Help with choosing a medication

Oh Reggie I so agree with you that the side effects of prednisone are awful but wthout it pmr is truly unbearable. I don't think pmr goes away in two years for many of us.  I have had it 3 years now with now let up.  I am still at 12.5mg.  I would love to get down to 10mg. but never can do so.  Now I have to add another medcation to build back my bones.  I do take the calcium but only 2500 mg. in tablet form.  How do you take the 5,000mg of calcium?  Tablets or liquid. ?  Since I fractured two vertebrae last month, I think I better add a bone building medication.  I don't want to but I will have to now.  That is why I have asked everyone to share with me their experiences with taking these meds.  We all help each other out with knowledge and experiences.  Thank you for your input.  Prednisone has been very hard on me....ugh.  

Padada - 2500 mg in a single tablet is pointless: your body will only absorb about 600mg at a time so the better way is to take smaller amounts twice a day. And the vit D and some fat is also important.

The most recent work is showing that PMR lasts up to 6 years - longer for a few of us. I do love it when science catches up with what i was saying 7 years ago...

Eileen,  I do take the calcium in 250 mg, capsules , 500 mg. at a time, all though out the day.   Sorry I didn't make that clear earlier. I probably learned it from you years ago.  And about PMAR lasting up t 6 year, Oh my, I do remember that you have had it much longer....  As I said above I am now at 3 years and counting.  I really pray everyday that it would go away.because for me it has been very disabling.  So nice to hear from you, thank you for the update.  

Hi Padada,

just a reminder that we must NOT take calcium with our prednisone.  The general advice in this column is prednisone at breakfast and calcium with lunch and dinner. 

Of course if you are splitting your prednisone dose then you will have to shift your calcium away from the second prednisone dose too! 😊

The calcium interferes with the absorption of the prednisone. 

Well that’s the best news I’ve heard in forever! I start Prolia in two weeks once I return from holidays and am so apprehensive. Still on 9 mg pred as well, have been tapering from 50mg since PMR/GCA diagnosis 7 months ago.  Thanks so much for that positive information. 👌

Thank you Constance for your input.  .  I am thrilled to hear you have not side effects from Boniva.  And thank for telling me you too were scare of the side effects.  That is the first thing that stands out to me regarding medictions , the side effects.  When you say injection do you mean an IV or is it just a shot?  I remember when most of the bone building meds were only tablets to take orally.  That was many ears ago of course. .  Also, congrats on getting down to only 5 mg of prednisone.  I wish I could do that, but I have only been trying for 3 years, so I guess I should be patient .  Does the prednisone give you any side effects? Thanks again for your input to me.  

No, Bonviva is ibandronic acid or ibandronate sodium - a different thing altogether. It is a bisphosphonate. 

Prolia is also known as denosumab and, as its name suggests, is a monoclonal antibody and works in a different way.

Oooops!

Oh....antibody. Yikes 😞. 

Constance and Padada, Boniva is ibandronate, a type of bisphosphonate like Fosamax.  Bisphosphonates work by inhibiting the action of the osteoclasts, or bone remodelling cells - the ones that take away old bone.  Prolia is donosumab, which has an even stronger effect on the osteoclasts.  

Use the time you are on one of these drugs to do what you can to start rebuilding your bones through nutrition and exercise so that once you have to discontinue the drugs, probably in about two or three years,  you are well on the way to continuing to improve your bone density without other medication.  

sorry, typo.  denosumab.

Wonderful advice and knowledge there Anhaga. So informative , thank you 🙏🏼 

More good information...I am taking notes so that I can remember all.  Thank you Anhaga and everyone else..Wonderful folks .

Hi Anhaga.  Made a mistake there, didn’t I?  Should have kept my mouth shut.😏😏

Hi Constance.  Not at all. If this site worked like healthunlocked it would be easy to correct any mistakes.  I'm forever fixing things I've written there, including deleting posts when I think I should have kept my mouth shut, and feeling frustrated that here I can't even correct a typo.  🙄?

Reeceregan,  My journey into PMR started  about 10 years ago with GCA,  That is when I started on 80 mg of prednisone and slowly tapered down to 0.  But then about seven years later I came down with PMR (no GCA) and that was in the year 2010.  If only someone would discover why our immune systems fail us it would help so many people and cure so many issues.  Maybe some day.  

