Finally I will be put on prednisone for my PMR what to ask?

Bones, joints and muscles
1

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

Hi naproxen does nothing at all for pmr I was taken that before being diagnosed last year as soon as I started 15mg pred I stopped taking it and within a day I was free of pain and stiffness. I was also already taking vit D having been diagnosed deficient a few years earlier I think this was a reason they looked at pmr for me sooner as symptoms are very similar . I find this site more useful than my rheumatologist to be honest , he never does blood checks or anything , he just asks how I am doing and even though I say I've been tired or had to up my dose he says I'm happy with that keep doing what your doing and I will see you again in a few months let's hope you have better luck with yours 

best wishes Molly

3

Thanks Molly.  I am on Naproxen for the inflammation but only until I get the prednisone.  

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. 

4

In my experience, the Rheumy's have few answers to your questions.  Everything I care to know, I've learned from this site.  

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.

5

Let me add that if I take a modest amount of ibuprofen in the middle of the night I feel much better in the morning.  I have also found naproxen helpful for periodic pain

6

The most reliable "test" for PMR is to see if it responds to prednisone. You apparently did with the local injections although typically a short course of oral prednisone is prescribed if the doctor is not certain. Most doctors will monitor CRP and ESR although about 20% of patients do no have elevated inflammation levels in their blood. Naproxen should be discountinued as NSAIDs do not help with this pain and can cause ulcers and reduce blood clotting factor. (I don't take now but I did get nosebleeds from low dose aspirin). Prednisone is also hard on the stomach so many doctors suggest takiing an antacid such as omeprazole or ranitidine. Vitamin D and/or calcium are recommended to help prevent osteoporosis (also a pred side effect). You should also be aware of GCA symptoms as they can develop along with PMR. You can get loads of info from websites such as the Mayo Clinic, American College of Rheumatology or webMD. I actually diagnosed myself this way before I saw my doctor, and I had never heard of the condition before. Good luck!

7

Molly I must have the same Rhumy as you , he never takes blood test , never asks to see me unless I ring his nurse and say I Havnt seen Rhumy in 12 months ,then when I see him he says continue what you are doing ,but try to reduce your PRD ..........what a waste of time going to see him to be honest , 

take care Karen 

8

Hello whitefishbay, you know there's a very easy way to tell if you have pmr or not and that is to see if you respond to 15mgs of prednisolone, so I am concerned already as to how much pmr knowledge your rheumy has?

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

9

As the others say 15mg of pred should work wonders within days if not hours. I just take vit D and calcium supplement in addition which is recommended due to possible pred side effects. Although I had a blood test which showed me vit D deficient. I have become a diet bore since getting PMR, my friends must be fed up with me! You should have a Dexascan to check your bone density if it is decided you should stay on pred. My rheumy did not organise blood tests I just arrange them every so often at my GP's surgery. The nurse and I decide which blood tests to take! In addition to ESR and CRP I also occasionally have Full Blood Test, U&E, glucose and vit D, possibly others I have left out, every so often. I used to have ESR and CRP every month but have extended them to every three months if results are OK. 

I did get some bad nosebleeds before PMR was diagnosed, but I was not taking Naproxen. 

10

Good advie on here already.  If you get 15 mg pred and it works as expected do not even consider starting taper for five or six weeks, and not more than 1 mg per week. Go much more slowly once you hit 10 mg.  Naproxyn - used to take it for migraine.  Miraculous drug.  Until I had a major gastric bleed.  (This was long before  PMR and pred.)  Will never take it or its relatives again.  Have never had a problem with plain old aspirin.

11

Like you, I am surprised by how many people have had PMR and also by the fact that no one else has ever heard of it.  Strange.

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!

12

The hospital just cancelled my apt so need to find a new rheumatologist that I can actually get in and see.  I did have an emerg prednisone prescrption which I have filled and will start today (can I take 5mg at night with a meal) and have 10 mg in the morning?

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.  

13

Whitefishbay, do try and take the prescription all at once, in the morning. It can be taken as you say but try it all at once first.

do you have a primary dr that can see you? Not every patient in GB sees a rheumatologist.bregards, tina

 

14

When I got my prescription it was filled mid afternoon.  I went straight home, got a snack and took my 15mg all at once.  Had no plans to wait until the next morning!  I didn't know how quickly it would work.  Within six hours I could detect an improvement.  By the third morning when I got out of bed and was puttering around I realized I had not had to plan how to get up.  I'd just got out of bed in a normal way without having to plan every painful movement.  Apparently it's perfectly fine to take the first dose late in the day and then start the proper early morning routine the next day, but at the time I didn't know that and actually phased in my time of dose by making it earlier each day by a couple of hours until I got to about 7 am.  Always make sure to have something to eat and drink.

15

I get nosebleeds on prednisolone although it is not listed as one of the many side effects..  Mentioned it to rheumy and GP but both just brushed it off and said maybe the steroid had thinned the skin in the nose!  I had never had a nosebleed before in my life!  I turn the shower to cold when I wash my hair and don't drink really hot drinks are 2 tips.

 

16

Like Tina-uk, I suggest that you just take it all when you get it, then take it in the morning too.  I never needed to split the dose; others who are taking pred but have a hard time in the morning will do this or will take it all in late evening.  The truly dedicated get up at about 2 am and take it, since the maximum effect is about 4 hours after taking the pill.

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.

 

17

As i mentioned before many of us split the dose. I was taking 5mg at 5pm but now at 3pm since pains started to return in the afternoon and am much better.

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.

18

If your dose doesn't last 24 hours, do split.  I take 2/3rds at 5am after small dish of natural yog to line the stomach which I take to bed and is when I wake and then take the remainder at 5pm. I then go  back to sleep.  Then I am PMR pain free. Before, I was waking at 2am in real pain, then waiting till breakfast to take pred and I could hardly walk by that time.  As soon as I was split, all was well! My GP had never heard of splitting the dose but has taken it on board. Good luck..

19

Thanks Diana 21206. Great advice. Really appreciate it.

20

I had to start on 30mg and even then I was still only 70% pain free until I spit the dose, early morning and tea time. Stayed on 30 for 6 weeks and was then able to reduce to 25mg.  Now on 13mg but backache sometimes and weak wrists.  Every day is different.