Hi, i've been on 15mg for PMR for 5 weeks now and symptoms are quite mild at the moment. My GP wants me to reduce to 12mg from Saturday for 3 weeks. I'm hopeful all will be OK but would like an idea of what to do if pain returns to some greater degree?
Is it best to stay on the 12mg for some days (how many?) and see if things return to 'normal' levels or should I up it to say 13mg or 14mg for another period of time (how long?)?
Thanks Dave
Is he willing to let you reduce in smaller steps? If you reduce at 1mg at a time at this stage you are less likely to suffer steroid withdrawal pain and a couple of weeks at each dose is enough.
Steroid withdrawal pain starts immediately after switching to the new dose and then improves over the following week or two, returning PMR usually takes a few days at least to start and then increases steadily. But they can be very similar.
Many people have found going much slower makes the reductions less uncomfortable and are just as quick in the long run since they don't have to return to a higher dose when a reduction goes pear-shaped.
The very slow reduction plan I use is posted on a thread on this site as "dead slow and nearly stop reduction" - it has worked for a lot of people to get to lower doses than every before.
Wow! I didn't realise there could be two different types of pain - steroid withdrawal pain, and returning PMR pain. Is it possible, or obvious, to be able to tell the difference?
I am contemplating coming down from 20mg to 15mg after 2 weeks on 20mg. I consider myself pain free, but also notice that the PMR seems to be lurking in my system in the mornings before I take the preds again. It is a level of pain I probably would not have noticed before being diagnosed, but the pain from PMR is, to me, very distinctive.
Am I being too optimistic to consider a 5mg drop at this time?
Any thoughts?
I dropped from 20 mg to 15 mg after a few days as 20 mg made me feel hyped up. Dr approved this. Pains stayed away. I then stayed at 15 mg for a few months before trying any sort of reduction When blood tests indicated inflammation was less I started the very slow reduction plan on here. My doctor was happy for me to do this when I explained where I had got the method from! ( here!). After approx 2.5 years on pred I am now down to 1.5 mg per day...still reducing. Have had to stay at some doses for a while......... According to how I felt and how many stresses were coming up! I do think reducing only works well when you have calm quiet times and can look after yourself well, and rest when needed. This site has helped me so much.....post queries and questions, someone alwYs replies quickly
Yes - 5mg at a time is far too much. You may manage 2.5mg OK at this level.
Steroid withdrawal pain tends to appear immediately you drop the dose and then improves over the next week or so. PMR returning will usually take a few days to start and then increase as time goes on. They are very similar though.
The PMR is "lurking in the system" as you put it because the antiinflammatory effect of pred lasts for between 12 and 36 hours - and it depends on the person how long it is. The substances that cause the inflammation are shed in the body at about 4.30am - if the effect of the pred has worn off by say 3am, you will feel stiff in the morning until the next dose starts to act which takes a couple of hours. If you are a 36 hour person you will feel fine in the morning whatever time you take the pred.
PMR is an ongoing problem - you clear out the inflammation one morning and the next morning it returns, needing to be cleared out again. You must always remember that and into the bargain - everyone is a bit different. So some can take one dose per day and be fine, others aren't, some people need 12mg to manage the pain - and others can get away with 5mg.
Hello PMRpro.. Its trish 29 here once again .. In the last few weeks there has been a mix up with my Methotrexate 12.05mg injections as The Hospital Nurses managed to lose my Prescription for more injections ordered by my Rheumatologist and I had to come off the injections for 3 weeks. I went back on them last Sunday evening and I have had The week from Hell ..A nasty flare up that lasted a few days ..Nausea feeling most of the time and excruciating pain over most of my body especially right neck .shoulder and upper arm, and more exhaustion than usual. This is where my PMR mainly started 11 years ago..before I had this hiccup I was down from 17 mg to 13.05 but my body was not liking it ,I decided to put myself back up to 15.05 mg this week just so as i can get up and get on with the day but I can hear my medical team tutting at me..I have given myself rest when I can . My main question is that I am due another injection tomorrow evening and wondered if I should stay in the region of 15 to 15.05 mg pred to see how I am and whether I get the symptoms of another flare ..I feel so guilty that I am not coping and so much is expected of me . I had some blood tests done this week so I will see if I can get any results from that .This condition does have a mind of its own and just likes lots and lots of rest .. Best wishes. trish29
Before I say anything else - you have a major problem here!!!
"I feel so guilty that I am not coping and so much is expected of me " - you have no reason to feel guilty about ANYTHING - and frankly - things should not be "expected" of you. If you are ill, you are ill. Full stop. Neither friends or other members of your family should complain you aren't doing what they want or expect you to do. I do appreciate that there are situations where people have to manage things when ill that are unreasonable in their state of health and there is little way round it. But even so, if that applies to you there is no reason for YOU to feel guilty.
