PMRGCAuk
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Amazed

I was helping my neighbour by ‘house sitting’ while an engineer sorted his boiler out. We were chatting about this and that, I said I didn’t work due to health, I passed it off as a ‘problem with a long name’.

Can you believe that he’d heard of polymyalgia rheumatica? Not only that but he knew it was not my joints, but blood flow to my muscles!! Then he said “I bet you get tired”.

Well my ghast hasn’t been so flabbered in a long time!

Turns out another customer of his has it, and he’d obviously paid attention.

Little by little the world is educated.

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That’s how I feel too. I am PMRPro and DorsetLady trained. I hadn’t heard of the conditions at the beginning of 2016.

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Well done that man!

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I'm amazed, you mean some men actually listen!😉

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That did make me laugh :)

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I met someone on a campsite who said "You won't have heard of..."

Well actually...

And yes - well done the man!!!!

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Ha, ironic or what..? A plumbing engineer (?) who has not only heard about PMR but also understands broadly how it works in the circulatory system! I wonder if his experience with old and cranky heating boilers has something to do with that..? ;-) :-D

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More than likely!!

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.. maybe some of Us Lot would be better asking our GPs for referrals to Plumbers rather than Rheumies..? :-D :-D

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That thought did go through my mind Mark.

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I'm pretty sure being referred to a vet might work well...

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Who? the Patient or the GP..? :-D

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For us. Unless the vet might put the GP to sleep...

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Better not answer THAT one either way..! ;-)

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Sleep, not down...

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Oh, I see :-D

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You could be more right than you imagine.

Took daughter's 9 year old rescue dog to vets this week with terribly inflamed eyes. He has a long history of severe allergic reactions, ears, skin and now eyes. We adopted him and his odd little friend last April and have spent a fortune since on expensive treatments for his weeping ears and itching skin. These have done almost nothing for him and near bancrupted us. He is too old for us to get pet insurance.

This time saw wonderful old vet, founder member of the practice, who said:-

' He is an older dog in great discomfort who has the right to some quality of life. I suggest we put him on prednisolone 30mg for 10 days then start a very careful reduction until we find the lowest level which will control the inflamation and give him back his 'joi de vivre'' He can then stay on this for life and it will not bancrupt the family.'

Sound familiar?

Now I've got a companion on the pred reducing journey.

Help, anyone out there know about steroid treatment in dogs.

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There maybe our answer then to useless rheumies...the vets.....but they are rather expensive, and I`m probably to old for insurance too!....

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If you google steroids you will find LOADS of info that pertains to veterinary use!! A bit annoying when it was humans you were interested in in the context!!

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Hello Fren, I've got a dog with the same problem. She has had itching/bad skin since she was 2 years old, she's now 9. Over the years, like you, I have spent a fortune on trying to mend her, seen dermatologist had autoimmune therapy etc, nothing has worked. The only medication that has had any effect is prednisolone. I give her lmg a day and watch for signs of itching and increase the dose accordingly. Unfortunately high doses of prednisolone in the past have made her quite ill and therefore I try to keep her to a minimum dose.

Please let me know how your dog is getting on.

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On another forum a couple of ladies whose horses/dogs had skin itch problems used oil of some sort which had a miraculous effect. Possibly olive oil - must ask them.

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Thanks for taking an interest PMRpro. Funny the topics that arise when talking about Steroids.

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Thanks PMRpro.

I would be really interested to know which oil that was.

ren

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I was right - it was olive oil. Sorry it has taken so long to find out - the other forum was playing eejits!

The lady with the dog had a Doberman who itched. She applied olive oil to the skin - and added a tablesoon of olive oil to his feed. I think the horsey lady just applied it to the skin.

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Thanks so much for chasing that for me.

Cayman has had a whole week now of being able to see where he is going, no itching or shaking. As for his newly visible personality, he is so laid back he just seems to love lying on his bed daydreaming. That is when he is not draining the water bowls and needing a pee...Vive la Pred.

He is due his shampooing tomorrow and then back to the vet on Monday. We will try olive oil on the scaley areas where he was scratching. and plan to discuss raw or home cooked diet with added oil with the vet.

