Free of PMR

[Heja1801]

Hi, in 2011 i was diagnosed with PMR and started with 16mgr medrol. Everytime we lowered the dose to 4mgr, i had to go back to 12mgr or 8 mgr because i was back in pain and my blood results were bad. End 2015 i've stopped the medication and went to another doctor. She put me on a detox and an other way of eating and drinking. In short, nothing from cow, no sugar, no alcohol, no refined stuff! We worked on my immunesystem and the gut. Following, i took some extra essential vitamins and minerals and now, at the end of 2017, i've lost 18 kgr (36 pound), my blood results are super, i feel super, no PMR any more and this at the age of 61. I just wanted to share this with you. greetings from Antwerp, Belgium

[SheffieldJane]

What a great story Heja, your body just needed support for the last bit. That makes sense. I can't think what practitioner would guide us through that in the UK. Well done! Not easy with all that wonderful chocolate to tempt you. Best wishes Jane from Sheffield, Yorkshire.

[Heja1801 in reply to SheffieldJane]

Hi Jane, my doctor does Functional Medicine, wich is common now in the US and it's booming in the UK. Functional Medicine treath's the real thing and it starts often with your immunesystem ...... In the gut. It's may sound weird but it's to only way to heal. Best wishes, Herman

[Marie1479 in reply to Heja1801]

So glad to hear you are well. I recently read the book "Believe Me" by Yolanda Hadid. I cried thru the entire book as there were so many similarities. She also believes in healing from the gut and followed a similar protocol. A colleague of mine who has RA (only 39 years old with 3 small children) was suffering so much. She decided to try the Paddison plant based diet and now although quite thin feels 200% better.

[PMRpro Ambassador]

I must point out though that after 6 years 75% of patients would be clear of PMR and off pred anyway. I don't doubt that the diet has made you feel much better and helped - but it may not be the only factor. I also lost 18kg pred-weight - while on pred.

Good luck for the future.

[Heja1801 in reply to PMRpro]

Hi pmrpro, of course, my general condition was on the base for pmr (in my case) overweight, stress, a kidney problem. At the base of this all was malnutrition and a weak immunesystem. A traditional doctor will rarely look for this. The real healing for all of us lies in a different diet, no sugar, no refined food,etcetc. I'm a believer. Best wishes, Herman

[powerwalk in reply to PMRpro]

PMRpro - how did you lose the weight? Seriously sick of this weight thing - even on a low dose of Pred now I can't get rid of any of the weight and I never had a weight issue. Thank you.

[Soraya_PMR in reply to powerwalk]

I think PMRpro may be away. So begging yours and her pardon, I’ll chip in here and say that it is from cutting carbohydrates from your diet. No biscuits or cakes or sugar in your tea. These are the simple carbs which are easily digested and will cause spikes in your blood insulin. Excess insulin in your body will lay down fat (that’s where the typical tummy fat deposits come from when on pred). And excess insulin also makes you feel hungry...catch 22! Potatoes white rice, white pasta, white bread will also come into the simple sugar category.

You can eat veg, meat, fats, butter, cream. Not too much fruit as they can be sugary.

I took a half-way-house route, cut out all simple sugars and had smaller portions of brown bread, brown rice, brown pasta. These contain the whole grain, and while they are still carbs they are more complex and take longer to digest in your gut, leading to a steady release of insulin rather than spiking levels, and no excess afterwards. They also keep you feeling satiated for longer, and maintain energy levels without the peaks and drops of sugar rush.

On my half-diet, I lost 5lbs in 3 weeks, but as I didn’t actually want to lose weight, I have gone back to full portions of ‘the browns’ and my weight is creeping up again. But it’s good to know I can be in control as and when needed. (Personally I have also cut out red meat, and have upped my oily fish as this makes me feel better. Plus I have potatoes, coz I like them!)

Treat yourself for being good with very dark chocolate, just a couple of squares daily. And to quench the need for sweet things, prunes are great for bone strength. But your desire for sweet things will lessen. Truly it will!

Google GI values of food for ideas of what to eat.

