I just wanted to share a recent experience of mine in the hopes that it will be helpful to someone out there. MIne is the typical PMR tale of woe - started at 15mg of Prednisone, went down and up a few times, got discouraged, suffered, cried. Last winter I got down to 2mg and could barely walk so I went back up to 4 - cried again. At that point I came out of denial and started to pay closer attention to my diet and was able to wean down to 2mgs. It wasn't perfect, still had stiffness and general soreness but put up with it because I felt better later in the day. Last month I went to visit my son who lives in Costa Rica. Where he lives is a health retreat off the beaten track. Because I didn't have a car, I couldn't get into town where the tiki bars and french fries were so I had no choice but to eat at the center where I had 100% organic food every day for two weeks - not one gram of sugar, zero wheat products, zero alcohol (well, okay, a beer in town one afternoon), zero coffee and zero dairy. I also was forced to drink a jungle juice concoction that my son made me every morning containing organic tumeric extract. By the end of the two weeks I had no symptoms at all - no stiffness, no aches anywhere, not even in the morning. I felt amazing. Since I've been home I've continued to be vigilant about staying with a healthy, organic diet and have been able to drop down to 1mg. I've had three rheumatologists and not one has said a word about inflammatory foods, which is idiotic because there is absolutely a correlation! So I'm just throwing this out there as hopefully a ray of light to anyone who is suffering and hasn't discovered yet the connection between what we eat and how it affects our bodies and aggravates this dreaded condition that we're dealing with. It's been frustrating to feel that PMR has control of my life, but I'm pretty convinced now that I'm back in control. As Martha Stewart would say, "And that's a GOOD thing!"
That's very encouraging and I hope it continues. It certainly gives food for thought......no pun intended. I know it has been mentioned many times that cutting carbs helps prevent the weight gain. I am aware that when I don't have carbs I feel better. It's sticking with it that's the answer. Thank you for sharing this information.
It was a delight to read your statements! I too learned from the eating of anti-inflammatory foods--did go to a talk sponsored by University of Arizona Artheritis Foundation. It helped me so much. The list is intereresting if you want it. I am very interested in the tumeric extract and will look into it for my morning drink. I too hae had trouble reducing Prednisone--Feb 1 down to 1 and had a flair--now back to 2. Rheumatologist told me it happens to many of his patients and to go back up a little for a month, then reduce to every other day ....
Thanks for your encouragement for us all.
Diane , your story makes me so jealous. I want to
go to Costa Rica! I know we should be able to stick
to the diet at home, but what a joy to have it made for
you.
Keep up the good work,
Caroline xx
Hi Diane .... wise words. I have also (with the OK of my rheumatologist) finished with the dratted prednisone after only 18months and wondered why I still had this stiffness (unfortunately I have had no information or advice and only recently found this 'discussion'
Your 'words of encouragement' above are just what I needed as I am prepared to do anything so's not to have to go back on steroids.
A friend suggested turmeric capsules which I now swallow twice a day !!
I have managed to lose just on 2stone (the effects of steroids !!) and don't intend picking up the weight again. Zero dairy, wheat, coffee etc etc sounds good to me.
Thanks and please keep in touch, Lyn
I am feeling much better since going on a wheat free diet- not so cold from Raynaud's; breathing better; less urge incontinence. Who knows- all that may be due to gluten free, it may be normal remission happening, or it may be the high dose anti-inflammatory statins I am taking. I am a sample of one with lots of confounding variables. But the improvement, as I said, could be partly due to wheat-free. Hey, I need all the help I can get! Not being able to breathe is miserable.
Very interesting
I've tried to buy organic lately, where it's available. I may consider the non-dairy and wheat free diet also. I have a bag of organic turmeric and am curious as to how much I should consume daily. It's in a powder form. Do you know what your son put in the turmeric drink?
Glad to hear, I'm at the end of my second year on Prednizone 5 mg and hoping to drop again soon but had a couple of surgeries recently so I didn't want to rock the boat.
It's VERY hard sticking with it especially on higher doses of Pred. I remember the dark days when I first got PMR and ate all night long like a racoon. I gained 15 pounds, which is a lot for me because I'm only 5' tall. But the weight comes off and it gets easier as the dosage gets smaller.
