upset as. I was proud of my body shape for my age. But not now. And proud of my hair. Which I can see I am. Going to loose soon. Any help. Please

[123-go]

Hello, zoey12. I have never been aware of anyone on this forum with PMR to have successfully reduced Prednisolone from 15mg to 5mg in six months. If there were such a person, then those hundreds of us here with PMR would all want to know their secret. Your reduction from 15mg to 5mg in six months is outrageously rapid. No one can predict the length of time between diagnosis and remission but it can be anything from 2 to four to six to eight.....years and few people have had a smooth journey although there are some.

Now for the questions:

Are you being managed by your GP?

Did he/she request investigations to rule out conditions before diagnosing PMR, e.g. a raft of blood tests/X-ray/scans?

Have you ever been symptom free after starting on Prednisolone?

[zoey12 in reply to 123-go]

You have hot me thinking mmm nit really had pains since going on it. That’s why I have reduced faster than g p said. As they are not helpful and no they did not do anything about ruling out anything else. Hope I haven’t taken pred for nothing that would be heart breaking

[PMRpro Ambassador in reply to zoey12]

If you had pain, if that pain went with pred and you have remained pain-free while reducing it was probably not for nothing,

[zoey12 in reply to PMRpro]

Yes hopefully. As long as it is pmr I have got. My knees and hips were steadily going worse for about 2 years. But I lived active life. But then last sept just got loads of pains in all the places legs arms neck the usual so gp. Said blood test and pmr

[PMRpro Ambassador in reply to zoey12]

There are other possibilities - and it occurs to me that palindromic rheumatism is another option. It comes in short lived episodes which last from a little as hours to weeks/months and can appear very like PMR. It tends to move around though rather than being all over.

[zoey12 in reply to PMRpro]

I will bear that in mind thanks. I had it about 3 months tops before pred. See how I reduce that may tell

[123-go in reply to zoey12]

Hi. I have to confess that I mistook your mention of 'side effects' for symptoms and I apologise. You appear to be doing the right things to help with the weight issue and you may be interested in this link regarding hair loss:

healthunlocked.com/pmrgcauk...

[zoey12 in reply to 123-go]

Thanks

[PMRpro Ambassador]

It is perfectly possible to reduce from 15 to 5 in 6 months if the dose you will need is well under 5mg - the starting dose is one that experience suggests will be enough for most patients, then you titrate that dose to find the lowest effective dose for you.

However - I'm less convinced that it is all pred causing your "side effects". Hair often reacts to illness and it also often takes 6 months for it to be obvious. I shed hair everywhere during most of the 5 years I had PMR before pred - so that wasn't pred-related. Mine has done all sorts of things with PMR and pred - it went straight, it fell out, it lost its bounce. But that was PMR. I now have a head of thick but fine and frizzy waves. As it grows, now shoulder length (or would be if the waves were ironed out), the frizz smoothes out with the weight. when lockdown closed hairdressers I decided to grow it out and embrace the natural look. I get many compliments - it is differnt, not really what I would LIKE, but it is what I have and there isno point fighting it.

"I eat more or less correctly" - what does that mean? A normal diet that is considered healthy doesn't work for many when on pred - low carb is the way to go. The position of fat deposition is probably due to pred - but in the 5 years of PMR without pred I struggled with weight gain and cravings for carbs in the afternoons. I didn't GAIN on pred - but the fat redistributed to face, shoulders and neck and around my middle. When I went low carb after the disaster that was methyl prednisolone and switched to prednisone the first place the weight went was around my waist - I took black trousers with me for my daughter's wedding and couldn't wear them, in the space of a few weeks they were so loose on the waist they wouldn't stay up!

What I'm saying is that it isn't always the pred and there are ways to cope with that for most things. And you will get plenty of advice and suggestions here.

[zoey12 in reply to PMRpro]

Thanks for reply. Yes I am eating the way you have already told me low carbs no salt. Watch the cereal. Mostly veg salad chicken bit of steak now and then drink water green tea. No alcohol. So boring. But I do cheat here and there but not much. A ice cream or 70 per cent chocolate maybe a biscuit. Exercise bought a bike. Can’t ride it so learning also got a excersise bike. So pushed myself now for a few days. A couple of times felt light headed after exercise. Not had trauma in life apart from getting pmr And not had pain from that since jan when I went on it. So going to go down to 4 in about a week. See how it goes

[PMRpro Ambassador in reply to zoey12]

Have you kept a food diary? Unfortunately low carb is very unforgiving for some people and the carbs mount up very easily with a biscuit or 3, fruit hides loads, I've fought with my weight all my life so I now have less of the driving force that you probably have - but if the fat is bothering you, you have to be the one to get your head around either more "deprivation" or accept the cuddly bits.

[zoey12 in reply to PMRpro]

You are right. Don’t eat the biscuits

[PMRpro Ambassador in reply to zoey12]

Icecream is OK in moderation - I eat plenty here but I try to make it the good stuff and just one scoop at a time. Then I have to make the effort to get to the gelateria rather than just the supermarket!!! Twice ...

[Viv54 in reply to PMRpro]

I'm at the point atm of accepting the cuddly bits !🙄😂

[PMRpro Ambassador in reply to Viv54]

I gave in to that a VERY long time ago - but I don't want to go mad about it ...

[Viv54 in reply to PMRpro]

I do try , but I admit I am rubbish at trying when in pain ! It sounds an excuse but I am a comfort eater ! Not to mention we have a wonderful ice cream parlour not to far from us .It's my weakness.😊

[PMRpro Ambassador in reply to Viv54]

Luckily mine is at the other end of a train journey, not a long one and doesn't cost me anything as I already have a Mobicard. but it does require the effort of walking to the station for the right time.Once you have got over that and if there isn't a queue a mile long you get off the train one way and it fits nicely for catching the next one back

[Viv54 in reply to PMRpro]

Sounds great, there always requires a bit of a effort abroad, we used to live in Spain for years and our ice cream parlour was a bus ride way .

[PMRpro Ambassador in reply to Viv54]

This is the good one - can get real icecream in the village but never do!

[Viv54 in reply to PMRpro]

It's a trip out 😊