Isn't the steroid supposed to prevent a flare?

I started out on 40 mg. of prednisone for a week. Was on bedrest for 3 weeks. Saw minimal changes from many symptoms, then my doc spoke with rheumy and they dropped it to 20 mg. without any noticeable rapid change. Labs sky high. Gradually improved... Saw the rheumy on day 21 from onset, and was mostly pain free by that time, and changed that day to Medrol and labs finally responded.

I have not been in pain since other than occasional twinges or mystery pains that seem to take care of themselves...my primary complaint has been side effects from the med...sleep disturbance, insomnia, hot flashes, shakiness, irritability, etc.

In 4 months, I have titrated down from 20 mg to 10 mgs and am holding at this level now for about 6 weeks.

The doc seems to feel that there is no hurry to reduce... I pressured him to do so because the side effects from the steroid were making me truly miserable. He doesn't seem worried about the overall level as long as I feel okay. I had dropped from 12 to 8 mg and I had terrific headaches, sweats, just sick and he immediately bumped me back to 12 and lowered me to 10 later without much ado and here I sit. I must say, I do feel better at this level than I did at higher levels, as the side effects from the pred are greatly reduced.

I am reading about so many others who are still in pain every day. I thought a relapse meant that they went from reduced or no pain, into a flare ... And that flares weren't likely if you were stable on your dose. Are those in pain not taking enough steroid?

I'm learning a lot here and I am so grateful to have found you... Several people have questioned my diagnosis... I do have great faith in my rheumy and he is greatly respected... He is very smart and up to date on recent studies, etc. I'm beginning to see some connections into some past happenings that may have been the actual onset of PMR that my GP missed at the time.

Can you define remission and relapse for me?

Do other find yourselves sensitive to sun?

What kind of headache should alarm me (since I do not have GCA at this point?)

10 Replies

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  • Remission just means you have no symptoms - and that could be due to adequate and effective medication or it could be because the underlying autoimmune cause of the symptoms has burnt out and is no longer causing them. Relapse is when you have had a period of remission without any medication and then the symptoms return.

    A flare on the other hand is just a return of symptoms that are worse than you have had. They can happen because of reducing your dose too fast or too far - that is the most common cause. Or they can happen when your dose is stable and you've been fine but the underlying autoimmune disorder decides to become more active. That means more of the inflammatory substances, the cytokines, are shed in the body in the morning and so more pred is required to neutralise them. If there isn't enough, the excess leads to more inflammation, pain and stiffness.

    The usual figure quoted for a good result with pred in PMR is achieving about a 70% global improvement in symptoms within a week or so. It is very unusual for pred to achieve a total relief of pain though stiffness is usually pretty good. There are other things that are often found alongside the typical PMR symptoms that can be due to myofascial pain syndrome, for example, or to bursitis, which is often part of PMR. In the case of bursitis it will take much longer to improve with oral pred because the blood supply to the bursae is poorer and it simply takes longer. My muscle pain and stiffness was wonderfully better in 6 hours on 15mg pred, the bursitis/synovitis in hips and feet/hands took 6 MONTHS to go.

    So in some people they won't get a better result with a higher dose of pred - or not until it is such a high dose there are unacceptable risks associated with it. If PMR is suspected the recommended starting dose is up to 25mg/day, never above 30mg. It isn't necessary in the vast majority of cases. GCA is different if vision is at risk - then you need high doses, as much as 80mg or even 100mg/day, to try to reduce the inflammation that is stopping the blood flow to the optic nerve as that can lead to irreversible loss of sight - that's worse than even the most horrible pred side effects. Another factor is that many doctors will try to reduce the pred dose despite returning pain - be grateful you have a doctor who feels there is no hurry to reduce. They are like gold dust!

    Don't be too quick to put all your side effects at the feet of pred - PMR itself can lead to disturbed sleep, irritability ( I had a VERY short fuse!), hot sweats and other things your GP may say are pred. No they aren't always - I had them all in the 5 years of PMR without pred. You will find they get a bit better in time as your body gets used to the pred. You will learn to rest when you can - and having a rest in the day may well improve your sleep at night.

    If you tried to drop from 12 to 8mg I'm not surprised you felt ill again! Slow and steady achieves far more - and from here 10% should be the maximum you try at one time. Even less is better to avoid such episodes.

