This may mean nothing to those who live in the UK and pay nothing for their healthcare.
I received a letter yesterday saying I'd been granted 100% reimbursement on any medical intervention related to PMR for the next 10 years! I have to say I was a bit taken aback.
It's a confirmation that I have a chronic illness and I am still not getting my head round that. I think the 10 years was the shocker. Then this morning reading the from Podo (14 years!) I am feeling a little concerned that this could be longer term than I first imagined.
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IdasMum
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And I am 16 years down the line - but I think all of us long-timers are atypical for many different reasons.
The medics who currently say that it will be 2 - 3 years are gradually being replaced by those quoting 3 - 5 years which I think is more realistic. Those who do go right through the process and get to zero Pred early are much more likely to find it comes back at them than the medium-term ones.
Lucky you - it doesn't have a code here in Italy, they have searched! Other things are exempt the charges - PMR not so I still have to pay 2 euros per prescription and get 2 months worth instead of 1 euro for 6 months worth! I cheat a bit - my GP is rheumy trained and the same medical guy does cardiac stuff and has an interest in PMR/GCA, so I go for cardiac and include PMR. Then I don't have to pay for the consultation (all 18 euros for the first, 11 for follow-up). But when you do get an exemption it can be for 1, 3, 5 years or for life - saves reapplying. I'd sort of assume that PMR came under that sort of system.
I've had PMR for 12+ years, hasn't gone away in that time that I could tell, definitely hadn't in the first 5! It is difficult to tell when you are on pred until you reduce too far and it objects! It is only the English-speaking world that has this proposed "2 years" limit. Here they don't even wriggle at the time I've had it. The standard German textbook says an average of 5 years.
I cannot find the reference now - probably disappeared behind a pay wall like a lot of others - but top US experts reckoned some years ago that about a quarter get off pred in 2 years or less but then are at a higher risk of relapse at some later date. About half take from 4 to 6 years. The rest of us take longer and some remain on a low dose of pred for life. Bear in mind that some of those may be like polkadotcom and need the pred for adrenal insufficiency - and then you can't tell if the PMR has gone.
Those figures fit with what I have seen in the last 8 years on the forums - some diappear quite quickly, I assume they have no problems and get off pred. A bulk of us hang around for 5 years, plus or minus. I know of a man with GCA who took 11 years to get off pred - but he did.
My own feeling? If I feel good on a low dose then I'd happily stick there for life rather than rock the boat! I'm happy at 9mg at present - I was not desperately upset at 15mg with the flare because it worked and felt human again. I have other problems that I will be on medication for for the rest of my life and I don't perceive pred as being particulalry different or worse.
I am having a tired weekend, odd since I have felt pretty good since recommencing @ 15mgs 27 days ago and annoying that I am due to drop this week by 1 mg.
Can you let me know what side effects you are/have experienced at 9mg? Does the chipmunk, double chin effect ease off? Just beginning to be aware of that coming back and hoping to nip it in the bud. If I thought those things eased at just under 10mg I wouldn't be unhappy to remain there for a while.
I gained a lot of weight when I was on Medrol - and when I was switched to Lodotra (an expensive form of prednisone, the only alternative here) I also got stuck in to a diet. I was still on 15mg and the weight started to fade away, from around my midriff first but also from my face and the buffalo hump too. Sleeves very soon fitted better again too! I lost 36lbs over a period of under 2 years.
Several people have avoided the weight gain by really drastically cutting carbs - including me. It may be coincidence but I don't think so. I've struggled a bit this summer while above 10mg - too much travelling and too much yummy food - but haven't gained more than a couple of kilos. It was all when offered/couldn't avoid the wrong sort of food and I was not virtuous enough! Back home and on my normal diet and the weight gain has stopped and I have got rid of a bit.
I weigh no more now than I did pre-pred, 8 years ago. I gained weight with PMR because I couldn't move to exercise properly.
I haven't weighed myself for a couple of weeks and don't feel I have put on anything. The midriff gain I've not noticed either so maybe i will avoid as I taper.
We've been following a fasting regime for 6 months now....not eating until 1pm each day and not after 9pm. Once a week we probably don't follow this but our norm now is to fast. We've also been almost gluten free since coming back from the UK 5 weeks ago...so our carbs have also dropped somewhat. Maybe all of that will help.