[Soraya_PMR in reply to Soraya_PMR]

Oh and I have a theory about artificial sugars (aspartame, saccharine et al). IMO the body thinks it’s getting sugar, wee-hee! Release the insulin lads! But no sugar arrives 🙁 so the insulin sloshes around, laying down fat and making you feel hungry. I avoid all the pretend sugars with a passion. I’ve always preferred smaller portions of ‘real’ food than chemical laden, low fat nonsense.

[PMRpro Ambassador in reply to Soraya_PMR]

Ta - you saved me a lot or writing! And yes, I am away but that makes no difference - if it is raining or dark I do the forum instead of reading or watching TV

[Soraya_PMR in reply to PMRpro]

Wasn’t sure when travel might interrupt t’internet.

[PMRpro Ambassador in reply to Soraya_PMR]

Within Europe it shouldn't since roaming was removed. My Italian stick seems to be working well most of the time wherever I am. And himself has splashed out on the in-house internet so he can watch TV and work on "The Book" just in case the stick is reluctant. Now he's sulking because Filmon seems to be sulking...

[Soraya_PMR in reply to PMRpro]

Oh dear, a male sulk! Time to do something that needs your undivided attention!

[PMRpro Ambassador in reply to Soraya_PMR]

Dinner?

[Lambethwalker in reply to Soraya_PMR]

Thanks Soraya, for the detail here - so useful. All makes total sense and I will carry on with renewed inspiration...

[Soraya_PMR in reply to Lambethwalker]

Good! You won’t feel hungry if you get it right, and you may find that you feel on a more ‘even keel’ I hope so anyway.

[powerwalk in reply to Soraya_PMR]

Thank you !!

[yogabonnie in reply to Soraya_PMR]

love this. sensible approach. I am doing the food thing no sugar no salt no alcohol but do not want to do too much more as I know perfectly well if I get too restrictive (and this is close enough!) I'll just give up. There is I think a fine line between enjoyment and deprivation!

[Soraya_PMR in reply to yogabonnie]

I agree. Whatever you choose for you has to be ‘do-able’ long term. We have enough to contend with without feeling deprived as well 😮

‘Diet’ always sounds depriving, but really it’s ‘healthy diet’ a recipe for life, not a prison sentence 🍷

[PMRpro Ambassador in reply to powerwalk]

I started with the 5:2 diet which helped me reprogramme portion expectation but I was only losing a very small amount of weight so I switched to low carb which I have found much the easiest thing to stick to. I don't eat bread and cakes in general anyway - I am allergic to something in the structure of the starch in highly commercialised wheat, the sort used for most mass-produced wheat products. I can eat spelt and rye (it isn't a gluten problem) so I do treat myself occasionally, especially since I can get wonderful bread here where I live! But the emphasis is on occasional!

Otherwise Soraya has said it all really. How much carb YOU can eat depends - you cut the carbs loads, and once you are losing weight add a bit to see how much you can eat and still lose weight at an acceptable speed to you. And she is quite right about artificial sweetners - they stimulate the production of insulin on the expectation of sweets coming. And it is the insulin that parks the excess carb on the hips and elsewhere as fat stores.

It really does change your attitude to doing it once you see the weight going - even if it is slowly. Sugar is also a strong pro-inflammatory and some people find that their symptoms improve once they cut carbs, flaring when they pig out on carbs.

[yogabonnie in reply to PMRpro]

5:2 ? I'll google it yes?

[PMRpro Ambassador in reply to yogabonnie]

"michael mosley 5:2" brought up appropriate links. add intermittent fasting and you will get parallel stuff too I would think. I still "intermittent fast" (grammar, sorry!) all the time - I eat between about 1.30pm and 8.30pm. Never feel hungry - honestly.

[yogabonnie in reply to PMRpro]

I love things like that. right now I am taking prednisone 3x a day and want a bite to eat..with each dose..but once I am on 1 dose a day I will try it. in the meantime I'll look up michael mostly 5:2 don't want to gain unnecessary weight!

[PMRpro Ambassador in reply to yogabonnie]

You are better taking your entire dose together, The preferred time is the morning, as early as possible. It is when it works best for YOU that matters. But all in one achieves a higher blood level and knocks the inflammation out better - and early in the morning is best because the inflammatory substances are shed in the morning about 4.30am. The sooner after that you take it, the less it has to do and the more effective it is.

