PMR Symptoms, out of the ordinary?

Bones, joints and muscles
1

Hello, am new and hoping to get some feedback as I have felt so lost before finding this ….

I was elated when I came across this site to finally find others that faced some of the same challenges I have since being diagnosed with PMR in August 2011. It came on suddenly. In fact the first diagnosis was an encapsulated shoulder, the right shoulder aching terribly and losing range of motion, requiring physical therapy. However within days my left shoulder also ached, but it was part of the more moving aching discomfort that also went to my neck, upper back, hips, tops of my thighs, buttocks, knees, shins, top of my feet, ankles, forearms, wrists, and top of my hands. It was uncomfortable to drive keeping my knees or ankles in the same position for even 20 minutes. I also found it uncomfortable to cross my legs at my shins or ankles on top of one another as the pressure was unbearable.

I have had 2 Rheumatologists treat me. The first diagnosed me and began me on 15 mg of prednisone which made me a new woman. This went well until this doctor wanted me to begin going down on the prednisone and had me try 10 mg, which brought about a relapse. His answer was pain management for further help. I switched Rheumatologists and the new one had a slower approach for going down on the prednisone. I have worked out regularly for years, when the shoulder began the physical therapists had told me I wouldn’t lift weights and workout the same again. This new doctor told me to go ahead and workout as much as I felt I could. I did well until I tried to go below 2.5 mg. This is the third time I’ve tried, and by the third day I go into relapse. My doctor gives me a shot but it takes better than a week for me to get back to where I had been.

The relapses seem harder now, the discomfort seems turned up higher. The fatigue comes over me like a veil and the appetite disappears. I live alone with my big pup so this isn’t always easy. My concern is that I have a lot of other body parts that are involved, I’ve seen some posts on this site that touch on them but my discomfort areas seem much more widespread (areas listed above). The doctor had brought up fibromyalgia but she also stated that those symptoms are not eased by prednisone, and all my symptoms go away when the higher amounts of prednisone are in my system. Does anyone else experience the same? Also, I do not experience any real stiffness in the morning, my discomfort actually gets worse the more I am upright. I’ve had my body scanned, its not any kind of back or hip issue, all that moves fine, I can exercise, twist and turn with no pain. It’s a deep, moving ache…mostly constant in the shoulder, upper back. Especially now as I’m still coming around from the last attempt at 2 mg of prednisone.

Thank you for reading this and allowing me to be a part of your inner most thoughts. Have a joyful day.

2

hi and welcome my first comment is its amazing you have got to such a low dose in such a short time its well documented that most people take at least 2years to achieve a remission , however ther are many who have to remain on a low maintenance for a much longer period .your dose of 2 mg is very low and once on the lower dose its takes longer to reduce because the bodies adrenals are taking over and they can be slow at getiing going ,my suggestion is find the dose that is comfortable that may be higher than 2mg and stay on it for awhile give your body a chance to play catch up its not a race more a slow and steady advance !!! all drs will try and get you off steroids but this condition needs time .once you feel you are confident then try very slow withdrawel there are various methods well doccumented on the other site good luck come back and chat and we will help, especially eileen who will post i expect carolk

3

I can confirm that Prednisolone has no effect on Fibromyalgia but certainly does on PMR. I have both, and GCA and Asthma too, which occasionally require steroid treatment.

I agree with Carol, you are perhaps not giving your body (adrenals) time to stabilise on the low doses and 2.5mg is a very low dose. Once you get down to 7mg is approximately where your own system should begin to function again, but everyone is different. Many of us find that 5mg is a sticking point and in some cases lengthy terms of 5mg are prescribed (up to 6 months).

Why the hurry to get down from what is essentially a very low dose which should be free from side-effects? It isn't even the amount you would make yourself so it does seem to me that this amount is simply backing up your own adrenal glands which haven't yet quite caught up with you.

