Too quick reduction or worth a try?

Eileen

"the Moderator often adds it for us because he is very nice and helpful."

Flattery will get you everywhere! :D

Hi Ewa,

I don't think you can get any better advice on the medica/pharmaceuticall apsects than you will find here from Eileen and others, but I just wanted to tell you about my experience because I know EXACTLY how you are feeling - and honestly, it does get better!

When I was first diagnosed I initially felt a kind of euphoria - yay, it has a name! yay, it's not cancer! - but then after a few days, and reading up about steroids, I came down from my high. Depression is a symptom of PMR anyway, and I happened to be going through a very stressful period, and I have never cried so much in my life. It is psychologically very difficult coping with the idea of a chronic illness, particularly if you are like me - and I suspect you are - and never even take paracetemol for headaches, and have had four children without any form of painkillers.... (the difference with childbirth, of course, is that the pain is worth it for the end product! - there is no good end product for PMR). So if you have a fairly high pain threshold, and an instinctive aversion to drugs (and a little bit of vanity - yes, I confess to that: I was very worried about the weight gain and hamster face!) then I do think you tend to underplay your symptoms. When I said to my son, who is a doctor, that I didn't think I had very bad symptoms, he reminded me of the problem I had going upstairs. The turning point for me was having to get my husband to put my socks on for me. I really didn't want to be that woman who has drugs on the kitchen counter - but more than that, I REALLY didn't want to be dependent on others for such basic things as getting my knickers on in the morning! It just didn't go with my image as a style journalist....!

My symptoms are perhaps a little atypical - I haven't really had shoulder problems - just hips and legs, and I did lose a LOT of weight, so naturally (having read FAR too much on the internet) I was convinced I had multiple myeloma or cancer masquerading as PMR ... And one of my doctors added to my worry, by voicing similar concerns. But as soon as multiple myeloma had been ruled out I felt a lot better. So I think the uncertainty is not helping you, and you need to ask your doctor to exclude other conditions.

So where is the good news? Well, since being on steroids for about six weeks (thanks to advice from Elaine and Mrs O) I have felt absolutely FANTASTIC. Although for the first few weeks I did need to rest mid-morning I can now go for a whole day without resting, and am walking a lot without problems (thought admittedly not yet tackled any hills). Emotionally and pyschologically I am feeling great and I have had NO SIDE EFFECTS WHATSOEVER. I don't have any pain - and only minimal stiffness. (In fact I feel so good, I am beginning to miss the sympathy I was getting two months ago.... I just don't look ill) Having felt like this, I personally think that it is just not necessary to suffer pain - though if I had to go on a higher dose than 15mg I might rethink that.....

I am sure that once you have come to terms with all of this you will feel a lot better - both physically and mentally. But it's just too hard to do it without steroids.....

Let us know how you get on.

OK Dinah - coming out of the woodwork are we

"It just didn't go with my image as a style journalist.." - now if there is one thing we poor PMR'ers could do with it's a bit of style! Suddenly having to waddle not walk, unable to brush your hair, even showering and getting dry a challenge - is there anything you can offer us? Pretty please nicely :D

And the odd bit of friendly journalism exposure? Got any more colleagues?

I know - I'm a shameless hussy :[

Eileen

Dinah

Wow! It's stories like this that we want, and NEED, to hear - fear and denial turning into acceptance and positivity - learning ways of gaining control of IT rather than IT controlling you.

Like you, and I guess many other people, I never take paracetamol or the like and baulked at being instructed to down 8 pills daily all in one go when first diagnosed. BUT I was no longer confined to my bed, no longer attending hospital appointments by ambulance and wheelchair, medication was saving my eyesight and, above all, I was rid of the most excruciating pain. Yes, like most, I have a love/hate relationship with steroids, but thank God they exist!

I'm sure many people will feel reassured reading your post, Dinah - thank you!

Eileen, I am trying to cure myself of terminal shallowness - so no, I won't lower the tone of this forum! But at some stage I will try and write about PMR in one of the broadsheets.

I have found this and the north eastern support group absolutely invaluable in terms of information, support and reassurance - particularly in the early stages of the illness. But as we begin to feel better we naturally tend to drop out. And I think this can create a slightly misleading impression for newcomers which is why I think it is important that those of us who feel better quite quickly (tempting fate here, I know!) keep on posting with progress reports.....

Hello again and tnx for caring answers! :-)

I've been reading and reading and reading - both this and the other forum, I know a lot more now, but I also understand that there is a lot we still don't know. If my fast reduction is a failure, when will I understand it/feel the consequenses? I've been on 10 mg for one week now. And how can I poosibly make a doc understand that her knowlegde may be ..wrong?

