Help with choosing a medication

Thank you Darlene for sharing your experience with Fosamax.  That is one of the meds I am considering taking.  I wish I had started taking it when I started taking prednisone 3 years ago.  I can't seemt to get down past 12.5 mg of prednisone.  When I lower the dose below that, the pain in my hips and shoulders roars back.  I am frustrated that I have been trying to taper the prednisone for 3 years and have gotten stuck at 12.5.  But now I need to make a choice of meds to build my bones.  Anyway ,  thank you again for sharing with me. 

Has anyone considered the hip and shoulder pain is not "just" PMR? Mine is due to bursitis or myofascial pain syndrome. When they are treated as separate entities, I need less pred.

Agree again.  My hip and shoulder pain originally came on as a result of PMR but as my inflammation rate has reduced over time from 53 to 2 and my pred dosage has dropped 

, a series of elimination and tests have shown the lingering shoulder pain  is now a rotata cuff impingement from the original frozen shoulders and arms,  and the hip pain is from my lower bulging discs and tight piraformis muscle. Stretching excercises and a massage/Bowen therapy specialist every so often takes care of that.

No one has mentioned that possibility to me so far.  How did your doctor diagnose those two separate from the PMR?  I would love to try Bowen therapy but the closest practitioner is 2 hours away.  The car trip would be impossible for me .  Oh, and I found out that there is a massage therapist that is only 45 minutes away but she is not licensed yet for Bowen,  However she has studied and learned it and is willing to 'practice' on me as long as I realize she is not licensed yet What do you think of that idea?

Not sure if you meant this for Eileen or myself but I’ll give you my answer for what’s it’s worth. As long as you realise that anything I say comes from my experience and Eileen is the expert. In fact it was Eileen who suggested to me a while back that my lingering pain may be from either bursitis or rotator cuff issues in the shoulder, and piraformis or MFP issues in the glutes/butt. She also suggested scans for the shoulder and bingo.it showed the rotat cuff problem. She also suggested either the massage therapist or the Bowman  therapist for the piroformis and I was lucky enough to find a therapist who specialises in soft tissue/ pain management massage and also is licenced for Bowen therapy and depending on how I feel depends on which one I have. My disc problems were prior to PMR but I had those under control through an excercise physiologist prior to PMR, but the PMR kicked it back into gear. I do my strengthening excercises when able and I can handle it. In fact, I just did 20 minutes of Body Groove dance excercise to a you tube video and feel great and empowered. Yesterday was totally different, had a nasty pain day that required extra pain relief. Just shows we should be grateful for each day because we never know what it will bring. 💪

Hi Reeceregan.  So good t hear about you journey.  You certainly have god help available t you via an exercise phusiologist and Bowen therapist.  And Eileen surely is an expert as you say and a godsend to all of us out here in cyberspace.  Also,  it is true that every day brings a different type or level of pain.  I never know how a day will turn out regarding pain level.  But one thing I learned to do is to be grateful and savor even an hour in a day that is pain free.  Boy did I used to take pre PMR no pain days for granted...You mention 'extra pain relief' ..  Do you mind sharing what you take for extra relief.  I can't say I have found anything that helps not even ASA ibuprofen, Aleve, etc .  Thank you for sharing your story and hope you are over your disc problem.  I have been given a brace to wear for 

?6 weeks to make sure my spine heals straight and not bowed over.  I have to wear it 24 hours a day.  It is cumbersome and I have to sleep in a chair.  No lying down in the bed because it is impossible to do with this brace.  However the support from the brace has greatly diminished the pain from the fx vertebrae.  I am trying to get used to it but it is difficult.  I pull the straps to increase the support a little each dae until I can totally straighten out my spine and stand tall.  That , I am told by the therapist ma take up to 2 weeks.  Poor me, I feel sorry for myself except that there are many worse things that could have befallen me, so I am grateful that I did get some good care and don't need surgery.  My goodness I never realized what some people have to endure.  The old saying to walk amile in my shoes is meaningful.  So glad to share with you.  Thanks.  MJ

Firstly let me say how sorry I am to hear of your back problems. I guess this is one of the reasons I have agreed to go on the Prolia. It’s more to prevent this happening than treating it after it does. I watched Mum wear a back brace eleventy seven years ago. First she had traction, then a brace, then an op. That brace was like something out of the dark ages, it had rubber shoulder straps, two metal rods going down her spine , and a rubber strap around her hips and she wore that 24/7. Torture! And yes, I have access to wonderful support here in Newcastle and one of the top rheumatologist who specializes in PMR/GCA is only 2 hours away in Sydney so if I feel I need a change of specialists this is the one I’d see. Right now I don’t need to change. I have Eileen, Anhaga, and the others on here for advice and Michdon who is my inspiration. Although he doesn’t know it. He is over 80, has had PMR for years and still ski’s. I think Eileen does too, or at least did.  I never could and never will but hey.. I can still dance in my gym gear! Not a pretty sight but no ones watching. 