When you say "the list" do you mean list of anti inflammatory foods? If so I would love to see it. I seem to have trouble finding out exactly what is on or off the list. Every time I google it I just get sites that want to sell a book.
Ron
I would love to have you list if possible. I was diagnosed with PMR July 2015 and at 7.5 mg of Prednisone now. Still having stiffness in my hips/thighs and my shoulders. I'm 54 and walked 3 miles a day before PMR. Now my legs hurt so bad when I try to walk I can't even walk a mile.
A couple of people have asked about the tumeric. My son, Luke, used coconut water, honey, pepper and I'm not sure what else was in there. You're suppposed to use pepper with it for some reason. I met a man in CR who said that when you grind pepper, it loses its potency right away so you need to grind it fresh. The honey had a purpose to but can't remember what it was. This man makes organic tumeric tinctures so I bought a couple of bottle from him. If you take this tincure, you don't need the pepper or anything else. He told me to take two to three teaspoons a day, no more than that, to start with two, and take them six hours apart. He also said that I might get a rash on my back but that's not anything to get alarmed about, just decrease it a bit. Good luck!
Costa Rica is beautiful. Try to get there!
I still have the eating problem as I am on 9.5 though it isn't as bad as it had been. Thank you for the encouragement and looking forward to the weight coming off. I'm 5'8" which helps but it's where the deposits are that give a funny shape. There are far worse problems for people so I'm not complaining.
That is good information Diane. I try to eat a very healthy diet. It is difficult because I am also taking warfarin to thin my blood because of blood clots (Deep Vein Thrombosis - DVT) that I had in my leg a year ago. I am on warfarin or its equivalent for the rest of my life, so foods rich in vitamin K must be avoided, especially kale and spinnach, both of which I used to eat frequently. This getting old is a tough business. I think my 70 year warranty expired last year, but I am still lifting weights, doing yoga, and golfing. I may be on the downhill side of life but I am digging in my heels. Stay active and stay well Diane.
I've been finding closer attention to my diet (which was already pretty healthy) has helped me. I didn't realize how much wheat I was consuming over the course of a day. I went off it completely, found I had indigestion when I tried to eat it again, so now I havve a small amount once in a while just to keep whatever microorganisms like wheat happy. Same with dairy. Haven't eliminated anything, but have drastically cut back. Also I never was one for fatty, fried foods or much sweet stuff including soft drinks. Have reduced to 6 mg from start at 15 in June 2015. Feeling good!
The piperine in black pepper makes the anti-inflammatory agent in turmeric more bioavailable, otherwise you'd have to eat vast quantities to get any benefit! You can google it to get more information.
I, too, would love to have the list if possible. I am rather stuck on 8 mg Pred and also have gastritis probably caused by the steroids. So would be doubly grateful for it !
Thanks very much , hope you manage to get back down to 1 mg again soon with no more flare ups.
What an amazing holiday ! My daughter went to Costa Rica in her gap year and helped to plant trees with WWF. She said it is a beautiful country. I am interested in using turmeric a bit more. I do put a little in my homemade soups, but never know if I am using enough. Also it is only supermarket turmeric , so possibly not good enough ?
I hope you continue to do well back at home.
Just add a little black pepper to your soups as well, that will boost the turmeric's properties. I don't think any of us should be relying on one thing or another to help us out - we need a range of foods and strategies. It's nice that something as accessible and flavourful as turmeric (and ginger!) is so good for us.
I couldn't agree more on the importance of diet with PMR. I researched the pred diet when diagnosed 7 weeks ago and went sugar free (apart from in fruit), salt free (cook from scratch), carb free, caffeine free, alcohol free and lots of water. Spoonful of turmeric in warm milk, fresh ginger in herbal teas (anti-inflammatory). Have lost weight and have very little pain having dropped from 30mg to 25mg but slowly to avoid flares. I split the dose and find 20mg 6am and 5mg 6pm suits me better than 17.5 and 7.5. It's trial and error. My high blood levels have come down quickly from rather high to within the normal range and I think the diet has helped considerably. I do not have a ranging appetite so when I want to eat something I snack on mandarins and small apples and kiwi. I feel the only thing I can control in my life at the moment is the way I eat so its rather a hobby. Lots of natural bio yoghut too. Amazing experience in Costa Rica. How lucky! And so glad you feel Back in Control!