Hi, I just wanted to share what's going on as I've been so worried and upset. I know I've no right to be, I'm fine compared with many of you, but...So I've nearly come to the end of my Pmr...although I don't like saying it in case I jinx it and it flares! I'm on .0.5 pred, and feel fine apart from being very stiff which I put down to age and cold weather.
But...I've now got Periferal Artery disease! My femoral arteries are badly furred up (I saw a vascular surgeon and had a scan). He said its not bad enough for a stent as he can feel all my pulses, and said I had to go on aspirin and statins.
Well I've always used complementary medicine, and never taken much medication until I got Pmr. So this has knocked me for 6. Apparently I've got to take them for life. I can no longer take things like gingko to thin the blood or even turmeric! So I'm replacing healthy things with things that are bad for my body. I spend my evenings looking at Google! I've found out that I can take them on alternate days, which I am doing. I keep thinking I should come off the meds and try diet and herbs...but I'm worried about dying from a clot. But then I'm also worried about having a bleed in the brain from the aspirin!
When I first got the diagnosis I put myself on a strict diet and lost 3k. My cholesterol was still high though!
But I feel better for it and can walk much further. I wish I could monitor my own cholesterol- can anyone recommend a home tester?
Sorry to go on, but it helps to write it all down. Has anyone else had this? Any words of advice or solace...Thanks all
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Blossom20
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I just searched home testing kits too and saw the same - plus a book entitled the ‘great cholesterol myth ‘ The prologue talks about not cholesterol but inflammation and ‘belly fat ‘ being two of the culprits for heart disease. I think I’ve also read elsewhere that belly fat contributes to Cholesterol production .. so either way …. I think I’ll forget the belly dancing classes I had planned and focus on reducing the tummy !
yes an attempt at humour but yes I’m sure it would strengthen the core. I haven’t done a sit up in years -since PMR struck- unless you count getting out of bed ! As a child I did a lot of ballet which probably helped too. But I could imagine bopping about a bit when we’re out over the festive season so that’s maybe a start !
Many people develop peripheral arterial disease even without having had PMR. I take an anticoagulant medication which is far stronger than aspirin because I have atrial fibrillation - I don't worry about either the possibility of a clot which would be a great deal higher without the medication or the possibility of a CV bleed which is a possibility, especially if I had a car accident or fell and hit my head. Doctors do offer management of existing conditions that will have a positive effect on your life - I accept them and get on with living as best I can despite PMR and a/f!
I am like you. Nearly own the alphabet now😂I have had AF for many years and also have arterial problems...heart failure and still reducing Steroids. Down to 11.
I also have Blood thinners BP control and am on meds for cancer BUT I take the meds and get on with life as best I can.
My mantra
You die if you worry and die if you don't so ehy worry ?
I trust my doctor and take advice from here and count my blessings.
"You die if you worry and die if you don't so ehy worry ?"
Love it!!! There is only one definite in the future - all that differs is how you get there. Doctorate supervisors in Germany are often called "Doctor Fathers" - my husband's Doctor Grandfather (he'd supervised OH's supervisor) was rabidly anti-smoking and used to harrangue one colleague who smoked like a chimney. One day he asked the boss, "We are all going to die - agreed?" Yes, it was admitted. "Then the only difference is that one of us will die healthier than the other?" Also admitted. The irony was that OH's DG died after a long and lingering illness. When I think about it, so did OH and his doctor father.
my husband is n eliwuis for a-fib and he had a massive bleed after stumbling and knocking his knee. Not even a bad knock. His leg swelled up hugely. So do keep bleeding in mind.
Eliquis is apixaban - I'm on a different one and its levels were checked in the lab (unofficially because we wanted to know), I'm fairly confident it is OK. But you are right - just being on the new stuff instead of old-fashioned warfarin doesn't mean you can ignore fall and knocks.
We didn’t worry because he didn’t bleed much f he cut himself, do this was a shock as it was such a small knock and his leg was swollen and painful nought for morphine. Hope you keep well.