Now, back to pain relief. If you are treating PMR with pred stay off the ibroprofen or any NSAIDS. They’ll do nothing and may cause stomach issues, ulcers etc. I take 25mg paracetamol and 500mg codeine in a combined tablet for other pain related problems. it’s an over the counter med but is about to go on the “script only” register as of this month. I won’t have any problem getting it. Not for my issues. At night and only if in pain that I can’t handle I take the same type of tablet with the same ingredients/dose but it has an added ingredient to help with sleep. I don’t take that one during the day or I’d fall down where I stand.

I don’t know if these would be strong enough for you, but you could try it. No harm done, you won’t become addicted to the codeine part unless you pop them every day. As I mentioned I am lucky in that I don’t have debilitating pain every day, it’s rare that I have to take anything other than pred. But I can do excercises to help my body recover and I’m not sure if you can from what you describe. It is wonderful to keep in touch with you, I feel we have similar things in common. Stay in touch. 

Let me check I have that pain relief dosage right.. may have it back to front. I’ll get back to you 😜

The only otc codeine med I can get has only 8 mg codeine and 300 mg acetaminophen, plus 15 mg caffeine.  I use it only for really bad headaches, and at that only very rarely.  Used to be able to get it with aspirin, but it seems the docs are more afraid of stomach issues than destroying the liver!

What an unpleasant experience this is for you, I"m so sorry.  But it sounds like you are getting really good treatment.  Once you are healed perhaps you should consider taking up Nordic walking?  It is really good for several things.  One is, the poles help people with balance problems and we know that the biggest risk for fracture isn't low bone density but falling.  More importantly, it improves upper body strength and helps maintain an upright posture, both good for those of us who are starting to bow forward, and the reason I took it up.

Hi,  Oh my goodness I read about the brace your mother had to wear and guess what?  That is exactly the same type of brace that I have to wear 24/7.  It is very confining as you ,but it really reduces the pain .  We now have a new system in USA that won't allow just any doctor to give out medications for pain.  Can you imagine that you doctor CANNOT give you pain meds?  We all have to go to a 'Pain Clinic" THis is the only place that will prescribe pain medication.  The reason for this ungoldly rule is that there is a terrible epidemic in the USA of illegal meds, mostly Vicodin, being sold on the black market along with doctors who are handing out too many prescriptions to people who may not really need them..  It is a scandal.  Anyway Arizona has required that  all legal prescriptions for pain meds be given out at a pain clinic.  So my doctor of 10years can help me.  This new law really punishes many decent people who are suffering terribly with pain.  Anyway,  We don't have the tablet that you mentioned with Paracetamol and codeine here that can be purchased over the counter.  For a similar medication here in US , we would need a prescription   . I love all of your tips and infor.  I agree that we have a lot in common.  I will keep in touch and share and hope something I share is helpful in some way too.  Mary Jane

I made a mistake in the above post.  I meant to say the because of the new laws in USA, my doctor of 10 years CANNOT help me by writing a prescription for pain meds.  He is not allowed.  So sorry for the mistake.

I will check out Nordic walking because I am not familiar with it.  It sounds like a all around good exercise.  My doctor who put me into this huge brace told me to walk at least 30 minutes a day right now.  I live in the mountains and so I will have to walk on a treadmill since our terrain is up and down and no sidewalks.  Thank you for the input , I appreciate it .  MJ

MJ, that’s the exact reason this pain med is going on the script only register. Australia too, has a sever outbreak of people addicted to codeine, OxyContin, etc, and it has made it so much harder now and more expensive, due to paying between $70-$90 for a drs visit just for a script, for those of us not addicted but in chronic pain and at times just need that little extra. We also have pain clinics but I don’t go to those, I’m treated for PMR//GCA pain first and foremost by the GP and Rheumy.  I also want to correct my earlier post, the ingredients are 500mg paracetamol and 15mg codeine. You can get ones with less codeine, 5mg or 8mg. The night time one has the same but also has 5mg doxylamine succinate to help with sleep. 

Yes, I had to correct my earlier post. Should have put my glasses on  and brain in gear before I started typing. It’s 500 paracetamol and 15 codeine, although can get 5 or 8 codeine, depending on the strength you need. The night time one has an added 5 mg of doxylamine succinate. Just enough to give you an uninterrupted nights sleep without the “hangover” effect the next day. 

I've got a feeling that the default otc used to be 15 mg codeine, but I honestly can't remember, but it might explain why I sometimes need two tablets instead of one now on the rare occasions I take it.  Anything else would be prescription, called tylenol 3 I guess.

When I had my broken leg I was prescribed 50 (yes, fifty) oxycontin or whatever it's called.  I took one look at the prescription and said I wasn't having that in my house.  An hour later (this is in the emergency dept at hospital) they tracked down another doctor who prescribed 20 tylenol 3 and although he didn't seem surprised by the kind of med that had been prescribed he was taken aback by the quantity.  And that prescription took me a year to use up, including a little help from hubby, as I slowly used them up for headaches, only needing a handful to help me sleep the first few nights after the break.  No wonder there's a drug problem if the residents are so casually over-prescribing to people like me who really didn't need anything so strong, and probably many if not most people in my position wouldn't have known any better and could even have got hooked from that one incident if they thought they needed to take the pills.