Trying to be brief but it's turning into a long post. My history- PMR symptoms started late Dec 2104. Stiffness in pelvis, shoulders, neck and limbs. No pain but movement severely restricted and a lot of fatique. Felt like I had aged by 30 years. Diagnosed end Jan 2015. Initially resisted steroids and investigated how diet, herbs, acupuncture, cranial osteopathy and change in lifestyle and anti-inflammatory diet would help. CRP and ESR both began to drop by March but by June they rose ( it could have been as simple as a skin brush treatment that flared things) and no option but steroids beginning July. Stiffness disappeared within hours. No obvious side effects other than some sleeplessness, some "hot " moments and a slight ringing in my ear which all disappeared as I dropped in dosage. Feeling very well. Have practised tai chi for past 15 years and it really helped release tendon tightness that had occurred in that first 6 months. Doctor started me on 40 mg due to concern over high ESR 120and CRP.63. I wasn't happy with this but felt I had no choice really but to take her advice. She wanted to hit the inflammation and then reduce me quickly to a maintenance dose. Symptoms totally disappeared apart from residual tightness in upper left arm and left side of neck. I asked re dexa scan, calcium tablet and vit D ( had been taking vit D over past two months.) They measured vit D levels and bone profile. She advised I didn't need to take calcium or vit D as levels were good. Vit D was 65 nmol and calcium 2.23 nmol. I continued with my vit D but was unsure re calcium as I had read not good to take if you don't need it.
Waiting for Dexa appointment. I dropped quickly off the very high steroid dose as ESR and CRP dropped quickly. End August on 15mg, no symptoms and ESR 21 and CRP 6. Blood calcium and vit D checked Sept and pretty much the same as end June. End Nov ESR 20 CRP 10 however no symptoms and back to work almost full time after working short hours for many months. End Nov 10mg after a slow descent from 12.5mg. Stayed on 10 until Mid Jan. Blood tests then ESR 23 CRP 9. No symptoms other than a very minimal tightness in certain areas which doesn't hang around and I don't think I would pay attention to if I wasn't on this PMR journey. Am feeling very well. Cannot get tablets lower than 2.5mg and am very slowly descending now to an average of 9mg over 4 week period. No symptoms. I am pacing myself and being careful. I complement the steroids with other treatments. I continue to have acupuncture now on a 3 to 4 week basis and practise lots of tai chi. Am mindful with diet. Only very minimal side affects from the steroids. However have just had dexa scan and am borderline between osteopenia and osteoporosis. Just on the wrong side of the line. Hips are in the osteopenia range but most of the vertebrae L1-l4 are in the osteoporosis range. Consulted with my doctor. She had advised calcium and vit D for 6 months and take another dexa scan then so we might judge if it is totally the steroids. She thinks it can't be as she feels this is very quick for a Change in bone density to happen. I have a family history of osteoporosis. However from research I have discovered that most of the damage is actually done in the first 3 to 6 months. She has prescribed Calcichew a calcium carbonate which I think is poorly absorbed and also has said to take 500mg only as she doesn't want me saturated with calcium! I am due to have bloods taken on Feb 16th and she asked me not to take the calcium until after that. From research too I have discovered that the blood calcium will always achieve its required level to the expense of the bones. I do not have confidence in her advice re calcium however she has been very supportive in other aspects of the PMR journey. Can someone explain the blood calcium levels. Does anyone have any experience of algaecal which I have read is very well absorbed? Is bone density usually lost so quickly.? I am researching diet etc and know about K2 and adding more walking into my routines. I have also gone back to my herbalist who has prescribed silica which is benificialmin building bone. Thank you for taking the time to read this and thank you all for your posts. I am a very regular reader. Geraldine from Ireland
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Irldino
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Geraldine, it sounds as though you are doing well with your reductions, although 40mg was way over the top for a diagnosis of 'just' PMR - that dose and above is usually reserved for patients with the linked condition GCA. Such a high dose unnecessarily could also have run the risk of masking other conditions. The inflammatory markers could equally have responded to a 15-20mg starting dose.
Pity your GP didn't at least start you off on a calcium + Vit D supplement at the start of treatment. Yes, unknowingly you might well have already had signs of osteoporosis but all the more reason to err on the side of caution and follow the recommended guidelines to prescribe the supplement alongside Pred. Plus your Vit D level of 65 at the outset was really not quite within the normal range (75-150/200). Just by taking a sufficient dose of Vit D alone can allow more calcium from diet to be absorbed into the body. At least your GP has now finally prescribed the necessary calcium + Vit D supplement, and I do hope that it will help to improve your bone density, but really if the DEXA has shown that you have osteoporosis in the spine then you may be wise to consider some appropriate medication to prevent further thinning. Do check with a pharmacist that silica is compatible with Prednisolone, as with any other supplement that you may consider taking.