Thanks again. Ren.

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Great news about Cayman. He must be delighting in being itch free. What relief!

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Was it neem oil ?

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It may have been oil to consume. As a daughter of a country vet, I often heard him tell pet owners to try adding oil or animal fat to the pet’s daily food. He said commercial animal food was too low in fat & caused itching skin. Many clients reported good results.

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That sounds sensible.

Cayman has been on hypoallergenic biscuits for years, long before he came to us, which have done nothing to control the skin or the ears.

We are considering using this opportunity to change both dogs to a raw or homecooked diet starting with chicken/turkey and veg. We can then control salt and carb content and add some oil as you suggest.

Will be discussing diet with Vet on Monday.

Thank you so much for your kind interest.

Ren.

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Hi fren, It sounds to me that he is willing to put your dog on prednisone purely because of his age. If your dog was a young dog the vet more than likely wouldn't put it on pred because of the usual side effects. I think he is just realized it's cruel not to try. If it doesn't work and the vet says everything that could be tried has been then you may have to face a much more grim outlook.

You then have done all you could. You've loved the dog in his last part of life. That's really what matters.

Hope the pred works.

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Hi Loriel.

Yes I am sure you are right. I am well aware that there are likely to be problems later but to see him- a gorgeous chestnut labrador cross, relaxed, 'chilled out' even, after almost a year of constant scratching and head shaking, is an absolute joy for the whole family. AND he can sleep at night instead of endlessly rubbing his head against the carpet pile for relief.

We will do our best to make it work.

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First, bless you for taking in an older rescue dog - and especially one with health issues. Kind heart. I bet you had a deja vu moment at that treatment plan. I hope DSNS reduction works for dogs, too. Best wishes on this working out and giving back your dog a quality of life. Other thought: this reminds me of my sister: she and her old chocolate lab were on the same arthritis medicine. Wouldn’t it be something if you find that you both need the same mg dose?

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Hello Insight329,

There has been much deja vue with our odd dogs.

We decided to visit our local equivalent to the British RSPCA to adopt a puppy or a young dog for my grand- daughter. (we all live together)

In a corner of the reception, whilst waiting our turn, I spotted a photo of a very odd couple. A beautiful chestnut Labrador cross and a strange, stubby black and white pointer mix. The blurb said that the dogs were respectively 8 and 9 years old, had been together all their lives and they both had health problems.

Daughter and I looked at each other 'who on earth is going to take on that pair? ' pause, ' us?'

So then we met them and visited daily (60km round trip) for a week, and offered them a home. We spent time with the SPA Vet and were given lots of information about the labrador's food allergy, and the pointer's heart murmur.

A big 'deja vue' came with the paperwork for My little pointer. His birthday was given as the same as my late husband, his name was boxer, my husband proudly reached the Albert Hall Boxing finals in his youth, and he came with an appointment for an echography, like the many I had attended with OH during 15 years of caring for his very damaged heart.

We were hardly surprised, then, that the other, Caymen, would find himself a relevant bond to the family.

What better family could they have chosen than one which has experience and expertise in both their conditions. (I would do a wink or tongue in cheek if I could remember how.)

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The birthday/ boxer ‘coincidences’ made me shiver. Just the kind of thing that makes me take the ‘difficult’ dogs. Sometimes these things are just meant to be.

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It scared me a little at first, but he is such a character, as was the OH.

He has really strange rituals, especially with food, and I am gently teaching him to climb stairs. If I call him from the top of the stairs he runs off to my sitting room to find me, even when he can see me.

Couldn't be without him now.

I am really hoping that Cayman well will now have the chance for his personality to shine through. It is so good to see him relaxed.

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I bet Cayman is delighted to be living in an itch free zone. And I bet you’re right, now he’ll have time to do other things rather than scratching, and his personality will come through.

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I was going to say the same thing! It gave me goose bumps. Yep - those adoptions were meant to be.

