Coming of steroids with pmr

[Snookerball]

I have been taking four 5 mill steroids each day for pmr for 12 months now. If my pmr left my body and I was free of it and I carried on taking the steroids without knowing this. Would the steroids do me any harm

Thanks for reading

[DorsetLady PMRGCAuk volunteer]

Do you mean you are taking a total of 20mg per day after 12 months? If so, then why?

The idea is to take a higher amount than is necessary at the beginning to get the built up inflammation under control, and then slowly reduce - usually on a monthly basis to find the level you actually need.

If you have PMR it's unlikely to be gone after 12 months, minimum is about 2 years, usually much longer.

You certainly don't want to be taking steroids at a fairly high dose for long period, as yes they can cause problems.

Have a look at this, and then I think we need more information from you so we can give you a better answer.

healthunlocked.com/pmrgcauk...

[Snookerball in reply to DorsetLady]

My story goes like this in 2016 I was diagnosed with lung cancer at that time I was getting very bad pains in my shoulder and my groin I was admitted to hospital the doctors couldn't find anything wrong and after two weeks of testing they found a black spot in my right lung which turned out to be cancer at the time of having this cancer I was also suffering these joint pains in November 2016 I had the operation so the remove the top of my lung and after three to four days all these pains in my joints and my fingers which were curled over started to leave my body after two months I started to feel much better all the pains have gone and I was 90% back to normal then in May of 2017 all these joint pains came back I went back to the specialist who told me it could be two things either the Cancer has come back or there's something else going on in your body after having a scan I was told it was clear so I went to see my GP who put me on for four 5 mil steroids I now want to come off or reduce my steroids and today instead of taking 4 I have taken 3 and I am going to wait to see what effect this has on me

[piglette]

Hi Snookerball, didn’t your doctor tell you that you will need to taper the dose down over time? As Dorset Lady says you really do not need such a high dose for such a long period of time, that is if you really are taking 20mg a day. Taking steroids if you do not need them means you will get the side effects for no reason some of which can be quite b]nasty. You always want to be on as low a dose as you need. You will not know if the PMR has gone into remission until you stop taking the steroids and you have no pain. For goodness sake don’t just stop though as that could cause you real problems, you have to slowly cut down over time.

[Snookerball in reply to piglette]

What are the .most common side effects

My specialist advised me to trim the steroid by taking a quarter of one of them. That was two months ago.

I did reduce it to three a day a while ago but after two days I felt the symptoms slightly. So today I have taken only three and see what happens . I am only doing this because I have felt better in the last few days

[HeronNS in reply to Snookerball]

There are many possible side effects from prednisone but no one gets them all. Most serious include the possibility of bone thinning, for which reason you should have been told to take extra calcium as well as Vitamin D3 (there are other supplements which are wise to take as well, and we can fill you in on those if you're interested); increased blood sugar or even diabetes which can be controlled through reducing or eliminating most carbs. It is thought that prednisone can speed up the development of cataracts, probably only in those who were going to develop them eventually anyway. And the familiar side effects of redistribution of body fat leading to "moon face" and the dreaded "buffalo hump" although again both of these can be at least partially avoided by not gaining weight (helped by the low carb diet adopted to prevent diabetes or pre-diabetes). Some of us find that after a period of time on pred our muscle strength declines and we are more prone to injury, such as rotator cuff. We also need to be aware that pred is an immune system suppressant so we need to take care of ourselves and where possible avoid exposure to people with contagious diseases, like colds, etc.

The recommendation when tapering steroids is no more than 10% at a time. Your 5 mg reduction is 25% of a dose your body is very used to getting. I think you probably are experiencing steroid withdrawal pain. If this is what it is it should get better over the next few days or week or so. Once you feel better again stay at your new dose for a week or so. Once you have achieved 15 mg it would be very wise to reduce by only 1 mg at a time. There are a number of slow taper plans developed by PMR patients over the years so you may interested in trying one of those methods.

Once you get down to about 7 or 8 mg your adrenal glands will need to start producing cortisol again, having been suppressed by the pred for a number of months. This can be a very slow process. But you will also be getting to a level of pred where any side effects start to diminish.

By the way, have you been taking all your pred at one time or is it spaced out over the day? The standard method of taking pred for PMR is a single dose early in the morning with food.

[Snookerball in reply to HeronNS]

Hi heron just to say I have reduced one of the four 5 mil pred by a half so I take 3 and a half tabs a day at 12 noon. I dont feel any different in myself only a twinge in my groin which I used to get before I took the pred but was much more painful

Next week I will be reducing it to 3 tablets of 5 mil a day and see what happens.

Thanks

[Soraya_PMR in reply to Snookerball]

The symptoms you felt at day 2 were probably steroid withdrawal pains rather than PMR pains. Your body has been bathed in excess steroids for a year, you will feel reductions! Better to drop by 1mg at a time than 5mg to reduce the SW. However after a year you should be able to get to 10mg fairly quickly I would have thought.

What does your lung specialist advise? In the circumstances maybe a rheumatologist opinion should be sought. You’ve been left a bit high and dry IMO!

