Zero Prednisone Discussion

Steve,

It was wonderful to read your email. Yours is the first success story that I've read on this site. There have been so many heartbreaking tales of brave people coping with horrible pain....even when they taper slowly, change their diet and have positive outlooks. Plus so many who seem to have multiple problems.

I have been very fortunate so far. I struggled with aches and pains and increasing stiffness for a couple years, thinking I was getting arthritis, but then it became so whole body sense of being unwell that I finally went to the Dr. and had the tests only to have them say my numbers were normal. (My main symtoms were pain in upper arm - couldn't comb my hair, stiff hips - couldn't get in tub, couldn't sleep) Fortunately I was sent to a rheumatologist who gave me pprednisone, 15 mg.  and it was miraculous - within hours I felt almost normal. Within 2 weeks I would could hardly remember what it felt like. I have been doing the dead slow taper and have had no flares....tiny niggles in arms and wrists, tiny stiffness when I first taper. I count my blessings.

But from what I've read, it seems that I could relapse or have a flare at any time....so, the fear is always there at the back of my mind.....

So - it was good to hear your success story! there is hope!!!

Don't worry Pam, both MrsO (PMR&GCA) and myself (GCA only) both had them for 5 years and now coming up to our 7th year of remission.

There is a light at the end on the tunnel, we just do not know how long are our individual tunnels. 

Club Zero Member -  on another forum.

"It's Not What You Gather, But What You Scatter That Tells What Kind of Life You Have Lived, Let's scatter a little good."

Hi Pam. Maybe some GPs/MDs don't give people much morale support, either. It may be a little different for us guys, too, as PMR seems to follow a slightly different course between guys & gals. My GP was pretty good though and encouraged me to taper really slowly and I'm sure this helps, as many here also say. Like you, I got very quick relief from the pain within about 3 days and getting out of bed returned from being an ordeal back to normality. It was a planning exercise just to put on my shoes, too. For some the relief is quicker and on a more typical 15mg minimum starting dose it probably tends to be that much quicker. I was possibly lucky as well in that I suffered no side effects from the pred.

It seems from what people often say here that flares and relapses tend to happen most when the taper is rushed. What is the right taper rate for you may well be different from what it was for me. The general recommendations seem to be to keep the taper really slow & gentle. There are probably a good number of people who go into remission for long periods but no longer comment here, or more probably never did. Generally when people have problems of any sort or need support, they are more likely to come to this type of forum. Those who cope well (and taper v slowly) most likely won't show up in a forum all that often.

Wishing you success.

"Yours is the first success story that I've read on this site. "

I suggest you read back through this thread then! The clue is in the title: 

"Zero Prednisone Discussion

At the request of users I have started this discussion for users whose PMR/GCA has gone into remission and who are off steroids..."

and there are 97 responses!

You won't hear much about the success stories anywere else on the forum - lodger and MrsO are amongst a very small number who are still on the forums continuing our charity's work - partly because very many people don't want to be reminded of a dark period of their lives but also because they are too busy getting on with their life without PMR!

If you don't need support you won't feel a need to post on a forum and, equally obviously, it is the people with problems and the inexperienced who appear on the forums. I've had PMR for over 12 years, I've been on pred for over 7 years - but I'm not here looking for help, I'm wanting to help others learn faster what I now know and disseminate accurate information. I don't have pain, I take the dose of pred I need and I live well with very few problems - not everyone has a hard time, mine is just particulalry long!

Yes, this is why I still get on the site to give encouragement to those who can use it. There IS life after PMR.

hi pam I am a bit confused now.  that don't take much  lol,    but when y said on your thread you still had  pain.   but still carried on reducing,    how did you know it wasn't a flare.  because maybe after 5,5 years I have been doing it wrong,   when reducing  if I got pain I thought it was a flare   so went  back up to my last dose. maybe I should have carried on with my reduction.   I am now between 2,5    and  3

witth no extra pain  just   shoulder tip  pain which I have had all the time,

NO! - keep them as insurance - until the use-by date. Then take them to the pharmacy for disposal!

Well done sir!