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Yes...I was told that with my Weslie. Not that dosage but one a day...and then half a day. It worked for about a year and gave him a new lease on life. He then developed Cushing disease and I never was told if there was a connection. I suspect there was. He also had heart failure that I had to add to the mix. I would just keep in touch with the vet.

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There’s a direct correlation between steroids given as medication and Cushings in dogs, see iatrogenic Cushings.

It’s also possible that he had Cushings due to an adrenal tumour (my dog has this) or a pituitary tumour, as Cushings and terriers seem to go hand in hand.

No way of knowing in hindsight what the true cause was. But you’re spot on re ‘new lease of life’, this is what it is about really isn’t it? QOL?

One quote which I like, and often helps me with decisions about whether to treat or not to treat is “Cure sometimes, treat often, care always”~ Hippocrates.

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Yes I will 30048.

This is the first Vet who recognised that he has had inflamation for many years and had had the full tests with his previous owners. That we have been following all instructions, hyperallergenic diet and no extras, total flea control, regular baths with prescribed shampoo. We couldn't do any more and nothing worked. Now he deserves to be comfortable if possible, so we will closely follow his advice.

So sorry about your little dog, but I hope that the year of relief he had has left you with many happy memories.

ren

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For anyone with an itchy dog, with chronic ear infections etc, my first action would be to look at their diet. If you’re feeding a kibble (complete biscuit) look at the ingredients and check for colourants, preservatives, cereals etc. A home cooked diet or raw diet often improves the dog in a very short time.

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That is really interesting, we have been giving him the same hypoallergenic food that he had with his previous owners and is recommended by the vet. We feed both dogs the same mix to prevent sneaky pinching, but I don't think either of them actually enjoy it. I would love to try a home cooked diet but perhaps this is not the moment. Perhaps it will be possible once the allergic reactions are under control.

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But maybe you need the change in diet to get the allergies under control?

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I see your point PMRpro.

The vet was extremely thorough in both his examination and his questioning and was concerned that all the basic treatments were being covered. He is seeing Caymen again early next week to assess the effect of the prednisolone. That could be a good time to ask about changing his diet.

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And sometimes you need a change of protein source to something they have NEVER had before. But more often than not it’s the cereals and additives IME.

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In response to the thread re dogs - and cats - and skin problems. Yes. Has all too often been traced back to diet. Dogs and cats are 'basically' not cereal eaters, they are protein eaters and good animal fats. Cereals and the additives used in 'all' the industrial diets do all too often lead to skin problems.

Check out the BARF dit. Can also make up your own diet for animals. For ogs include vegetable, which will need a bast of cooking, flash through boiling water, this is to break down the outer cellulose. Fruit is also good. Meat. Not beef, as the cows have been fedGMO feed - sad but true - unless you can get holdof organic grass fed beef ! Mutton is pretty good. As is chicken and turkey, only, ensure organic, otherwise could even have been imported from America or China...

Here is a reasonable link to the BARF diet : Easy BARF Diet Recipes for Dogs - Vetinfo.com

vetinfo.com › Dogs › Diet and Nutrition

4 Easy BARF Diet Recipes for Dogs ... Email; The barf diet stands for biological appropriate raw ... but you have to make sure that the meat is ...

Veggies fir cats ? Hmmmmm. Protein only.

BTW mostof those'treats' are really nasty, can all too often lead to allergic reactions - like skin problems.

Hope this has helped.

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Yup. Low carb, high fats is great for dogs too :)

I raw feed my dogs.

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Great Soraya - way to have a healthy dog with a strong gut -

'Real' Food Can Decrease Allergic Responses in Dogs

Most holistic veterinary practitioners recommend switching any itchy dog to a complete and balanced home-prepared diet containing "real foods." This will decrease the dog's exposure to unnecessary or complex chemicals and give his body the opportunity to utilise the higher-quality nutrients present in fresh foods. Whether the diet is cooked or raw, the increased nutrient quality and availability of fresh whole foods will improve the health of any dog who currently receives even the best dry or canned foods.