    GCA? No, not always headache, but headache, scalp pain, jaw pain when chewing or speaking (claudication), feeling generally ill, increased PMR symptoms, and above all any visual symptoms such as blurriness, double vision, sensations of a curtain across the eye are all signs of GCA and should result in an immediate trip to the doctor, even the ER if you can't see the doctor NOW - just as you would if you thought you were having a heart attack or stroke. Visual symptoms of course can be a sign of stroke so SHOULD result in an emergency call.

    I found heat more difficult to cope with so sensitive to sun in that sense, yes, I suppose so. Is that what you mean? Being on pred also makes you sensitive to sun in the sense of you may burn more easily - you need high factor sunscreen if that is so. There is some evidence of increased rates of skin cancers (not melanoma) in patients who are on pred.

    Have I answered everything? Ask again if not or if I'm not clear.

  • Thank you so much...

  • I think this is the best and most concise summary I have seen. Well done!

  • Hi,

    My opinion, in layman's terms - sure PMRpro will come along with better medical explanation.

    If you have reduced so quickly with few problems, then I would also query whether you do really have PMR. The lab tests may indicate you do have PMR. but by themselves they could indicate other things as well.

    In my case, my bloods tests gave high reading a couple of times, and my doctor assumed it was my GCA flaring, although I had no increase in pains etc. I can understand why she assumed this and increased my Pred - she had failed to diagnose GCA over a period of 18 months and consequently I lost sight in one eye. So in essence she panicked slightly. In retrospect I realise the increased readings were due to stress - my husband being very ill and nobody able to diagnose why, and then later, the diagnosis of his terminal cancer.

    A flare occurs when the patient is not taking enough Pred to control the inflammation, and may build up slowly over a considerable time whilst the patient is reducing Pred without realising it. Or, if the patient does a big drop in one step a flare may happen.

    Remission is when the cause of the inflammation burns itself out. It's not cured, as such, but believed to diminish or disappear after a period of years. Sometimes it goes completely, but for many people it seems to lurk in the background waiting for something - stress, trauma, whatever to set it off again - I.e. a relapse. As I said in an earlier post, the length of the illness varies, and once a patient is on Pred, then the theory is to reduce the Pred, keeping the inflammation under control until it burns out.

    Yes, Pred does make us more sensitive to sun, it affects the skin as well as everything else it would seem, so you need to take more care. Use a gentle moisturiser all over, and a good sun cream as well as covering up more, even if you are used to the sunshine.

    As for GCA headaches, all vary, but mine went like this - tender scalp when you touch it, wash or comb your hair, pains up back of head from nape of neck, over the top of head and down front of face, toothache, jaw claudication, difficulty in chewing, swallowing. I didn't have temple pain, or pains in my eyes, but some do. All I can say really, it like a pain you've never had before, and of course, if you get any visual disturbances then seek medical advice ASAP.

    Having said that about head problems, as you are on Pred it is unlikely, although not impossible, that you will get all or any of them. My case, like many others didn't have a good outcome, because we weren't diagnosed and therefore not on Pred!

  • Thank you...x

  • Thank you for asking these questions. Hope you feel well soon x

  • Thank you for asking these questions and thank you to all for the comprehensive answers you have given. This has really helped me as I'm a bit blue as I had just started to reduce by a half a mg after 6 months at 6mg using the recommended very slow reduction. I was only on week 3 but all the symptoms came back with a vengeance and last week I had to go back to 6mg a day and give up thought of reduction for a while.

    Did other people find that the bitter cold last week in the uk made their symptoms worse. This may also be my arthritis but since the sun came out yesterday I have felt so much better. The pain has reduced a lot.

    I would be lost without this site it has made such a difference being able to 'meet' all of you fellow travellers ;-)

    Best wishes Anne

  • Cold doesn't bother me too much - but damp does. The Germanic nations have realised for a very long time that weather has a major effect on many illnesses, especially cardiovascular (BP, angina and so on), pulmonary (lungs) and rheumatism/arthritis. They even provide a "bio weather forecast"!

  • Oh yes, last weeks cold weather lead to many a discussion about cold/damp affecting my joints. The warmer the better for me it seems. Hot house flower as they say :)

  • Thank you both I appreciate your replies. Today is wonderful and warm and I am pain free. 😀💃

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