I have not been on here for quite some time. A big part of the reason is because my PMR finally went into remission after 2 and 1/2 years. Although I'm quite happy about that I want to caution everyone as to what happened to me after my two and a half years on steroids. I've developed a pretty severe case of osteoporosis. I have fractured 9 bones in the last 13 months. Five vertebrae, my sacrum, two ribs and an ankle. My ankle was because of a fall that I had. I always took my calcium everyday but it doesn't seem to hand made a difference. I also learned recently that you should not take all your calcium doses at one time. Your body can only absorb a certain amount of calcium so you should split up your doses. Of course my doctors have me on osteoporosis medicine but unfortunately I can no longer afford it. I live in the US where we have to pay for everything that insurance doesn't pay. I hope that the rest of you don't experience when I am in the aftermath of PMR. I also hope to God it never resurfaces again. Good luck to all of you.
In the aftermath of PMR: I have not been on here... - PMRGCAuk
In the aftermath of PMR
My Goodness Amkoffee, that’s awful for you.
Do/Did you know if you had Osteoporosis before you started the Pred?
HeronNS one of the Ambassadors has a great deal of knowledge on alternative to the Bisphosphonates, we don’t know how lucky we are here in the U.K. to have most of our Medications available to us for a basic prescription fee or are exempt because of Age.
Why won’t your Insurance cover a Medication for Osteoporosis?
Kind Regards 🌷
MrsN
Good to hear from you but not so good to hear about the bones!
Did you have a dexascan at the start? And did they check calcium and vit D? All that is relevant.
The blood results before I was diagnosed showed a Vitamin D level of 45 and the GP said it should be 50 or above.
I’ve just had the results of my second bloods and I asked over the phone if my Vitamin D level had improved and he said that can only be tested once a year ?
Hi Bridge
Are you in the U.K.? There are ‘limits’ on some blood tests down to costs, when l lived in Wales GP’s could only test for CRP but at the Hospital they would do an ESR as well.
MrsN
Yes .. Norfolk
Ahh... I didn’t think about the cost . I just presumed there was some medical reason why it couldn’t be done
Ask him how much it costs. One friend was told it was £200! The lab that does it for the NHS also does it for the public - at IRO £30 a time:
My old GP ( who was not helpful at all) refused me a Vit D test. My consultant asked me later if I had had a recent Vit D test and I said no but I presumed it was because of the cost. He just laughed and said it cost something like £7.50( can’t remember the exact figure) and gave me a form to have it done there and then. The result was that I was under the recommended level and he wrote to GP. I think the GP by this time had had her fill of me and the Consultant. I’m glad to say I have now moved and my new GP was very happy for me to have a further Vit D test.
My ESR was normal and my CRP 24 btw.
Dexa this morning
Good Luck 🍀
And the normal range for the CRP?
I thought it was supposed to be 10 or below but from what I’ve learned on here everybody’s normal is different so I’m not worried about it.
Have you been checked for other "secondary causes of osteoporosis"?
Good to hear PMR gone but not happy re OP. The twice a day dosing of acdal/calcium+d3 is very important and I am thankful to the forum for that knowledge. I hope you are getting good pain management you need. Good luck.🌻
Thank you for writing your post and I'm so sorry for your situation .
It was an interesting comment about splitting the Calcium dose and I am going to research that more because of your input.
It does prove how important it is to have a Dexa Scan if you are on steroids or other bone thinning medications long term , or, have any sort of Chronic condition that can affect your Vitamin D and Calcium levels.
It is very sad that after recovering from PMR you have ended up with these severe Health issues.
It is not common for people whom take steroids to suffer this level of Bone Health issue from the steroid use alone , although , just as in your case, it can unfortunately happen.
Most people are fortunate, and either do not suffer these effects , or , if they do suffer bone changes , they are often to do with age and other health issues that they had prior to PMR , the steroids are just one factor in their Health that contributes to OA . If tested properly mist patients conditions can be improved or reversed .
Which is why I'm sure we can all sympathise with how you are feeling now very strongly and hope you will write a post if you ever just need to talk with people in a community that you are comfortable in. Your definitely have my love and thoughts.
Take care , and I hope that some member from the US will read this and hopefully be able to give you some sort if advice about how you could get some help or funding for your treatment if it isn't covered by your insurance .
The body can only absorb about 600mg calcium at a time. So the big dose calcium tablets are pointless and you need to take your calcium tablets with a decent gap between them.
Luckily I was, but I was hoping that you would have the figures so I knew I was getting things right . It's always good to check with the Brains on the forum , you save me so much research !! Big thankful hugs xxx
These things stick in the memory ...
Do u think it's worth adding this info into the welcome message new members are directed to? Especially since the first 6 months on steroids cause the most rapid depletion of calcium....
I have only just learnt about the rate of calcium absorption from this thread...
I wouldnt want others to realise the damage when the risk could be mitigated earlier.
I’ll consider it for the next revision. But I am always aware too much information in one go is overwhelming, and therefore not always ‘taken in” by new patients.
You make a valid point! I leave it to your better judgement mrs DL. Hope you are keeping well!
My GP Practice has just changed my calcium tablets from Adcal D3 to Calci D3 to save them money. Calcium D3 have 1000mg in each tablet but at no point have they told me to split the tablets in half. I shall be sure to do so now after reading your post, thank you 😊
Dear Amkoffee. I am really sorry to hear that after the good news of your PMR remission, you are having so many problems due to Osteoporosis. Like you , I am in PMR remission but was diagnosed with Osteoporosis after a Dexa Scan at the end of my treatment. Luckily not severe but was still a shock. I have not posted for sometime but signed in today to give an update and read your post.
I got very good advice from HeronNS and from others in the bone community section of this site. I tried to increase weight bearing exercise, along with the right diet and supplements. However, if you have had fractures, you will need guidance on what exercises you can do.
I have not taken any bone medication although it was advised but from your situation You probably do need it. Surely there must be a way to obtain essential medication if you cannot obtain it privately long term for financial reasons.
I hope your situation improve and you are able to stay off the Prednisolone. Keep using the support from the health community as it will help you keep uplifted.
So sorry to hear about your experience. I wish you well for the future!
How much exercise/walking have you been doing during PMR time and afterwards? I am down to 4mg from 40mg last December, almost a year. I do have osteoporosis, before PMR, and my physician has always stressed the importance of activity along with medication.
I have suffered from chronic back pain for 15 years and haven't been able to walk further then around my house for the duration of my PMR. Excersise is important and I long for the days when I could walk. In the last 13 months I've fractured 5 vertabraes, my sacrum and 2 ribs. At this point I'm not suppose to do anything that is jarring. I am only 58 and have the body of a 90 year old. Maybe my mom lied to me about the year I was born. Maybe I really am 90! LOL!
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