30 mg Prednisolone for relapse but pain persists, can this be?

Bones, joints and muscles
1

I was diagnosed with PMR July 2012, with ESR 62, put on 15 mg Pred, 11 days passed before I was free of pain. 1 month later Doc reduced me to 10 mg. ESR then 10. Then later to 7.5mg and finally to 2mg by Oct 2013. Relapse started Dec 2013. Doc started to increase Pred. to 6mg.but pain persisted so Doc increased me in stages to 15mg, (pain persisted) so Doc said go to 20mg or even 30mg if pain still persists. Pain is persisting. Meanwhile, a full blood test was done and all came back normal, ESR now 12. Just to complicate matters, there was a moment 12 days ago when for 4 days I mixed up my tabs and was taking only 4 x 1mg, when I should have been taking 4 x 5mg. I am now on 3rd.day at 30mg. but pain still persists.Does anyone have any comments please?

The only other query on my mind is the fact that I was given a Pneumonia jab 3 weeks ago, could this play a part.?

2

I think your original reductions were much too fast, particularly at the lower doses, it seems. Not really surprised you had a relapse of pain but, given that your original reaction to steroids was not immediate, then perhaps your Doctor should also look at other possible diagnoses? PMR symptoms can mimic other autoimmune illnesses and it can also morph into other too.

The pneumonia jab - I can't really say, I had one years ago while on steroids but I had no problems. I do think you should see your GP and ask for more thorough testing to be done.

3

Hi Mrs Mac, I am not sure I can answer, but have come to support you. I was diagnosed with PMR and even though my blood test came back normal the doc was convinced. This was only 4 days ago and I was started on 4 x 5mg Pred for 3 days and then a gradual reduction. I overdid it on day 2 at work so stayed on 4 x 5mg for an extra day. I am more flexible in my leg muscles but not as much as in the first day. I have found extra relief taking Magnesium Malate too. I also have a magnesium oil spray which you spray directly on the affected area. I wondered if I was overdosing on Magnesium so cut it back and noticed a difference so tomorrow I am going back to full dose Magnesium Malate and also the spray, alongside the Pred. I don't know anything about Pneumonia injections. I do think you should research the Magnesium Malate and the spray. I think it will help you.

4

MrsMAC - Nefret is right - those original reductions were too fast.

You say you were not pain-free for 11 days - but did you have a dramatic response (about 70%) in 2 to 3 days? If so - probably PMR, but many of us never achieve totally pain-free. A recommended reduction would be 15mg for 6 weeks, 12.5mg for 6 weeks and then 10mg for a year (this is from the Bristol rheumatology department and they find it results in fewer flares). It is not uncommon for reductions after flares to be more difficult but at 30mg you should be better (you may not manage pain-free though). However - you need to be investigated for other causes. It is not unknown for PMR to turn out to be late onset rheumatoid arthritis - and it can be seronegative so apparently no different from PMR.

ElaineA - as you will see from the previous paragraph - you should not be reducing at all yet. You need weeks, not days, to get the inflammation under control properly and only then can you reduce the dose VERY SLOWLY to find the lowest dose at which the symptoms are controlled. PMR is not the same as other inflammatory diseases where pred is used - you are controlling the symptoms, the pred is not curing anything. The underlying disease process is still active and causing inflammation. If you are still working there is even more reason to stay at the starting dose - any over-exertion will result in a return of the symptoms.

If your GPs demand back-up, the final link on this post on this forum gives you the paper by the Bristol group - you can download it and/or print it. It is aimed at GPs to enable them to cope better with caring for PMR patients:

https://patient.info/forums/discuss/pmr-gca-and-other-website-addresses-35316

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hi mrs mac, i have recently been diagnosed with pmr and was started on 15mg pred which worked just fine for 6 weeks and then i think my body got used to the 15mg and i relapsed badly to the point i felt worse than when i was initially diagnosed, spoke to my doctor who said he was really suprised as his intention was to reduce my amount of pred, after a good discussion that i new my body and how i felt and that bloods can show un realistic results he upped my preds to 30mg. this has had a result thank goodness. if you feel that you are not getting the relief you should be ask your doctor to increase pred slowly until you reach the point that you can deal with your body. all that i have read on pmr shows that it can take a minimum of 2 years to get to the point where meds start to diminish pmr . doctors are wonderful people, but i think sometimes we forget that they are people and dont always have all the answers all of the time. i hope things improve for you and soon, the pain is absolutely awful. good luck

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Using a dose of much more than 20mg muddies the waters and can cause long term problems: other things besides PMR will respond some to higher doses and starting at a higher dose is associated with problems reducing the dose later. In PMR 20mg of pred should achieve a good result within a few weeks at most. If it doesn't, either it isn't simple PMR or you are one of the group of people who are steroid resistant.

