PMRGCAuk
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New here... questions

Hello everyone,

Wonderful site. Glad to have found it.

My troubles started mid-October. Most recently, saw my GP and started on prednisone 15mg daily. Have been taking it for 10 days.

The diagnosis (PMR) rests upon my symptoms and a trial of a few days of prednisone to which I responded not 'miraculously' but enough to be quite encouraged. All my bloodwork was normal, so in that sense, this is an atypical presentation for which she is referring me to a rhumatologist (the wait could be long).

My GP is on vacation (4 weeks) and I have questions. I am hoping you can provide some guidance.

My days have been up and down; some better than others. Most of the shoulder pain/stiffness had resolved. I was left mostly whit hip pain. Today is my worst day since starting the prednisone. It is morning and I have quite a lot of discomfort in the shoulders and hips.

1) Is 15mg not enough for me? How much better should I feel after 10 days?

2) OR, whatever placebo effect I had in the initial days has worn off and the cause of the symptoms is not PMR? (NSAIDs were not helpful at all prior to prednisone)

3) OR, does the work week and shoveling snow this weekend cause the symptoms to worsen despite the prednisone.

New at this, not certain what to think, was happy to have a diagnosis and a treatment for whatever it is that is going on.

Thanks.

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Welcome..based on your info I would suggest you have been over doing It! Into my second year at 10mg and would struggle with snow clearing.

If you have had goodish relief at 15mg until you cleared the snow. Usual figure bandied about is up to 70%reduction in symptoms I believe. Try resting for a few days (!) As difficult as that might be at the moment. If pain/stiffness continues to get worse try contacting Dr to see if dose should be increased. Some people need more 9than others. But as I say please pace yourself!! The fact you cleared snow suggested pred working.

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What were you doing yesterday? Shovelling snow?????? There you are - answered your own question!

The pred only manages the inflammation caused by an underlying autoimmune disorder that makes your immune system attack your body as "foreign". That means the actual illness is still chugging away in the background and exerting its effect on your body - just like flu is still there even when you use "remedies" to soothe the worst of the symptoms. You still feel ill. Your muscles are intolerant of acute exercise - and that, as well as the fatigue, must be managed by pacing and adapting your activity to minimise overdoing things.

healthunlocked.com/pmrgcauk...

healthunlocked.com/pmrgcauk...

Read the links - and don't think they don't apply to me, I'll beat this. You won't!

If it is PMR there isn't a placebo effect with pred - it is the only thing that works. But you have to do your bit and be patient. It was probably 5 or 6 months before the bursitis and tendonitis pain I had faded. On the other hand - 6 hours after 15mg I could move normally. But the pred gets directly to the muscles - it has to diffuse to joints so it takes much longer.

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Hi,

As others have said .........it’s the shovelling snow whot dun it!

Try reading this as well, and ease up on the physical stuff!

healthunlocked.com/pmrgcauk...

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OK. I understand that the prednisone will only work if I don't exacerbate the symptoms by going about business as usual.

I did shovel snow on Saturday. I thought the activity would help me with my stiffness and discomfort. I was shoveling what felt like tablespoons of snow at a time rather than my usual imitation of a gas-powered snow blower. I picked the wrong activity for loosening up.

Before starting the meds, I was praying for an out-of-body experience just to disconnect from the pain and misery. So, I was hoping that this diagnosis was the good one and things would get better. Maybe I was off to a good start and the last 5 days, work, exercise, did not help one bit and perhaps made things worse.

So I thank you for your input. I will read the references and continue to hope that I am on the write track from a diagnosis/treatment point of view.

thanks again.

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We have probanly all had experience of overdoing it at first. Pred makes you feel better and you think you can do 50% of what you did previously. Take it steady.

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Gentle exercise is good. And you will be able to do more in time. But you really have to start at a very low level and train again. Boring - but there it is!

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Sadly PMR is life changing and we cannot carry on our lives as we did before. Pred is a wonder drug and can produce magical improvements to the awful debilitating pain, so we fall for the fact we are back to normal. In my case my rheumie informed me that was the case. Should I say ex rheumie. PMR is very intolerant of exercise so as soon as you start to overdo things it will take over and make you hurt. You do need to exercise, but you should take it slowly and learn to STOP.

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Like you, I am also feeling the love for this site and, having only joined in last few days, have learned so much more about this condition regarding sleep, pacing, tapering - some terms I hadn't known previously. Exercise was supposed to be my new best friend according to a doctor appointment earlier in the year and now, thanks to reading here, I have clearer insight into why I am pulling muscles in my body left right and centre! Also, with no talk of a consultant referral, I am thinking I will request this at next blood/review in January. And allowing myself to rest will be a priority. What a great support, thank goodness I joined.

