Finally I will be put on prednisone for my PMR what to ask?
Posted , 13 users are following.
Hi All
I have had PMR since November but my rheumy wanted to make sure I really had PMR before she put me on prednisone. Fair enough. I had one steroid injection in Jan which helped hugely (I went from feeling 2 up to feeling 6 out of 10). The steroid injection is wearing off as I feel so stiff in my shoulders and hips. Ouch. Anyway I see my rheumy on Weds and I am sure she will finally diagnose PMR and put me on 15 pred. The apt are always so rushed although I see her for about 1/2 hour. Please help me. What questions need to be asked? like what vitamins do I need to take. Some of you mention magnesium, vit D, etc. Also what are the measurements they will keep track of with my blood test like erythrocyte sedimentation rate (ESR)
plasma viscosity (PV)
C-reactive protein (CRP)
I think from all of you with your true pain of PMR and living with it probably know more than the rheumatologists so I will do the dead slow method of reducing pred. Will I need to take naproxen any longer?
One last question - did anyone else get nosebleeds on Naproxen?
A huge thank you to everyone as all your comments are helpful and worthwhile. I mention PMR to everyone I meet (almost) and it is amazing to find how many other people have it. Maybe if it is recognized more we could get treated faster which would save alot of pain and frustration.
Once again thank you in advance.
Whitefishbay
2 likes, 45 replies
molly1957 whitefishbay
Posted
best wishes Molly
whitefishbay molly1957
Posted
Yes I too believe you all know way more how to deal with PMR than the docs. You all live it. The prob with the consultants is they are too busy and unless you fall on the floor they just see you and on to the next one. C'est la NHS but I have been lucky so far.
Thank you again.
karen28161 molly1957
Posted
take care Karen
Daniel1143 whitefishbay
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Many my folks here have no evidence of elevated CRP or Sed Rate. I am one of those. What I have tried to do is to stick to an anti-inflammatory diet to keep down both inflammation and weight gain. Hard to say if the diet helps the inflammation, but I have held my weight. Beyond that, after seeing four different docs, what i now know is that there is no known cause and no known cure. Prednisone eases the inflammation but cures nothing. And so we wait. He may tell you PMR lasts an average of two years. I am in my second with fingers crossed. Down to 5mg of prednisone and flaring all the time...mostly shoulders these days.
Daniel1143 whitefishbay
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ceciledian whitefishbay
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tina-uk_cwall whitefishbay
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however, if they do think you have pmr then the customary medication is 15mgs for 6 weeks, 12.5mgs for 6 weeks then 10mgs for anything up to a year. I was on 10mgs for 6 months. Then at 10mgs many if us then start the dead slow and almost stop method and if you're very sensitive like me I only ever reduce by .5mgs so my reduction is even slower.
many clinicians like to also prescribe omeprazole for our stomachs. Well, this drug has problems if it's own so many of us ditch these tablets and take our preds with plenty of yogurt that lines our stomach and if like me you don't eat breakfast eat a biscuit.
Steriods are not good for our bones and there is a possibility that you could fall foul of that side effect, however, I take RDA amounts of Vit d, calcium and magnesium, although I do know that many on this site have these drugs prescribed for them.
One drug that some clinicians like to hand out like sweets is alendronic acid. I took this drug for 11 months before finding this forum quite by chance and this drug was being discussed. I then looked up this drug on line and was horrified with its side effects. So if this drug is prescribed I would request a bone density scan prior to taking it. Establish a base line for your density and then take it if you require it, but if you don't need to then don't. The vit d, calcium and magnesium should all help with your bones. Then there's the weight bearing exercises. Walking, etc, this helps hugely with bone density so always try and get in as much gentle exercise as possible.
naproxen is an anti inflammatory drug and once on preds you should not need this drug because the preds, if you are on the correct dose, should be dampening all the bodies inflamation. Not sure if this drug is the same as ibuprofen, but if it is then this drug should be avoided at all costs when taking preds, they are not good bed fellas.
i also have blood tests with my gp every 3 months. They test for all sorts including esr and Crp, but not everyone has raised esr or crp levels, but if you do then it does help dr's to see if the preds are doing their job and keeping these levels normal.
don't allow your treatment plan to be rushed, it will end in tears. The schedule I have given you is gold standard treatment so follow that.
all the best for your appointment and do keep us informed as to your diagnosis and treatment. Regards, tina
ptolemy whitefishbay
Posted
I did get some bad nosebleeds before PMR was diagnosed, but I was not taking Naproxen.