Under the same circumstances I would be inclined to put the dose up enough to make me comfortable and stay there until I am as sure as I can be that I am able to reduce the dose - and even then I would take any reduction very, very slowly. If you are not comfortable on 2mg right now, then take enough to ensure comfort otherwise there is very little point in taking them at all! Having said that, please, please don't just stop taking even the small amount you are on as sudden withdrawal can be dangerous.

I hope this helps you - PMR itself cannot be rushed, it will take as long as it takes.

Catie

4

Thank you ladies, Carol and Catie, for your responses. I am only going on my Rheumatologists timetable for reducing the prednisone. She told me on my October visit that she wants me off prednisone by December or at my January appointment she would have to give me another drug that had worse side effects to assist my body in getting off the prednisone. It was slow going to get down to the 2.5 mg. Each time I reduced the amount I had to take the new dose once a week, then twice, then three times before I could be at that dose. It went well until the drop from 2.5 to 2.0 mg. My body just doesn't seem to want to do it. I've read in some of these posts here that "yo yo'ing" makes the eventual success farther off in the distance. I just know that this last relapse was harder than the last. I also know that when the PMR is active, I am in such pain that all I want to do is lay on top of my fluffly comforter and not move much. I understand during those times and prior to having the prednisone why people in constant daily pain decide to end it. I can't imagine living without the prednisone and its relief. I am planning to do some more research and put up some more resistance to my doctor's plan as I just don't think this is something I can do again soon...try the reduction to 2.0 as she wishes.

5

Wow! Becky - To get to 2mgs after just 14 months of treatment is the stuff of dreams as far as most of us sufferers with PMR are concerned.

As for your Dr saying she wants you off Pred by December, I'm in disbelief, unless, of course, she has other concerns regarding your health. It's true that the medics have to get us to the lowest dose of steroid that controls our symptoms, but if those symptoms aren't under control and inflammation is lurking around in our bodies, that can predispose us to all sorts of nasties, far worse than PMR.

There is no cure for PMR, the steroids just control the inflammation which causes the symptoms, and PMR will go when it wants to sadly not when we want it to, and that can take anything from two years upwards. Yes, there are a very few lucky people who manage to get off the Pred in 18 months but that is a very rare occurrence if these forums are anything to go by.

With the pain you are experiencing, it sounds as though you need to increase the dose rather than even consider any further reduction.

With regard to the side effects mentioned by your Dr, once we are on doses below 7.5mg of Pred, there are very few side effects, if any, to our bodies - around the 7.5 mark is the usual dose of cortisol (natural steroids) that our bodies make when well.

Have you looked up the British Society of Rheumatologists Guidelines for the treatment of PMR - perhaps you could download them and take them to your Dr? Best of luck Becky and do come back and let us know how you are doing.

MrsO

6

Today I went back to the Rheumatolgist on an emergency type visit as the relapse was not turning around - the shot and returning to 2.5mg didn't work this second time. My doc after seeing how miserable I was, (no appetite, great fatigue, great discomfort in the shoulders, hips, upper arms, buttocks, ankles, thighs, wrists, hands) got her boss Doc (she is actually an Resident) who came in, poked me and told me he diagnosis me with fibromyalgia not PMR and to get off the prednisone now. Says the places he poked me were the "points" of fibromyalgia...course if he had touched many other spots they would have hurt also. My doc pretty much tells me that she can't keep me on prednisone for much longer as a patient. They both insist that PMR is only in the hips and shoulders and my range of motion is too good. My doc agrees to give do a plan of 15 mg of Pred. for one week, 10 mg of Pred. for 1 week, then stay on 5 while I add Cymbalta to get aid in getting off the Pred. She tells me to go home and take the 12.5 mg prednisone as I had already taken the 2.5 first thing. She took blood tests and is planning on seeing me in the beginning of December.

So here's the thing.....its been almost 8 hours since I've taken the increased prednisone, and once again I already have great relief in the level of discomfort. The original diagnosing doc had knowledge or so he said that PMR could have a normal SED rate. Mine has been 1 or 0. Nothing but prednisone gives any relief however. Have tried the naprosens, tramadols etc. and I hate pain meds.