John, Yiippee!  Welcome to Club Zero and remission.  You've done really well, and your post will give a real lift to others knowing that there is life at the end of the PMR tunnel.  I didn't feel confident enough to throw my pills out, just hid them away until they ran out of date!  Stay well now, John, and remember to still take special care of yourself as there will be a lot of different hormones etc getting back to normal - it is said it can take up to a year for our bodies to totally recover from the onslaught of the condition and the treatment.  Extra glass of the red stuff to celebrate!

Congratulations, John. I found, as Mrs. O says in her reply,  that you do have to give it time and I'd agree about the year and I'd maybe add " at least". What I also found, which was a nice surprise, that even after I thought I was back to normal there were days when I nkew that I'd taken another step that I hadn't realised I needed. Hope that makes sense.

Thank you, Mrs O. Concur on the red stuff have bought myself a very nice bottle of Pinot Noir but will only have one small glass during the evening meal. I'm still keeping an eye on myself - have a GP's appointment on the 12th and requesting a full blood test as my Platelet count was still high on the last one but from the first test in 2014 of 640 its slowly dropped to 485 (normal range is 150 - 400) so hoping it now below the top of the range. After research and advice from PMRPRO found that this is not uncommon with steroids. The total white cell count was just over the range last time and am hoping that too has dropped.  All the other on the Full Blood Count have dropped to within the normal range. 

I was joking _ as I'm in a very good mood! - about dumping the spare preds, no they are tucked away 'just in case'

You stay well yourself, John

Absolutely Betty. Like most people with PMR my mind wanted to get off pred and do it quickly but I had to learn to listen to my body not the impatient mind.

Thank you, Eileen.  OH yes! I have stored them away - 'just in case'.  I usually take all my 'out of date' meds back to the pharmacy, safest place not down the waste pipe or in the dustbin.

John, at least the platelets are going in the right direction so augurs well for the next blood test.  Likewise the white cell count.  As I said in my previous post it, and as Betty has also mentioned, it can take up to a year for everything to get back into place once in remission - and it's quite early days for you.  All sounds good - keep it up.

John, I meant to say you might be able to indulge in slightly more than one small glass of Pinot Noir - it was highly acclaimed on this evening's TV programme "Trust Me I'm a Doctor"!

What - Pinot noir or wine in general? 

David is currently on the waggon after raised liver enzymes in a blood test before xmas. Yesterday he had a hospital appointment (renal, one urine then with protein, one this week with none) and mentioned it - "Pfft, that doesn't matter!" says the doctor. Unfortunately our lovely GP envisages a permanent ban - David doesn't...

Pinot Noir was used as an example, Eileen.

"Should I believe headlines that say red wine is good for me?

There’s growing evidence that alcohol, even in quite small quantities, is bad for you. However, if you believe the headlines you’d be forgiven for thinking that red wine is an exception. But is this true?

Red wine is part of the Mediterranean Diet, which consists of a range of fruits and vegetables, lean proteins and healthy fats, and is supposed to make you live longer. So is there anything in the red wine that could be contributing to the longevity of the Mediterranean people?

Red wine is made using the grape skin which contains a family of chemicals called polyphenols, and it therefore has a higher concentration of these chemicals than other alcoholic beverages, including white wine.

Of these chemicals, one called resveratrol has been studied more than most. It was known about for much of the 20th century, but it was only in the 1990s that it was discovered in red wine.

Dozens of studies have looked at whether resveratrol is good for you. Much of the work has involved giving resveratrol to lab animals; fish, mice, rats and even yeast have all been tested. But while some studies have shown promise, overall the evidence is inconclusive.

Most studies involve dosing animals with a very high concentration of resveratrol – much more than is in your average glass of red wine. In fact you would have to drink many bottles a day to get a dose equivalent to a resveratrol supplement pill. Of course, if you did this, any slight benefit from the resveratrol would be counteracted by the sheer volume of alcohol you had consumed!

Ultimately, the reason red wine has a reputation for being good for you may lie in the fact that it’s a component of the Mediterranean Diet. When drunk in moderation as part of this diet, red wine accompanies plenty of nutrient rich foods like fruits, vegetables, fish and nuts. And it’s likely that it’s all of these healthy components working in combination that leads to a longer, healthier life."

