My first post!

I am a new boy on here. PMR/GCA diagnosed about 4 years ago. Been as high as 60mg pred and even down to 8mg with the help of methotrexate. Now off the MTX as increasing dose was making me worse, now on 17mg pred. The steroids seem to have caused osteopenia, unusual for a man my rheumy says, and also tipped me over the edge with type 2 diabetes. Bloods tests also discovered I have MGUS, it's sometimes called paraproteimia. Can add arthritis, cataracts and glaucoma for good measure, also BPH and hypertension. Could be worse I suppose!

[DorsetLady PMRGCAuk volunteer]

Just keep your sense of humour😉.

Please don't tell me you live in USA! Now that would be a downer!

[Hidden in reply to DorsetLady]

In the UK!

[DorsetLady PMRGCAuk volunteer in reply to Hidden]

Be thankful for small mercies then!

Take care

[Mimitenk in reply to DorsetLady]

What's the downer?

[DorsetLady PMRGCAuk volunteer in reply to Mimitenk]

The President elect!

Although we don't usually do politics! Enough to worry about.

[granny-b]

Hi. Welcome to a very knowledgeable and supportive group.

You don't say how you feel on a day to day basis but you obviously had a lot to deal with over the 4 years. I wish you many good days and great people on your care team.

[Hidden in reply to granny-b]

I don't feel very well most of the time granny-b, I take Naproxen or Ibuprofen and also Panadol Extra, try to do without them but give up during the day. Rheumy thinks I have general arthritis as my inflammation is down, but I am not so sure.

[Ida-June128 in reply to Hidden]

I am sure those better genned up than I will tell you but I was told I could not take anti-inflammatories such as Ibuprofen whilst taking Pred.

[Jenda13 in reply to Ida-June128]

Hi Bananaman, I have just checked my leaflet again as I was sure I had read that as well and Ida-Jane is correct. That was a tablet I used to resort to before being diagnosed with PMR and was surprised to see ibuprofen or any NSAIDs can effect preds. I have started today on turmeric as an anti-inflammatory so will see how that goes and will let you all know. Fingers crossed I get some good results.

[PMRpro Ambassador in reply to Jenda13]

They don't affect the preds - it is the fact that both NSAIDs and pred even on their own can lead to irritation and even bleeding of the stomach lining, Together the risk is even higher. The occasional use for a headache is probably not a problem - but regular use is to be avoided.

However, one lady with PMR symptoms was told by her GP to use ibuprofen for the pain, no pred - after 3 doses she ended up in hospital with a gastric bleed! Even the occasional use isn't without risk for some people it seems.

[Hidden in reply to Jenda13]

I took Ibuprofen before I was diagnosed, the rheumy didn't say don't take it but thought I wouldn't need so much. His understudy suggested Naproxen which seemed worse on the stomach, but I now have the gastro resistant version. I also have Lansoprazole on standby, but that shouldn't be taken for long periods.

[PMRpro Ambassador]

How do they know it was the pred? Did they do a bone scan right at the start too?

OK, I'm a woman but I had osteopenia - at a perfectly acceptable level though - before pred and it has barely changed over 7+ years. Even though 4 times as many women develop it as men, in the USA there are something like 12 million men at risk. It really isn't that unusual.

And do satisfy the curiosity - where are you?

[Hidden in reply to PMRpro]

I am in the UK. Don't think I had a Dexa scan until my legs collapsed and an MRI revealed I had fractured a vertebrae falling on my back.

[AnnThomasina]

George Bernard Shaw is supposed to have had osteoporosis, he climbed an apple tree when he was 92. fell and broke his hip and died.. I just thought I would pass that on.

[Hidden in reply to AnnThomasina]

Thanks for that Ann, wish I could still climb a tree!!

[Admiral06]

Bananaman, sorry to hear about your very difficult condition. I suffered a severe spinal injury in 1996 which resulted in a 40% height loss of one vertebrae in my lower lumbar spine. The vertebrae, numbered L-4, was also broken into 3 pieces. When I was diagnosed with PMR and started on steroids, I feared that if this injury (which had amazingly healed) were to be further compromised by bone erosion or osteoporosis, I could possibly wind up crippled. I asked my doctor to use injectable depo-medrol, which reduced the cumulative total steroid use by 40% compared to oral pred. I next researched calcium so I could start a regimen that would keep my bones strong and healthy. It is as follows:

Calcium Supplementation

Calcium is essential for optimal bone health throughout your life. Although diet is the best way to get calcium, supplements may be required if your diet falls short. Before you consider calcium supplements, be sure you understand how much calcium you need, the pros and cons of calcium supplements, and which type of supplement to choose.

With respect to calcium supplements, the four most commonly available sources are listed below. As one can see, the percentage of each that can be assimilated by the digestive system and incorporated into the bone is highly variable. Moreover, while insufficient calcium intake is a serious problem, recent research indicates an overload of calcium caused by drinking too much milk, along with taking calcium supplements or antacids, can cause a host of serious side effects. These include: hypercalcemia, (a shift in the body's acid/base balance towards alkaline), calcinosis and nephrocalcinosis, (calcium deposits in the tissues and kidneys), kidney stones, plaque in the arteries, and an increased risk of heart attack, stroke, and kidney disease.