Sorry I can't offer any advice Blossom. Just wanted to say, I completely understand your disappointment at having to start on another drug after almost finishing Pred.I'm sure you'll gradully get used to the new routine and become a little less anxious about the medication. Take care and hope you continue on the road to recovery from PMR
Hi Blossom,I'm struggling a bit at present. Still on 3.5mg but lots of aches and pains, mainly in the hips/buttocks . Currently managing with ibuprofen when necessary as I really don't want to increase Pred. Like you, I hate introducing another drug but feel I'm stuck "between the devil and the deep blue sea" ie. Increase Pred or use Ibuprofen.
I had a telephone consultation with Rheumy last week and she sent me for a pelvic xray to rule out any other underlying problems. She said an MRI would be better but not available on NHS without further evidence of need.
I see her again end of January.
I hope you keep well and enjoy the holiday season.
Hi Carol. On reading your post I notice that you are using Ibuprofen. I used to live on that stuff before I got PMR, since when all the advice I see warns against Ibuprofen because it is an anti-inflammatory. Forgive me if you know all this, but paracetamol is now my acceptable painkiller.
Hi there thanks so much for your kind reply. I am aware that ibuprofen can cause stomach problems when used alongside Pred. However paracetamol doesn't touch the aches for me. Actually, when I told my Rheumy that I do get generally achy in the evening when Pred seems to wearing off she suggested Ibuprofen ?So much conflicting advice around its really difficult.
That’s really interesting, thank you. I tend to use painkillers to determine which is PMR and which is old age! Works ok with paracetamol but I might venture back to my tried and trusted as my hips hurt every night . Good luck with your ailment.
Please don't consider me to be any expert in these matters. I'm just trying whatever I can to get through this bad patch without increasing Pred.I'm sure one of our experts will provide some advice on use of Ibuprofen.
I used ibruprofen gel occasionally for OA pains when still on Pred for GCA -but not recommended to use tablets/capsules regularly . Once in a while a flooding dose can be used, provided you also take a stomach protector. Surprised your Rheumy suggested it.
But you might find that flexiseq works -no drugs in it, so no issues - flexiseq.com/
Oh, sorry to hear your struggles. It isn't an easy thing is it? I had those hip/ buttock pains but they seemed to come and go. If they get bad I think it is sensible to increase the pred for a few days to kill the inflammation. But I'm no expert! Glad to hear you've got a good rheumie.
I can understand your apprehension but if it helps to reassure you - my husband has been on aspirin & statin for 16years now after heart bypass surgery. He’s had no problems with the medication and remains well on it. It is hard to accept but in your shoes I don’t think I’d hesitate. Good luck whatever you decide.
I agree it disappointing to be told you need several new medications when you’re in sight of saying goodbye to pred. However statins and aspirin are strongly supported by evidence to help with arterial disease & be beneficial. I started aspirin and statins 5 years ago & been fine. I’ve recently been put on maximum dose of atorvastatin to get my cholesterol even lower. If it’s proven that this will help me stay as healthy & fit as I can be, I’ll go with it. The majority of older people have some degree of furred up arteries, most of them unaware of it.
Thanks for your reply. Do you have any side effects? I think my muscles are a bit more stiff and sore and a bit of heart beating fast, but I might be imagining it..
no, my muscles are weak from pmr & lack of fitness. I’ve been ok on 10,20,40 and now 80mgm. Statins tend to get blamed for lots of muscle issues that you would have got anyway.
you’ve done so well - losing 3 kgs , walking further, getting down to .5 mg of Pred and taking care of yourself with green pharmacology. Lots of things to celebrate there but I can understand your worry and disappointment. I also have (or had I hope ) high cholesterol at my last test. Higher than ever ! Despite reducing red meat and cheese. There’s a lot of discussion on the site in other areas re this issue. And as the Pro has pointed out previously since cholesterol is made by your own body in the liver some people seem to make more of it than others ! I am sure that high cholesterol is the root of a lot of evils so I’m trying to manage mine down with a whole food diet. One person swore by porridge and an orange in the morning. I do think oatmeal is good for soaking up the stuff. I have to say that since I’ve switched to a mainly plant based diet I feel heaps better. I actually feel happy ! Not something I could say for about 10 years and I’ve lost about the same weight as you. I am also less achey and continuing to reduce the pred - from 5 to 3 mgs now. There are so many great recipes out there now that vegan food is now pretty exciting stuff ! Not the bland mush I expected. I’ve made my first nut roast for the kids coming over today ( Jamie Oliver’s ) - they are all mainly vegan- and I have to say I can’t wait to try it ! So I think you can take your doctors advice and if you can get your cholesterol down maybe you can come off the medication in the future. Good luck!