Poor David! He does seem to have a choice though:  different doctors with different opinions.  I wonder which one he'll go with?!

The "Mediterranean diet" always makes me laugh! Go down to the south of Italy, to Apullia, and their diet is awful! Processed meats (mortadella, ham, salami) and cheese form the first half of a meal followed by pasta asciuta with a small amount of sauce. Bari has wonderful streetfood - polenta cut into chips and deep fried in a vat of olive oil. Breakfast is a few sweet biscuits and a cup of espresso (and a ciggy for most people). Veggies are often preserved in olive oil and olives are pretty salty. But like the people here who eat loads of processed meat and fat - they live an awful long time...

I have a theory that it's all in the mind. I saw very few obese people in my recent month trip to Cyprus, considering some of the food they eat and the amount they consume - it's not all Greek salad!!.  The one thing I did notice is very few 'snack' and when they do sit down for a meal they take their time, talk and drink (yes red wine!) and RELAX!  I think the Brits eat too much fast food and bolt it down without even sitting down in most cases = stress?

The = should be +, shift key slipped!!

In general any full bodied red but I do like Pinot Noir.  I bought quite an expensive one to celebrate so just trying to make it last!!

I feel very sorry for David - one pleasure that should be doing him good

It's weird, isn't it.  I agree with John - it just doesn't add up.  Climate?  Different way of life?

They are very laid back in general, and of course, the warmer climate is very helpful. Strange seeing Brits walking around in December in tee shirts and shorts, and all the locals in hats, coats and scarfs - they think it's cold at 18c?

The things that kill us are not what Ancel Keys said they were. They are very "domani, domani" which helps as John says. It may be changing - they ate simple food and were rarely overweight but you do see a lot of junk food nowadays. I do think the whole family living helps too - 20 people sitting down to eat a meal together and enjoying each other's company helps too. And as you say John - very little snacking. Meals, proper meals.

In most of Italy the first glass of wine is at about 9am - while reading the paper at the bar. But only a small one - very unusual to see people plastered. And in the evening in most of Europe you only drink with food.

Don't know about tomorrow more like next week!

 

As soon as that?

"Know thyself "  and "nothing too much"   inscribed inside the temple of Apollo at Delphi, apparently.

 I think I'll go along with that. More recent pundits don't have much of a track record, do they? It used to be animal fats and now it's sugar and  three units used to be ok for men and now it's two. How can they  expect to be taken seriously?

MrsO, you said "There’s growing evidence that alcohol, even in quite small quantities, is bad for you." Is there a reference for that evidence?

I have read similar statements about a lot of foods, beverages, even exercises. I'm almost never able to verify them. Hope you can point me to some sources.

philoso, they weren't my words but taken from a TV programme last everning.  The programme called Trust Me, I'm a Doctor involves a team of doctors and their scientific research into a range of topics.  Last night's episode was the first of a new series.  Well worth watching but if you're unable to receive it you can read it all online.  One of the doctors gave a talk at the PMRGCAuk Charity's  AGM in London last year - it was televised and will be covered later this month - possibly on the 15th.

Really - they should come and look at the elderly gentlemen here who start the day at 9am or so with their first glass of wine. They are still going strong at heading for 90!!!!!!

Wine at 9am!!!  I enjoy my morning cup of tea too much!

Thanks for the source.

I did go to the source, thanks. The following seems to be what was said:

"The current recommended daily intake of alcohol for both men and women in the UK is 14 units of alcohol over a week – spread over 3 or more days.

This translates to 7 pints of weak beer or small glasses of wine, but alcohol levels and serving sizes of drinks vary so much it can mean as little as 4 bottles of strong lager or large glasses of wine.

There is a large body of evidence to suggest that drinking at this level is safe – and in some cases could even offer protection against heart disease.

But there is also controversy around this research, suggesting that the studies are flawed, and there is good research showing that any amount of alcohol puts you at increased risk of some cancers."

This seems a bit different than "any amount is bad for you."

It was dear Dame Sally who started the stuff about "any amount is bad for you". Then the media made a meal of it. 

Google Dame Sally Davies I like a glass of wine too to hear her comments.