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Hello, the Pred also makes your muscles feeble. I’ve got GCA only and no PMR and prior to Pred I was very fit and active. I now have to be so careful not to pull a muscle and walking is about the only thing I can do reliably.

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Yes, likewise walking is my safe exercise. My chiropractor ‘banned’ me from the gym and exercise classes a year ago, said I was too fragile (pre Dx). But recalling the pain after body balance classes, I’m not inclined to go back. Indoor bowling is my new thing, some walking interrupted by an occasional bowl 😉 but my arms rebel for 2-3 days after, not enough to stop me though.

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MovingForward_Always:

You have more info now than is possible to digest all at once or trying to integrate it and interpreting the best way it applies to you.

You will figure it all out. Patience with yourself as well as with PMR. Please.

Just in case you "need a bit more" advice, I found that getting up and going to work in the mornings was much easier when I began to take some of my Pred in the middle of the night, (between 2 & 4 or when I awoke to go to the bathroom) so it is on board before the cytokines, the morning inflammatory chemicals that cause pain and stiffness are secreted. If you search the forums here for timing of medication you'll get more details.

If you do try taking it in the middle of the night, it is recommended to line your stomach with a bit of food, like yogurt, because Pred is hard on the stomach lining. I found that I awoke without much stiffness or pain when I took 5mg. at 2 am. I took the rest with breakfast. I did this on my own for a few days and then discussed it with my doctor. I don't necessarily advise that, but it worked for me.

There is a delayed release formulation I take now at ten pm. It is very expensive though. I get it thru my insurance here in the USA. In the UK it's is sold under the name of Lodotra. In the UK there is also a coated form of Pred that some people on the forum take. That should be easier on the stomach. I don't know the details of when it is taken.

And yet another recommendation. I find that QiGong or Tai Chi seem to be beneficial exercises for me, keeping me limber and limiting the weakness that Pred can cause. If I skip more than two days, I can feel the difference. Because I awaken without stiffness, I can do these exercises before breakfast, before work. It seems to help get me through the day better. I especially feel it now that I am tapering to 8mg and the Pred energizing factor is mostly gone.

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For info: Lodotra is not available on the NHS in the UK, you can have it if you pay the full cost yourself, IRO of £100 per month if you need 3 tablets to make up your dose. (comes in 1,2 and 5mg tablets, £27+ per tub of 30 tablets). Enteric coated tablets can be taken in the evening and will usually work by early morning when you want them to do their stuff. They can be had in the UK on NHS prescription but are not available anywhere else in the world.

I had 5 years of PMR without pred - aquafit kept me mobile. The earlier the class was in the day, the better day I had.

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I can agree with those advocating gentle exercise and not snow clearing!! When I started with pred I had to increase to 20mg as 15mg didn’t do the trick. I thought I was superwoman. I cleaned all my decking and also my paving. I ended up with three torn tendons in my shoulder and a reticular cuff tear. I am told these things don’t mend so Im stuck with a painful shoulder from my own stupidity and ignorance. Believe me I keep to gentle exercise now. A lesson sadly learnt.

Liz.

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Again, great supportive group.

Yesterday was bad for me. When I came home from work, I went straight to bed. The fatigue can be quite overwhelming.

Initially thought that I would go back to work today. Instead I stayed home. I need the rest.

I am trying to pace myself! I am trying to put into practice what I have learnt here.

Until I go from a working diagnosis to something more definitive, this will be very challenging: balancing work and rest and trying to maintain dome quality of life.

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A working diagnosis is a good way of putting it. There is no definitive test that is performed. Just symptoms and response to Pred.. Even the blood tests for inflammation aren't elevated in some 25% of PMR patients especially younger patients. There is a test for IL6 levels but that seems only to be used in research.

I reread Dorset Lady's summary last night after my post. I realize mine was repetitious. Sorry about that.

But there is one other thing I would strongly recommend. Please read the discussions here on diet and Prednisone. If you stick to a low carb, no grain, diet with no added sugar you will probably be able to avoid the Pred weight gain, increase blood sugar levels etc. I was a carb person before PMR, big-time. It was doable. And I even lost almost 25 pounds that I needed to lose. Pred screws with carb metabolism. Some here even find that their symptoms are better. Might be that carbs affect Pred as well.

Good luck.

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My Rheumy encourages exercise. In the past 6 months I did about 20 mins of light weight training, two days a week with a trainer and Zumba for a half hour twice a week. Tai Chi/Quigong once a week. This week I did Zumba for 45 mins. Today I did an hour, class was not too strenuous. On the weekend I just walk 2-3 miles. I generally rest in the afternoon and go to bed very early because I get up to take Pred at 5.

It takes a while to determine what works. Good luck. Stay in touch.

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