Even the 'best' dry or canned foods can and do lead to allergic reactions. As for 'treats', best to make your own from good quality ingredients. Is pretty easy, does not take long to prepare and bake. Good plain organic yogurt is also good to give, sheep or goat yogurt is best, less 'sugars' than cows milk.

"Feeding fresh, unprocessed, organic foods provides more of the building blocks for a healthy immune system," says Dr. Lisa Pesch, a holistic veterinarian in Sebastopol CA. "Dogs who have allergies are more likely to be deficient in trace proteins and sugars (proteoglycans) that are used by the immune systems. Deficiencies in these nutrients will increase allergic response."

Same criteria goes for us as well. Stay off sugars, cut down on carbs and starches. Up good quality fats and eschew all sodas...! Of interest : Check out 'Inflammatory foods' and 'Noninflammatory foods'.

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Oh dear - BARF diet... Didn't anyone pont out the irony?

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Hahaha!

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Cheeky!! 🤣😂🤣😂

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Since getting it I have found that my daughter's mother in law and MIL's brother have it. My sister's best friend has it and my best friend's brother JUST got it last week and my neighbor across the street texted she has a friend with it.! Crazy how once you have it it is EVERYWHERE! But usually people who don't have it know NOTHING about it. And knowing it's the blood flowing to the muscles... I didn't know that until 3 months after I had it!! Good for the man!

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Are you safe to be around YB? Everyone you know has it! Are you contagious? Might we catch it too?

Oh! We already did! ;)

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YES!! I was mildly surprised that he’d heard of it, then he said the blood/muscle thing! Then he was aware of fatigue. Well I think it was at that point that I had to manually lift my mandible and reintroduce it to my face!!! :o

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MB: Dear Doctor, can you please recommend a good Plumber / Central Heating Engineer to investigate and fix my PMR, as neither you or my Rheumatologist seem to understand how it affects the circulatory system?

(Doctor's concerned reply): Mmm, Mr Benjamin, have you been smoking that whacky baccy again..?

MB: No, it's just that the Plumber did a great job on my heating boiler so I thought it's worth a try? :-/

Doctor (in exasperation): Ohh, give me strength.... :-(

MB: So how about a prescription for a can of pipe de-scaler then...? ;-/

Doctor (with head in hands): That's it, I quit. You just can't get good Patients nowadays..

:-D

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Ha ha ha!

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You mean this numbskull engineer had some some emotional nous!! Well what is the world coming too!! Blimey!!

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I think he was quite non-numbskully (there I go making up words again)

I had a lesson in electricity and reversed polarity. We conversed for nearly 2 hours!!! (Whilst he was working) and covered a multitude of subjects, including Dementia Villages in Scandiwegia, the Presidential election (no let’s not go there!) and an old chap, customer, who’d been discharged from hospital in a bad state, he went to repair a boiler and ended up sorting healthcare for the old boy by the sound of it. So maybe not a typical engineer?

Oh boy! 2 hours conversation is draining!

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Oh and I just remembered something else he asked.....”Had you been suffering with stress before you became ill?”

He was in a boiler maintenance van, but do you think he was a rheumatologist in disguise?

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Maybe he was. You never really know who people are. We had a carpenter once who actually had a degree in biology, but liked working with his hands. Another chap who used to come do "small jobs" for us (like repairing window screens or making a new banister rail) turned out to be an avante garde artist. Unfortunately our small jobs man moved to the North (thousands of miles away) and he appears to be irreplaceable.

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As our dear Boris ('Phwaa, Blobalob, Wha..' etc) would deduce with his usual razor-sharp precision: 'almost certainly a member of the Elite 'RUSGB' (Rheumy Undercover Secret Gas Boiler-man) reconnaissance-team attempting to infiltrate the hidden world of un-detected and dangerous (due to Brain Fog and Mood Swings) PMR sufferers'.

The Plot thickens..? Don't have nightmares...! ;-) :-/

Comrade Benjaminski... (or is it...) :-D

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He could always become a rheumatologist instead of a plumber! On the other hand he probably earns more as a plumber.

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Well he obviously gives a better service!

