Polymyalgia ; Help!

welcome if you look on the forums mentioned on the website you will find lots of info on pmr ,although i do not want to criticise your gp his experiance is probably limited , the side effects you experianced at 15 mgs are common but they do wear off i wonder how quickly you came down from 15 to 10 mg steroids control not cure pmr the dose needed is the dose that holds the symptoms to the point where you can lead a reasonsble life within some limits ,fatigue is the symptom that everyone has and i am afraid this will stay with you although it can improve , weight gain and water retention in variuos parts of the body eg face/ back of your neck is another ,this is common .i certainly would not recomend 10 / 5mg regime it strikes me your pain control is not good enough to reduce that way .when your pain control is improving try reducing slowly with periods of time in between bearing mind each time you reduce you will have a few days of feeling rotten until your body adjusts to the dose do not yo yo its fatal stick to a dose and reduce by judging yourself if you are ready to try , i reduce 1/2 mg every month mainly because i was reducing 1mg a month and at 9 mg i hit a wall and had to go back up so now i go slowly down and if i feel my body is not ready i wait an extra few days its not a race !!!! now i am safely passed 9 mg with no ill effects and hope to go down steadily without a hitch this time . there of lots of regimes to reduce you have to find one that works for you not the gp !!!!i am 16 months on and i still get tired but compared with those first few months i am tons better ,this is a long journey at least 2 years so get lots of info and keep asking ???? we have all been there and we will help you so double chin up you can do this carolk

Thank you so much for replying to my cry for help! The information you give is extremely useful and I will do as you suggest and stick to 10mg per day for the time being. As I am new to this site, I think my original reply to your note went elsewhere! However, I will look further into my illness as you suggest and hopefully will gain more information. Regarding the steroids, I thought if I could manage by reducing the dosage it would result in me being healthier drug wise (if that makes sense). My prescription is given in 5mg tablets. I take it one can obtain lower dosages per tablet for when I reduce the daily amount (if that makes sense). Today I am feeling more positive and not completely drained of energy. Thank you again and i will try not to look at my double chin and increased waist size!! (well not today anyway)

i realise everyone feels steroids are the enemy but you have to get your mind around the fact they are the drug for pmr ,i really tried to get down quickly but did i pay the price and wasted several months struggling to reduce and getting more pain now i know different, no one likes the side effects but the alternative is worse . pred comes in 5mg 2.5 mg and 1mg they can be enteric coated if you need it but take longer to be absorbed.take the whole dose am with your food , i presume you take adcal take these with food at lunchtime and with your evening meal . do you have your bloods done regularly i have a crp and pv done monthly some have an esr not everyone has them done as often as this its my gps idea , although bloods help monitor the condition i never get hung up on them because they do not always reflect how you are feeling they are just another tool .by the time you get through this you will be an expert on pmr and will be telling your gp what dose you should be on !!! glad you feel positive today we are here for the good and bad days so keep posting your ??? carolk

Thanks again"! I asked my doctor how often he needed to see me and he said only if I felt ill. There was no mention of me going in on a regular basis or having blood tests or anything else. I don't know what enteric coated is or adcal although I presume this is a calcium based drug. I did mention a bone scan to the doctor and he suggested I arrange this myself. This is a big concern because all my family suffered terribly with osteoporosis. So that's my next step. I also don't know what crp, pv and csr are. Not very knowledgeable on medical terms. I will have to make a list and have words with my doctor when I next go. A good day today - have actually been into town! Thanks again for replying. K (tired lady)

Hi tiredlady! Welcome to the club none of wants to be in. Carol has already told you loads so I'll try not to repeat what she's said.

Arrange a dexa scan yourself? I take it you are in the UK? Go back and ask him what he does to earn his salary!!! He only gets paid because you are one of his patients - he seems to need reminding of the fact you are, to all intents and purposes, his employer and it's time he did his job. That includes giving you calcium and vitamin D supplements (pred makes you lose calcium in your urine so you need a better supply) and sending you for a baseline bone density scan to see if you need more treatment than that. Particularly if there is a family history anyway. He also needs to see you at least every few months - and not just when you feel ill - so you can have your blood sugar and blood pressure checked, even if he does nothing else. There are side-effects to steroids and you need monitoring for them.

If you are on 10mg and that is only just controlling the symptoms you probably need to be slightly higher - there is no point taking pred and still having the symptoms, you might as well not bother because that way you get the disadvantages of pred without the benefit. The pred doesn't cure the PMR, that is just the name for the symptoms, many painful muscles, and it relieves those symptoms. The disease itself is an autoimmune disease - that just means something goes wrong and your immune system attacks parts of your body leading to inflammation and swelling and that causes pain.

