PMR what to do?

I have a question not siege related to the thread.. Can you cut 2.5 pills into 4 equal pieces? They don't sell1 mg pills in Spain, but get this. .... they don't even sell pill cutters at pharmacies either..I'll get one on amazon of they can be cut in 4 with would still make then more than .5 mg

That's when the Dead Slow approach also helps - if you have to do 1mg or so at a time you can do each step of the DSANS twice (or more) if you need to slow it further. You only have the big step down 1 day at a time - and for most people their body does get used to it. There are people who have used it for 2.5mg steps when they are on gastroresistant pills. 

https://patient.info/forums/discuss/reducing-pred-dead-slow-and-nearly-stop-method-531439

I have used a single-edge knife razor to easily cut tablets in half along the line, then cut the halves in half to get quarters.  It's fairly precise if you center the blade carefully then rock the blade back and forth until the half-pill breaks.

I have a question myself, perhaps someone with broad medical knowledge might comment.  When pred causes weight gain, might this in itself cause an upturn in cytokine activity as (liver, muscle and fat cell) storage capacities are taxed, resulting in a return of symptoms and/or an increased dosage requirement as insulin levels presumably increase?

I've read that inflamatory response is closely tied to diet and to the body's nutrient-storage mechanisms and metabolism, so am wondering if pred use is eventually made less effective against pmr by it's tendency for patients who are taking it to gain weight.

I would assume that diabetes would become more likely and of course there is correlation between diabetes and weight gain and inflammatory activity as manifested by increased cytokine activity. And while I have little feel for the significance of blood level data, any increase in weight seems like a real-time potential source of problems relative to pmr and dosage level.

It does not mattenr if the cut is not exact.If you cut a 1 mg tablet you get 1 mg in two days. I had to cut 2.5 mg tablett in 4 pieces and after for days I had got the 2.5 mg. As comparison, I am taking blood thinning Warfarin tablets and take 2 tablets all days except Wednesday when I take three. They dont ask me to cut any tablets

Hello Dan, suspect Eileen will fill in the gaps but I can tell you that weight gain (particularly around the waist) can lead to insulin resistance then an increase in Insulin levels to cope with this. Insulin tends to cause weight gain so this becomes a vicious cylce. Exercise that builds up muscle mass helps as Insulin works better in muscle needing less of it!  Try to avoid a heavy carb/sugar load at once, spread meals evenly, avoid excess fat, bsqts & booze...all the things we all know really....in other words sensible lifestyle not a mad diet. most peolple make the mistake of over large helpings, particularly carbs.

The pancreas is like the engine in your car...are you driving a farari or a  reliant robin, either way you don't want to be reving the engine up too much !

Pred doesn't help as tends to result in a increase in sugar levels, some people go on to get Diabetic levels, possibly they were pre diabetic before the pmr hit but didn't know it. once off the pred with good D&Ex and losing weight, levels should revert.  

hope that helps...goodluck

I don't know and can't do reading to find out as I'm off on a trip so with restricted online access. It's a heavy read - but this talks about it:

Adipose Tissue in Obesity-Related Inflammation and Insulin Resistance: Cells, Cytokines, and Chemokines   Kassem Makki, Philippe Froguel, and Isabelle Wolowczuk

Il-6 is implicated in PMR and GCA:

Interleukin-6: a promising target for the treatment of polymyalgia rheumatica or giant cell arteritis?  Éric Toussirot, Alexis Régent, Valérie Devauchelle-Pensec, Alain Saraux, and Xavier Puéchal

which coincidentally reveals some of the less mentioned aspects of using tocilizumab in PMR and GCA! i.e. it isn't going to be a golden goose I suspect...

 

I wonder though whether it is less weight gain around the waist leading to insulin resistance as the reverse. Pred can result in spikes of blood sugar levels not related to food intake, they can be totally random. However, raised BS results in increased insulin to bring the BS back to where it should be but it tends to overreact, there is excess insulin and the excess insulin results in the fat deposits. And it becomes a vicious circle. 

And I wonder - does the cutting of carbs drastically reduce this effect as well as taking out the raised insulin levels secreted to deal with them. I didn't eat much carb anyway and in order to lose weight had to cut it even further. But I have never had any sign of pre-diabetes despite considerable weight gain over a period of about 9 months before I took it in hand.

