My GP asked to see me to discuss the way forward after I had failed to reduce from 10mg to 9mg before Xmas. I thought he was going to pressurise me to try reducing again but no, he was concerned about the likelihood of my getting osteoporosis as I have been on Pred since November 2014 (I am 68).
He has prescribed 70mg alendronic acid once a week, plus a daily dose of Vitamin D3. Re the osteoporosis, I asked if I could have a Dexa scan and he said this was not necessary because I should take the alendronic acid in any case...as a preventative.
I wasn't happy with this and pressed for a scan, the appointment for which has come through for next week.
Looking on this site I have read some bad reports of alendronic acid and therefore I feel quite frightened of taking it. Any advice would be greatly appreciated.
What do you think of taking turmeric tablets? Are they of any use?
I have read that turmeric is good for inflammation so I beetled off to Holland & Barrettt and bought a bottle of 400mg turmeric tablets, thinking that using a good amount of the ground spice powder in cooking might be quite difficult on a daily basis. The label says to take 2 tablets per day, which can be dissolved in hot water and drunk as a tea. Does anyone have any experience of taking turmeric please, and is it okay to take it with pred, alendronic acid and vitamin D3!
Many thanks
Zhenya
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Zhenya
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I try and add turmeric to everything including scrambled eggs! I have not taken it in tablet form though.
Personally I would not start taking Alendronic Acid unless I was given a very good reason. I am glad you are getting a Dexascan, well done for standing your ground.
You are right, thank you. Solgar do a turmeric supplement that also has black pepper extract together with other things like Montmorency cherry, ginger, cayenne and quercetin. On the leaflet the chemist gave me it says that all off these are anti-inflammatory. At £24.50 a bottle, it should be good!
Let us know how you get on with it! I've taken to drinking one or two cups of fresh gingerroot tea every day, but haven't tried a turmeric supplement yet.
If it's any help, I was diagnosed with osteopaenia aged 45, way before PMR raised its ugly head. I have taken two five year stints of alendronic acid with absolutely no side effects and the bone reduction has stopped in its tracks. I'd say try the AA, for a lot of people it really is no problem at all.
Zhenya, I, too, am a strong believer that Turmeric can help as an anti-inflammatory, included in a diet of lots of known anti-inflammatory foods, but, like Piglette, have only taken it in ground spice form added to suitable meals, including casseroles, risottos, soups etc. If taking it in pill form, it is likely to be far more concentrated so, although I don't feel there will be a problem, as with any other supplements, either on prescription or purchased over the counter, it is always a good idea to check with a good pharmacist for any contra-indications alongside Pred.
Another GP who doesn't understand that prescriptions for Alendronic Acid shouldn't be handed out like sweeties unless a DEXA scan has revealed osteoporosis. It was discovered a few years ago that AA should not be taken for more than 5 years due to a risk of side effects to the jaw/hip bones, so futile to start taking it when not needed. So glad you pushed for the DEXA - provided it shows normal bone density, then taking the usual calcium plus Vit D3 supplement alongside Pred should be sufficient. Taking Vit D3 itself will also enable more calcium from your diet to be absorbed into your body. Good luck with the DEXA results.
Thank you so much. I will ask my pharmacist re turmeric as I am not the type who normally takes supplements. I prefer to get my nutrients from freshly cooked food every day. Will await Dexa scan results and then confront GP!
Zhenya, I meant to add that, in spite of taking steroids for 5-6 years starting at 40mg, my bones only moved very slightly into the osteopenia range, but not needing treatment. The latest DEXA a year or two since coming off steroids has actually shown an improvement! Keep walking within your limits (as much as your PMR pain allows) - it's the best weight-bearing exercise for our bones. Also include plenty of oily fish in your diet - it, too, will help your bones whilst at the same time acting as an anti-inflammatory!
Thank you. I do try to walk every day and have sardines or mackerel for lunch a couple of times a week. I believe that making a conscious effort to do all of the recommended things really does help with PMR generally. It's all about having a positive attitude to help oneself as much as possible, even though we may have many setbacks along the way. There is a light at the end of the tunnel...unlike other complaints, PMR can go away.