Feeling lousy and having to doctor shop yet again?

7

Oh dear Becky, how very confusing for you. The symptoms of PMR and Fibromyalgia can appear so similar and as there isn't a definitive diagnostic blood test for either, then it can be difficult for the medics to get it right.

One very confusing point is that you had a miraculous resolution in symptoms to the 15mg starting dose of steroids following your initial diagnosis of PMR - that usually confirms that the Dr has got the diagnosis right. It was very unfortunate that following such a good start, you were then told to reduce by such a large amount from 15 to 10mgs. I'm not so sure that steroids would have the same effect on Fibromyalgia. However, your latest "resident Dr" has at least applied the tender point test before coming up with the Fibromyalgia diagnosis.

I'm not sure how old you are but PMR mainly affects people over 50 years whereas Fibromyalgia affects people of any age. I wonder if the following might help:

Polymyalgia versus Fibromyalgia:

Polymyalgia:

Affects people over 50 years

An inflammatory condition

Symptoms of severe pain, stiffness and tiredness

Can be accompanied by inflammation of the arteries

Treatable with steroids

Responds well to treatment

Many side effects of steroid treatment

Good prognosis - generally last 2-3 years

Fibromyalgia:

Affects people of any age

An abnormal pain processing condition

Symptoms of widespread chronic pain, persistent fatigue and non-refreshing sleep

Many associated symptoms including cognitive dysfunction, IBS, and anxiety

Treatment response is variable

Variable prognosis - symptoms can improve but can last many years

I do hope this helps and I wish you well.

8

Thank you MrsO for your response and information. I have read several articles about the differences between the two and from them I am under the impression that PMR is about inflammation and fibromylgia is more about nerve pain. I realize some of the symptoms are very similar and its very hard to diagnose the two if you don't have the SED rate to rely on...with the exception, at least to my understanding, that if prednisone clears the discomfort it isn't fibromylgia. This morning I woke feeling incredibly better than yesterday. This is only day two of the 15mg. I am also concerned about the drop between the 15 and the 10....the doc says it'll be fine, but that is much faster than I went when I was going down before.

I am 56 yrs. old. This did come on suddenly. This came on in the shoulders and I did have limited range of motion in my shoulders that has since cleared thanks to some physical therapy. However a large improvement during that therapy came when the prednisone was introduced. I do have pain in areas other than my hips and shoulders - neck, deep in the buttocks, ankles, wrists and knees when kept in the same position - however these docs don't agree that PMR affects these areas.

It is very confusing, I am going to see my Primary doc to have her in on this as well. I didn't like the fact that the two Rheumatology docs were not willing to think out of the box so to speak. I don't know what is going on, I just know that prednisone makes the pain go away entirely. They have pretty much checked me already for all the arthritis' and cancers, so we're back to where the original diagnosis came along.

Thanks kindly for your reply...and all others for your interest and any input you can share as well. Unfortunately sometimes in the US we have to "shop" our way through docs before we find good ones.

Its a beautiful sunny day here in Florida, going to be 80 this weekend. I'm finally feeling like I can enjoy it.

Hope y'all are feeling the same.

Becky

9

glad to hear you have responded well to pred reduce slowly or you will yo yo up and down , carolk

10

Becky

If you are feeling so much better back at 15mg, if it was me I would stay there for a couple of weeks before reducing and then only going down by no more than 2.5mgs at the most, certainly not to 10mgs - that proved a real problem the first time around didn't it. This is the only way you are going to prove whether it's PMR or not and, if you re-read Nefret's post above, you will see that steroids made no difference to her Fibromyalgia pain whereas they did control her PMR. Hopefully, when you talk all this through with your Dr, she may come to a different conclusion to the rheumy.