And Dinah, tnx for sharing! I must admit I celebrated chiristmas without stockings, couldn't get them on... So I understand I have to use pred, whatever the side effects will be.....just that idea of mine that I can reduce the cortison risks by taking as little as I can. What are the signs of an inflammation under control? No pain? Or some pain anyway?

Ewa

And how can I poosibly make a doc understand that her knowlegde may be ..wrong?

If you Google The British Society of Rheumatologists Guidelines for the Management of PMR you will find it very informative. Among othr things, it sets out the criteria for the diagnosis of PMR (including reference to PMR being diagnosed with normal inflammatory markers) and a suggested regime for reducing Prednisolone. Perhaps you can print off a copy for your Dr.

As to the signs experienced when the inflammation is under control, most sufferers find that they have about 70% relief of their pain within hours or a couple of days of taking the first dose of steroids. Some lucky people then go on to become pain-free down through the doses but many of us continue to suffer from stiffness, particularly after first getting out of bed. It's a very individual experience and also can very much depend on finding a good balance between exercise and rest.

Dinah - I'm serious about this though I have no idea how to go about it. There are thousands of women who have lost their self-image because of their illness, for many PMR people it is relatively mild - some weight gain and our movement is affected. Walking becomes a waddle. But I know from my daughter that many women on long term high dose steroids suffer greatly because the weight gain can be extreme - and in other rheumatic illnesses there is joint destruction. The initial fear of steroids that we are talking about here is so extreme in some people that they refuse to take them at all. There is a role in boosting their self-confidence that someone like you could help with. And it isn't lowering the tone of the forum at all! Or come over to the other forum - we'll give you a column of your own!

"But as we begin to feel better we naturally tend to drop out."

That's is quite true, we see it a lot on the forums and you never get to know is it someone who has simply given up or have they been lucky enough to feel so good they don't need the support - albeit virtual. That is also something we need to know - for the positive boost it gives us which helps avoid terminal depression about this blasted disease.

Speaking of which - have you done the research survey which MrsK is pushing over on the other forum and which will also be on the northeast support group site? Until the medics get the message of what we are facing in terms of ignorance and dilatory treatment in all respects nothing will change - and we are the only people who can tell it the way it is.

Eileen

ttotaly agree with previous post there is a light at the end of the tunnel and we have to show newcomers that this condition is beatable with patience !! carolk

Hello again! I know for well I am no sunbeam at the moment! Both depressed and confused.... So I'm not trying to fight u people, but my doc isn't listening and I won't bother my husband.

From what I read it seems clear that we still not know the optimal doses, we don't even know if remission depends on steroids or not. (Makes me angry that this illness obviously not is a "popular" one amongst researchers, women in their fifties and so on - that will not die from their condition - is not THE THING for research....)

I also read a lot about how terrible the cortisone is when using it long-term, so I would very much hear of the experiences with too quick or too slow reduction.

And as for my doc and I, she gives me the impression she knows enough.....and therefore she won't seek any new information.

Hi Ewa - if your doctor isn't listening you need to find a new one if that is at all possible. When you have a chronic illness if you need someone you can trust and who knows what they are doing - or who will admit they need to learn. Your experience is all too common I'm afraid. I'll try to answer your "questions"

"From what I read it seems clear that we still not know the optimal doses, we don't even know if remission depends on steroids or not."

We will never be able to answer the first bit - every patient is slightly different both in their illness and in their reaction to pred. The PMR isn't the disease - it is the words to describe the symptoms but in Greek: poly = many, myalgia = inflamed muscles, rheumatica = pain. There are many diseases that are in the same group, the autoimmune diseases. Something makes your immune system stop recognising your body as being "on the same side" and the cells which usually attack and destroy invading viruses and bacteria turn on your tissues and damage them instead leading to pain and inflammation and fatigue - just as if you had influenza. And just like a viral infection, which can be severe or mild, the autoimmune disease may lead to a lot of damage or it may be less severe. Noone knows what is the trigger - it might be an infection, it might be something in the environment, it might be genetic - and is probably all 3. The expression of the autoimmune disease varies and so you find people with symptoms called rheumatoid arthritis, another sort of arthritis, lupus, diabetes, multiple sclerosis.

