2 mg methylpred for about a year

[Lawrie]

Hi all, it has been a very long time since I have posted. Early November will be 4 yrs with PMR, however, the last year I have been holding steady to 2mg per day. I sometimes go every other day, but when I get brave and go off of them, about 4 days later I will be SO stiff, I thank God it only take 2mgs, but also so confused why my body won't adapt to zero steroids?? Frustrating. Anyone else experience this?

[PMRpro Ambassador]

It won't adapt to zero pred because the underlying autoimmune disorder that causes the symptoms we call PMR is still active. There are doctors who will try to tell you that 2mg isn't doing anything - there are plenty of people who have the same experience as you have had, sometimes even 1mg is needed and trying to stop results in a return of symptoms within a few weeks.

It is such a low dose it really isn't worth worrying about - and the aim of your reduction was not to get to zero come what may but to find the lowest dose that manages the symptoms. You've done that very successfully I'd say. Whatever medics try to tell people, PMR lasts a long time, often far longer than the 2 years they wave about, and German rheumatology textbooks quote an average of 5 years. I'm on 10 years and counting and if I could get to 2mg I really wouldn't complain. As it is, I am at 4mg at last and that's fine and my GP is perfectly happy.

Do you try going from 2 to zero? If so that may be part of the reason - it is a massive change to go from even 2mg to 1mg just like that overnight. That was part of the reason for developing the "Dead slow and nearly stop" approach:

healthunlocked.com/pmrgcauk...

I see from an image of Medrol 2mg it has scores which suggests they intend you to be able to cut it. You can get pill cutters from the pharmacy or online and it isn't too bad to cut them after a bit of practice! That would allow you to be able to get to 1mg more easily maybe - even to 1/2 mg with a bit of luck. It doesn't matter too much if it crumbles slightly - as long as what you are taking is enough to manage your symptoms that is all that matters, whether it is just over or just under 1mg or 1/2mg is irrelevant here.

[Lawrie in reply to PMRpro]

Thank you so very much for your reply. I know better, I should cut it down to 1 mg, as you stated I have a pill cutter, it is just hard to cut that pill into fourths. I will give that a try again.

My doctor has been great it is other doctors that have mentioned that 2 mg doesn't do anything! It amazes me that a doctor would think he knows it all and doesn't even have the disease, or understand that each person is different!

I was told it was a 3 year disease that is why I couldn't understand what was going on with me. 10 years is a long time, so glad you are down to 4 mg. Thank you for the encouragement, it is much appreciated!

Have a blessed week!

[PMRpro Ambassador in reply to Lawrie]

Here in Italy we can take tablets to the pharmacy and they will grind them and make them up into capsules with specified amounts. Maybe there is a compounding pharmacy that would do that for you?

A 3 year disease? Oh I do wish someone had told PMR that! You are certainly very lucky to have a sensible doctor who understands autoimmune disease better than the average - hang on to them! If you can persuade it to be happy on 1mg on alternate days you could forget about reducing any further!

[Lawrie in reply to PMRpro]

With our current Obama care- our Pharmacy will not do that. I like the idea.

[PMRpro Ambassador in reply to Lawrie]

You may have to pay for the service, I think we do, but it isn't a massive amount. And whatever you think about Obama care it is only what most of Europe has lived with for a very long time. No-one here is left destitute by their medical care costs. Nor have they been for many years.

[Lawrie in reply to PMRpro]

Obama care is horrible, so many people have now lost good insurance and the young can not afford it. Our Hospitals are closing down, our labs have been cut back as to what tests they cover now, we have gone backwards not forward.

[tiasbear in reply to Lawrie]

Did you try a compounding Pharmacy?

I'm very thankful for Obama Care otherwise I wouldn't have any insurance at all! You can choose which insurance you want and therefore how much you want to pay.

[Lawrie in reply to tiasbear]

Well my daughter and her husband can not afford Obama care and they are not the only ones. Also, my deductions have gone up and also the amount taken out of my pay, not to mention again Hospitals closing and labs tests being reduced as to what is now covered. Not a fan.

I have not tried a compounding Pharmacy, I have never heard of them. I live in a very rural area.

[tiasbear in reply to Lawrie]

I'm also on Methyl Pred taking 4mg. I tried cutting the pill in fourths as well so I could alternate 4 mg with 3 mgs. My rheumi also told me that 1/4 of a pill isn't doing anything and that I should try alternating 4 & 2 every other day. It is difficult to cut them but certainly not impossible. I'm going to give the 4 & 2 method another shot as I've tried it before but with arthritis it's hard to tell if it's the PMR or the arthritis sometimes. (Diagnosed in Dec 2013)

[PMRpro Ambassador in reply to tiasbear]

Have you seen this?

healthunlocked.com/pmrgcauk...

You can use it to do a bigger step by slowing it down even further.

But just because it's "1/4 of a tablet" doesn't alter the fact he is telling you to reduce by 50% of the current dose whereas the recommendation by top PMR/GCA experts in the USA for years has been not to reduce by more than 10% of the current dose. You can do it in other illnesses where pred is used - but not here where you are looking for the lowest dose that manages the symptoms. 4mg may do it brilliantly, 2mg allow a good-going flare to develop requiring a return to a much higher dose. If you'd settled on 3mg you might have been fine but on a 25% lower dose.