After 3 months of asking very nicely for a Dexascan and being refused as 'not necessary etc. .' as you quote (I was diagnosed in July so fast, thanks to doctor, so had no time to research what I should be offered) I arrived at the tactic of refusing to take any bisphosphates after bad reaction to AA (nausea, wiped out, but everyone has a different reaction, you may be fine) and this morning *success* when I asked for Adcal whereupon I was on the list for Dexascan! So good luck to you with the results and glad you got there a bit quicker than I did.
As for turmeric I sprinkle it on everything, especially good with eggs, and in winter casseroles, curries obviously! Love the taste, and a bonus if it makes a difference - I'd personally not take a supplement as, like you, I'd rather have the natural form but take advice from pharmacist. So difficult to know what to do sometimes!
I've been using turmeric capsules. As with other supplements....it's sometimes hard to tell what is helping and what is not. I've researched quite abit and don't believe there is any interaction with prednisone. About 15 years ago, I was told I had osteopenia. 18 months before I was diagnosed with GCA/PMR, my Dexa showed I had severe osteoporosis. Not wanting to go on the Fosamax that was prescribed, I started doing my own thing, I take calcium, magnesium, D3 and K2. As well as other supplements. After several months of high dose prednisone, my Dexa showed I was back to osteopenia. I intend to keep with what I'm doing. I've never been one to eat a terribly healthy diet.....bad habits like aren't likely to change too much at his stage of life. ( 69) Supplementation seems to be a good choice for me.
I have just been to the pharmacist who said that as far as he knows there is no reason not to take turmeric with Pred and vitamin D3. He said I should wait for the Dexa scan before taking AA. What he also said is that people tend to only write negative comments about drugs. If they have no problems they tend not to bother to write.
That's why we need to read up on the clinical studies, not just follow the forums, although the forums are a fabulous way to get information from the front line! I only personally know one person who took Fosamax and she stopped because of side effects. That's not a very good sample really, but added to other information it will help to shape my ultimate choice.
I have had PMR for 11 years now, I have been on pred for over 6 of them. I had a dexascan 3 months after starting pred, it showed osteopenia with t-scores of about -1.3, well below the osteoporosis point of -2.5. I had originally automatically been given AA and had taken 4 but I really didn't like them so had a long discussion with a different GP. It was just after the first suggestions that maybe dishing out bisphosphonates willy nilly as a preventative measure wasn't perhaps as good an idea as it was claimed (by the manufacturers who had a financial interest). We agreed that, since the dexascan was OK and wouldn't normally trigger prescription of AA, we should wait and see what happened. I moved soon afterwards and now live in Italy. Here you get a dexascan and only get AA where it is indicated. Three and a half years after the first dexascan I had a second - you can't compare them, they were done on different machines, but the figures were identical, so the same conclusion was reached. So effectively, nearly 4 years of pred, much of it at above 10mg, about 4 months of it at 20mg and 5 at 15mg, my bone density had not changed.
I have nothing against it being given when there is proven osteoporosis - but to dish it out as a preventative measure is not good medicine. Even if you don't have any of the gastric or other problems with it - and I hasten to add that, as Lyn says, many people don't - there are still potential problems that are associated with using it for long periods. They are sufficient for the FDA to warn it shouldn't be used for more than 5 years at a time - although I know 2 ladies whose problems occurred after 18 months to 2 years. One has shin splints, the other bilateral fractured femurs which won't heal - the consultants are satisfied it was the bisphosphonate that was the cause.
The idea of using it "just in case" was pushed by the manufacturers - this was, they said, a drug with no side effects that would prevent hip fractures in the future. This was on the basis of their clinical trials, it wasn't yet in widespread use in the general population - clinical trials rarely last 5 years,or at least, patients aren't on the drug for 5 years. It is only when it is being used in real life situations, in patients who may be on other medications, have other illnesses, that the true rate of side effects is found, even more so the case for the long term use risks. To discover that after 5 years you might break your femur just by stepping off a kerb, you have to have taken it for 5 years. The first few times it happens you note it - when it continues to happen as the population involved increases in size, then you look more closely. That has been done.
