New to Forum. Question about medication and diet

Thank you for such a fast reply.  Glad to have confirmed that I really don't need other meds.  But, we all wish for anything while having PMR.I was already on a low carb diet when I was diagnosed with PMR.   I almost thought the diet was the issue.  But, the doctor said no...   Anyway since months before PMR onset and six months ago, I lost 30 lbs.   It really works for me.     I'm still on the diet, but focused on the cold water fish, tumeric, garlic, etc also.  I've gain about 5 lbs back.   But, am able to maintain that.  Another 10 lb loss and I would be about "normal".Thanks again, I will continue to participate in forum if useful.

Good to have you on board even if none of us want to. be on this cruise! Christina 

Is there a web site to read about the anti-inflammatory diet? My father needs something to help him make progress at 4 years into PMR. 

Hi there gpgp, all I did was Google anti inflammatory foods / diets and loads of pages came up and I simply mix and match those foods with the low carb foods. Sorry to hear that your father still is suffering with PMR 4 years on but that's the trouble with PMR the condition will burn itself out when it's good and ready and not before. But I hope he is managing to reduce, but slowly slowly. All the best, christina 

Thanks will try that and Google scholar to see if there is any scientific evidence as well.

Thank you, too, for such a fast reply to my discussion.   Having read so many of your insightful posts,  I am honored to receive your response.I am located in the US --- North Carolina.  I grew up  and lived most of my life in California, however.   It took longer to find a rheumy because there are not that many covered by my insurance AND and I researched the ratings so I could find a good one.   I believe I have..... But, waited months in pain, in the meantime, not knowing what was going on.I didn't know I could cut the pill until I read one of your threads about the groove (indent?) in the middle of the pill, which mine have.    So, I'm happy about that.   Scared about the reduction, but ready.As you might see in my post to Christina33694, I have been on a lo carb diet for almost two years.   Lost the 30 pounds in the first year.  Need to loose 10 more.. but have gained a couple back in recent months.How do I contact MrsO to discuss her views on this diet? 

CeeJay

If you started steroids in August 2013 and reached 7mg 6 months ago, then that is no mean feat!  You may have reduced rather too quickly from your starting dose, hence hitting a stumbling block at 7mgs.  Around the 7mg dose is where your adrenal glands will be trying to get up to speed again manufacturing their normal supply of cortisol (steroid) which has been suppressed by the oral steroids.  Hopefully, you will have far more success when you embark on the very slow half mg tapering regime which will take about 7 weeks to reduce from 7 to 6.5mg.  I did this following a flare at the 5mg leve and it proved successful all the way to zero.

I quickly researched anti-inflammatory foods following diagnosis thinking that it was one way that I could regain some control over my life after having beein bedbound for many months whilst undiagnosed, therefore untreated.  

The mainstays of my diet were oily fish (sardines, mackerel, salmon, trout) several times a week, plus daily beetroot, avocado, garlic and turmeric in suitable meals.  Good foods to include are asparagus, garlic, fennel and melon to help with any steroid-induced fluid retention.

I avoided processed foods and refined carbs, substituting sweet potatoes for white potatoes where possible.  Such foods turn to sugar in our bodie and could add to the risk of steroid-induced diabetes.

I avoided coffee (except for the occasional cappucino treat!), sugar and alcohol - these all place stress on the adrenal glands which are already suppressed by the steroids.

We had a dietitian speaking at one of our PMR support meetings who recommended the phytonutrients in plants, predominantly flavonoids, which are anti-inflammatory substances, found in cruciferous vegetables, berries, soya, red peppers, tomatoes, beetroot, carrots, green and black tea and (best of all) 70% dark chocolate!  In stating that high blood sugars are pro-inflammatory, she recommended low GI foods including oat based cereals, wholegrain/granary bread, noodles, pasta, basmati rice, pulses and legumes.

Of course, none of these foods cure PMR, nothing does at present unfortunately, but I found that if I veered off the foods for any length of time I would notice increasing stiffness/pain, particularly noticeable if I missed out on the oily fish.

I do hope this helps and good luck with the slow tapering.   

Well done on the weight loss! And you have confirmed a suspicion I had about "instant specialist appointments" in the US. Like here, you can see the doctor no-one else wants to see...

Remember though - you aren't necessarily heading for zero pred in a home run. You may find a dose that does the job and the next down doesn't. if the autoimmune bit is still active, you will need some pred.