I wasn't aware that different brands can give different effects. I am on Cortancyl this time and was on Prednisone last time. Will need to pay attention or go back the most recent pharmacy for my next script.
No, different substances with differing structures. I never use brand names - to avoid confusion! Except for Lodotra, which is a very specific formulation of prednisone with a time-sensitive outer coating that breaks down after 4 hours in the gut.
Prednisolone is the active form of the drug and can be used by the body immediately it is absorbed. Prednisone is what is called a precursor and must be processed by the liver to form prednisolone so it can be used. Methyl prednisolone has an extra bit of structure, a methyl group, attached to the basic molecule. This is supposed to make it more effective as an antiinflammatory. It also gives it the potential to cause more side effects. These are the 3 corticosteroids that have an action that lasts for more or less 24 hours - so you can take one dose a day without overlaps.
Question- Is prednisone easier on the stomach than prenisolone? Maybe because of where the body processes the drug? I am on the first and was told to eat when taking it but not given any of the medication that many on the forum seem to take for their stomachs. I do not feel I need any additional medication although in the beginning I had heartburn, but I was on a higher dose and had taken A LOT of naproxen pre diagnosis
Not really - the only difference between any of the formulations is where it is broken down and absorbed. All plain uncoated tablets, whatever drug they are, will be broken down in the stomach and absorbed there. That may cause irritation - or not.
Enteric coated forms are designed to pass through the stomach, the coating is resistant to the acid environment, and are absorbed further down the gut where the environment is alkaline. This means they take a lot longer to be absorbed and start to work.
The form I am on isn't enteric coated - but must be taken within 3 hours of a meal or with a snack to create the right gut conditions for it to suddenly disintegrate after 4 hours - and then it is absorbed immediately, just like plain white tablets.
I've never taken anything either - never felt I needed it even when I was on the plain variety. Lots of people on the forums don't either - but a lot of us swear by yoghurt! The PPIs themselves can cause unpleasant gastric problems - and reduce the absorption of calcium contributing to osteoporosis (probably more than pred does).
"This may mean nothing to those who live in the UK and pay nothing for their healthcare"
Hi IdasMum - I'd just like to offer a polite correction to your statement as this is a commonly held very wrong belief. Here in the UK we do actually pay for our health care through National Insurance contributions.
These compulsory contributions come from every wage packet we earn, from leaving school, until our retirement age, and it is pay related and inflation linked, the more we earn and the higher inflation, the more NI we pay, whether we get ill and use the service or not.
Additionally we currently pay £8.40 prescription charges for each drug dispensed - so anyone on (e.g.) 3 regular drugs, will pay £25.20 every time they collect their drugs - no joke for a long term illness like PMR/GCA - especially for low earners. We also separately pay, very expensive dental charges on top of that.
By the time you multiply all our pay packet contributions, prescription charges, and dental charges, for every working person in the UK, I think you'll find the government collect quite a healthy sum every single month towards our health care - a conservative estimate would put the figure well in excess of £400 Million per month. And that doesn't include optical health, wigs, hearing aids, nor other sundry additional medical items which are all paid extra.
It's little wonder that that "where the money goes", "who gets to use the service", and "constant cuts to NHS services" can be very sensitive subjects.
I do hope that clarifies it for anyone in the world reading this - believe me - nothing in the UK is actually free.
Both of us, Ida'smum and I, are British. We are extremely aware of the cost of medical care in the UK and both of us have paid the same as you have done for much of our life. The systems we use are different - but I can tell you we normally pay more at point of delivery here than you do in the UK! I have paid NI contributions in the UK all my life - and they are peanuts compared with the charges we pay here when working, but then, pay peanuts and what do you end up with? NI isn't just for your medical care, it is for your pension and other social services. My NI as a self-employed person in the UK was the princely sum of £2.70/week, it is now £2.80/week - all it covered was my entitlement to state pension and healthcare. So when you break it down, in reality you don't pay that much in the UK for healthcare. I was entitled to no sick pay, no unemployment benefits - that is what the rest is for. I think we pay something like £20+/week here - for the same entitlements.
