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