People who initially respond well to 15mg and then end up with a return of the symptoms also often have DONE TOO MUCH!! Pred doesn't cure it and you have to do your part too. Just because you feel well does NOT mean you are back to normal. If you go and try to catch up with all the things you couldn't whilst ill the PMR will turn round and bite back. The muscles are unable to respond properly to exercise because of the autoimmune disorder that almost certainly underlies PMR (PMR is the symptoms, not the disease) and if you do too much you get sore muscles.

I don't know what you have read lyndajoy, but there are no "meds that diminish PMR". Ever. PMR can and does go into remission - when the underlying autoimmune disorder goes into remission. If you are lucky it will be in a couple of years but there is no guarantee of that - many patients required pred for much longer to control their symptoms. Pred has no effect at all on the autoimmune part of the illness, it merely reduces the inflammation that causes swelling and pain and as long as the autoimmune disorder is active you need pred. One day they may find out what is the cause - then they can look for medications that will cure PMR. But that is a long way in the future.

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the only points that i am trying to make is that we know our own bodies and how they are responding to the meds given when given the diagnosis by the experts i.e. doctor and that doctors are only human beings doing the best that they can and that we as the patients have to give the doctors the best information that we can about how we feel so that <patient>doctors>meds> work well together

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I understand that - however what I have told you here is what expert doctors say about the situation - and what other doctors should know. Many of them don't know. I say nothing on this forum that hasn't been backed up by medical sources. I tell you so you are aware of such facts.

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Thank you to all that have replied, you have given me a few things to think about, thank you again Mrs.Mac

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Good morning,

I was diagnosed with PMR late last year, and the doctor started me on 15mg of prednisolone which really made a difference. I started trying to drop the dosage, but it really did not work as I was in quite a bit of pain. I decided to listen to my body, and went back up to 15mg which is what I am on now, and in maybe a month or so, I will drop by half a mg. I had tried dropping before, but never got it right. I think I was trying to run before I could walk!

I do still have pains in my arms and shoulders, especially in the morning, but it is worse when I have maybe done too much ironing, so I am just going to iron a few pieces at a time. I drove too much last week, and suffered for it for a couple of days, so I will remember to limit my driving to every other day if possible.

I feel ok about it now, as I can control it, and my doctor understands, and works with me which is great.

Kind regards,

Grace

11

Ironing? What's that? I can't remember the last time I ironed anything (thank heavens) but it must be all of 10 years ago.

Ironing was one of the first things which went followed closely by sweeping and using the vacuum cleaner. Like everyone else with this condition I had to learn to pace myself - which in fact wasn't easy - and I decided to concentrate on the things which I like doing rather than those I thought I had to do.

Pacing and the acceptance of the need to do so are the pitfalls and traps we all seem to fall into. I think we were all very busy people and the need to slow down and rest is a hard lesson to learn. PMR is very sneaky. If you overdo it one day you can be sure it will come back and bite you when you least expect it.

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Dear all at PMR forum, may I firstly say how grateful I have been over this past few months to have all the various postings to read, (please excuse my not mentioning everyone by name), and for the advice that has been included in your postings, it has helped me greatly.

May I now offer my up-to-date history and ask once more if anyone has any thoughts regarding the decisions I am about to take.

Firstly it would seem certain, and my own Doctor confirms, that it is PMR. When first diagnosed 20 months ago and put on Pred. at 15mg. I felt better withing about 4 days and all pain went within 10 days, I remained 'pain free' over the next 12 months and reduced down to 2mg. I now, with hindsight and your various posting understand that that reduction was much too quick, hence a relapse, with pain returning to shoulders, arms, hands, buttocks and legs.

I returned to my GP and with her advice (ESR 20) slowly increased in stages back up to 15 and then 20mg. After 3 weeks ESR showed 10, but with no improvement regarding pain level, GP advised to go to 30mg for 4 days then back to 20mg. still no change. Then GP advised to go to 30mg for 2 weeks.

That 2 weeks ended today, and although I feel much better in my self, and am back doing essentials and taking a few short walks, the pain still has not gone from me.

My GP wishes for me to start reducing now anyway, and suggested down to 25mg for 2 weeks, then down to 20mg. but has agreed for me to reduce by just 2½, down to 27½ for two weeks, then down to 25mg for two weeks, and then go back for another blood test.