• Calcium carbonate 40 percent elemental calcium

• Calcium citrate 21 percent elemental calcium

• Calcium gluconate 9 percent elemental calcium

• Calcium lactate 13 percent elemental calcium

The recommended daily allowance (RDA) of calcium for an adult, published by the Food and Nutrition Board (FNB) at the Institute of Medicine of the National Academies, is 1000–1200 mg (1200 mg for age 70 and older) and based on the latest research, it is best to get as much calcium as possible from natural food sources while minimizing supplemental calcium - especially calcium carbonate. Interestingly, the number the RDA is based on, (the number that really matters), is how much calcium you absorb, not how much you eat. The average adult needs 300-400 mg of calcium that can be readily metabolized and used to satisfy the body’s calcium requirements.

The following is the very short list of high calcium food items that have been tested for bioavailability. Note: Minor sources have been omitted from this list, as well as fortified foods (such as calcium fortified orange juice, calcium set tofu, calcium fortified soy beverage, etc.), as they include nothing more than the basic food item with supplemental calcium added.

Food Serving Size Calcium absorbed per serving

Collard greens 1 cup cooked 173mg

Canned salmon (6 oz with bones) 1 6-ounce serving 114mg

Turnip greens 1 cup cooked 102mg

Milk, Lactaid, yogurt 1 cup 96mg

Cheese (hard such as cheddar) 1 ½ oz 97mg

Sardines (with bones) 1 can (3.75oz) 95mg

Bok choi 1 cup cooked 69mg

Broccoli 1 cup cooked 57mg

Kale 1 cup cooked 46mg

Mineral water 20oz bottle 41mg

Mustard greens 1 cup cooked 42mg

Chinese spinach ½ cup 29mg

Almonds 1/4 cup 22mg

Beans (white) 4 oz 25mg

Beans (pinto) 4 oz 15mg

Beans (red) 4 oz 10mg

Whole wheat bread 1 slice 17mg

A glance at this list makes it immediately apparent that without milk and/or milk products it is very difficult to meet the daily requirement for bioavailable calcium without relying heavily on supplements. This, however, is complicated by the fact that approximately 25% of Americans are lactose intolerant. Fortunately, Lactaid can be substituted for milk, lactose free yogurt is readily available, and many lactose intolerant people can eat small portions of hard cheeses without a problem. The reason being that most of the lactose in cheese is converted to lactic acid when the milk and/or cream is cultured, and more drains off with the whey during the aging process.

Another little known fact is that green leafy vegetables, which are very rich in calcium, often contain phytates and/or oxylates. These “antinutrients” bind to the calcium in the cells of the plant and block bioavailability. A good example is spinach, which contains 115mg of calcium per ½ cup, but provides only 6mg that can be metabolized and used to meet the body’s calcium requirements. Furthermore, when these foods are included with a meal, the phytates and oxylates they contain bind with the calcium in other food items you eat and block its absorption as well.

Vegetables high in oxylates include: carrots, spinach, okra, kale, chard, beet greens, rhubarb, collard greens, broccoli rabe, turnip greens, and Brussels sprouts. From the above chart, however, it is obvious that collard greens and turnip greens are so high in calcium that the negative impact of the oxylates on other food items is more than offset by their high bioavailable calcium content.

Foods high in phytates include: whole grains, nuts, seeds, beans, and legumes; with beans being the biggest concern. Fortunately, the phytates in whole wheat bread are removed during leavening, so this staple remains both a healthy food and a good source of calcium.

Lastly, it has been shown that vitamin D3, magnesium, and vitamin K2 work either synergistically with calcium, or contribute to its absorption.

Based on the aforementioned research, eating a nutritious diet, plus the following suggested supplementation should help prevent osteoporosis and maintain strong healthy bones, nerves, and muscles.

1 cup of milk or yogurt, (either regular or lactose free) 96mg

2 ounces of low fat hard cheese 129mg

1 can of sardines, 1 serving salmon, or a third portion of dairy 95mg

400mg of calcium citrate (21% elemental calcium) 84mg

Total 404mg

Significantly, once the daily calcium requirement has been met, (with the above suggestion, or any variation), antinutrient containing green vegetables, which taste good, contain beneficial fiber, vitamins, minerals, and disease fighting phytochemicals can be enjoyed with meals.

Lastly, it is recommended that from 1500 - 2000 mg vitamin D3, 200 mcg vitamin K2, and 500mg Magnesium be taken daily to augment the activity and/or absorption of calcium.

[Hidden in reply to Admiral06]

Was my L-4 vertebrae too. I have since had 4 infusions of Zoledronic acid and been given Adcal-D, I ignore the instructions and take one a day as I drink a lot of milk and eat dairy products. Found that Adcal in the evening gave me terrible indigestion.

[Admiral06]

Bananaman, I also studied bisphospates (such as Zoledronic acic, fosamax, ect) and my understanding, from clinical trials, is they will harden the surface of the bone, but will not prevent fractures. Be sure to get 400mg of bioavailable calcium per day as outlined in my paper.