Thank you for reading my question.   I will continue to study your input and that of the dietitian you wrote about.    Mostly, I have followed the guidelines you write about.   But, I believe I need to be more diligent.     

Here are some specifics that you might have some input for me, as your time allows.       I'm trying very hard to keep the carbs down, so I don't usually have oats or grain, noodles or pasta.  To get some fiber I have one slice of whole grain bread with a protein (At times tuna to get the anti-inflam).   Now you confirm, as I have otherwise read, that I made need more of this for anti-inflammatory?  I'm also concerned about fiber.  I make flaxseed muffins, occasionally.    

I eat lots of berries most every day (strawberry, raspberries, blueberries) and am somewhat good about vegetables.   I'm trying harder on this.   Mostly, broccoli,  spinach, asparagus and salads and lots of avocados.

i have "lox" for appetizer about 5 times a week.  Love, sardines, anchovies in my ceasar salads and eat salmon for dinner a few times a month.   I think I need to up this based on what I'm understanding.

I have a jar of turmeric that I sprinkle in lots of food.   Try to use garlic and olive oil in cooking.  Can't have ginger in the house since my husband is very allergic to it.  

I am very good about not eating refined sugar.   No desserts or sweets.    But, I have never been a dessert person.   So, this was the easiest part.

Now, on the downside I do love my coffee  in the morning and cocktails in the evening.     I didn't realize that coffee was so bad.   But, have read about alcohol.   My rheumatologist said that he is okay with my routine.   But, obviously has said in moderation.  These  are obviously two routines that add to my quality of life.   Your thoughts?

Sorry for being so long winded about this.   But, I'm excited about hearing from people who have such knowledge as yourself.

CeeJay - I don't panic too much about "fiber". Providing your insides are working well, you have enough, and fluids are just as important in that contect. The fruit and veg you are eating is contributing a fair bit of fiber. I eat almost no bread or baked goods of any sort, it is very much a treat. That is mainly because I have a wheat allergy so baked goods would mean homemade - and I'm lazy! My husband wouldn't eat a piece of wholegrain bread if it was the last piece on earth!

I try to eat fish as the main protein at least twice a week, sometimes 3, and I think MrsO does too (she is a lot more conscientious than me). Some fish is better than others - oily fish is better than white fish and fresh tuna is far better than tinned tuna if I remember rightly. MrsO's conscientiousness also expresses itself in beverages - I rarely drink coffee but am a tea-Jenny and having tried with and without wine - I'm not giving that up either since it made not the slightest bit of difference to the PMR! But beware with cocktails - there can be a lot of hidden carbs in them!

I think MrsO will agree that it is something where we are all different and a bit of experimentation is called for. As I say, I had a month or so with no alcohol, I didn't feel any different in terms of the PMR - and drinking water all the time gets a bit boring! I never drink soda of any sort, they are all so sweet to my taste. But I only drink wine - spirits maybe once a year...

My rheumatologist has said the same thing.   He has other PMR patients and said that a large percentage have been on Predisone for many years.   He said that if we can get it under 5mg, over time, that would be good.    Obviously, the lower the better.  

I have started the reduction cycle only two days ago.   So, will keep in touch as I progress.    My thought is -----even with such a slow reduction ---- if I feel slight pain should I go back up or try to see if the minimal pain subsides.    When I'm out working, I feel fine.   It's only when I sit around that I feel some aches.  Any thoughts?

Really, if you are using my version of the slow slow reduction I don't think there should be any pain - after all you only ever do 1 day of the new dose at a time. If I had a stiff day I repeated the step I was at a couple more times if I was down to the stage of just a couple of days. If I felt stiff the first few times I found it usually disappeared by the third day of trying the lower dose (does that make sense? Wouldn't it be nice to sit down together with a sheet of paper and a cup of something!!)

Of course - it may be you are still experiencing the myogelosis - the stiffening of the muscles after being immobile - which is a feature of PMR. Movement is very good for that and it will eventually fade to be almost non-existent.

Where did you find your rheumy? He should be cloned! We have so many people from your side of the pond who are faced with rheumies who are terrified of pred and try to force them off it - with the inevitable results!  Where in NC are you?

CeeJay, not "long-winded" at all - instead, very interesting reading how similar your diet is to mine, in fact probably better than mine in that you say you have never been a dessert person.  Now that is where I have to use all the willpower I can muster these days post-PMR/GCA/steroids.  During my treatment years, if we ate out my hubby would have dessert and I would just have the tiniest taste of his.  I'm afraid my 'halo' has slipped a bit since then!

