I know this is not a medically trained forum but it has become my ‘go to’ for advice before I see my GP. Hope you don’t mind! I like to feel equipped when I attend my appointments.
I appear to have fluctuating blood calcium levels and parathyroid levels. I believe most of this might be down to having been on steroids for 2.5 years. When do we know to be alarmed or act on anything when steroids can mask so much or actually cause it.
I have read several posts about Vitamin K but I’m never sure if I should add it or just stick to a healthy diet. I don’t take Adcal or Alendronic Acid. I had a dexa scan and all well, recommended not to take AA and I’m on the waiting list for a follow up dexa as it will be two years since first one.
At my last rheumy appointment in June he confirmed he believed I had some sort of inflammatory condition but less sure about PMR. I think he came to that conclusion because I can’t reduce my steroids quickly enough “in his opinion” I did ask what else it might be and would it still come under rheumatology which he suggested it would.
As we all reflect on our appointments it’s then difficult to ask any more questions.
I suppose I’m thinking do we ever know if we have PMR for sure? How do we enquire about other possibilities and investigate them? At present I feel the only option I have is to try methotrexate as recommended by my rheumy but he has left it up to me and I don’t see him again until February 2019 so plenty time to do nothing. But it’s another 6 months of do or don’t I, with no real answers.
I am rambling a bit as so much comes to mind when you start writing so apologies. I think I’m continually thinking about this condition we have. Every day has a bit of pain or discomfort or stiffness so it’s hard to forget!
Dx March 2016, starting dose 20mg, now struggling around 10, but struggling so hence my continued ‘thinking’ ! Oh and a couple of flares along the way 😁😂
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Lochy
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I did take adcal in the beginning for about 6 months but did find I got rather constipated on it and agreed with my GP that I would maintain a diet high in calcium. I tried again more recently as I panicked a bit after reading about it on this forum and with same side effects came off it again. With my fluctuating blood calcium my GP agreed I should stay off it for a while and see what happens.
I know I’m still in the early days of PMR and I do tell my GP and rheumy that much. It’s the rheumys response that depresses me as many on here say we feel we are failing because we aren’t reducing fast enough! We know that’s not the case and ideally just want support. My general plan is to keep reducing slowly until I have to see him next February and if no lower might consider Methotrexate.
I just want to make sure other diagnosis aren’t being missed but I seem to be pursuing this alone, suggesting things myself. My rheumy is not investigating any other options at the moment. I had Blood’s done privately through a lifestyle screening programme and that’s where some of these fluctuations have arisen. I’ll take them to my GP and if he thinks appropriate ask for them to be sent to my rheumy.
Ok on Adcal, can’t say others have complained about it much, so interesting to hear you have problems. No point in adding extra problems!
I’ve been on this forum for best part of 6 years, and we are still hearing of doctors who believe in the 2 year scenerio - they obviously don’t keep as up to date with current findings as they should!
But that doesn’t help anyone, especially the patients, who like you feel they are failing if they don’t reduce within that timescale.
Can’t comment on MTX- never on it, but it’s yet another drug, and reading one of PMRpro's responses earlier she’s just been on it for a month - and has ditched it!
As you say, it’s a lonely battle when it’s the patient seemingly doing all the work.
It was prescribed at first, but I was daunted by all the precautions needed around it.
eg - "If you are taking thyroxine, bisphosphonates, iron or fluoride, tetracycline or quinolone antibiotics make sure your doctor knows this. When taking these medicines leave a period of about 4 hours before taking your Adcal-D3 caplets. Do not take any of these listed medicines at the same time as your Adcal-D3 caplets."
and - "This medicine should not be taken within 2 hours of eating foods rich in oxalic acid (e.g. spinach and rhubarb), phosphate (e.g. bran), or phytic acid (e.g. whole cereals).". I eat a lot of spinach, and used to eat lots of whole cereals before going low carb. It was v difficult to find an appropriate time slot for Adcal, far enough away from all the forbidden substances.
I had been taking vit D3 daily for some years (don't tan, just burn, so don't get much sun) and so just increased the daily dose of that, and added vitamin K2.
Like you, didn't like effects of adcal. Also was reliably informed that hypercalcaemia (too much calcium) is fairly common (in UK), so we need to be cautious about taking extra calcium. I try to eat a diet rich in calcium. (Natural source = best?)Conversely vitamin D deficiency is also v common in UK, and most of us would benefit fr vit D supplementation. So vits D3 and K2 are the only supplements I take. My 'reliable source' doesn't think K2 is necessary, but I decided to take it anyway - a bit expensive, but doesn't seem to do any harm, and may be beneficial. Fingers crossed.