In all of the physical forms (arthritis, lupus, multiple sclerosis) steroids help improve the symptoms - but they cannot cure the disease. In some cases a large dose of steroids makes the symptoms disappear altogether, almost like magic - and that is where steroids got their bad reputation from. It was discovered that patients with some form of arthritis recovered as if with a miracle when given large doses of pred in the early days, the 1940s or so. They got up out of their wheelchairs and walked. Later it was realised what damage large doses could cause - osteoporosis, diabetes and so on - and the terror stories started. Nowadays, although large doses still cause problems, there are other ways of combating them with other medications and there are also medications for lupus, MS and rheumatoid arthritis which reduce the use of steroids. But for some diseases, PMR and GCA amongst them, nothing else has yet been found that does the job. Knowing what the cause is is the essential to finding a cure - until then you can only manage the problem. But there are millions of people all over the world who take steroids every day for many many diseases with relatively few problems. They are so well used and for so long a great deal is known about them.

The optimal dose in PMR is the lowest dose that keeps the symptoms away. The dose you start on, 15 or 20mg has been chosen because that is enough for the majority of patients with PMR to respond. If you have a lot of inflammation already present you need slightly more usually, if the autoimmune disease causing it is very active, you will also need slightly more. A study in Italy a couple of years ago found that a starting dose of 12.5mg/day will achieve control of the symptoms within about 6 weeks in 75% of patients - the other 25% need a bit more pred or more time. So most patients start on 15mg/day, it used to be much more, 30 or 40mg, but that means your total dose of steroid over the course of the illness is higher - it is better to start at the lower end of the scale. Then you start to reduce slowly - slowly because if you go too fast you might miss the best dose. You might be well at 10mg but the symptoms come back at 5mg - but had you gone slower you would have seen you were well at 7mg but not at 6mg. And as you reduce the inflammation will not get bad enough to cause symptoms overnight - it may take a week to feel ill again. So if you go in small steps and stay on each step for 3 or 4 weeks you will find the best point without overshooting. Rushing at reducing in the end usually means you end up taking MORE than if you go about it slowly. You reduce the dose too fast or too far and the patient has a flare of their symptoms - and almost all flares are due to just that. That is stated very clearly in the medical literature. To control the symptoms the dose has to be raised - often to way above what would have been the ideal dose and then you reduce again. Also in the literature is the fact that once you start to yoyo the dose subsequent reductions become harder. End result: just what you wanted to avoid, taking a larger amount of steroid.

Remission is probably not dependent on steroids - the autoimmune disease isn't affected directly by the pred and some people have the symptoms for a couple of years or more and then they disappear whether or not they are treated. They may come back at a later date. The autoimmune disease varies from person to person - it can be everything from mild to very aggressive. And it can vary in someone with time, it can apparently get better and then return later. In people for whom the symptoms are very bad and who need some form of treatment it has been seen that people who get off steroids in less than 2 years (about a quarter of patients) are more likely to relapse. About half of patients are able to get off pred in 4 to 6 years and tend not to relapse. The rest have a much more chronic form of PMR.

It isn't popular for research - for exactly the reasons you have given. The vast majority of patients are over 60 so no longer economically of interest in the workplace. Who cares if granny has to sit in a chair all day - that is the traditional idea of a little old lady reading stories to the grandkids! And at the other end of the spectrum we aren't cute little kids with a nasty disease. Into the bargain, autoimmune diseases are an unkown, we don't even know what causes them - no cause means it is difficult, impossible to find a cure. But things are changing - we are to be expected to work for much longer our governments tell us - so it will be a section of the workforce who will be disabled and need benefits instead of the pensions we have paid for in past years. And our generation is not ready to sit down and keep quiet - we have much higher expectations and are internet literate - especially the women who form well over 2/3 of the sufferers from PMR.

This has two aspects: one is that we know about the stories that in the past our doctors have brushed under the carpet because they believed that knowing them wasn't good for us. But it also means that we come along with information and questions to our doctors. The downside is often it is difficult to know which stories are true and which are exaggerated. Cortisone can be bad in high doses and over long periods. I won't deny that. However, used carefully and properly and under monitoring for blood pressure problems, eye problems, diabetes and osteoporosis, they allow patients with PMR a decent quality of life and for the patients with GCA they do far more - they stop them going blind. If you have PMR you are at a higher risk of developing GCA anyway. If you are not treated that risk if even greater.

As for our extended knowledge about what we have - as a result of the support groups and their support teams of doctors - we turn up to our primary care provider probably knowing more about what we have than they do. I do have a lot of sympathy for general practitioners these days: I too have a degree, I too can read medical journals and textbooks and know quite a bit about the illness I have and options for dealing with it. Probably, I know more than them because I'm only interested in my field, I am a specialist on how I feel, how my disease affects me and my life - I've read the relevant medical texts and research from the top people. They are GENERAL practitioners. I have read the latest medical papers, they almost certainly haven't.