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A friend of a friend has PMR. When she heard I had GCA, she said "Oh, I know of that. You can go blind." I was amazed that she knew of it. Then she told me that she has PMR. However, she's not being treated for it. 'That bad scary Pred -- you need to get off that as soon as possible....oh you can't because of GCA'. I told her if me I would be worried about what the inflammation might be doing to my body and also of it progressing to GCA. And then I sent her literature to discusses this along with the Mayo report that Pred isn't as bad as originally thought. I never heard a word back from her on it. (I think that might have been a polite way to say 'mind your own business'). A few months later, she commented in an email that she's coming up on the 2 year anniversary of being diagnosed with PMR and is looking forward to it being gone. I sent her the literature that reported PMR lasts longer than docs are telling their patients. Again I got the sound of crickets regarding that. I worry about her, but I know that her treatment is her choice. (Heavy sigh.)

Love the story of the heating engineer. Life certainly dishes up surprises!

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Insight329 , You can lead a horse to water.......

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Exactly!

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Since I have been reading posts on the PMR/GCA forums, I've wondered how all the people that post about getting through PMR cold turkey are doing.

There must be a lot of elderly people out there too, that have undiagnosed PMR, that just write off their symptoms as old age.

Aren't we all lucky to be able to access the forums and believe the real experts who have the answers to everything regarding living with PMR? I can't imagine how anyone can get through it without this!

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yes! totally agree. The forum here has been indispensable in understanding all aspects of PMR & GCA. Great support system!

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How strange! A British Gas engineer came to service my boiler a couple of weeks ago, and he'd heard of it, too! Apparently, both his parents suffer from it.

Beginning to wonder whether the boiler's got PMR, too - it's really struggling!

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Hi Soraya,

We had a tiler in recently to do our kitchen. We got chatting and it came out that he had been diagnosed with PMR last year, and was trying to reduce his steroids. He had not been told about the risk of GCA, and not known about the risk to his eyesight. I gave him a copy of the fact-sheet from my Dr. and the advice on reducing slowly. I also gave him the link to this website so he can find help if he needs it. Word is spreading indeed.

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Dear Soraya_PMR,

I think the two landscape gardeners who are converting my back garden to an easier place for me to move around in, I have Klinefelter's caused osteoporosis, must be sick and tired of hearing about the trials and tribulations of GCA and steroids which I've had for four years and counting. They are both in their second marriages and have physical problems mostly caused by accidents to their limbs during work. They both like their food and I have tried to interest them in rice cakes to replace bread in their diets but they are an acquired taste, but I will persevere especially as I've fallen off the diet and gained over a stone which I am anxious to lose.

Colin

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I have to say Colin - I'd rather go without altogether than eat rice cakes!!!! IMHO, they are disgusting!!!!!!

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Absolutely agree. As Colin says they are an acquired taste. They do special flavoured ones nowadays too, they are just as awful.

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Corn/maize cakes are marginally less awful. I don't see a need for them - what's wrong with cheese in all its glory? At least with low carb you get other options!

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I don’t think I have ever tried a corn/maize cake, I probably never will except out of interest. Apparently the artisan cheeses are the ones we should go for. Our gut likes them.

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The marmite ones are nice

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Bleugh... How Marmite and nice can appear in the same sentence is a mystery to me...

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Haha. You know what they say.... and I LOVE it!!

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I love Twiglets. can't get them here. Are they still made?

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According to the internet yes - just google them for suppliers to the US and Canada.

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Yep Heron, still available in the UK at least.

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When our family went largely wheat free when our daughter appeared to have a wheat sensitivity in early childhood rice cakes became a mainstay. Lunch might be a rice cake with peanut butter (I know, I know, you don't like pb either), sliced banana in a semicircle over the top of the circle to make hair, almond eyes and probably raisins or currants for a mouth. I forget how we made the nose, maybe a dried apricot. None of the toddlers or little schoolchildren complained about this lunch, usually flanked by carrot and celery sticks as well.

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So glad you had a happy surprise! My toxic friend said her male friend has PMR and it’s a non event...quick tapering, no restrictions, didn’t miss a beat. Who asked her?