11

Becky - your rheumatologists who are so desperate to get you off pred are talking rubbish.

In fibromyalgia the points are very specific and there are about 18 of them - in polymyalgia many of us have touch pain and some of the points coincide - it did for me but there were other places I hurt to touch that are not on the fibro list. It isn't 100% accurate to say that your response to pred being very fast is "diagnostic" of PMR, but it certainly distinguishes between PMR and fibro: fibro does NOT respond to pred.

Why are they so desperate to get you off pred altogether? If you are happy on 5mg with virtually no pain and stiffness why on earth force you to go lower? The reduction with the pred is to find the lowest dose at which the symptoms are controlled - NOT to get you off pred as you do with other ailments where the inflammation is limited timewise. The pred doesn't cure the illness, it manages the symptoms to allow you to have a decent quality of life until the underlying autoimmune disease goes into remission. There are currently no other drugs that control it except corticosteroids in some form or other. There is no real evidence that these other drugs have any reasonable effect in PMR - they certainly don't get you off pred altogether unless the dx was wrong in the first place and it is actually late onset rheumatoid arthritis that you have, they are very similar in presentation. They also have side-effects as she has said - what on earth is she doing trying to take you off less than 5 mg/day to give you drugs with "worse side effects". She needs to do some reading and thinking.

PMR isn't rheumatoid arthritis and won't respond to the same treatment, except pred which is used a lot in RA too. And the concept "only use pred short term to control a flare" doesn't apply either. PMR doesn't affect range of motion or muscle strength except for the restrictions of the pain or stiffness - remove them with a bit of pred and you're fine to move.

In the literature it says quite clearly on the basis of many studies that about a quarter of patients with PMR are able to get off steroids in less than 2 years - but they are at a higher risk of having a relapse later. A further half of patients require treatment with pred for between 2 and 6 years, but mostly at a lower dose than 7.5 mg which is considered a relatively low dose and suitable for longer term use. The other quarter may take up to 10 or more years to go into remission and some remain on a very low dose for life. There is no reason at all to force you off pred by the New Year - millions of people all over the world take pred for far longer than that without serious damage.

Only about half of patients on long term pred develop osteoporosis anyway - monitoring for it and dealing with it if it happens is far more productive than leaving you in pain and immobile by removing the only thing that relieves PMR pain because lack of exercise is also a high risk factor for osteoporosis. As for other problems - close monitoring and treating the problem if it happens is essential for high blood pressure, diabetes or glaucoma.

What can't be cured must be endured yes - but there is no need to make it more difficult by refusing you the only therapy there is. Injections are a non-productive way of dealing with the overall problem. They were only necessary because they are forcing the reduction of the pred tablets.

And someone has mentioned it - don't reduce straight from 15 mg to 10 mg, at least go via 12.5 mg. It works in other ailments yes - it frequently DOESN'T in PMR. Fiftiesgirl who sometimes posts here couldn't drop from 20 to 15 as instructed by her doctor without a return of the pain in very short order, when she reduced 1 mg at a time as we suggested she reduced steadily to below 10 mg with few problems. She has recently had a hip replacement because of osteoarthritis and needed a higher pred dose for a while but is back down below 10 mg again. The medical literature - from rheumatologists who specialise in PMR - recommends never more than 10% of your current dose - 15 to 10 is 33%, more than 3 times as much.

SLOW and STEADY is the rule with PMR. 1 mg at a time and wait for a few weeks to see you are OK before the next drop works well and often gets the dose down faster than bigger drops where you miss the end point, the inflammation comes back and you have to go back to the beginning. Plus there is the risk that some doctor not fully au fait with PMR will decide it is something else and start messing about.

Eileen

12

Hello and thank you Eileen for responding. Everything you stated conincides with everything I've read everywhere as well.

It is now 2 days of 15 mgs. of Prednisone and hardly any discomfort remains today. By late afternoon of the second day I was feeling a new woman. Prednisone clearly fixes most all my discomfort - there's still some minor twinges in the shoulders, hips, knees, ankles and wrists, but compared to the screaming discomfort of just 3 days ago, its miraculous.