I couldn't agree more with your rheumy's comments about everything in moderation.  I feel as far as the coffee is concerned that if it is one of your real pleasures that you can't do without because it adds to your "quality of life", then continue to enjoy it.  Perhaps trying to restrict it once you get to the doses below around 7mg would be particularly helpful as it is around that dose that your adrenal glands will be trying to kick back in with their pre-steroid natural cortisol production - as coffee places stress on the adrenals it can't be helpful at that stage.

My drinks are solely decaffeinated tea and water. Most of my food is organic - though expensive I feel happier knowing that it contains less pesticides etc.  

I swear by 'live' (probotic) yoghurt for protecting the stomach from the steroids, and another daily food I never go without is a teaspoonful of Manuka honey with a guaranteed activity of at least UMF 10+ or 15+ - excellent for the digestion and helping to avoid any reflux problems.  

As Eileen has pointed out, you are getting plenty of fibre from your veggies ands fruits.  The dietitian's suggestions are not cast in stone, so only have the oats etc if you would enjoy them.

As Eileen has rightly commented, we are all different individuals - we can be a little different in the way we present with PMR and/or GCA, and different in our response to the steroids.  Hence we can tailor our anti-inflammatory diets to suit us.  You sound as though you are doing brilliantly already, so please don't get too hung up about it, and good luck.    

I only know one other person (an 85 year old acquaintance ) who was just diagnosed with PMR.  No one I'm aware of has even heard about the disease, including my GP.   So, believe there is a real lack of knowledge here in the states.    We live about 30 miles from Charlotte.    But, my rheumy is close to me and not one of the "Charlotte" professionals.    There are other parts of NC that are reported to have very high health care such as Asheville and our Raleigh/Durham area which has Duke University Medical Center.

Glad to hear that you enjoy your wine.   Would be depressed if I thought we all had to totally abstain.     However, my enjoyment are Manhattans.   My GP reminds me of the carbs and sugars which  doesn't  help the weight loss.   But, I lost the weight while still having cocktails.    I assume I need to do the same about PMR and Predisone and monitor carefully.      In the meantime, cheers😊.

Backatcha - with my glass of white, probably Austrian Veltliner tonight ;-)

I hear that is a very nice wine. Have not tried it, yet, but it is available at some of the wine stores.

Zum Wohl! 

Within my circle of friends, I know 3 other people who were diagnosed with PMR. Here in Northern Virgnia, one woman, now ca. 70, had it for 2 years and has been off Prednisone for over a year. A man, now 66, who also was done with it several years ago. In Maryland, a third woman, also ca. 70, had it twice. The first time, she used Prednisone, but got off it quite quickly. The second time, she went without Prednisone and the PMR was difficult to deal with. Have not seen her in a while, so cannot report on her progress. I also know of an 85 year old woman, a friend of a friend, who had it.

I have lived in this area since 1972 and other than the people I mentioned above, only my son in law (an ER doc in Oregon) and my Primary Care doc, and my current Rheumy know what it is. My first Rheumy had no clue, When I mentioned it to the orthopedist that I had been seeing for a Baker's Cyst at the time I had undiagnosed PMR  (at least 4 times), and described my symptoms to him in detail, he did not mention PMR. It was only when I saw him (after the Rheumy finally diagnosed me) and told him what I had, did he recognize it.

So yes, I agree. it is not well known here. 

According to a paper I found on line (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3897167/)

"PMR is the second most common inflammatory autoimmune rheumatic condition in the United States. The estimated annual incidence of PMR is 58.7 per 100,000 people aged 50 years and over."

It was! Danke!!!!!

A couple of issues I wish to explore.   Both the yoghurt and manuka honey.   Although I don't seem to experience any digestive problems, I'm concerned about long term.   Any further insight  would be appreciated.

Also, vitamins.   As  my GP and rheumy recommend, I take 5000 mg of vitamin D.   Also, take some b12.     However, I don't seem to get much feedback on the calcium I take.    I have mild osteopenia.   I read in other threads about taking magnesium with calcium.....   And others just have problems with calcium.        Some days, I just don't take the calcium.   I try hardest to remember the vit D the most.  Might you or Eileen or others have thoughts on this?