I don't know about Ida'smum but I get no assistance at all for dental work, hearing aids or other sundry medical items - we pay the full wack. My recent ceramic inlay was 600 euros. A hygienist appointment to check next month it will be 80 euros. There are no options at all for an NHS-equivalent dentist. Nor can we get a prescription pre-payment certificate - anyone who gets more than 4 scripts per quarter in the UK will pay less if they get one and at over 60 you pay nothing in the UK, so not £25.20 for 3 scripts. I don't get free prescriptions for anything - not even at over 65 - and there are many medications that are not covered by the healthcare system, you are given a private prescription. That included a PPI and statin for me - I choose not to take either but not because of the cost.
And before you object to my comments - all my family, both of us and our daughters and their spouses were/still are NHS employees so I do have a fair idea what I'm speaking about.
Sorry, Brantuk but NI conts. do NOT fund the NHS, other than in a tiny amount - It is a very commonly held misperception. The NHS is paid for from general taxes and the NI collections mainly go to State Pensions, which is why you no longer pay it when you give up work. It is also why I see red when, on other forums, older people are often portrayed as non-contributory users (or parasites!) of the NHS but they, in fact, pay just the same as anyone else in a similar income bracket. They have also, mostly, been paying for longer! Perhaps that's why we get our prescriptions 'free'. Since I am on 9 different tablets a day plus a six-monthly injection, I am thankful there is that exemption.
It doesn't alter your main point, of course, that it is not a free service in the UK.
Totally agree PmrPro - I wasn't attacking anyone - it was simply meant as a polite correction. There's a lot of folks around the world who think we pay nothing at all for our treatment and I just wanted to set the record straight for them.
It's not as straight forward as is commonly thought. I'm sure I missed out loads of additional stuff that NI goes toward (eg elderly care) - I just didn't want folks thinking everything in the UK is free which is part of the attraction for migrants. Hope I didn't cause any offence.
Actually - migrants have to pay too, wherever they come from. When you arrive from the rest of the EU you have been paying at home - as I did coming here. Their treatment in the UK is partly reciprocal for what I am entitled to here - though I had to prove I was covered from here when I arrived to live in Italy. If you arrive to the UK from outside the EU you are granted an immigration visa - and pay up-front at a similar rate to a resident's NI contributions for the entire period of the visa. They don't get it free either.
But much of the problem in the UK is the government's - I have to pay for things here, I am not entitled to things here, partly because I haven't lived here long enough. When the borders were opened other countries took the opportunity that was offered them to set limits for both numbers arriving and entitlement to benefits. In its wisdom at the time, the UK decided not many people would come so they wouldn't bother. I HAVE to register to live where I live, obviously there are people who don't, but I couldn't live and work in the region without the police being on my doorstep if I didn't have the paperwork. Without my healthcare card I would have to pay the full cost of everything, I pay for all blood tests and a copay for each appointment with a specialist anyway. I have to show the card or I can't have treatment. And the invoice is sent to me every quarter if I don't go to the cashier at the time. The debt collectors are sent to call if I don't.
The UK would have far fewer problems if they simply gave everyone a card that had to be shown to get "free" or even subsidised treatment. Having an ID card is not a breach of liberties - it is a simple and effective form of ID instead of having to find an electricity bill addressed to you and your driving licence! And it doesn't have to cost a lot - my ordinary ID card cost a whole 1 euro plus the photo. My smart ski card would cost 3 euros for the card, other than that it is done like the UK photo driving licence. Not the £80 that was mooted for the voluntary ID card some years ago!!!
Good to have some clarity about how UK healthcare is paid for. I am also a former NHS employee, have just forgotten prescription charges as I don't pay them here....they are paid for by our reciprocal health cover from UK now OH is over 65.
I pay my Dr 23 euros for each consultation, 40 plus for consultants....70% is reimbursed and we pay 140 euros a month to make sure we get other random costs paid for. OH uses a CPAP mask and our 140 covers the payments for this. The 140 per month is like an insurance and means we don't need to worry about how we will pay for a hospital admissions and all the costs of anaesthetist etc.
I think the hardest thing for me is that we pay up from for Xray's, MRI's, Ultrasound, Dentist, Dr etc and whilst the refunds are quick there are times when the bank account is depleted and I have to choose between my health and my bank balance....I don't ever recall that being a choice I had to make in the UK...