I think the reason the docs are having the biggest issue here is the lack of the SED rate being high. If that was staring them in the face there'd be no discussion. My SED rate has been 1 or 0 from the beginning. The original diagnosing Rheumatologist had no issue with that, stating there are known cases with a normal SED rate. These docs don't feel so comfy with that. They have talked about underlying issues - cancers and rheumatoid arthritis' - but I've been tested and retested to no avail for those.

In my thinking (aloud here) I've read through the fibromyalgia group posts - sleeping is an issue with fibro, I have fatigue, especially a veil of it that comes with the relapse, but I can sleep well and long. My only issue with sleep is having to turn often due to my shoulders as I'm a side sleeper. I can sleep all night through though. I also exercise three times a week, weight train - push ups, situps and all, when I'm on the prednisone, with no other body issues. I can't see that as possible if there was some fibromyalgia issue or am I incorrect?

I am not sure exactly the reasoning for my doctors insistance that I have to be off prednisone now but I do know that she looked me in the eye and said she couldn't be my doctor leaving me on it. Apparently treatment here isn't long term prednisone...they wanted to put me on MTX to help wean me off the prednisone but I read about that stuff, and no way!

I am enlisting the help of my Primary, unfortunately I can't see her until the 29th of the month. I too have great issues with the 5mg jump....and don't see myself following that order. The first time I went down I had to lower the dose 2.5 mg taking the lower dose once a week, then twice, then three times before I was on the next lowered dose. As it is I hate that I had to jump back to 15 when I had done all that work to get to 2.5. But at least I'm not in agony anymore.

Well, sorry for going on and on, but this is so frustrating.

On a more positive note....I feel like a new woman and its finally sunny and warmer over here. The colder (50s) weather making me tense up when I was out walking my pup didn't help matters any. Today we're expected to hit 79, tomorrow 80 then 82 the next day. Maybe a nice walk on the beach!

Hope y'all have a great weekend and thank you ever so much for your responses. It helps me so much to not feel so alone.

Becky

13

Becky - we've noted that rheumys your side of the pond are not as confident with treating PMR using pred as they are in the UK , and frankly, that isn't saying much. The comment "I can't be your doctor..." seems to ask for the response - "I can't be your patient", her concept is crazy! If you look under the pinned bit at the top of the polymyalgia thread here there is a link to the other UK forum (or google pmr gca uk northeast support group and you should find a link to the support group site where you will find a lot of medically approved info which will be helpful plus a link to the forum) where we have several members from the US who may be able to offer some suggestions as to how you can identify a rheumy who will be more helpful. If I put it in here this post will disappear until the moderators approve what is already here!

Where are you in the USA? Are you well insured? If your PCP is good and confident there is no real reason why you need a specialist as all you need is prescriptions and monitoring - and a PCP can manage that if they know what to do and watch out for. If you want references and links for your PCP (or rheumy) we can provide quite a lot if you like. Not wibble - proper, medically backed stuff.

And no Becky - you are not alone! The support group I've just mentioned has a DVD for family and friends explaining what PMR does to us, it's called "You are not alone". There were problems with supplying it for the US, I don't know if that has been solved but even doctors found it helpful. But the website has loads of info, including the diagnosis and treatment guidelines from the British Association of Rheumatologists which are not so different from the US ones.

Don't feel too down - it is possible you will be able to reduce faster overall than the last time as long as you do small drops at each time. You know that down to 10 shouldn't be a problem and then the next bit will almost certainly be OK, after about 6 you may need to be wary. But you were good at 5 before - you will be this time too :-) . Just remember to wrap up warmly when you go out with the dog and it is cool - scarf and stuff even when you wouldn't have before!