Hello ceejay, I take daily, 10 micrograms of vit d, 38 micrograms vit k, 500 mgs calcium, 188 mgs magnesium, 500 mgs vit c, 14 mgs iron, vit b complex, RDA amount and 1 gram cod liver oil.

the vit k, calcium and magnesium and half the vit d is 1 tablet, and the other half of vit d comes with the cod liver oil tablet. Do any of these tablets do me any good at all? Well taking them makes me feel better physiologically. You should always take magnesium with high doses of vit c as it helps prevent kidney stones. Also you should always take half the amount of magnesium to calcium, why, I'm not sure, I think I read it somewhere.Christina 

The recommended daily supplement for calcium is 1200mg equivalent of calcium on top of a normal diet (that's 3000mg of calcium carbonate for example). You shouldn't take too much calcium, it is one of the supplements where more is not necessarily better. In Europe we are given supplements that are combined tablets with 600mg calcium plus 400 IU vit D3 and told to take 2 tablets per day. This makes it easy: pred for breakfast, calcium/vit D for lunch and dinner - because you shouldn't take pred and calcium close together and you shouldn't take more than about 600mg calcium at one go as the body will not absorb it all at once, take it in 2 lots and you will absorb far more. Vit D should always be taken with a small amount of fat as fat is required to transport vit D from the gut into the blood stream.

Your vit D supplement is fine, in line with the latest recommendations, and I also take 5000IU over and above what I take in the combo tablets. Anything up to 10000 IU is OK, especially in the winter when we can make almost none from the sun - if you are out in the sun a lot around midday in the summer then 2000 IU is probably enough.

You need both calcium and vit D because pred increases the way calcium is turned over in the bones. It has been found that using calcium supplements prevents too much calcium being lost from the bones in some way. I have only ever taken these - no alendronic acid - and my very slight osteopenia from over 5 years ago has not progressed while being on pred. 

Magnesium is felt to be good for bone metabolism and also helps if you are prone to muscle cramps - it happens to some people when on pred. Don't take too much though as it can cause diarrhoea!

I used yoghurt whilst on pred and never had an upset stomach - some people do with pred and often omeprazole (or another PPI) is handed out as "stomach protection". Unfortunately, one of their side effects is preventing calclium being absorbed and this can lead to osteoporosis on its own! PPIs can also cause gastrointestinal upsets (bloating and wind) as well as a few other unpleasant effects. They also don't work effectively in about a third of people (doctors seem never to have heard of any of this!). Less drastic but just as effective is ranitidine (marketed as Zantac).

Can't comment on the Manuka honey - I have never used it. I don't get many infections anyway, maybe 1 cold per year, even on pred!

Hi Eileen,

Habe also endlich den Gruenen Veitliner probiert. Ein koestliches Troepfchen! Danke fuer die Empfelhlung. Hat mir richtig gut getan!

CeeJay

I wasn't offered any bone protection meds such as Calcium + Vit D whilst on steroids, and wasn't aware of the need - we weren't lucky enough to have such advice circulating on forums such as these when I was first diagnosed over eight years ago now.  Luckily, my bones didn't lose much density, other than falling just slightly into the osteopenia range but not to the extent of needing treatment.  

I was, however, prescribed stomach protection pills (the PPIs Lansoprazole and Omeprazole) but reacted badly to them, so decided to take a 'live' yoghurt each morning before the steroids knowing that it was a good stomach liner.  It worked a treat, and probably at the same time the calcium it contained helped to protect my bones, along with various other items in my diet.

I do now take Vit D3 but only in the winter months and only 1000iu daily - I have only one kidney and that is low functioning so for me high Vit D doses could possibly cause too much calcium to be absorbed into my body which would be detrimental to my kidney.  My last 3-month winter course of Vit D took my Vit D levels to 89, so safely into the normal range (75 to 150/200 depending on the health authority).

The Manuka honey is good, not only, to help prevent reflux, but to help boost the immune system as well as having a whole range of benefits - look it up.  

My favourite white wine is one from Franken (northwest-ish of Nuernburg) made from Bacchus grapes - some Veltliners are very similar and are allowed a passport to Italy, which Franken wine doesn't get!!!!! 