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I just cringed for you. I hope you have some invisible armor that you put on when you know you are going to see her so that her insensitive words bounce off of you.

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I learned to say yes, and move right along. I have been avoiding her so as not to rage and blame it on Prednisone!

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Sandy1947 I think if toxic friend was MY toxic friend, she’d very soon become toxic EX-friend.

She’s not a rheumatologist is she? “Non event”!!!!!! For her maybe!

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Love your response! She’s been friends with my sister and me since childhood but has grown more opinionated and toxic as she ages. I’m slowly backing away from the relationship.

Thanks for the laugh!

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I'm with you Soraya! My toxic friend here is definitely ex!!!!!

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It seem when we meet someone who has heard of or knows someone with PMR we feel validated and want to jump with joy ( if we could). There are people out there that understand! Yippie! Now for some kind of cure. maryanne

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I know I nearly burst into tears when a friend asked me how I was getting on. She really seemed to be interested..... Turns out she has an in-law with CSS, so much worse than PMR, but it does give her a bit of insight.

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I love how your post has been responded to with such wonderful good humor. You all inform, console, inspire and now give me healing smiles and often out loud laughs!! Thank you all!

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There’s a lot of humour here. I think it’s a PMR coping strategy.

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I categorically deny all responsibility for any alleged Humour that I might have ever introduced to this, or any other threads on this VERY SERIOUS health / social forum, whether intentionally or otherwise, and whilst under the influence of PMR and the Preds.

I blame the.. er.. those 'other' people from 'somewhere else' who are hell-bent on disrupting all of the the sensible content here in a dangerous and reckless way.

As my dear friend Boris in the UK would say: "Phwaa, Phwey, Flobbalob, Gor-blimey, this brazen act is a severe discombobulation of our tatifilariousness and eminent magnanimity, only surpassed by that of the Comedian, the late Sir Ken Dodd (rip)".

My view? Tell the Humorous Disrupters to 'GO AWAY and SHUT UP!'. That'll frighten them, and no messing! ;-) :-/

:-D

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Deny all you like. But evidence is evidence. You might like to consider mitigating circumstances? and could weave a plea involving pred and PMR. Or like you suggest, GO AWAY and SHUT UP may be the solution. But IME this tends to make The Disrupters worse. The Disrupters are possibly an invocation of J K Rowling, maybe we need to call Harry?

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Ok Soraya. But do you mean Real evidence or Fake evidence..? ;-)

Yes, I'll consider a Plea Bargain based on my general decrepitness due to my PMR / Pred affliction. In my defence, it's not my fault - I blame 'That Lot'.

But only on one condition: that I'm granted Diplomatic Immunity from invoking or inciting more (alleged) Humour here. That's my Final Negotiating Position, or I'll go to the PMR Police (aka 'The Aunties').

Let's see what JKR and Harry have to say..?

:-D

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Evidence, either fact or fiction will suffice. Providing it is in triplicate and a signature attached (a famous signature that could be flogged at auction would go a long way to proving your innocence)

We may have to discuss your dicrepitness (decrepitude?) with His Honour Sir Rumi Toligist, to see whether there is legal precedent re blaming ‘That Lot’.

Diplomatic immunity eh? Haha, are you pulling my.....hang on, you know The Aunties???? CASE DISMISSED!

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As my friends in the Manhattan (US) Jewish Community would say: "Evidence? Scchhmevidence!!!"

Ok, so I miss-spelt the 'D' word. But this is further evidence of my failing cognitive facilities due to the dreaded Brain Frog - and also being a bit of a Pred Head. I rest my case.

Yep - we have probably saved the PMR Aunties the hassle of getting involved with this very complex and distressing PMR / Humour Related Criminal Investigation. For that, I am truly appreciative.

Fake signatures? I'll put them in the post tonight... ;-) :-D

Thanks for the fun, and as always, 'Try to keep smiling on the Journey..'

MB :-)

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No - must be signed by his mum...

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.. or Teddy.?

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Please, it hurts to laugh this hard!!!

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Careful now vnett...! :-D

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