Don't apologise for "going on and on" - that's what a support group is for and we have all been there at some point. We can provide you with a check list of points to use to try to combat your doc's misinformation - and when you are confident and informed you can stand up and be your own advocate. You'll get there in the end - we all do sooner or later!

keep your pecker up ;-) - hope the sun keeps shining on you, it helps all of us feel better :-)

Eileen

14

Hi all,

Thank you for the very helpful posts. I was beginning to feel I was the only person with PMR as I have never met anyone else who has had this compalint! This is my story -

I live in Italy and also in the UK. I was diagnosed with high blood pressure in November last year and my Italian doctor asked me to wear a 24 hour monitor to assess my blood pressure. This was very uncomfortable and very tightly fitted on my left upper arm with gaffer tape so it couldn't be removed or loosened. It really hurt when every 15 minutes it inflated to take my BP. After it was removed I was left with bad bruising around my bicep. After this the pain didn't go away - it increased and then spread to my shoulder and then to my hips, thighs and my other arm. My Italian doctor was useless, only offering courses of painkillers which were increased in strength until I was having daily injections. His diagnosis was that I was just getting old (I was not quite 60 at this point!) so what did I expect! By this time I was unable to lift my arms above chest height, reach behind, get out of a chair, use stairs, turn over in bed - in fact I could do very little with out extreme pain. In the end I took a flight to the UK and was diagnosed with PMR by my British doctor. It was such a relief to know that something was actually wrong with me and I could get relief from the agony I was experiencing.

I started on 15mg Prednisone per day in March '12 and was delighted when after 5 days or so I felt nearly "normal" again! Since then I have returned from Italy to the UK for doctor and hospital visits and had the dose reduced down to 7.5mg per day. Then after the last blood test I was advised to increase back to 10 mg. I was pleased to do this as I had not been feeling at all well and was extremely fatigued by the afternoon each day.

All was going well. However last week I put my back out (a reoccurring trapped nerve) and since then painful PMR symptoms have started up again especially in my thighs!

Can anyone tell me if PMR is connected and brought on by a trauma such as the bad bruising on my arm or the trapped nerve in my back? Or were these just coincidental occurrences?

Cilla

15

Hi Cilla and welcome although I'm sure you'd prefer not to have had to find us!

Your question as to whether PMR can be brought on by a trauma rings bells with me as just a couple of months before all my pain started, I fell off a train (strange station platform, abnormally steep drop from the train and it was dark - platform has now been raised I hear!) As I have a slipped vertebrae at the base of my spine (spondylolisthesis), it can be quite easily injured and at first I believed that was the cause of my pain. Over the years since, I have remained convinced that my PMR resulted from that injury. I also know of a couple of people who have been diagnosed with PMR following surgery. Some people think a dose of flu may have been the trigger whilst others blame statins. So I don't think we'll ever get a clear cut answer, certainly at present there is no known cause or cure.

It sounds as though you're experiencing good care from your GP in the UK and I hope you feel better again now that you have increased back to 10mg. Once the blood tests have returned to normal and you start reducing again, you might find more success by reducing in very small amounts - some of us find it easier to reduce by just half a mg, but bearing in mind that only the non-coated Prednisolone can be cut, not the enteric coated.

It must be lovely sharing your time between Italy and the UK. I wonder if you live anywhere near Eileen in Italy - I'm sure she join in soon.

16

Hi Cilla and welcome!

I'm sorry about your experience with your Italian doctor - particularly surprising since there are two very big and active research groups here in Italy! Yup, that's right - I live in Italy too, at the northern end of the Dolomites in Pustertal/Val Pusteria! Where are you?

I was diagnosed before moving here and continued using my UK doctors - the GP not a consultant, the one I saw was useless! Then our trips to the UK got increasingly infrequent and I decided to use the system here. I had no trouble with the diagnosis side of things - but was switched from prednisolone (not available here) to methyl prednisolone, supposedly better. I didn't like it from the outset and after a very interesting summer now am on Lodotra, a prednisone used in rheumatoid athritis, which I find excellent thus far (all that's another story though).