Once you have your dexascan result you can consider it again. But the doctor is actually a bit behindhand - in the meantime it is felt to be better practice to postpone deciding what to take until you know there is going to be a need. In the meantime, you should be taking calcium and vit D and before you agree to take anything else you need your blood calcium and vit D levels to be checked and put right if they are low - because if either of them is NOT high enough, the AA won't work anyway (it is mentioned in the data sheet as an essential step). A visit to the dentist is also needed beforehand and any extensive dental work that may be necessary carried out first. High standard oral hygiene is also needed while taking it.
I decided to go on an anti-inflammatory diet when I was first diagnosed with PMR 18 months ago. My thought was it would work alongside the pred and help to keep me on the lowest dose possible. I have been gluten-free and also "nightshade" free (potatoes, tomates, peppers) since that time. I also take fish oil and was taking turmeric too. The diet was not easy to do, but I have managed to adapt and find alternatives.
If I stray from my anti-inflammatory way of eating/supplements even for a day, I feel the effects the next day and wish I hadn't, so I see a real benefit!
I was uncertain now much the turmeric was helping me and so went to a circumin supplement. Circumin is the main active ingredient in turmeric.
On recommendation from a Nutritonist, I am now taking a higher dose concentrated form of circumin. Although I am always concerned about not buying into the latest "snake oil" there seems to be a lot of excitement about circumin and its anti-imflammatory effects out there at the moment if you google on it. I was initially skeptical, but I find it is helping me a lot.
Would also concur with PMRpro that both Calcium and Vit D supplements are essential. Since I have been taking both on a daily basis, my bone density has not changed at all, even though I have been on pred.
Best of luck Zhenya, hope the turmeric helps you. If not consider trying circumin. There is a lot we can do to help ourselves aside from taking pred.
I take 3 - 450mg tablets daily after dinner. Taken since July and believe it has helped me. Don't know about drug interaction as I am doing Holistic since onset of PMR May 2015, I did not go down the steroid route and glad I didn't.
Able to function at about 80% of pre PMR diagnosis.
19thhole, I don't think I understand what you mean by 80%. Do you mean you are 80% better? On non-steroid treatments alone? Could you elaborate - your age, gender, how long you had PMR symptoms and what was your degree of disability before diagnosis and starting treatment? I, too, would love to be free of pred as I seem to be developing some of the more significant side effects, even though my dose is relatively low now, and I have been following a lot of the other strategies in tandem with pred. But given the condition I was in by time of diagnosis I am certain I could not have managed a non-steroid route.
Queenfisher, haven't posted much because I was still experimenting. I live in Arizona and was an avid golfer and hiker before being diagnosed in May 2015. Hit me like a brick unable to lift leg one morning and unable to roll out of bed because shoulder pain was so severe. I thought it was a sciatica issue and saw chiropractor without much relief. PMR diagnosis and given RX for steroids which I refused to take. Started on organic foods, no processed foods, Tumeric and daily walks of at least a mile and it was a struggle. I previously did 8to 10 mile hikes in the mountains so this was beyond frustrating! Kept at it until Nov. 14 when my brother suggested I try Bemer therapy his friends have been using to treat symptoms of Rheumatoid Arthritis , multiple sclerosis, Parkinson's and fibromyalgia. I tried it for 6 consecutive days laying on the electromagnetic mat for 8 minutes. It increases your Microcirculation and vasomotion. After 3 days I could sleep on my side again and get in and out of car normal and bend down. Walking 3 to 5 miles again, not strenuous mountain elevations but I can live with that. Also can golf again without shoulder pain. I still have knee and hip stiffness after sitting for prolonged times but that works out after standing and walking a bit. I use Bemer twice a day for 8 minutes at a time a d it has been a life changer for me with this crazy condition. If you are interested in learning more contact me.