I agree with Anhaga. Definitely DON’T keep your mouth shut. We need all the information we can get. We’ll sort it out if it’s wrong. On one of my posts I was asked what I take for extra pain relief if I need it...(paracetamol and codeine mix) .Gave the ingredients wrong way round. 🤭🤭🤭🤭

Hi Reeceregan!  Talking of Cocodamol, the name of mine (I live in Germany) is Talvisolen.  Until last week I could order packets of 100 (which lasted me about six weeks).  Now my chemists has informed me they won’t suppy packets of 100, only 20!!  That means I would have to have five prescriptions of 20.😡  As I take two per day on average I would need to go to the surgery once a week for a new prescription (or ask the doctor to give me 5 once a month)!  Mad!!!  The reason behind it is - pharma co wants more money.  100 tablets cost €19.99,  the 20 cost €14.99.  Can you believe that?  I can’t get my head round it.

Oh I believe it. Big Pharma and I are not friends. I avoid his help if I can get away with it. The inconvenience of having to bounce in and out of drs surgeries just to get a script is insane. It just clogs the medical system, I known it’s hard enough to get an an appointment as it is. When they charge those prices one cant help but think it’s more to line their pockets than help people who are addicted to codeine. I hope I’m wrong.

Last but one sentence!    Can it be anything else?  Why we who really NEED the medicine should suffer because some, excuse me!, idiots get themselves addicted to codeine I don’t know.

 I suppose I could be seen as an addict because I have been using Cocodamol for four years -  never more than two per day.  One can limit the intake!

Dear Reece, on the other hand without Big Pharma are doctors would be pretty limited. Also it does take ten to twelve years to get a drug onto the market so they are having to recoup quite large costs. 

My surgery now allows me to order over the internet for repeat prescriptions, and I have been given an initial prescription over the phone recently. My doctor then just sends the script to the pharmacy via the computer, which does seem to work very well. All I have to do is go and pick up the drugs. 

Constance,  here is USA our family physicians CANNOT prescribe pain medications like Vicodin anymore.  NONE.  We have to go to pain clinics and beg for them.  I had to wait one month to get an appointment in a pain clinic meanwhile I was in agony with broken vertebrae.  My doctor was not allowed to order Vicodin....to his credit he called the pain clinic and asked them to squeeze me in for an emergency appointment and I bless him for that.  So , since some bad people and doctors are misusing the system, all others are suffering.  It is so sad

That would make it so much easier. We can request a repeat script online at a cost of $40 but for a new script it’s a drs visit for $90. Still have to go in to the surgery to pick up though, then physically take it to a chemist. (Pharmacy). Scripts her can be up to $30 but these pain relief with codeine you could get over the counter without a script for about $12. 

It is integrering to compare with other countries. In Sweden we pay $ 12.50 for a visit to a doctor but we never pay more than $ 130 during a year. We get a rebate on medicine and after having paid $ 260 it is free until a year after the first purchase. To get a prescription we visit a doctor once but after that we can renew it without cost. The easiest way to renew a prescription is to do it online and after half a day you can buy the medicine att any chemist in Sweden. They also keep track how much you have paid

The prices in the USA are due to the fact there is no single payer - each company negotiates the rate. In the UK the UK has far more buying power and gets far better prices. But there is also a problem with Big Capitalism buying up companies that produce the generics and then turning the screw as single supplier - and most pain meds come under that heading as they are old and no longer under patient protection. It isn't just the pharma companies.

In Germany we don’t pay anything to visit a doctor (as long as you are insured under the national health system).  We pay between €5 and €10 per medicine.  We certainly are very lucky.  We can call or pop in for repeat prescriptions.

We don't pay for doctor visits either (Nova Scotia) but choices for pharmacy vary.  There is a seniors pharmacare but we opted out of it as the premiums are several hundred dollars a year and hubby already has coverage through retired workplace benefits.  Unfortunately the government has severely screwed up our system so we may soon not have many physicians left to visit for our free universal healthcare.  

Quick update on Pain medication.  I was at my doctors yesterday and I asked him about the new 2018 rules regarding prescription pain meds.  He told me that he CAN prescribe a few Vicodin, for example, for a short term pain issue, but a long term or chronic pain problem means going to a pain clinic. I just wanted to clarify this because I gave out some incorrect information.  But believe me, this is still a BIG change over past protocol.  Please forgive the error I made