And in this situation your medical team cannot with any justification tut tut at your action in raising your pred : THEY failed YOU by not ensuring you had the required medication. Without the mtx you are bound to need more pred to control the pain and stiffness - if it really was working to help you reduce the pred. Once a flare starts it needs to be controlled - if the flare has coincided with or was due to the lack of mtx I would think you might need to start pretty much at the beginning again. I also know a few others who have been on mtx and been able to reduce the pred - and then suffered a big flare while still taking it. It isn't a miracle cure - whatever anyone may want us to believe. I would think you will need the current dose of pred that is working until the mtx kicks in again - which you'd hope will be quickly.
And let me emphasise again - IT IS NOT YOUR FAULT and don't let anyone try to tell you it is.
Thank you PMRpro ..I have taken in all you have said to me and thank you for your advice , with 11 years of bouncing up and down on the steroids i wish it could just improve for me , I know that in theory it should be easy to reduce but we are all different and my body just seems to go into shock even with a half mg drop so I feel for others who are trying to drop 5mg .That to me seems too big a drop too soon. I will continue on 15 mg pred for this week and monitor myself . Thank you for caring trish29
"I know that in theory it should be easy to reduce" - no, nothing is further from the truth. You have been on pred for a very long time, your body is dependent on it and any removal is noted and acted on. It is going to be hard work getting your pred dose down - and part of it is probably due to "mishandling" in the past.
Have you tried my "dead slow and nearly stop" approach? I know it may be difficult now to make sure you have enough pred to do it so slowly but if you haven't it might be worth adding in. Spreading 1/2mg over a few weeks might work.
HelloPMRpro ..yes I have tried this way and it worked well until I got down to 14 mgs but I had lots of hiccups including a nasty fall in my kitchen in November ,I don't seem to have picked up from there , so if I can get myself on a straight road after being back on the injections a while then I will try the slowly ,slowly approach again ..My Rheumatologist is aware of this approach ..He was actually pleased with me on my last appointment as I was down on the pred by 3mg and I hadn't put on any weight . It all turned sour re the MTX injections . Spring is around the corner so I just want to be able to feel better and enjoy the better weather when it comes Tomorrow is my second to Youngest Granddaughters 8th Birthday and I want to be able to see her enjoy her day.. Best wishes trish29
" It all turned sour re the MTX injections" - you mean them getting "lost"?
Yes, when I asked the question is suspected I remembered you had. In terms of the weight problems - have you ever tried cutting carbohydrates drastically? I have lost 38lbs since I bit the bullet and cut carbs over 2 years ago. It is slow - without pred I imagine it would be faster - and I have also been able to reduce the pred dose a lot. I always notice I feel less well when I have been eating carbs. Living where I do I do have a craving for a pizza occasionally!
Hello again PMRpro ..yes I am very careful with my diet and eat very little carbohydrates.. I mainly eat sweet potato ,most vegetables and eat chicken and fish ..red meat is a no go but I do like a Roast Lamb Lunch occasionally ..I have a very sensitive stomach and can't eat tomato ,garlic and tumeric..I have had this condition so long now I have been able to experiment with my meals but I usually stay with fish. My partner does the cooking and usually cooks my meal separate from his .. When I was on Methotrexate Orally a long time ago I managed to get about 4 stone off but I was also ill and had to come off it because it effected my liver..so going back onto the injections is yet another experiment encouraged by me but I'm apprehensive at the same time. I must try not to stay high on the steroid for long as when I have to go over 15 mg of pred that is when I feel so bloated ..Not being so mobile doesn't help but I'm always getting up and moving around the house even though I am in so much pain ..I would love to be able to walk again ..and I go to my Osteopath who understands PMR and I have gentle massage and ultrasound which my consultant is aware of. I'm not the type of person to just sit in a chair and give up , I've always loved going out and being with other people ..I am just fed up with this roller- coaster ride that never goes anywhere and I know that I am not the only person on this road that it is happening to . all best wishes. trish29
Hi Charlie
Like you I've been on 20mg of pred for a little over a week & my doctor told me to drop to 15mg a day. I asked her if I could go via 17.5mg for a couple of weeks to ease me back to work & she agreed. The first reduced dose I took left me with shoulder & thigh stiffness by the evening (I was worried sick that the pmr pain was back) Thanks to the lovely people on here I have found that it's a bit of withdrawal pain so I shall persevere for a week or two at this level & then just drop 1mg at a time hereafter to make the transition smoother.........isn't it hard to get your head round it all?!
Good luck!
Thank you for your quick reply, and the helpful information you give. In the circumstances, I intend to follow your advice, and drop to 17.5mg for a couple of weeks and see how that goes.
I cannot speak highly enough about the value of this forum.
Charlie, I was able to reduce successfully from 40mg (GCA and PMR) down to 15mg in four weeks, via 30 and 20mg, and was informed by my rheumy that the 15mg dose usually controls the inflammation. I was lucky - the 'fun' didn't begin until I got down to 5mgs! However, we can all be quite different both in how we present with our symptoms and how we respond to the steroids. But whatever dose we start at, it seems perfectly understandable that our bodies will have adapted and got used to that starting dose and, in many cases, will complain when we try to reduce from it. Hence, the need for smaller drops - less confusing for the body! Hope that makes sense!
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