GCA dx Nov 2016. Currently stuck around 7 - 6.5 mg prednisolone.
Second dexa scan due at the weekend, so will find out if my strategy has been sensible.
Sorry - other problems beyond my ken. Best of luck w them all.
Thanks for your comments. Interesting stuff and fascinating all the foods that appear to affect the drugs we are recommended to take. Will be interesting to hear how your Dexa scan goes. Fingers crossed. I’ll follow up with my GP next week and see what he says about some of my blood test results.
Beautiful part of the world. My Mum is from Aberdeen. I was born in Edinburgh and have lived here all my life apart from a few years abroad in my twenties.
Hope this PMR thing we have isn’t due to north east genetics!
🤞when I had my first dexa scan two years ago the lady doing it said everything was ok and my results were very good for age and stage etc. Never really enquired any further and forgot about it until I told my GP several months later that i still wasn’t taking AA or calcium supplements and he looked up my results which recommended I didn’t take AA but nobody had bothered to tell me! That was in the early days when I was far less aware and missed lots now I’m more on the ball and request copies of all my tests for my own file.
RE: "but nobody had bothered to tell me! " Sounds familiar! Communication is not their strong point, is it.
It took me quite a while to get my head together, and be aware that I had better try to keep track of things, as nobody else was going to. It's quite empowering in a way, and I've learned more on this forum than from any medic. But must say, there are times when I wish someone more knowledgeable than me would (a)understand, and (b) take responsibility. Would love to just recline somewhere and be looked after. Ah well - dream on!
How right you are! I now have a large file of blood tests etc but it’s a full time job interpreting them all. This forum has been invaluable but I would love someone to take control who knew more than me .........dream on!
As DL says - 2.5 years is not even half way for the average duration of PMR. And just because you can't reduce as he would like you to reduce is not really a reason for thinking it isn't PMR. It took me four years to be able to get below 9mg reliably. And if you have had flares in the meantime - I suspect that that just sets you back to the beginning and it results in a much longer time at a higher dose. No proof - but it is the impression I get ater 9 years on the forums and hearing stories from hundreds, even thousands, of other patients.
No, there is no way of being entirely sure it is the PMR we talk about - it is a clinical decision based on symptoms and response to pred. PMR is just the name for symptoms caused by an underlying cause - and there are several. If they do a PET-CT or PET-MRI they may find the evidence in the form of extensive inflammation but it would have to be done at the outset - anything above about 5mg suppresses the effect they are looking for. It is what is called a diagnosis of exclusion - they exclude all other options and then PMR is left.
I have just tried 4 weeks of mtx - don't care what I've got, I'm not taking that!!! The one side effect I didn't have was the much maligned nausea and for the entire 4 weeks I felt as if I was having a flare of the PMR - which wasn't the idea I thought! It may be worth trying if it doesn't make you feel worse than you do anyway. But to see if it is going to work in a supposed inflammatory arthritis is likely to take 6+ months - and if there is no real evidence it IS an inflammatory arthritis, why?
I had come across the parathyroid website before and it makes interesting reading although like many things it’s quite complex. I do take a Vitamin D3 supplement which may affect my PTH level so I may stop that and see what happens. At least we’ve had plenty sunshine this summer, even in Edinburgh! I believe the parathyroid gland can pull calcium from the bones and that increases the blood calcium level which I presume is why osteoporosis is a symptom. Gosh it’s all so confusing and sometimes I think I read too much of what I don’t understand😨
Perhaps I should go back on the Adcal just in case!
I’m seeing my GP next week so will chat again.
The methotrexate doesn’t appeal just for the sake of it and if we are unsure what else it maybe, it doesn’t fill me with confidence.
I agree that I’m very much in range for thenPMR lifespan as we know it. I will just keep on attempting to reduce using the DSNS method.
If you decide you should take a small calcium supplement after all you may find another kind works better for you. I take calcium citrate or calcium hydroxyapatite. They are both in powder form in a capsule, not a solid tablet, and they include other micronutrients. I always have my calcium with a meal or at bedtime a small snack which includes yoghurt. A Vitamin D test would be a good idea before discontinuing it; it may be more important than the calcium itself. Vitamin K2 is also important, especially as it's very hard to obtain enough from the usual Western diet these days.
Yes, parathyroid problems can be the cause of bone thinning so it sounds like that should definitely be monitored. It can also present as musculoskeletal pain. I think any continued difficulty tapering from around the 10 mg level after two years on pred does warrant further investigation.
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