No...I pay nothing, I hand over my Carte Vitale and Carte Mutuelle and it's all dealt with automatically. You'd be amazed at the bags of drugs I can leave the pharmacy with! It's a bit mad here regarding over prescribing and I am not complaining when I need a prescription
Had I been born a year or so earlier I too would be an OAP....goal posts keep moving for me, I have actually forgotten how old I'll need to be to claim OAP.
My goal posts were moved - I was 62 and an third by the time I got state pension from the UK. Here I will have to be 67 to get my miniscule pension - but accompanied by healthcare entitlement unless anything changes.
When we moved here officially David was just 60 and could have got the reduced rate transport card for all trains and busses in the region - he could have got it on his birthday every year since. I am not quite a year younger - and in between they raised the age entitlement by 5 years! I still can't have one! They raised the pension age for women overnight from 60 to 65 and then to 67.
I hope they didn't change the card age again - because when both of us can have it we will invest and explore the region on the train and busses...
That's all great extra information on medical costs in (let's say) Europe and the UK. I'm sure anyone reading this thread will be in no doubt that medical care isn't free here - which was my sole objective. So thank you both for that.
I do sympathise with IdasMum - I just can't imagine having to pay up front for MRI's, Cat scans, Xrays, Ultrasounds, etc, even if they are part or whole refunded. I've had plenty of those this past year and consider myself very fortunate to have been able to just "walk in" and not be charged.
I won't get on my soap box about entitlements, government policies, NHS procedures, etc cos it all drives me so crazy I'll end up needing psychiatric help as well lol.
"Do you have to claim the prescription charges back from the UK?"
Nope - I was pleasantly surprised to find when I turned 60 that there's no charge for prescriptions - I just walk into the surery - tick the box for what I need repeated - then take the prescription to the chemist to pick up my meds with no payment.
Prior to turning 60 - if I was prescribed two different drugs I had to pay two charges over the counter.
No, I know that - but if you are a UK pensioner your cover here still comes from the UK. So could I claim back my co-pays was what I meant.
I will never forget the expression on my husband's face when, on his 60th birthday, he took in set of prescriptions and was ready to pay! I knew he wouldn't have to - and had persuaded him to wait a couple of days as they weren't urgent...
Ah... I don't know about that one PmrPro - sorry - I've never had to get prescriptions abroad. I have to go to my surgery tomorrow so I'll ask if they know the rules for pensioners claiming back from the UK whilst living in other European countries.
Very interesting reading about the different health systems....just quickly, I didn't see Canada represented so will offer a few thoughts....we do have so called "universal health care" but it too is limited....the basic care of doctors, tests, hospital visits are paid for.....I think the biggest drain we feel is prescriptions and dental care....neither is covered (with one exception noted later)...........some people join a workplace plan if one is available and pay premiums....or you can join a health plan by yourself which has even higher premiums.....so for myself as a pensioner on a limited income I get my prescriptions free, even the dispensing fee is waved, but the drugs I need have to be on the government ok list, if not then I would have to pay, but that is rare......but I do have to pay for dental.....which is a worry.....this month I paid over $600 for checkup, cleaning and filling.....I dread the day when something prohibitive is necessary.......
Of note, there are private clinics where you can avoid wait times if you can pay for your tests, doctors, treatments....it's referred to now as a two tiered system and many feel it unfair pitting the wealthy against the not so.
I thought there was no private stuff in Canada? It's the same in the UK - there is no overlap so if you use private then you pay all. In Germany, on the other hand, everyone is covered to a certain level by the state insurer through the employer. If you earn above a certain amount it is up to you to purchase cover but anyone can buy a top-up insurance which pays the difference in cost between state and private. Though other than a twin room rather than a bigger up to 8-bed ward there isn't that much difference really. Unless you enjoy shaking the consultant's hand every day. But it has advantages though - private money helps buy equipment which can be used for non-private when private patients aren't using it. I had monitoring done on state of the art equipment - albeit at 11pm once the private patients were in bed!
Personally I don't see a problem with 2-tier - providing the private sector doesn't have the say in the state provision. I get a dexascan at a private hospital for 36 euros. I don't know how much the state pays - I pay the same even though that hospital was state-funded and isn't any more. But that is in northern Italy - don't think it is as good in some other areas.
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