Aw, thank you - what a positive post! I eat fairly well but my downfall is mashed potatoes and toast ( both with low fat butter!) I banished them when on my diet. Of course now it's creeping back! I think that at my age I deserve a few treats. I had a chocolate croissant yesterday!! So the statins will have to work hard!!I'll see how I get on. Yesterday my shoulders were so sore - I thought ' maybe it's muscle soreness from the statins' . Today they are a lot better. Its difficult to know if it's from the statins or from Pmr!
Just wondered: why is turmeric a no-no? I've been on blood thinners for 10 years (apixaban) and statins for 5 and I've continued to take turmeric. As far as I know I've had no issues. They didn't even need me to stop my blood thinners when I had my biopsy for GCA.
It can cause bleeding so shouldn't be added to anticoagulants including aspirin - and pred also increases risk of bleeding. What tends to happen though is that using turmeric in cooking is OK but taking the supplements which are a much higher amount often causes GI problems.
You have been lucky - I too have no serious problems with my blood thinner but my husband nearly died on apixaban when the blood level climbed to 10 times what it should be because no-one told him not to take his heart medication at the same time but separate them by 2 hours. The heart drug prevented normal excretion of the apixaban so the baseline level rose and rose - unnoticed because they don't check the NOACs. I'm only OK because the head of the local hospital lab and I did a bit of experimentation and established the same applied to me with a different anticoagulant. Instead of 4 drug rounds a day I now have 5 to avoid the problem. And reducing my pred dose with Actemra has reduced the massive bruising on my shins!
What do you mean by "blood level" please? And what heart drug was your OH on?
I get very little bruising except a bit when I have a blood test, but not always. I take turmeric supplements. The only GI issue I get is diarrhoea about once a week, but I have discovered psylium and since taking that have had no further problems.
The level of the drug substance in the blood. Can't remember what it was and he isn't here to ask - it applies for several drugs so whatever you take it needs checking for interactions.
They don't check the INR or PTT because they are not accurate except with narrow limits on timing and reagents. Also because the manufacturers say there is no need for checks and that is the USP of that range of drugs. They are far more expensive than warfarin but the cost is offset by the lack of monitoring which is also expensive as well as inconvenient. An Italian study worked out they pay for themselves in 10 months. This is despite a study that showed that checking the level of drug in the blood while initiating it would reduce the incidence of serious bleeding events by well over 20%. Surgeons are particularly aware - they KNOW the manufacturers claim that stopping them 2 or 3 days before surgery is enough is wrong. The head of our lab is a haematologist - it is his "thing" and as soon as they started to be used, he made sure he had the tests available to check blood levels. I was automatically put on the higher dose, 150mg 2x daily. That alone was too much for me, 110mg 2x daily is plenty even providing I don't take the propafenone close to it - not easy as it is 3x daily dosing and the anticoag 2x daily.
The INR and the activated partial thromboplastin time (aPTT) are used to monitor the anticoagulant effects of warfarin and heparin, respectively. They should NOT be used to measure the anticoagulant effects of NOACs.10,11 Depending on the laboratory reagent used and the timing of the blood draw after a dose of NOAC, the INR and aPTT may or may not be prolonged. Consequently, these tests should not be used to estimate the anticoagulant activity.12 It is reasonable to assume that some anticoagulant activity is present if either the INR and/or aPTT is elevated, but it is not appropriate to assume that anticoagulant activity is absent if these tests are within the normal range, especially if the last dose of a NOAC was taken within the prior 24 to 48 hours. "
Just out of interest, do you know why they don't check INR with NOACs? My Mum was on warfarin for years, and when she moved to be near us I had to take her for INR checks every fortnight. I got fed up of having to take time off work for this, so requested that she be prescribed an NOAC, which they did - so no more blood tests!
Turmeric, garlic, gingko biloba, and fish oils all thin the blood and reduce clotting. I used to take them all but now I'm on Asprin I've had to stop them! ( although i continue to take fish oils because they're so beneficial) I said to the doctor 'can't I take them instead' but she said she knew nothing about any supplements and couldn't comment!