I think it is unlikely that the PMR was brought on by either event you mention: I think it is much more likely that it was already present and they brought them to your attention. There is a much larger community on the other PMR/GCA forum (the link is to be found in the pinned post second from the top of the list of threads on the Polymyalgia rheumatica forum and several of us have realised that we have had low back problems and sciatica/hip problems for some considerable time, prior to diagnosis with PMR, and which tend to crop up if we have a flare or when our dose is reduced too far or too quickly - and it sounds as if that might be the case for you. The reduction to 7.5mg was too much - what sort of steps were you being encouraged to go down by? After 10mg you should stick to "never more than 10% of your current dose" for each reduction and - frankly - to be down to 7.5mg between March and now is pretty optimistic.

We have had a lot of discussion on the forums about the speed of reductions in the past and we encourage people to take it very slowly. Some rheumatologists are beginning to come round to our ideas, which are particularly associated with below 10mg and then again below 5mg - both of which tend to be sticking points. My own GP here in Italy, who is also a rheumatologist in fact, is also very for a slow reduction - although her version is more connected with remaining on a given dose for a decent period of time before the next reduction than making the steps very small to get the downward curve as smooth as possible. I've recently come across more info from experts about the reduction and timings which supports our concept but also introduces another aspect which I find very interesting. But slow and steady is the watchword however you do it.

I would be inclined to think that your hypertension is possibly associated with your PMR, as is the back problem and thigh pain but without knowing a bit more I wouldn't commit myself to any other suggestions. Can you not get a decent rheumatologist here? Or are you too far into deepest Italy? It has to be said, the medical services here in Alto Adige are very good still - Rome hasn't interfered with it yet despite trying rather hard. As an autonomous region though we can be very stubborn!

Looking forward to hearing from you again - don't run away now you've found us and do come over to the other forum where we have a laugh and mess about a bit as well as being serious a lot of the time, which makes it more like a real face-to-face support group.

Eileen

17

Thank you MrsO and Eileen for your prompt replies and very helpful advice.

I live in Italy most of the time - in Abruzzo which is on the Adriatic coast straight across Italy from Rome. It is very rural here and very much 'old traditional' Italy. My local doctor has only just got a computer to use in his 'surgery' so if you need repeat prescriptions you have to take the box in so he knows what he has given you in the past! He has never come across PMR before and is very sceptical when I try and discuss the condition with him. I also have a problem with the language here as the locals speak dialect and I only have a limited knowledge of Italian! So it's not easy!!!

So far I am still pretty immobile although I have increased the dosage to 12.5gm for the last two days. I do hope the pains will cease soon as we run a rental business and we are expecting guests over the Festive period and I have SO much work to do preparing the Villa for them. Things always happen at the wrong time don't they!

Thank you again for your help - it is so comforting to hear others have the same problem and how they manage it.

Cilla

18

Cilla

My remedy when my spine rebels is to don a support girdle - the last time was about two weeks ago and I had relief from my pain within a couple of days. Perhaps worth a try? If neither that nor the increase to 12.5 helps, then you may need to consider going back to the 15mg starting dose for a few weeks. You may then find you can reduce fairly quickly back down to the previous dose at which you felt comfortable. If that was at 10mg, then stay there for a month or more and try just a 0.5 reduction from there, to test the water so to speak, as it seems that somewhere between 10 and 7.5 was the stumbling block for you. Do let us know how you get on.

19

Hello

I am in my early days of treatment started at 20mg felt amazing and after five weeks dropped to 15mg and over the past four weeks have struggle with the reduction to feeling 80/90% as good. Saw rheumy today and his approach is interesting and for me feels right he has put me up to 20mg again saying that unless you get a really good handle on the inflammation at the beginning then you end up seesawing and ultimately take more steroids for longer. I was struggling to grasp how good I could/should expect to feel ie should I be prepared to put up with lowgrade ongoing pain in order to reduce the dose quicker but he was adamant that the target should be symtom free and then gradually reduce 20/15/12.5 then 1 at a time to 7.5 when they seem to worry less about the impact of pred on the system and then slowly does it. I do feel relieved that he isnt pushing the reduction too fast although a bit disappointed that I didnt make even step one reduction successfully. My markers are low to insignificant so the focus is on how I feel which is actually rather nice "I am not a number". Wish I didnt have this though.