I'm PMR probably about 2 years, on pred since December 2014, now on 8 mg. DEXA scan from 2 years ago was "ok"-I guess that means normal?
I was just started in November on 70 mg Alendronate weekly, and on Atorvastatin (Lipitor) too. So far, I haven't noticed negative side effects from either. When I had dental X-rays in December, the dentist said my doctor was very smart to start the Alendronate as he saw signs of bone thinning.
My late October blood work, showed Vit D in normal range for the first time. Before that it had been insufficient.(not deficient).
My mom had PMR, and has osteopenia.
I take 50,000 IU vit d2 weekly, but no one has ever suggested I take calcium. My blood work shows normal calcium levels.
In July, my Rhumy suggested turmeric and cinnamon capsules, which I have taken daily ever since. Not sure if I can say they are helping or not. But I am willing to keep taking them as a potential weapon in the battle against PMR. They are just clear plastic capsules filled with the spice. Because I struggle to swallow large pills, I break open the capsules, dump the contents of both on a spoon, then into my mouth and washed down quickly with a glass of water.
I had refused cholesterol meds for last 10 years, when my total cholesterol was 180-205, but was surprised that last test showed it jumped to 238 despite significant improvements in eating habits to try and keep pred weight gain down.
Looking forward to that day when I get off pred, and should be able to stop the Alendronate, too....and turmeric and cinnamon...and then Hopefully the statin too!
Meg, I'm beginning to wonder if most of us get enough calcium from our diets, but are lacking the other micronutrients needed for proper absorption! Also, I've recently read that turmeric is more bioavailable if you also take piperine (aka black pepper). Do you know if that is included in your supplement? If not, it's easy enough to get a bit of that into your diet.
Mine was raised, I was put on a statin, despite voicing my concerns. After less than a week at half dose of Lipitor/atorvastatin (supposedly a better one) I could barely walk and desperately breathless after 20m up a gentle slope. I stopped it, the cardio said that was fine, and I started a low carb diet. It is back in just normal range - at the top because my HDL is very high, with a normal sort of HDL it would be superb. Cutting carbs is one of the best ways to cut cholesterol levels - rather complex biochemistry though so I won't try to explain!
There is so much I could say on this thread but I will, on this occasion, resist!
I am just happy that I can neither take statins nor can I take alendronic acid.
Statins due to extreme reaction to them and alendronic acid because I also have eosinophilic esophogitis, which makes it a non starter.
The supplements I currently take are:
Extract of Green lipped muscle, cQ10, Magnesium, Zink, Calcium +D3 and Taurine.
So far my BP is well within the normal range. I have put on a bit of weight but am now taking control of that. (hopefully)
I have no idea what my cholesterol numbers are as I am simply not interested.
I do Physiotherapist guided exercises on a daily basis, generally between waking and getting up and try to walk a mile or two most days. Sometimes to the village bar
I don't eat processed foods and and very few carbs. I cook everything fresh and try to eat humanely reared meat.
I also eat an anti-inflammatory diet, cannot take AA as Rheumy has agreed I must be allergic to it, after severe reactions and has informed my GP that I'm not to have any drugs in that family. I start the day with lemon juice in tepid water, followed by a tincture that is put together by my medicinal herbalist, followed by porridge, Greek live yogurt and fruit followed by my daily meds! This all takes time, but I am retired!
I do not eat any carbs after lunch time and my lunch generally consists of protein and salad, more often than not a fish of some kind. In the evening I try to have just veg (stir fry, salad or one of the cauliflower pizza, cauliflower base recipes)
I had an appointment with the medicinal herbalist today and she has adjusted the tincture to what I have had concerns with this month; as I have said in other threads, I believe in this and if it is the placebo effect making me feel better, I am not concerned, it seems to be working for me!
I realize the last post on this subject was a year ago, I am wondering what kind of calcium supplements most of you take? I am 65 yrs. old with PMR. I do use curcumin, K2, vit. D and calcium in plant form. I am confused with what the right calcium would work the best. I am on prednisone protocol for 11 months. I will be going for a bone density test the end of January 2017.
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