It's true, they don't know about them. I had a medication review with the pharmacist at the surgery. He was very thorough and for the first time asked me what supplements I take. When I told him, he never said anything about not taking turmeric.
"And as the Pro has pointed out previously since cholesterol is made by your own body in the liver some people seem to make more of it than others ! I am sure that high cholesterol is the root of a lot of evils..."
and I'm sure he/she is right in that assumption.
BUT
I remember reading about someone in Italy several years ago, who went to the doctors about something entirely unrelated to Cholesteral. I think it was a physical injury. Anyway, a blood test was carried out for some reason, and the doctors discovered that the person had a lethal level of Cholesterol coursing through their blood vessels, yet the patient was seemingly healthy.
So then they invited in the full extended family of the patient (babies to grandparents) in for blood tests, and discovered all of them had the same lethal levels of Cholesterol, yet none of them were ill, or suffering from any blood or heart related issues. In fact the doctors themselves described the family members as robustly fit and healthy individuals.
The upshot of this is that doctors in Italy are now searching for a reason;
A) why there are such high Cholesterol levels in all of that particular family's members
B) why none of the family members (of any age) have been adversely affected by the Cholesterol
So perhaps Cholesterol is sometimes blamed for things it's not necessarily responsible for. After all, we need Cholesterol in order to function as living beings, so a one-size-fits-all regime for Cholesterol levels may not be as appropriate as the medical profession thinks it is. And the Italian family bears that out in rather spectacular fashion.
My friend who lives in France was diagnosed with naturally very high cholesterol some years ago, and was immediately prescribed statins, which she's been on ever since. She was told it is a genetic trait.
The question is, was your friend in France suffering at all with the high Cholesterol? If not then why put her on statins? Obviously her body wanted (or perhaps even needed) a high level of Cholesterol in order to function correctly. So it's my personal opinion that unless she was suffering from any ill effects of the Cholesterol, the doctors should have left well alone.
(But that is just my own opinion and I don't know the full facts, unlike the medical professionals involved.)
Has your friend suffered from taking the statins, or is she now fit and healthy and glad she's taking them?
She is a long term heavy smoker so has a permanent cough. Apart from that she has no issues either with the cholesterol or the statins as far as I know.
Cholesterol IS blamed for a lot. There are many cases of extremely high cholesterol levels as a result of a familial trait but many are apparently healthy. Others have the additional familial trait that they drop dead of cardiac events at an early age.
I agree that once dead it's a bit late to treat. But then I suppose the doctors could look at the rest of the family including ancestors, to see if they died young or had heart problems. If not then perhaps the Cholesterol is needed by that particular familial strain, and shouldn't really be tampered with. Furthermore, some people can't cope with statins and suffer quite severe side effects from taking them. So it's a toss up really, between the devil you know and the devil you don't.
Fascinating! And you're right, we need cholesterol to function - for the nervous system, hormone production etc. So trying to get it down to below 2 seems ridiculous. It leaves people in a worse state - depression etc.I would love to see that Italian paper - maybe Pro knows about it...
It was just something that came up on the internet one day, and I read it out of interest, as I don't have any problems with my Cholesterol, and was intrigued to see what the article was all about. It was two or three years ago that I read it, and I can't actually remember how I ended up seeing it, but it stuck in my mind as it was so unusual.
Further to my reply earlier, I've found a couple of articles on the internet that seem to refer to the Italian cholesterol oddity. Here's one of them, which I found in the Irish Times from 2008
It seems that some Italians carry a special protein that prevents the cholesterol from damaging them.
So all the drug companies now have to do is synthesise the protein, put it in tablet form, and none of us need ever worry about cholesterol levels again. Oh, but wait, that would mean their sales of statins would drop quite drastically, so I don't think I'll hold my breath on that one.
my mother who lived to 95 had high cholesterol too but I’ve read somewhere that the genetic trait only accounts for about 5 % of the population so I didn’t want to rely on that. I don’t want to take statins either. About 15 years ago I was offered a private scan on my arteries so although there was a lot of tutting about my cholesterol levels ( which are higher now !) it turned out that there was no plaque to be found anywhere. No potential aneurysm points either. I was told my arteries were wide and straight. Hurrah ! So I’m thinking it might be time for another scan to check if this is still the case. The other reason I’m trying to get my cholesterol down is to see if it impacts on inflammation levels / PMR. Isn’t there also a possible link between high cholesterol and dementia? My mother was a sharp as a tack fortunately.