[Snookerball in reply to Soraya_PMR]

Thanks . Today I started with my wife shaving a quarter off one of the four 5 mil I take. I will do this for 2 weeks then reduce by a quarter more. Until I see some reaction

Thanks again Soraya

[Soraya_PMR in reply to Snookerball]

18.25mg. Good call.

Oh and good luck, stick around, tell us how it goes 👍🏼

[PMRpro Ambassador]

What dose do you mean? 20mg? If so - why have you been on that dose for so long? You should start on that dose and then taper slowly to find the lowest dose that manages the symptoms as well as the starting dose. Did you doctor not tell you that?

[Snookerball in reply to PMRpro]

No she put me on three mil tabs a day and because I still felt the symptoms she put it up to four a day which worked fine. My specialist asked me to come of them and try methotrexate but my wife advised me no to as she had heard of bad side effects

[PMRpro Ambassador in reply to Snookerball]

I'm sorry but "3 mil tabs" has no meaning for me. What dose are the tablets? I assume they are 5mg tablets and you are taking 4 so that is 20mg. You need to ask your doctor to give you 1mg tablets to make reducing easier - if you had only been on pred for a short time reducing 5mg at a time would have been fine but once you have been on pred quite a time you will have to reduce fairly gently to avoid feeling unwell - as you have already found. You could also buy a pill cutter from the pharmacy - and then you could cut the tablets in half and reduce by 2.5mg at a time which would be easier.

After this time you must reduce slowly - you can't just stop taking the pred. You can reduce reasonably quickly down to about 10mg providing you don't have a flare of the symptoms. Methotrexate won't replace the pred if what you have is PMR - what it may do is make the reduction process easier but there are no guarantees. But you would use the methotrexate alongside the pred, not to replace it.

Methotrexate is used at much lower doses in rheumatology and many people have no bad side effects at all. I used to think it shouldn't be used in PMR but I do know people who take it with no ill effects and it does help some to reduce the pred. I think now it is possibly worth trying - if it doesn't cause you any side effects. You can always stop it immediately if it does - you don't have to taper it.

[Lin6075 in reply to PMRpro]

I have been taking the methotrexate for 1 & 1/2 years and it hasn't helped to get me off pred. My hair is falling out and I had to start the weekly shot cause the pills made me so nauseated. I think it gives me a headache. It is a poison so if I started over again I wouldn't take it . I am going off of it this week. I'll see how it goes.

I'll find out if it was helping or not (for the pain)

[PMRpro Ambassador in reply to Lin6075]

Did it help you get to a lower dose of pred? That is the best you can hope for. But if it didn't and makes you ill - why take it?

[Lin6075 in reply to PMRpro]

It has been over a year and I can't seem to get below 10 mg pred for any length of time, so I would say it has not helped. Unfortunately, there is some argument in the medical field whether or not to taper the methotrexate. Last year they said just go off of it. I did and had the worst pmr flare. This time I weaned myself and this is the last week . I took 1 month to come off of it. In about 2 weeks I will know if the Methotrexate was actually helping. Wish me luck

I have the sweetest group of Christians who have been fasting and praying for me for the last two days. If that doesn't help I don't know what will.

Have a Blessed day

Lin

[PMRpro Ambassador in reply to Lin6075]

"Last year they said just go off of it. I did and had the worst pmr flare"

Which does suggest it HAD been helping achieve a lower dose of pred even if it wasn't as low as anyone wanted.

Good luck

[Lin6075 in reply to PMRpro]

I would agree with that assessment. However, I was also lowering the pred. which in hind site was probably a really bad idea. This time I left the pred. at 9mg and weaned off the methotrexate. Sure hoping this time it works.

[Snookerball in reply to PMRpro]

To be honest I am feeling a bit lost as to what should happen next. The GPS did not say come back and see me soon to see how your progressing. This kind I should book an appointment next week

Thanks'

[Snookerball in reply to PMRpro]

I just went to make a cuppa and felt a it dizzy in the head

I thought quick take take the other steroid I left out and I did. Starting tomorrow I am taking a quarter of one of the tabs. Let you know my progress

Thankz

[SheffieldJane]

If you feel that good, are you going to gently taper to zero? Side effects from 5 mgs are fairly negligible I think.

[SheffieldJane]

Sorry if I have misread your dosage, others have advised if you are on a higher dose.

[Snookerball in reply to SheffieldJane]

Just on 20 mil a day . Also I did not mention it have been on short and long tec pain killers since my op which also means will have to come off slowly in time

[Polywotsit PMRGCAuk team member]

Seeing as you have been on 20 mg for a year and you may have other issues we don't know about, I don't think any of us should advise you what to do or not do in terms of tapering. Go to see your GP as soon as possible. Get them to get a grip on your case. If you are in a group practice, it might be an idea to make an appointment with a different doctor. Leaving you on 20mg for a year without follow up is irresponsible, if this is actually the case. If you feel you would like to talk through the issues before you see the doctor, then phone the PMRGCAUK helpline on 03001115090.