Did he tell you to reduce from 15 straight down to 10mg/day? If so that is probably why you are having problems now. The reduction is to find the lowest dose that will control the symtoms - but you can't find that until all the inflammation is gone. If you try to reduce too soon or too fast the inflammation will come back. The experts say not to try to reduce by more than 10% of the dose you are on so from 15mg you would not reduce by more than 1.5mg - tricky of course with 5mg tablets. To reduce you need a supply of 1mg tablets and a pill cutter so you can get 1/2mg as well. Some people manage 2.5mg drops and you can take the old dose 1 day and the new dose the next - and that makes the drop smaller but isn't really as good as taking the same dose every day.

And if you are still having problems - don't try to reduce to 5mg even taking the doses on alternate days. In many illnesses where you need pred for a short time you can do that, you really can't with PMR. Trying to reduce too quickly usually just means the PMR will flare up again and you'll need to go back to a higher dose - and the next reduction may well be more difficult and so you end up with having taken more pred not less in the end. Pred isn't very nice - but it is the only thing that will allow you live a fairly normal life. It isn't the enemy and trying to manage with a lower dose just won't work. The shortest time you should be expecting to get off pred is a couple of years - doing it sooner is associated with having a relapse later and many people are on a low dose of pred for much longer than that. The side effects do improve as you reduce but not if you end up yoyo-ing because the symptoms come back.

The tests Carol mentioned are markers for inflammation in your body and are often raised in PMR - but not necessarily, mine are very low. CRP is C-reative protein, ESR is the erythrocyte sedimentation rate which the rate the red blood cells settle to the bottom of a tube when it is standing upright. Can't remember what the other one is offhand - I've never had it done.

As Carol has said the tiredness and lack of stamina is a part of the PMR - not necessarily the steroids - and is common in almost all autoimmune diseases. Do what you can manage - it is really good that you make yourself go out with the dog as that helps with the osteoporosis risk too. But you have to learn to pace yourself - just because you feel well today don't go and overdo it because you will pay for it tomorrow. And tired muscles take much longer to recover in PMR.

Your GP seems woefully ignorant about PMR - at the top of the PMR discussion forum on this site there are some PINNED threads. The moderator here has put some links in one of them to other useful sites and one that you will find particularly helpful is the PMR and GCA northeast support site. There you will find links on the lefthand side of the homepage to useful medical information - including the British Rheumatology Association's Guidelines for the diagnosis and treatment of PMR. Download them and print them off and make a present to your GP for his education. Other things you will find on that site are stories of other people's journeys with PMR and articles about all sorts of things, all medically approved and from healthcare professionals. There is also a link to another forum devoted to PMR and GCA, rather busier and larger than this one. Carol and I are also members over there, together with a load of other people who will welcome you and answer your questions - someone has always had the same experience that is worrying you! We also have a really good laugh over there - it isn't all serious - and if you need to have a rant, whinge or moan we'll listen and sympathise.

all the best and see you around again now you have found us,

Eileen

i am amazed with your family background that your gp has not done a bone profile(blood test) and a dexa scan (bone scan) these would show if you have osteoporosis or would be at risk of getting it , it also gives a bench line to see if things are changing later on after you have had pred for a long period .adcal is a tablet taken twice a day it contains vit d and calcium given because with your condition and the pred you do not absorb these things and they are needed for heathly bones . crp pv and esr blood tests measure inflammation and iif raised can be an indication of pmr but also of other conditions .its quite common for drs to use these markers to decide on dosage at first , however we are all different and some people on the other forum have low results but painfull pmr !!! enteric coated drugs are basically sugar coated shells around the pills which mean they take longer to melt and can help if your stomach iseasily upset , i do not use them but others do .how will you manage your pred reductions if the gp is not in touch with you is he leaving up to you ?? glad you had a better day carolk

sorry eileens reply was not there when i posted so i have repeated lots of eilleens post plus she is so much better at explaining than i am so sorry i have only really repeated what you already know from eileens explanation carolk

Thank you CarolK and Eileen for your replies. I feel much more knowledgeable since reading them. I have learnt more from you than from my doctor. My husband has suggested seeing a different doctor when I go again. I will print off the information and go onto the site you suggest. I am in the uk (the Midlands). I am so pleased I posted my original message as I was on a bit of a downward spiral. Many many thanks to both of you and no doubt I will talk to you again soon. K

Several weeks have passed since my last message. However, I have now been seen by a different doctor. I took your advice and metioned frequency of visits and my fears about osteoporosis. He now wants to see me on a regular basis and I have been given Calcichew-D3 Forte (2 per day) and 70mg Alendronic Acid tablets (1 per week). I have only taken the Calcichew as yet and will start the Alendronic Acid tablets tomorrow. i am a bit nervous about taking them as I have a hiatus hernia and related stomach problems but hopefully they will not make it worse. I am thinking positive!

