I have been on prednisone 20 mg and am still experiencing neck, shoulder leg etc. pain. I am having difficulty reaching my doctor for advise as to how much to increase the pred dose, 1,5,10mg? Is there a standard formula?
Hello lori, I'm sorry to hear that you are still experiencing pain even at 20mgs of prednisone, however, any chance you can supply more info. Have you been diagnosed with PMR or GCA or both and when. what was your starting dose and explain your tapering regime if any.
There is a sort of standard formula for starting doses in regards to PMR -20 or 15 mgs for six weeks then taper down to 15, 2.5, 10 each dose for six weeks then at 10 mgs for anything up yo a year. GCA starting doses are 60-40 then reduction to 40, 30, 20, then as PMR, again six weeks at each dose.
the starting dose of 20mgs for PMR is normally the upper limits because most patients see a huge reduction of PMR symtems at that stating dose or lower, 15mgs.
have you experienced any improvement at all to your symptoms. There should be at the very least 40% improvement within the first 24 hours and thereafter a good 90% of improvement over the following weeks. If there is no substantial improvement within this period then most specialists begin looking for other causes and dismiss their original diagnosis of PMR. With regards, christina
Opps, dosage should be 12.5, not 2.5 sorry
How long have you been on 20mg? Has there been a noticeable improvement in the pain and stiffness? Was it your GP who made the diagnosis or a rheumatologist?
If you follow this link
https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316
you will find a post with links to other useful sites. The next to last link is (as it says) to a paper aimed at GPs to help them with diagnosing and managing PMR. It includes a suggestion for distinguishing between very likely PMR and other possibilities.
The recommended starting dose for PMR is 15-20mg. This should achieve an improvement of about 70% within about a week and a noticeable difference should be seen quickly. Some patients may need up to 2 weeks. If this doesn't happen then it is probably a better idea to reconsider the diagnosis and do more investigations or refer to a rheumatologist. There are several things that resemble PMR that do NOT respond so well to pred - increasing the pred dose is not the ideal way to go about working out what it is since the pred may mask the indicators to the correct diagnosis and the rheumy will then ask you to reduce so they can see what is going on.
Do not expect to be pain-free. Only very lucky people achieve that. If you have bursitis pain, tendonitis or synovitis as part of your PMR the pain from these will take some time, often months to improve unless your doctor tries local cortisone injections. On 15mg oral pred mine took about 6 months to really disappear.
When you started taking the pred did you feel much better at first? Did you then go back to doing normal (pre-PMR) activities because you felt so good? If so, that could account for the pain. Your muscles remain intolerant of acute exercise. They do not tell you that you are overdoing it, you will wake with aching muscles as if you had run a marathon and then they will take days to recover - even though all you did was the cleaning. Part of the management of PMR is rest and pacing yourself in your activities.
As Christina says, other than what I have said here, we can't make more suggestions without more information. But it isn't a case of just increase pred until you get a perfect result - that rarely exists and will lead to confusion and unpleasant side effects.
Thank you Christina,
I was diagnosed last summer with the routine tests: cprotein and sed rate. I was started on 10 mg pred and did very well for about 2 weeks then the pain cmae back. i was put on 15 mg with ltlle change. i was sent to see a specialist after a few months of no success treatment and after a battery of test PMR was the dignosis of exclusion. Since I have been on 20 mg of pred daily, I still ahve the neck and shoulder pain, though worse in the morning, it never really goes away. I suffer from night sweat where i am litterally doing the back stoke in bed to stay afloat. My doctor told me that he has patients that require up to 60 mg pred/day to control symptoms, and although i really do not want to increase, i am wondering what is the best increment to try. Any advice or help is apreciated. Thanks again.
If you need 60mg to control "PMR" symptoms the underlying cause is not what we mean by PMR here! You often need 60mg to manage GCA symptoms but anyone who needs 60mg for PMR symptoms almost certainly does NOT have PMR. If 30mg (at most) doesn't achieve a good result then I'd suggest you need a different rheumy!
That said - there is something called myofascial pain syndrome that affects shoulders and low back and can cause pain similar tp some of PMR and is not uncommon alongside PMR. It causes knots of inflamed muscle fibres in shoulders (trapesius muscle), alongside the spine in the mid-back and in the lower back where a baby's dimples are. Each of these can cause irritation of nearby nerves as the muscles go into spasm and lead to referred pain in shoulders and neck, into the ribs or into the hips and thighs. The trigger spots of inflamed muscle fibres are concentrations of the same substances that cause the pain and stiffness in PMR, they are called cytokines.
The night sweats are also part of the underlying autoimmune disorder that causes the symptoms we call PMR but that is not altered in any way by the pred, it just manages the resulting inflammation. The pred itself also causes night sweats - so they could be due to either or both.
My back problems were treated by a technique called needling (quaddling in German) which I think is available in the US - it can use cortisone or saline or even dry needles. It is very painful but does work very well for difficult cases of very hard spasmed muscles. I have also had manual mobilisation of the trigger spots done by physiotherapists - though that often makes it worse before it is better but it does work. Another technique that helped me and also has helped a lot of people is something called Bowen therapy and I know several people on the forums for whom that has worked wonders. It is very gentle - google it and you will find videos showing how it is done. It looks very inneffective but it isn't, believe me!
Before upping your oral dose I would see if you can find any of these options to improve the shoulder and neck pain. Or see if someone will try local steroid injections into the shoulders. Do you have any dental problems affecting your bite? I had a wisdom tooth that was projecting too far - removing that has almost cured most of my shoulder and neck problems! If you were to take enough pred I imagine the pain might improve - but the higher doses are unpleasant in terms of side effects: not sleeping, weight gain, developing diabetes, raised cholesterol and hypertension in the longerterm. Do try manual techniques and local steroid injections first. They cause fewer side effects and you should get away with a lower oral dose - a bit like using Vanish on a stubborn spot to remove it before a general wash in the washing machine!
Hello lori, I am saying that you have received treatment for PMR for approx 7 months? I am not medically qualified and can only really speak as a fellow PMR suffererer but 10 mgs of pred is not standard starting dosages for PMR hence although you had initial relief from the dose, the dose long term simply wasn't enough to cope with firstly controlling the current inflamation but having the strength to keep the inflamation under control, and subsequently the inflamation raged out of control to the point that even the standard dose of 15mgs proved fruitless and now 20mgs is also not really making an impact.
night sweats are a common side effect of preds so although most uncomfortable they will subside as the dose reduces.
however, although as I said I am not medically qualified your Dr is quite wrong in relation to the 60mgs to control the symptoms of PMR. 60mgs is the very top end for the first dose of meds for GCA not PMR. As I said the top dosage for PMR is 20mgs. That dose is more the norm and 60mgs would surely be an exception.
i cannot make comment re upping your dose. Eileen will hopefully offer some balanced information on that, but what I will say is that I would ring up the rheumatologist secretary and secure a very quick appointment to see your rheumatologist because this problem needs sorting as pain of this level should not be tolerated. I estimate that you have been on 20mgs for over 6 weeks now and I believe there should have been a considerable improvement to symptoms and there hasn't. All the best christina
I have never been absolutely pain free with pred and have shoulder, neck and leg pain, but it is a million times better than before I started pred and does vary from day to day. I also had really bad sweats on 20mg but that has improved no end as I reduce.
I really appreciate all your input, I am certainly open to try anything other then more prednisone, I will look up these alternatives and hopefully something will help. It is very difficult to see a rheumy here, there are so few of them, I have an appointement in may but in the meantime i will give these other options a go. Thanks to all of you who have responded,