Thanks for your reply Celtic. Yes agree re the 40mg. I argued that 15-20 would be more than sufficient but Doc very insistent saying that she would be remiss in prescribing anything less. I gave in. I should not have listened about the calcium either and should have insisted. The wisdom of hindsight! Which is one of the reasons why I have posted today. We all learn from each other's experience.I was getting away lightly on my steroid journey until the osteoporosis diagnosis. I have been reading quite a bit about the medications for osteoporosis. The docotr herself has told me that they don't build good bone. As I haven't been on calcium that will be the priliminary route for me in tackling this diagnosis along with the other necessary supplements plus a concentration on alkaline foods and very regular exercise. On the print out received with my blood test results it says vit D levels are OK between 50 and 150. 50 is obvoiusly not the best base figure to work form then. Learning all the time. I have been following advice from the forum regarding reductions and that has been brilliant. Thanks again to all you wise advisors
Do you know I can't even convince my doctor that a vitamin D test would be a good idea. The doctors here have all been told not to prescribe them unless absolutely necessary because it became a very "fashionable" thing to do and overwhelmed the labs. I'd have thought people like me are the very ones who should be getting tested. I'll wait until next DXA scan and if my bone mass has worsened will try harder to get more tests done.
Owing to a diagnosis of osteoporosis (it is actually osteopenia) three months after starting pred I have done a huge amount of reading and developed a regimen for myself - supplements, diet, exercise. My doctor really wants me to take bisphosphonates but I'm terrified of these drugs and have refused. If you are interested I would be happy to private message you the letter I've written outlining everything I've been doing for myself, you might find some of the ideas helpful. Let me know!
Yes please I would really appreciate that. I have been following your posts so know you are also on this journey. It would be fantastic to know your regime. Thank you so much g
I'll find the latest version (I keep updating it) and private message it shortly. I am also interested in learning what other people have learned and how they have helped themselves, so please let me know what you think!
The reason for the calcium/vit D supplementation is because pred makes you excrete more calcium through the kidneys so the more there is floating around the more likely it is that it will reach the bones - and vit D is also essential for that process. A study some years ago showed that giving calcium/vit D supplements alongside pred reduced the loss of bone density and could even increase it. By no means everyone develops osteoporosis when on pred - about 40% do so. But you only know if it was the pred if you do a baseline dexascan and that is recommended to be done in the first 3 months as that is thought to be when the most calcium transfer occurs, as you said.
Calcium is essential for muscle function and must be maintained within a narrow range - and that includes the heart, so if you need a bit more to keep the muscles happy then it is robbed from the bones. Clearly, that is far less likely to happen if you are supplementing your dietary calcium.
The main reason for that high ESR was probably not severity of the disease process (in the absence of any GCA symptoms) but the length of time the disease had been present and accumulated inflammation. However, no point ploughing that furrow, what's done is done.
There are many ways of reducing the risk of hip fracture - and it doesn't have to include bisphosphonates. The rate of hip fractures has been falling over the last 20 years, even without them. Removing loose mats, trailing cables and all other trip hazards such as pets, having good lighting on stairs and steps, good levels of hydration and vit D are just some of the things that have been shown to reduce risk. As is wearing shoes rather than sloppy slippers and (boring I know) but not high heels, especially with the joys of poor balance due to PMR!
The risks of vertebral fracture are another matter but that is something for an expert to comment on. I have a few vertebrae that are far worse than the rest, no-one here in Italy has suggested anything other than calcium/vit D. Does Ireland have an equivalent of the National Osteoporosis Society? They have a wonderful helpline. I don't know if you can access it easily - but you can read the website.
Thank you for your advice. One thing I don't understand is why my doctor thinks that 500 mg Calcichew will " saturate" me. I think it would be very important for me to have sufficient supplemental calcium to counteract what is happening. Unfortunately the wait time for the dexa was 6 months. I do regret not going privately to have it done as I don't have that baseline but my instinct tells me it was the steroids..That was interesting re 40% of people. I have been very healthy until I bumped into PMR and was just so surprised with the diagnosis. I do not suffer from back pain either. I am a flat shoe wearer, never wore heels. Yes Ireland has a National Osteoporosis Society. Have just checked their website. thank you again G
I don't know either - too much calcium can sometimes lead to kidney stones or gall bladder grit if you don't drink plenty. Maybe she's had experience of patients with that. My blood calcium level is fine too, I still take the recommended 2 tablets a day and the only problem I have ever had has been on days when we are travelling and I don't drink my usual umpteen cups of tea! Then I seem to develop fine grit in my urine which causes irritation, as if I have a UTI! Once I realised that I either don't take the tablets that day or make sure I drink plenty.
I'm a flat shoe person too - anything above an inch is high for me!
And yes - loads of us were healthy and active. Then PMR appeared on the scene! Ah well...
I drink like a fish - 3 large mugs of tea before I even get out of bed! It's a good habit - especially as we get older but so many people don't drink enough!
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