[Judigardener]

There is a place in the UK that treats people holistically. It is called The Breakspear Hospital in Hemel Hempstead Hertfordshire. They have a website. Several people I know have been treated there for a variety of problems.

[PMRpro Ambassador in reply to Judigardener]

Hmmm - you must have well-to-do friends!!!!

[Judigardener]

NO just desperate ones.

[PMRpro Ambassador in reply to Judigardener]

Given the prices - I'd rather have a holiday!!!! Even after nearly 14 years of PMR...

[Judigardener in reply to PMRpro]

Depends what the problem is. These were not people with PMR.

One man’s marriage was saved - GP told him he was depressed. He was diagnosed with Lyme’s before NHS was more up to speed. Another was a boy fiattened with a virus — he couldn't get out of bed. His uni place was in jeopardy. NHS couldn’t sort him out. Breakspear did

So as I say depends how desperate people are. These two examples were people so ill they couldn’t have gone on a holiday.

[PMRpro Ambassador in reply to Judigardener]

Yes - should have said, doubt they could do a lot about PMR! So I'll have a holiday!!!!

[powerwalk in reply to PMRpro]

You have PMR 14 years?? have you ever been free of it??

[PMRpro Ambassador in reply to powerwalk]

Not that I'm aware of. It was 5 years until I got a diagnosis - it hadn't gone away in that time. It took 4 years to get below 10mg for more than a short time and I have got to 4mg for some time but then flared and had to go back to 15mg. I've just been down to 5mg but symptoms returned so have accepted 7mg is where I feel good. If the symptoms I get at 5mg are PMR, it is still there. I they aren't I'd be surprised, they are always similar and the same as at the start.

[powerwalk in reply to PMRpro]

Thank you for y our reply. 5 years before your diagnosis - crikey. When y ou say a "flare" - does that mean with your blood markers up? My consultant wouldn't even consider the word flare if the markets aren't up. Hence - her taking me off the pred!!! Even though I was in absolute agony.

[PMRpro Ambassador in reply to powerwalk]

I have NEVER had a raised blood marker - up to 20% of patients with PMR/GCA don't. No-one knows why, it is just so. And many patients don't develop raised markers while they are still on pred - again, no-one knows why...

My ESR hit the dizzy heights of 7 once, it is usually 4. CRP was high once, it turned out the blood taken during an episode of atrial fibrillation. But I have a high ferritin level - sign of inflammation, and in the early days a liver enzyme was raised which is often raised in PMR. But I had a GP who was ignorant of these facts - hence the 5 years non-diagnosis.

I'd be sacking that consultant - I want someone who treats ME, not the numbers.

[powerwalk in reply to PMRpro]

Ws that liver enzyme GGT by any chance???

[PMRpro Ambassador in reply to powerwalk]

Alkaline phosphatase - found in one third to a half of patients with GCA or PMR. I'd also had it years before during a strange illness which nowadays would probably be identified as ME - it was still yuppy flu then.

[HeronNS]

I too have been trying an alternative treatment, one which clinical research shows does reduce production of inflammatory cytokines. I discontinued the treatment earlier this year as both I and my physiotherapist felt it had helped me as far as it could. I believe it helped with my taper to a low dose of pred. So far so good. Since then I've flared and have not been able to get back to my low dose again. In fact things seem to be getting worse. I will let you all know through my posts about alternative treatment what the result is if I decide to get another course of treatment. I feel really guilty billing the insurance company more or less indefinitely, and was hoping I would not need to continue.

With regard to functional medicine, I found this website. sciencebasedmedicine.org/fu...

I'm going to suggest that in many cases our alternative treatments are acting as placebos. There is great value in the placebo effect. Maybe the light therapy I underwent was also a placebo. It never claimed to be a cure, only that it would work to reduce production of pain-causing cytokines. I honestly can say I had no qualms about discontinuing it when I did, believing it was no longer having any effect. It took several months for me to put two and two together and think possibly I should have continued the therapy, even at a reduced level, until PMR really burnt out. There were also other factors which contributed to my stress level so not a completely objective test.