Prednisolone

[Tayzee]

Is it ok to taper from 5mg to 2.5mg over a month?

[Koalajane]

Is there a reason that you have to do this?

[Tayzee in reply to Koalajane]

I have been on them over a year…. have moonface and put on 2 stone… all my blood tests are normal except for inflammation I esr reading of 36ish each time. Yes I have aches and pains but I’m getting really depressed about the side effects so want to get off them.

[Koalajane in reply to Tayzee]

I think at this stage you will have adrenal problems and a lot more pain if you do drop that fast. I and many others have been on prednisolone for a lot longer and we know we need it.Have you spoken to your doctor/consultant about your side effects.

Your ESR shows there is still plenty of inflammation and that can cause harm to your body,

What are the side effects that are worrying you?

[Tayzee in reply to Koalajane]

Weight and moonface… the steroids don’t seem to make much difference I don’t think.. esr always 36-39 … I don’t feel like me anymore and it’s making me depressed

[SheffieldJane in reply to Tayzee]

Do talk to your doctor about the depression. It is not inevitable and there are effective treatments available. I am not depressed and honestly I’ve never looked worse. I stick to a low carb diet and small portions but it’s slow. I don’t drink. I have a wardrobe too full of flattering clothes. I see my lovely hairdresser regularly and we experiment. I try new makeup and do the best with what I’m stuck with. My Australian grandsons failed to notice the change this Christmas and loved me anyway - a good use for a cuddly body. Oh and my husband tells kind lies. You are not alone Tayzee, but let’s get well first.

[Viv54 in reply to Tayzee]

So sorry to hear this, im in the same boat ! Put on 2 and a half stone plus loads of side affects Down to 9 and a half now started my sensible diet last week. This is my second course of Ped, first time i was hell bent on getting off them regardless. I put on 1 and half stone, needless to say i had a flare and was really not well so started off with a high dose from the DR,i ended up putting on anther stone !I think you have done well to get to your dose, but i learnt my lesson , im coming down slowly now. I felt like you, so low and then i thought right ive got to change this, I am now reducing my 9and a half very slowly 0.5 at a time, dont rush it your dose is at a good level to cut down on certain foods , do whats right for you. Dont end up back to square one ! Its never worth it.Remember your not on your own and give it a go, im the most positive ive been in ages , as im now taking control, good luck, you can do it . Best wishes Viv 🌷

[Tayzee in reply to Viv54]

Thank you so much for your kind reply 😊

[Tayzee in reply to Koalajane]

When you say adrenal problem…what do you mean x

[Koalajane in reply to Tayzee]

When you start steroids the adrenal glands stop working as their job is done by the steroids.When you get to around 5mg the adrenals have to start working. If you stop taking the prednisolone or drop too fast you could well start to get adrenal insufficiency which is very dangerous.

I think you should read some of the frequently asked questions on this forum

[Koalajane]

I lost weight by changing my diet and cutting my carbs so didn’t get a moonface. You have reduced very fast so that is probably why the steroids aren’t making much difference. You should only be reducing when the steroids have got you to the stage where you have very little pain. As many say, it is not a race to zero. Many have PMR for over 2 years, I have had it for nearly 5 years.

[PMRpro Ambassador]

If you don't have symptoms at 5mg that suggests the 5mg is plenty to keep the inflammation at bay - it does NOT mean the underlying cause of the PMR has burned out and gone into remission. Then, and only then, will you be able to stop pred without the symptoms returning as they were before pred. However, an ESR of 36 is actually usually reported as significantly raised - the normal range is regarded as 1-20 these days, whatever your age. PMR lasts for at least 2 years - only about a third are off pred in under 2 years - and for some it can be considerably longer. It isn't as simple as pred is bad, no pred is good - that leaves inflammation coursing through your body and causing damage itself, leaving you at a higher risk of other conditions later. The immobility that goes with unmanaged PMR leads to weight gain. It shuts you in because you can't keep up with friends and pursue your usual pastimes and that can lead to depression and other problems like mood changes. I know - I had 5 years without pred and it was awful. It wasn't my choice, I wasn't diagnosed.

Most of the adverse effects of pred can be managed or mitigated. Weight gain can be countered by cutting carbs in your diet - lots of people on the forum will tell their success stories. If you ask in a thread about your other problems you will get lots of realistic suggestions to try to help your situation.

You can try to reduce by 50% of your current dose in a month - you are very likely to end up feeling even worse than you do anyway. At this stage your adrenal function must catch up with the reducing pred dose. That takes time and changing the dose by that much will pose quite a hurdle to overcome. It will put you at risk of adrenal insufficiency - and with that big a change, potentially risking an adrenal crisis which could make you very ill, needing hospital treatment, The usual recommendation for reducing at this stage is by not more than 10% of the current dose - at 5mg that is 1/2mg, a fifth of what you are proposing.

[piglette]

In my opinion you will be asking for problems trying to reduce that fast. You may get a reaction from your adrenal glands as well as a PMR flare.

[DorsetLady PMRGCAuk volunteer]

What side effects in particular?..if weight, then look at FAQs, (linked) and scroll right down - you’ll find a couple of posts on subject-

healthunlocked.com/pmrgcauk...

A year is not long to be on Pred if your PMR is still active, which is extremely likely.. and as mentioned trying to reduce too quickly will

a. bring a return if symptoms, and

b. make live difficult whilst your adrenals take time in re-awakening -

healthunlocked.com/pmrgcauk...

[Louisa1840]

I would say you are taking an awful risk trying to taper that fast. The lower you get the more you need to take it slow in my opinion. I have been on 4 mgs for over a month and I am just dipping my toe into dropping to 3 and a half. I have had PMR for nearly 5 years. You have come this far very quickly by other's standards and you risk flaring if you go too fast now. Easy does it...........

[Exflex]

I don’t know because I’m tapering slowly, cautiously, from 5mg to 4.5. I wouldn’t dream of experimenting with such a sudden drop of 50%, just thinking of the consequences makes me shiver! Not even the most optimistic rheumatologist would recommend more than 1mg a month.

[cranberryt]

Most people no longer experience significant side effects under 7mg. Reducing so fast will probably not help mitigate any side effects at this point. And it seems your ESR is still high so your body is not ready anyway. I wouldn’t drop more than 1/2mg per month at this stage and that is only if you are pain free. You may need to address your side effects with other means (aka, at this point the steroids are probably not the reason for weight gain so you should be able to implement changes in activity and nutrition to address the weight gain.)