[tiasbear in reply to PMRpro]

PMRpro,

I'm sorry but I'm a little confused. I think maybe you misunderstood what I said. I "was" alternating 4mg and 3mg every other day, which would average out to 3.5 mg daily.

My rheumi didn't think that was enough so now I'm alternating 4mg and 2mg every other day which averages out to 3mg daily.

So in essence I've dropped from 4mg to 3mg.

(which is a 25% drop)

[PMRpro Ambassador in reply to tiasbear]

Yes - but alternating 4 and 2 is a massive disparity from day to day and really confusing for your body. Better to alternate 4 and 3.5 for a few weeks and then 3.5 and 3 for a few weeks.

I know you are fighting a rheumy - but this isn't a race and the smaller the variations in dose from day to day the easier it is in the long run.

There are doctors floating around the forums who have tried to force people to reduce in the past when they were on one side of the fence. Now they have PMR and their view is rather different.

[Lawrie in reply to PMRpro]

Thanks! 2 mg every other day seems to do the trick for the most part, for about 8 months now.

[PMRpro Ambassador in reply to Lawrie]

Then stick there - the side effects using 2mg like that are minimal. You could try the occasional lower one - but just introduce it very slowly, just 1 day at a time with several days between at first.

[Lawrie in reply to tiasbear]

I am so sorry to hear about your arthritis as if PMR isn't bad enough. I would ask your Rheumi if they have ever had PMR and used a low dose. LOL. I think you know your body. At one time I could get the pink 2 mg pills, those were really easy to cut in half, however, I was told that the manufacture does not make those any more because no one uses them. I just take my 4 mg pill and snap it in half. I would go ahead and try what your doctor says, then try 3 mg or 2 mg. My PMR started Nov. 2011.

[Whittlesey]

Hi Lawry, good post, thank you.

I have been off the blog, also-- unfortunately my hotmail acct. got hacked and just got it reestablished.

I have the same problem.

I have GCA and the main symptom that recurs is fatigue.

Pretty extreme fatigue. At one point my cortisol level was 1 -- acceptable range 4 - 22.

Endocrinologist said to wait until I get the hip replacement and he will do a complete workup for Addison's disease.

Very good post Lawry, and my question is the same.

Would much appreciate advice or information.

Hope you get resolution Lawry.

best, Lawry

[Lawrie in reply to Whittlesey]

Whittleysey,

Oh how I feel for you, I pray that your next doctors visit will have some good news. I am so blessed that I was able to get to such a low dose of Steroids in 3 years from the start of this disease. I exercised through the pain, and took and still do, DHA Gold, an omega-3 from Algae.

[tiasbear]

Lawrie can I ask you how you got to 2mg? Did you come down from 4mg one mg at a time, or alternate 4mg and 2mg, or some other method? I'd sure appreciate your answer. Thank you much...

[Lawrie in reply to tiasbear]

I actually had a pink pill that was 2 mg that I could cut in half, so I would take 1/2 of the pink and 1/2 of my white 4 mg pill, which totaled 3 mg. So I was on that for awhile.

[IslandShell]

Feel I must put in an opposing view of what some refer to as "Obama Care" , it is actually named The Affordable Care Act & it is doing a very good job for people who could not acquire or afford health insurance previously. People can keep their children on their insurance until they are 26 years old and the young people I know don't have to pay over $50.00 a month or less. Also if you have a pre-existing condition , such as PMR the insurance company cannot cancel you. More & more the faction that opposed the ACA are having a harder time finding bad things to say about it. Unfortunately here in the United States we have a very rich & powerful influence in the media that takes all opportunities to propagandize any movements that may cost them their wealth. Sorry to politicize conversation here but I don't want our neighbor's across the pond to have just one impression of Obama and the good he has had to fight hard for.

[Lawrie in reply to IslandShell]

I understand you have your opinion, and I see what my daughter and son-in-law go through because they can not afford Obama care because of the medicine he has to take everyday. It is cheaper for them to not have insurance and pay for his very expensive medicine out of pocket, then to go on the very expensive Obama care. I am well aware of the statements you have made above, not sure you are aware of the number of Hospitals that have closed, along the the narrowing list of what is now allowed when it comes to lab tests. What needs to be addressed is the insurance companies, they are the ones making all the money. I just want our neighbors across the pond to hear what some others are experiencing here in America.

[tiasbear in reply to IslandShell]

I agree with you Merk. As I said I wouldn't have any insurance at all if it weren't for The Affordable Health Care Act, and that's a terrifying thought. I sometimes call it Obama Care because he said he liked the name because he does care.

[IslandShell]

tiasbear I am happy to know that you are one of the many who are now able to afford medical insurance in our country. I appreciate people who use the term "Obamacare" out of respect. Thank you. I wish you well with the PMR journey.

[Lawrie]

Okay, I think you did not understand what I said, my insurance has increased as to what I have to pay every month along with increased deductibles. My daughter and husband tried to sign up for Obamacare and would of had to pay 10X the amount of what his expensive medicine would cost them out of pocket every month. So they can not afford Obamacare. Along with many other Americans. However, it seems to be working for you, have a blessed day and hope your health remain increasingly good!