I have just found this forum and am so pleased to be able to read of others experience with this problem.
I was diagnosed by my GP in June 2014. It was a routine check up and I just mentioned that I had some stiffness in my legs and arms. It wasn't anything too serious, I had put it down to olld age (Iam 72). A blood test seemed to confirm his diagnosis. He put me on a dose of 20mg of Cortancyl (pred). Perhaps I should say that I live in France. It seems, looking at the forum that the start off dose in the UK is 15mg. I felt an immediate improvement and was able to continue with life as normal being pretty active for my age.
I was referred to a rheumy who I continued to see from July to March this year. Somewhat surprisingly, I thought, she was the only rheumy in our "county" town. Anyway I found her very difficult to communicate with and had no rapport with her. It seemed that she doubted the diagnosis as I she was able to manipulate my legs and arms with no discomfort on my part. Anyway I continued to see her and to reduce my dose regularly. It is at this point that I wish that I had had the foresight to keep a diary of times and dosages.
We were away, in Spain, for January and February and I think at that time I was on a dose of 12 and a 1/2 mg. I felt well and did a lot of walking.
On my return I was told, by a friend, of a rheumy in a town some 30 miles away with a very good reputation, so I decided to change.
I had my last appoiingment with my first rheumy in March and was reduced to a 10mg dose.
I now have the details of the doseage reduction, from the second rheumy, which I feel may be too fast.
On the 23rd April he prescribed a dose of 10mg (7mg am and 3mg evening) for 10 days.
Then 8mg (5 and 3) for 20 days.
On the 22nd May 7mg (4 and 3) for 4 weeks
Then 6mg (3 and 3) for 4 weeks.
Since early May I have had a lot of pain in my right thigh but not any major muscular pain in the other thigh, arms or shoulders. During the last few weeks this has become a problem and if I do any walking it becomes extremely painful the next day after which it calms down again. I mentioned this to my rheumy who gave a (Gallic) shrug and suggested I take paracetamol when necessary.
Is it normal for the doses to be split up like this?
Today is the day that I should reduce my dose to 6mg but I have decided to stay on the 7mg dose until I see him next. Any thoughts on this?
sorry if this is too long a post please bear with me!
Written by
Deemar
To view profiles and participate in discussions please or .
The main advice is to take the complete dose as early in the morning as possible. However, there are a few people who have found that splitting their dose morning and evening has helped them overcome particular problems they may have such as severe early morning stiffness failing to improve for many hours following their daily dose.
If you were doing well taking 10mg in a complete dose, I do not understand why your new rheumy has suggested changing this routine to one where you split the dose. Certainly his advice to reduce from 10mg to 8mg after just 10 days is both too soon and by too much. The most recent advice is not to reduce by more than 10%, so a reduction from 10 to 9mg after about 4 weeks would have been a wiser option.
As you get even lower on the steroids, you will need to go even more slowly as each reduction in dose is a higher percentage than the previous one. By making smaller reductions over a longer period, it is easier to see the point at which any lurking inflammation may be rearing its ugly head again enabling you to quickly return to the previous dose which then becomes your 'maintenance' dose for a little longer.
As most PMR pain tends to be bilateral, your one-sided thigh pain may be due to another cause, and it's possible that a cortisol injection may have proved helpful with that particular problem. Although walking is excellent, it may be that you are perhaps doing a little too much in which case you are aggravating that thigh muscle - our muscles can be quite intolerant to too much exercise whilst PMR runs its course.
Hallo Deemar, That does sound rather a fast reduction particularly as the adrenal glands are being asked to wake up at around the 7.5mg mark as they have been relying on the steroids to do their work for them at the higher doses. I am amazed you sound so well. If your body says Don't Reduce for the time being, listen to it, you are more aware than any rheumy. I started keeping a spreadsheet of dose and also how I felt each day using a colour code, green, orange, red. It has proved useful. I have also added a column on activities. I think I may be becoming a nerd.
Also if you find taking the whole dose at once is better rather than split do that too. Some people split it as the pred effect runs out in less than twenty four hours, so they need a top up, it seems to vary from person to person, most people just take one dose.
Also are you taking vit D and calcium tablets? It is a good idea with steroids, my doctor prescribes them for me, although you can buy them over the counter. I also had a bone density scan early on as well.
Experience suggests that that reduction is far too fast - the pred is only managing the symptoms of the PMR and that is the sort of reduction you would use to reduce to zero and get off pred altogether. That will only work when the underlying autoimmune cause of PMR has burnt out and gone into remission. Since you seem still to be OK that isn't an immediate concern but much smaller step downs are safer in that if the PMR is still active you will find what you are looking for more accurately: the lowest dose that manages the symptoms as well as the original starting dose. It could be the 7mg you are at - or it could be 3mg. You can't tell until you get to the next dose down.
I would suspect that your thigh pain that is aggravated by walking could be trochanteric bursitis - it causes pain on the outer aspect of the thigh, usually sort of where you can feel the bone. Is it also made worse by going up stairs? You could try using an ice bag. Mine always seems to need cortisone but it is a long standing problems alongside the PMR.