So when we meet someone like your doctor it can cause friction and resentment on their part and distress on our part. I'm afraid that the way she is reducing your dose shows she DOESN'T know enough. GPs have a habit of throwing the new information they are sent by drug companies and their betters in the medical fields, in this case the rheumatologists, directly into the bin, without even reading it. I've seen them do it, I've heard them admit it. I don't expect them to know it all, what I do expect is them to admit they might NOT know it all and to be willing to learn from their betters. Everything progesses with time, especially medical knowledge. It didn't stop the day she left university and a lot has been realised in the last 2 or 3 years - we know that, we've been involved in it.

I hope this long post helps - ask if you don't understand anything I've said. And don't ever feel you can't have a shout about things here. Unlike your doctor and your husband - we have been there and know just what you are going through. That is why we are here.

Eileen

Hi ewa!

When I was diagnosed with pmr and gca, I got just about no information about the illnessess, but I remember one thing that the doctor (who was subsidising while the ordinary speialist had started her vacation) told me that I could be lucky that it was most likely that I would be free from the illnesses within 1 - 1 ½ year . He meant tht compared with some other illnesses that you keep all life long, this wasn´t too bad. I had almost no pain, so for me it was easier to get through the different stages. After some time I found some forums (1 for UK, 1 for US and one for Canada), so fairly soon I got more and more information. Now there are especially two forums to visit - this one and the UK Northeast forum that has been mentioned a couple of times in the answers to you. As you have seen, there are several persons with an extraordinary (personal) knowledge that they share. In the last post from Eileen, you have just about all you need to know. When you visit the doctor next time, I think you should print out Eileen´s last post and also the British regulations that somebody mentioned. I am sure that your doctor can read English, so that wouldn´t be any problem. We used to have a Swedish forum but it ended about a year ago, so I think it must be very hard for Scandinavians not to have anything like the support groups in UK. In the other forum (webaddress at top - before the first topics) you can also read the stories written by persons with pmr and/or GCA - I wrote one, for instance. By following these two forums you can get a very good knowlege about pmr and GCA that will make it easier for you to fight the illnesses and you know what to expect. Mrs K, who is especially active in the other forum, often writes that "knowledge is power" and "it is not Pred that is the enemy - it is pmr and GCA". If you adopt that way of thinking, I think it will help you a lot. Also, remember that when you reach lower doses, say 5 mg, your body is almost back to normal and the urge to reach zero and get rid of pmr can be slowed down as the dose is lower than the cortisol that is produced by the body. In the other forum, we have a Club Zero. Among those I remember having posted here, you can find Mrs K and Mrs O and myself. With Club Zero, we want to point out that it is really possible to get to zero.

Ragnar

Eileen tnx a lot for your very informative and thoroug answer! I understand I have to re-think about the speed of my reduction....altough I want so badly to get down to between 5-7 mg Pred

I still hope that my early treatment make me avoid the full development of the symptoms....

And Ragnar, I've been reading most of the information from this and the north eastern forum, and also the Norwegian site, and the one of the mayo clinique, and a lot of others! And tack to u and the others for continuing to answer me.,,, My hope is that I can easily go to the club zero, and my deepest fear is that I also have the GCA....and my overall feeling is that I don't want this disease!! I KNOW I have to face it and deal with it, but I can't cope at the moment, I am sorry....

But today, I tried a bit of jogging, not far, not quick, but still that made me believe that I can.... I'll see tomorrow if I was to cocky!

And tnx again I thing most of u could give better treatment than any doc :D

thing=think!

We all hope to get off pred soon - you are not on your own there! Nor in hoping the symptoms won't get worse. But the greatest mistake you can make is to become too desperate to stop taking pred very quickly - because if you are unlucky it can be such a disappointment that you become even more depressed than the PMR makes you feel anyway. It is part of the illness.

Please be careful with exercise too. Even physiotherapists warn about overdoing therapy because part of the PMR problem is that your muscles take much longer to recover from being exercised than normal. You almost never notice it at the time, feeling it the next day or even 2 days later and then it takes several days for the sore muscles to go away. It is a particular problem when you first start taking steroids simply because suddenly you feel so much better and think you are healthy again! Another time you need to be careful about overdoing it is at the time you are trying to reduce your dose - it is a good idea to clear your diary of things you MUST do and try to rest for that week. That helps towards success. And have I said before - after you have reduced the dose, stay at that level for at least 3 weeks before even thinking about reducing again. If the dose is now a bit too low it can take 3 or 4 weeks for the inflammation to get going enough to make you feel sore, it takes some days to start and then gets steadily worse. On the other hand, if the pain you are feeling is from reducing the steroid, steroid withdrawal, it starts soon after you start the lower dose and then steadily gets less as time goes on.

Eileen