I was diagnosed a couple of years ago with PAD, just as I was planning hip replacement. I was on 3 mgs pred and entering 5th year of PMR. The vascular surgeon put me on 1.) (the good statin, his words) Rosuvastatin-Calcium (5 mgs 2x a day); 2.) Cilostazol (100 mgs 2 x)--a blood thinner/dialator which enlarges the veins for easier passage. This med causes infrequent tachycardia but not enough to be of concern. I cannot take asprin because of an ulcer. I also take low dose (5 mgs )blood pressure pill with these meds. Walking for half an hour twice a day or equivalent exercise is also required. I am now at 2 mgs pred after finally getting my hip replaced last July. My recent lipid panel blood results have been significantly lowered. Total cholesterol two years ago was 251 and now 182. Both legs were almost totally blocked and one carotid artery was blocked per ultrasound. I feel fortunate to have the meds that I must probably take for life.
My diet has mainly been vegie/berries/fish/nut butter. I had to cut down on the daily glass of wine because of the blood med. And switched my whole milk yogurt for a cashew no cholesterol one.
trouble is you don,t know “I’ll- effects of cholesterol” until it’s too late ie damaging/ fatal blood clot.Are home testing kits accurate?how do we know? Why is there such a problem with swallowing a few meds to keep well? How do we know that “ natural” products are always the so wonderful?So much I don,t understand! Best wishes and keep well.
Agree about the 'natural' products, as it's these that were often the basis for the meds we now have. Aspirin being a very good example. However, the old practice of rubbing a small dog over your head to treat a headache, has now thankfully been forgotten.
You have clearly made as many good decisions and tried as many natural options available to you to improve your health . Many of us do , but no matter what , we can still end up with conditions that need additional medicinal help.It is good to try and use natural products or supplements but on many occasions, and with many illnesses , that simply isn't enough , and avoiding the medications that help it, or not taking them consistently, can reduce your improvement , or allow the condition to deteriorate so that we end up needing more medications, higher doses , or surgeries in the future.
Your previous efforts will have helped to lengthen the time you went without symptoms which is a thing you should pat yourself on the back for.
But , with things like PAD and other Cholesterol conditions , often it is familial or genetic reasons that cause the high cholesterol despite your efforts and in these cases taking medication is the sensible , proactive thing to do whilst also continuing the healthier lifestyle and using the supplements you are still allowed to take to improve your success.
There is a point when we need to accept that our natural Preventative health plan is not enough on its own to reduce our stress and our symptoms , this is usually the case with Chronic illnesses rather than acute ones.
We would all prefer to follow our original principles and diet and lifestyle regimes but often it is those illnesses we clearly had no control over developing which force us into the Acceptance that we need to swap principles for a sensible proactive approach that combines lifestyle and medication.
Remember , medicines were not designed to make you unhealthy but to target the condition that needs treating with the least amount of side effects possible.
And some like Aspirin , salicylate, were synthesized partially from natural source ingredients to create the most concentrated and pure version of a medication which for hundreds of years was derived less efficiently from a natural source.
You aren't swapping " healthy" things for " bad" your are swapping one healthy supplement for another when the original health product was no longer good enough alone to do the job at hand.
Yes , statins can have there drawbacks if you don't really require them , or could rely on natural cholesterol reducing methods alone to control your risk of blockages and clots , but with some illnesses you need a statin , just like you needed a steroid rather than other drugs to control PMR. It's taking medications like these " just in case " that can be avoided not avoiding them when it is the treatment we need for what we have.
Yes , in many cases cholesterol is given far more blame than it actually had for a heart or circulatory illness , but in certain cases that cholesterol can be the cause because of our genetics reducing the ability to lower or remove the same amount of cholesterols and triglycerides from our system as the general population .
This is often true for people with PAD or High Cholesterol illnesses whom lived previously very healthy lifestyles , then the cause , in part, may be related to Familial Cholesterolemia , a little acknowledged condition which can effect approx one quarter of us without us knowing it.
The same can be true for other undiagnosed metabolic conditions too that can effect our cholesterol , insulin , sugar levels and absorption of nutrients.