Anhaga whitefishbay
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lee63556 Anhaga
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I went to doctor this morning for the follow up of PMR. I am on 12.50mg from tomorrow onwards. Keeps the finger cross for me and hope for the best.
I have checked with the doctor about the AA and because I am on the Pred for PMR and I needed to stay on AA until I get off Pred. So adcalD3 is to protect the bone at the moment, it looks like AA and Adcal are protecting bone density as Pred is trying to takeaway from bone structure. (Did I said it right? Please correct me if I am wrong)
these are the follow up with what we were discussing a few days ago.
need to have a blood test again tomorrow. My last esr reading was 39
ptolemy lee63556
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lee63556 ptolemy
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ptolemy lee63556
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snapperblue whitefishbay
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The only thing I'd add to the other replies is to have a contingency plan- what to do if 15 mg does not have a huge effect in a day (maybe 2), so you don't get stuck in pain over a weekend. (This kind of thing always happens on a weekend.) I had to go to 20 mg or even 25 to get relief. My doctor was concerned that this meant I did not have PMR, though otherwise I was a texbook case. I definitely have PMR, I just needed more prednisone to get it under control at the beginning.
If you can manage the effect prednisone has on the bones with calcium and vitamin D, that is great. I already had osteoporosis, so I had a treatment of Reclast, which you do only once a year.
Some doctors act like the prednisone should "cure" the PMR. It doesn't, it just reduces the symptoms. So you can't expect the PMR to go away because you take pred- as Eileen says, it will last as long as it lasts- and that is how long you'll have to take prednisone. Many doctors have a set timetable for eliminating prednisone, rather than reacting to how the patient is responding. They have good intentions- prednisone can cause problems and we all want to get off it as soon as possible. But not so soon that you are in misery from the PMR!
I find the doctor can understand and respondto my questions in less time if I have them written down.
I hope you have a doctor who listens to you! Good luck!
whitefishbay snapperblue
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So so tearly and fed up with being cancelled last minute. Just shameful. The do not care that I am so still I cannot go up stairs hardly.
tina-uk_cwall whitefishbay
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do you have a primary dr that can see you? Not every patient in GB sees a rheumatologist.bregards, tina
Anhaga whitefishbay
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snapperblue whitefishbay
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15 mg is not that high a dose- my rheumatologist thought I might have GCA, and started me at 60 mg- so don't worry that taking 15 mg when you get the Rx filled means you can't go on a regular morning schedule the next day.
I hope you are much, much better in 24 hours or less!
I am shaking my fist at your rheumatologist in solidarity with you!! Maybe good riddance if you had typical PMR symptoms and she did not try the oral prednisone first, but you deserve better treatment.
maid_mariane whitefishbay
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As one person stated prednisone relives the pain but we syill deal wirh all the other symptoms. As for bone density pills my GP said forget it but rumi wants me on even though my bones scans are great. I tried the 1 a week pill and was sick all weekend with flu like symptoms so no way.
Alot of patients were discussing the side effects on this site and frightening. I take my vitamins and eat and drink milk products like i own the cow.😆
Try splitting your dose.
diana21296 snapperblue
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whitefishbay diana21296
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Anhaga whitefishbay
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Anhaga
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iellen32 tina-uk_cwall
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Based on my experience after trying both ways - splitting the dose of Pred and/or taking all at once, it works better for me to take it all at once at breakfast time.
This is one more thing showing us how much we are all different!.
🌸
iellen32
Posted
Thank you.