I don't know if this makes sense - I know what I mean but I'm not sure I've conveyed it.

I'm 'with' you but had to read a few times!  Certainly a thought but inflamation will also raise sugar levels and who knows how the Pred/ liver reacts in all this, probably need an endocrinologist...or you to tell us!  

I guess cutting the carbs as you did would help to reduce insulin levels but you still need carbs to provide energy and maybe if you cut too much you make up for it by eating more fat & protein, otherwise you would start to break down fat then muscle to provide the energy, release ketones. Maybe your pancreas is a rolls royce engine and able to keep the sugar levels in order even when raised with the Pred ! 

Have a great trip Eileen. we'll all look forward to more wise words on your return

Again - think it is the other way round - sugar is pro-inflammatory, all simple carbs tend to be.

No - as I mentioned somewhere else recently: we do NOT need carbs for energy, that is a fallacy. If you eat a very low carb diet, when there is no carb availble, the body changes the process to ketogenic mode where it uses the fat stores you have laid down to produce energy. Which is exactly what you need to do having laid down fat stores due to pred. Providing you eat enough protein and fat you will not break down muscle and exercising also helps that. But as long as there  is above a certain level of carb you use them first - and any leftovers are stored as fat.

sorry for late reply..yes I agree with all that, Presume Carbs are our main source for providing energy..was thinking more in terms of appetite and resulting craving for fats/protein particularly if on low carb to make up the calories. At the end of the day it's down to will power and quality of the pancreas I guess

Not just - cells become insulin resistant, the insulin is ineffective. It seems that cutting carbs and calories will reset that - I assume that is the basis of the Newcastle research that underlies the blood sugar diet.

yes..black and white...loose weight and the Hba1c falls...generally speaking.

 

If it has always been there it doesn't sound as if it is due to you reducing. Some people are never totally pain/stiffness free. It's when it starts to increase you know you are in trouble.

Hi Eileen

Thanks for the advice. I went up to 4mg and did feel better. GP was the usual - PMR is supposed to last two years and you have had your two years. He has asked me to rest, stay at 4mg then had repeat bloods after 4 weeks to see if my CRP is going down. I had discussed with him about should I be reducing whilst my CRP was creeping up, and he was yes, get off the steriods ASAP.

So next question is, if my bloods show my CRP is going down again, how long do I stay at 4mg before I try to reduce to 3.5mg using the DSNS method (which I educated my GP about of course....)

thanks in advance

Jane

Find yourself a sensible GP!

An Italian paper published in 2009 I htink it was was a follow-up to one done about using methotrexate with pred in PMR. The original study had found that MTX did help patients to reduce their dose in the short term. Five years later they looked at the patients again and found that over the longer period the MTX hadn't made a difference to the pred-related side effects - so where is the point? And they found that about 30% of patients still required some pred after 6 years. So the 2 years stuff is for the birds! About a quarter get off pred in under 2 year - and have ahigher likelihood of having a relapse. Half take up to 4 to 6 years. 

If only I could find a GP who understood PMR... At the start of my journey, I saw the consultant and she went through everything very carefully and finally diagnosed PMR. GP was not happy and stated it could not be PMR as I was not fifty. Well I was...It was nice that he thought I did not look my age, but how I have aged over the last two and half years!

He wrote to the consultant and she advised against MTX as I am below 5mg and it rarely helps so at least she knows.

I just wish I could shift the weight. I am trying to eat leaves and ditch the carbs but I do struggle as I adore pasta and roast potatoes.

There are some - but I'd be ditching yours if he has the cheek to disagree with a specialist who has the right answer. It does work both ways though - I had a specialist (a very young, newly qualified arogant person) who wanted mine to be anything but PMR. A different GP recognised it though. I turned back into a human 6 hours after taking 15mg of pred!

MOST patients are over 50, but there are some who are not. Be grateful mind - there are doctors who will try to tell you it is only found in over 70s. That is because the literature quotes the AVERAGE age as 72 or something. There are a lot of people over 75 with it - there have to be some younger ones to bring the average down! And actually - I think there are a LOT under 50 who are not recognised as having PMR but are fobbed off as having depression, somaticsm, CFS and firomyalgia. If you don't look for it - you aren't going to find it are you?