Where in France are you? A lady on another forum is not far from Limoges.
I think you've been reducing too quickly, although at times I think I'm reducing too slowly. Was diagnosed with PMR from June 1st 2013 and have been at 5mg since February. Then I stopped reducung as I was a candidate for a very hilly area in the local elections in May. I managed this year better than last but kept my dose at 5mg. On the last Saturday before the elections I tripped over a cat scratching post and somehow tore open my right shin, which led to 2 nights in hospital. Then I had a drug change for enlarged prostate so didn't seem right to drop pred until I was used to the new drug. My shin wound is improving - no infection but a small area has bled again - having it dressed again by a nurse tomorrow, which happens to be my 70th birthday. My 2 sisters are visiting for 3 days (staying in a hotel) but will be a stressful time. I I'm planning starting my next reduction on Saturday (1 x 2.5mg, followed by 6 x 5mg). I'll see how it goes and keep on that dose for a minimum of 3 weeks.
Thomas, why not hold off on that planned reduction for a little longer, especially as you say you are about to have a "stressful time" with family visiting. Added to that, you are also needing ongoing treatment for your leg wound (what a horrid experience that must have been!) You have been wise to stick at 5mg since February to cover your extra activity during the elections, so a little longer at that dose until your celebrations are over is nothing in the grand scheme of things. 5mg is considered a 'safe' dose as far as side effects are concerned, and it might help you to know that my rheumy kept me at 5mg for some 5-6 months at one stage following a flare (longer if he hadn't agreed to compromise with me!). With hindsight, it was the best advice, completely controlling the inflammation and giving me a head start to continue my 'journey' successfully (albeit very very slowly) all the way to zero Pred and remission. Many happy returns for your 70th birthday tomorrow!
I have had Polymyalgia Rheumatica for over 2 years but been off steroids for about 9 months. No remission is guaranteed when you come off steroids, my doctor said I would still have aches and pains and stiffness for quite some time. Apparently it takes 2 - 3 years to burn out!
Many thanks for your replies. On reading through the forum I do feel that I am lucky in as much I haven't had the pain and problems as many have had.
This morning I have taken my 7mg in one dose and I shall talk to my rheumy next time I see him about going up to 10mg again and staying there for a while before reducing much more slowly. Any thoughts on this much appreciated.
Piglette, I shall become a nerd like you and start a spreadsheet. I already have one for my blood tests since last June. We are lucky here in as much as we get a copy of our blood results. I go to the lab in the morning and my results are ready, on line, in the late afternoon. So, if there are any problems they can be seen and dealt with immediately. I have not yet had a bone density test, I will ask for one next time. I take vitamin D every 3 months, Zymad 80 000UI S which comes in a capsule which I mix with a little water and drink. I will ask about taking the vit D and calcium tablets. I was initilally prescribed alendronic acid which gave me dreadful heartburn. After reading about the side effects I stopped taking them.
PMRpro, I will explore trochanteric bursitis. The pain is always there but not too bad unless I have done more walking than I should. Then it is very painful even when lying down and the pain stretches all the way down to my ankle. ..Too much walking is about 20 minutes at the moment. Thankfully, we don't have stairs! We live near Mont de Marsan between Bordeaux and the Pyrenees.
Hi Deemar, I have also got the bottom to ankle pain which makes me limp like a one armed bandit! Sometimes there is also a pain point at the top end of the muscle at the front right of my shin bone (tibialis anterior) and in the calf Today I took my usual 14mg pred dose but by 10am I was having GCA pain in my temples so I took another 1mg pred and by 11.30 head pain gone and leg pain down to a quarter! So mine is PMR as it has responded beautifully to the extra 1mg. Walking does definitely exacerbate the problem and I have a bit more than usual walking to do tomorrow, so will see what happens.
Unfortunately nothing is set in stone with this illness and what is for one is not for another, yet all are recognisable between patients. I am quite glad that the Docs are no better at this than we are because they don't object to us adjusting our dosage when it hurts again instead of having to wait for an appointment. But I am exceedingly envious of your blood results online!
Well, I started taking the complete dose in the morning, last Monday, and got more leg pain. After two days I went back to splitting the dose and had some improvement. It may have just been a coincidence, who knows?
I have an appointment with my rheumy a week on Thursday and am definitley not reducing any more until I see him.
As you say, Celtic, pmr tends to be bilateral. This mystifies me as my pains are predominately just on the right side, in fact at the moment the only pain I have is the thigh pain with just, occasionally, a slight pain in my right upper arm muscle. I don't think that I have overdone the walking in fact I don't go for a walk as such anymore as I know that i will pay for it afterwards. I can do housework, cooking and a bit of gardening providing I do it in short bursts and take a rest in-between. A trip to the supermarket is too much walking and I pay for that later. I googled trochantic bursitis and not sure that is the problem, my thigh pain is not increased by touching or pressing on the area.
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Take it easy, you've been through the mill, hope you enjoy time with sisters.
Alendronic Acid and...
Slop tapering - doing it my way
Reducing - too fast ???