The quote you have given is not from the same series/episode as the most recent one that I quoted.  I guess the jury is still out.  It's like so many other research results: for instance, one day coffee is good for you, the next not!

It is really hard to know what the current majority opinion of the medical community is, regarding almost any concern. I think we all remember when one musn't eat eggs because of cholesterol for example.

We each simply have to do our research the best we can and make our own decisions.

Well it's been 3 months and I have certainly felt very much better.  Went to Malta for three weeks in April to 'recuperate' and was walking up to 14 miles a day, my muscles have improved greatly but there's always a negative - I fell ill the last full day in Malta and ended up having to attend the Mosta Medical Centre in a great deal of pain ( No not PMR!! ) where I was seen very quickly and efficiently by a young lady Doctor and a male Nurse. I was so impressed by the service I wrote to their Head office in Valletta yesterday. I caught my flight the next morning and returned to the UK without any discomfort/pain.  The NHS picked up the trail as no records were available but not as efficient and caring as the Maltese - well done Malta - and it only cost me €1.50 for the bus trip, all the rest covered by the free European medical card.

Nothing like trying out the local healthcare services!! Glad you enjoyed your trip. I'm sure I saw something about them taking on outside work - perhaps the NHS could share their services...

Everything is under the Maltese (health gov mt) but I was told by the hotel staff it was a private company acting on behalf? I think the dear old HNS could learn from them but it's a dinosaur!

I marvel with admiration at the european health care system. If you consider your system a dinosaur, we here in the US are not even organic.... sulphur and acid, and now regressing with a repeal of our national health care on the table. Hi to all, hope the best for you. Still at zero here.

Dan

Impressed nby the European health card, would like to know more.  In Canada you have to live in a new province, if you move, for three months before your new province covers your health care.  

The European health card is for members of the EU allowing reciprocal health care agreements in other member states - and will disappear for Brits with Brexit. Unfortunately...

Yup but the private hospitals up here do  not have ICU's or access to other surgeons on the premises if anything goes wrong with the particular op you are having..........then its off to the nearest NHS in an ambo with para medics etc accompanied by -   guess who.............

Malta private probably had the full works............

I always bring my EU health card when travelling to another EU country -

UK as an example. Then I get the same health care as UK citizens. I also have a special travel insurance that covers health issues and transport back home if I cannot use the air ticket.

I am also US. Happen to disagree that our health care "system" is bad. If our health care were allowed to be more nearly free market (as our food system is) there could be immense improvements with far less cost.

This is not the place for debate. We disagree. Lets leave it there.

Philoso, I have been a nurse for 50 yrs 37 of which a nurse anesthetist. We had free market before 1970. It was terrible. The pre- existing high risk pools ran out of money and those people could not buy insurance at all. Wiped out financially. Before the 1970s all insurance carriers were non- profit. Premiums were reasonable and doctors had a decent income. With the profit 

motive money was taken from care and shifted to shareholders- a conflict of interest. Between jobs one could try paying for Cobra- very expensive especially without a job income. In my family we had a medical bankruptcy; my brother-in- law got cancer as a young man. He needed extensive surgery and chemo but couldn't work so couldn't afford insurance. Many years later it still effects his finances. 

I've just given facts. We are the only rich  industrialized country that doesn't provide guaranteed health insurance to its citizens. What's wrong with this picture?

But at least we're still covered while we wait for those three months by the previous Province/Territory. 

I'm not the one who brought it up.

And the US has the cheapest, most varied food supply in all the world. Bar none.

There are many stories of hardship due to illness. And they are indeed hard. Stuff happens. But the US has not had anything like a market driven health care since the laws were changed to allow businesses to give employees health insurance and write it off as a business expense. Since that time hardly anyone has individually paid attention to how much any test or procedure costs or is warranted. And those are only a couple of factors. A very complicated system that is not solved by government dictating the terms.

True.  However there are sometimes difficulties when you can't get a certain treatment in your home province and have to seek it in another one.  I think there is a problem with residency, although I guess it can be worked out.  

Dan the reason I call it a dinosaur is because of it being VERY large and can be VERY slow to react.  I'm not running it down as it does a great job - have to say that as my wife works for the NHS! I believe it one of the largest employers in the world?