No amount of good life style changes and natural statins or blood thinners will have prevented the eventual problem , although they will have helped how early on in life the illnesses caused by FC or others did develop. And how well and how quickly your body responds in general when you already follow healthy guidelines.
The way to eliminate the stress of it all. When you know you have done nothing to cause the illness Accept you are not to blame.
When you know that the pharmaceutical aids will help you avoid the worst of your illness, and no other natural options will do as much , Accept the most caring thing you can do for your body and yourself is to take the pill.
There isn't a great quandary in this , you don't want clots or the critical illnesses that happen because of them , stop putting yourself under extra stress by feeling guilty for taking a thing that could save your life , or add years of better quality life to your lifespan.
And don't let other people's opinions on taking medication whom have not walked in your shoes yet make you feel bad for using the drug you need either.
I know so many people whom spouted their opinion on my need for medicines or vaccines for years only for them to instantly change their opinion once their health changed and they needed them themselves.
I also know myself that old principles are often harder to swallow than the medications themselves but sometimes we do need to do both . Take care , Bee
Isn't the dose of aspirin for cardiovascular conditions really small? Taking that medication would be the least of my worries. It was developed from the substance found in willow, salicin, so is nearly as natural as you can get with a modern medication.
When my husband thought he might have some clotting problems after covid he was advised to take a baby aspirin a day. Not having any on hand he took the extra strength tablets we happen to keep here, and somehow survived with no adverse effects (he does have the little pills now). Of course, had I known what was going on I'd have made him cut the tablets into a more appropriate dosage! Take with food to line the stomach.
It is really small but the use of low dose aspirin in GCA has been discouraged in the most recent guidelines as the risk of bleeding outweighs any benefit.
Is that true of other conditions also? I know ibuprofen is more likely to cause haemorrhagic stroke which is why I've never taken it - family history. Another thing to avoid is liquorice. Amazing any of us survive isn't it?
Hi Blossom, I am very interested in the conversation that you initiated. My husband was recently put onto statins, and we have discovered that it is not enough to have simple HDL/LDL levels tested; there are different forms of each, and not all LDL levels are bad....sorry if this muddies the waters!
Simply that there are apparently different forms of HDL and LDL cholestrol, and they should all be tested to get an accurate picture of what is going on. I'll dig out the article I read and send it to you.
So sorry to hear about your condition, please think positive and everything will work out. I have joined the Brahma Kumari 's, it is a group of ladies and gentlemen and some children in this as well, I think you should find one where you live, and will definitely make a difference to your health.
I think it has made a great impact on my life, it teaches you a lot of things. It does teach you how to meditate. Have just finished World Meditation hour.
That is my opinion, it's a free course, and free learning at any centre, or you can ask if they have classes online.
They have classes in Hindi. English and other languages. Hope you will think about it. Hope you feel better soon.
All the best for a brilliant Xmas and Happy New year.
Hi Blossom,I have a related problem. Long term RA, GCA, Fibromyalgia etc. After 8 years on Pred no adrenal function so put on hydrocortisone. That was over 2 years ago - I have since put on nearly a stone in weight and most of it round my belly. Also around last year started having increasing pain when walking, to the point where I could not go more than a few yards. Finally got an MRI and vascular scan - showed " significant blockage" of iliac artery.. was recommended to have a stent, but no mention of cholesterol tests. Surgeon said there was a 1 - 5% chance of amputation following rhe procedure, and I was put off by that. A different consultant, who I trust, said that without the stent there would be no chance of a long-standing wound on my heel ever healing, and I really should have it. Tomorrow I have a phone consultation with the surgeon and hope to feel reassured about having the stent.
PS Five weeks ago I gave up smoking after 60 years, because he said it would lessen the pain in my legs, which was caused by insufficient oxygen....he was right!
Ah, well done for giving up smoking after so long - that's amazing! My consultant said smoking was the cause - but I gave up over 30 years ago! I wish you all the best for your phone consultation and I'm sure that a stent will be a good call.
Hello, Blossom20. I am so sorry you are experiencing all those complications. I, too, hate taking pharmaceuticals and can relate to how you are feeling about that - between a rock and a hard place. I love what dambusters said about worrying and death. I hope you are able to move on, make choices that you can live with, and enjoy what's good about every day - and I hope there is a lot for you to be thankful for.
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