20

Hi Angiebabie and welcome to the clan - even if you WOULD far rather not be here. We know that feeling very well!

You are so lucky - you have one of the good ones by the sound of things! I don't want a name (not the done thing) - but where is your rheumy based? It might come in useful.

He is expressing something we have thought for a long time - too many want to stick to a fixed reduction plan that then doesn't fit the patient. The pred doesn't cure anything as such so reducing more quickly by accepting some pain doesn't work - all it does is allow the inflammation to get away again. I likened it to a bush fire: you can damp down the fire or cover it with sand to exclude the oxygen, but as soon as it dries out a bit or you scrape away the sand if there are any glowing embers they will merely break out into flames again and you have to start all over again. And so you go up and down - and each time you seem to need a bit more to put the fire out. You are looking to find a dose that will control the symptoms to the best that is manageable - some people are never totally pain-free for some reason, others are.

I have to say I would disagree about 5mg reductions, 2.5mg at a time seems a better option to me because although some Do manage 5mg at a time, others are very sensitive to the jump in dose. Most tope people suggest not more than 10% of the current dose at a time - and many say that for below 10mg, 1mg at a time then as your guy is suggesting. But we have seen quite a few people who find even 2.5mg at a time hard work, and even at 20mg. We are all different - and at least your rheumy seems to understand that argument. Many of us find that 2 weeks is long enough to get the idea of whether a drop has worked - if the pain starts quickly and then improves it is probably your body adjusting to the new dose of steroid. If the pain takes a few days to appear but then gets worse it is too low a dose. That said, if you are sort of on the current borderline of what your body can accept it may take longer for the pain of too low a dose to appear. When you creep down the doses you are less likely to miss the point where your body is at the moment - you might be fine at 20, not at 15 but if you had dropped 1 mg at a time every 2 or 3 weeks you might have got to 16mg and been fine. If 15 wasn't, you could go straight back up 1mg and be fine. It doesn't mean you won't get lower later, just not yet. Don't feel you have "failed" - it isn't your fault in any way, it is just the disease process underlying the symptoms is still too active.

And a question - when you felt so good did you go back to normal activities? And then try to carry on when you reduced the dose? The pred allows you to manage your illness - as I said, it isn't a cure. It is very common to feel so great on pred, especially at the slightly higher doses, that you rush around trying to catch up. That isn't the idea. Part of managing the illness is to pace yourself - the fatigue will hit if you don't play your part. One very important aspect of autoimmune disease, where your immune system is not working properly, is rest and sleep - your immune system regenerates whilst you are asleep and if you abuse it it cannot do that.

When you are trying to reduce the dose, shelve anything that is unnecessary. No spring cleaning, no dinner parties, no running a marathon, literally or metaphorically. Dust is patient, if your friends won't wait, they weren't worth it, you have to learn to know when you have to say "No". It isn't for ever, it is for the week or two you are reducing - once you are down successfully you can have a bit of fun. Don't complete one reduction and start immediately with the next - have a week or two at a stable state. This is especially the case when there is something a bit stressful you can't avoid - like Christmas! Or visitors. And never feel guilty about buying ready-prepared ingredients, even ready prepared meals - although making your diet the best quality you can, with no highly refined carbohydrates full of empty calories and lots of vegetables and fish rather than meat, will help you feel better and help the healing process. Adding anti-inflammatory foods is also beneficial.

Do tell us how you get on - and do please let us know what region you live in. There may be a real-life support group near you.

Eileen