Does this seem a good plan? I shall be most grateful for any comments....... I am 73 years of age, and normally a very fit person, I am a very keen gardener, I enjoy painting and decorating,and I have a knitting machine standing idle. But I am controlling myself (or being controlled)at present!

13

I'm sorry to hear you have the "joy" of a second dose of PMR and especially one that is being somewhat recalcitrant!

I suppose it is difficult to tell whether this is a flare or a relapse if you had done so well and got to 2mg without problems the first time round. It has been noticed that sometimes a second bout doesn't follow the rules, with the ESR and the pain not really matching and being totally different to the first lot.

However - in view of a dose of 30mg not having the typical dramatic effect in PMR this time, has your GP considered other diagnoses? For example, late onset rheumatoid arthritis? It is not unusual for it to be diagnosed as PMR initially. Whether that is because the PMR changes into LORA or was the wrong diagnosis in the first place isn't known, but the symptoms can be very similar but LORA doesn't always react to pred anything like as well as PMR. Ordinary simple PMR should have responded far better than that to 30mg pred.

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Hello MrsMAC

I'm so sorry to hear of your predicament. It does appear more common for those who have textbook journeys with PMR and fast recoveries to succumb more easily to flares.

It's a pity that your GP recommended slowly increasing back up through the doses to 15mg, far better to have hit it hard by returning straight to 15mg in the first place.

It's good to hear that you are finally feeling better so hopefully the steroids are now getting some control over the inflammation.

Your ESR isn't particularly high - it can tend to increase as we get older anyway. Have you also had the CRP blood test - this is generally considered to be a more reliable marker of inflammation than the ESR?

Very few of us seem to become "pain-free" down through the doses, and, as Eileen has said, someone can experience two bouts with totally different journeys.

I do hope the diagnosis is correct - good luck this time.

MrsO

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I would like to delete pain free from all write ups about pmr in my experience things will improve but not to the point of pain free until that glorious day when it takes wings and flys away on the zero cloud carolk

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I would like to delete pain free from all write ups about pmr in my experience things will improve but not to the point of pain free until that glorious day when it takes wings and flys away on the zero cloud carolk

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An update from MrsMac

With GP agreement I am now reducing by 2½mg every 2 weeks from 30 mg. When I reach 20mg GP wants another Blood test. Symptoms of relapse has greatly improved, just left with slight aches in back of legs and sometimes hands and arms. Tiredness remains.

But my right forearm which has given me pain from beginning of relapse 2 months ago continues with the same severity, it's not there on waking but begins shortly afterwards and continues soon after any sort of usage and continues until about 2 o'clock, and from just this week will generate up into the shoulder of that right arm, I am unable to use hand for writing or other simple uses without aggravating the pain in that forearm.

I went back to see GP who ruled out tennis elbow and tendinitis but did not think that it is connected to PMR.

She proscribed Ibuleve and suggested heatpad which I have used, but pain persists as I said until about 2 o'clock each day. GP said she thought it to be muscle pain.

I have now arranged to see a Physio. on Tuesday next, Hubby does typing!

I would welcome any comment, knowing how helpful you all have been on this site.

++

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Hi MrsMAC (and helpful hubby!)

It does sound as though the arm pain could be related to the inflammation of PMR in view of the fact that it disappears around 2 o'clock each day - this could be because the daily steroid dose has kicked in by that time. Equally, it could be muscle weakness due to the steroids.

After long-term pain from one of my arms, I sought help from a physio who found problems in my shoulder blades. Several appointments with gentle massage, heat treatment and ultrasound sorted it out. Very important to find a physio who understands PMR - the usual manipulation techniques should be avoided in order not to aggravate the inflammation. Good luck!

MrsO

19

I had forearm pain with PMR at the early stages - it ran from the outside of my elbow to the inside of my wrist. I put it down to RSI initially. I used a wrist support (the sort that straps around your forearm and around your palm) and that helped a lot - I couldn't hand over the typing to my husband as I do it for a living as a freelance translator!

If it is the same - the GP is incorrect in simply saying it isn't tendonitis though I wonder if the PMR causes a form of focal dystonia - that resembles writer's cramp. Lots of us found we dropped stuff and our hands didn't work properly. Mine resolved eventually with the pred - as did the other bits of bursitis all over, in hips, hands and feet.

Eileen

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Again, many many thanks for input MrsO and EileenH, your advice I know will be helpful to me over the oncoming days and when visiting the Physio.

Thanks again MrsMac