Hello Paula, I don't know of any one else with this condition but just after I was diagnosed I phoned a friend who is a chiropodist and works once a month in an old peoples home, before I even finished telling her my diagnoses, she said that it sounded like PMR. When I replied that that was what I'd been diagnosed with she told me all about the condition and the treatment, and she knew all about it because a lot of her clients suffer from it. Also when I had my new patient appointment at the drs surgery where I am now, the nurse was very very informed. She later told me that her previous position was as a nurse in an old peoples home and again, there were many people over the years who had the condition. Christina 

Like many others, I have been given lansoprazole in conjunction with pred but looking at the risks and your comments I would rather try the live yoghurt option which I put to my doctor.  His comment is 'no, definitely not unless I am prepared to run the risk of a stomach ulcer'.  So my question is: 'Is the possible risk worth it for the benefits'. I would like to think YES.  I am 70 and just about to try a reduction to 8mg pred.

I don't know anyone on pred who uses yoghurt who has had any problems. I know more who find problems with PPIs. If I needed pills for stomach protection I would certainly prefer ranitidine (Zantac). But I doubt any of us will ever convince a doctor who was brought up with the story of the miraculous pill answer to everything...

Thank you Eileen.  That is the answer I was hoping for and as you have said, there are a number of benefits with yoghurt in respect of the osteoporosis risks.

Diana

"His comment is 'no, definitely not unless I am prepared to run the risk of a stomach ulcer".

My wonderful rheumy's comment when I mentioned concern about the risk of having a 'burnt out' stomach (dramatic words for an ulcer!) if I stopped the Lansoprazole/Omeprazole due to their horrid side effects was:  " I've never seen a case of it yet"!  Live yoghurt over a PPI any time for me. 

 

I appreciate your confirming my views that very few people know about PMR  here in the states.   The bigger challenge is explaining it to relatives and close friends.   They usually assume it's arthritis or bursitis.    Can't do much to change their views.    And, it really isn't something I want to burden them with.   Except my mom who has already done her internet research.   

Looked at the link you provided.   Wow, what a huge amount of information.  Don't really comprehend half of the scientific terms.   But, will go back to site to pick out the articles that I want to read more.  Might send my mom this link.

Thanks

The NE of England support group charity compiled a DVD with physios, rheumies and patients to explain to the family and friends of their members what PMR and GCA do to us. It is called "You are not alone". There are still copies available and I understand it is now possible to pay for it from abroad.

The site is the first link in the first post of this thread:

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

Thank you MrsO. Love it !   I shall definitely put the PPI medication to one side and add yoghurt to my breakfast routine. 

Wanted to get your thoughts on my current predisone.   Although I barely started the reduction plan, I'm in more pain than usual.    I don't think it has to do with the reduction, since, as you've said its only one day.   But, I've had to change my plan (for the near term) and I've been back up to 8 mg for a couple of days -- and not the usual 7  that  I was on for many, many months.Here is my thought on this.   In Dec, the rheumy put me on  Hydroxychloroquine which was to help me reduce predinsone.   He said it would take about a month before it would start to help and before I should start reduction.   Well, I got severe diarrhea and quit  Hydroxychloroquine only two weeks ago.    I'm thinking that it messed up my predisone dosage and I need to get back to a regular, feel-good condition before beginning the predinsone-only reduction cycle (again).   At times, I'm feeling that I need to go higher than 8mg.  But, not doing that yet.I am a definite believer that the predinson reduction plan should work.   But, got messed up.   Your thoughts?

Maybe - hydroxychloroquine isn't used in PMR in the UK. It may work as a steroid sparer in other forms of inflammatory arthritis but I have to be convinced it does anything in PMR. 

In about 1 in 5 or so of patients with a diagnosis of PMR at the outset, the diagnosis is changed later, often to another inflammatory arthritis. It is very likely that the patients who have benefited from any of these so-called "steroid sparers" either don't have PMR or not pure PMR and so the second drug helps them manage with a slightly lower pred dose or to reduce slightly more easily.

It often seems to happen that someone gets their dose down a bit and then has a flare of symptoms. Stopping the second drug is a big upheaval for the body, any stress is enough to make PMR flare. I don't for the life of me get why, when a patient is happily settled on a dose of 7mg the doctor feels a need to mess about with adding in unknowns. The vast majority of experts on PMR feel that 7mg is a fairly acceptable dose, it is what is called a "physiological dose", about the same amount of corticosteroid the body makes anyway and the side effects are not excessive. By adding in the HCQ he's upset your body and that has led to an INCREASE in pred dose - the opposite of what he wants. It may be that your body needs 7mg for a bit longer - 7mg is often a real sticking point for many people.And if you had bad diarrhoea it is possible you didn't absorb all the pred for a while - and that would easily cause a flare in symptoms.