I read the message posted about leg muscle pain and that is one of my problems. Nothing has been said about that at the doctors - do I need to be concerned? Is that the norm?

Once again thank you so much for all the information. Could do with you when I go to the docs!!

(Double chin still growing - have not learnt to love it yet!)

please think carefully about aa i could not tolerate and once i read the info iwas glad to stop it carolk

Use the search engine on this site putting in Alendronic Acid. And have you read the side effects on the paper supplied with the tablets.

Have you had a Dexa Scan. This should be done when you are on high longterm doses of steroids. Your GP should arrange one for you to check the bone density. And I don't mean a scan done on the heel, like in ASDA, but a proper scan done on the NHS. It is also in the BSR Diagnosis & Guidelines for PMR. Go to the website, pinned on a sticky, and under Useful Medical Information read up and print off.

If your bone density is low, then you can consider other Bio-phosphanates, there is more than one.

sorry my post was brief have visitors staying and the grandsons hog the computer . your calcium tabs should be taken with food and not with the steroids i take mine 1 @ lunchtime 1'@ evening meal time .the aa you must decide your self after reading the info, i agree with mrs k there are other meds if dexa scan shows you are at risk .please keep in touch and let us know how you get on you will get good and bad days and leg ache but if its painfull then you have to review steroid dose carolk

Hello again.. Thanks for all the information. I was doing very well for two weeks and thought I was on top of the illnesss. However... this past week has been terrible. I have slept most days and dragged myself about inbetween. So, as a result I am down in the dumps! (although I am trying to be positive), Saw the doctor last week for a routine update and i have had more blood tests, the results of which i will get next week.

Do you find that friends and reatives just can't get what this illness is all about? It has been suggested to my husband that if I went out more I would feel a lot better. Talk about a rush of blood to my head. I am still annoyed! Anyway, I know that's not really relevant to this discussion but just had to get it off my chest.

I do hope you are keeping on top of everything. Regards, Kathleen (tired lady)

Yes, yes, yes - how many questions were there?

You honestly don't "get on top" of this illness I'm afraid. As you have found - you think you are doing well and, wham, it turns round and bites back.

I bet you felt good and did too much - the absolute crux is to remember you are still suffering from this autoimmune disease and, although the pred is allowing you to manage the symptoms, it is still there. I've just had 2 bad days - why? Because the weather changed! Truly - a change in the weather to colder, wetter, windier - anything like that will make you feel less good. It depends on the person. And even though the pred helps with the aches and stiffness, it does nothing to control the fatigue aspect of the autoimmune disease. That remains and is perhaps the worst part of the whole thing.

And yes - my husband is a former healthcare professional. He is hopeless - I've had "you're fat because you eat too much and don't do enough exercise" (that was because I was eating a pudding at a favourite French restaurant near Dunkirk - we go there twice a year at most and I keep puds for special occasions anyway) as well as "I get the impression you aren't trying" when I refused to even consider a 1 in 6 hill up to the nearest restaurant at a campsite. After being told by the orthopaedic specialist to avoid steep slopes because of an achilles tendon problem which has left me using crutches since early March. Oh-kaaaaay!

If you go to the northeast pmr-gca support site (see the links in the sticky at the top of the thread) you will find there is a DVD called "you are not alone" which has been specifically developed by professinal s who work with pmr patients to try to explain to new patients, doctors, family and friends just what this vile disease does to us. We look well - sod the pred - and have good days. But that doesn't tell anyone how ill we can feel, how tired - a tiredness that doesn't go away after a good night's sleep and that can hit in the middle of doing something - and how despairing.

Whoever the idiot was who so helpfully made this suggestion was - try going out with them and going to sleep on the table, let them help carry you to a car or taxi to get home - really, these people who think they know it all about a disease they don't have make me SO angry. I'm even reluctant to go into the village alone in case I get stuck! There are plenty of cafes and bars I could have a rest at though ;-) so it wouldn't be too bad.

A couple of days ago I suggesed someone ask their idiot ignorant and rude GP if he would treat a patient with rheumatoid arthritis as he was treating this lady. The answer is - probably not. But what we have is almost the same as rheumatoid arthritis in terms of pain, stiffness and fatigue. Mercifully we don't have the joint destruction but neither do we have a choice of drugs to help either. We have pred and all its side effects as the only interim hope of a normal quality of life until the disease process dies out. It isn't "just" depression - it isn't "just" anything. It is a life-changing chronic disease that takes an awful lot away from us. Usually at a point in our lives when we are looking forward to being able to savour time to do what we want. It stinks.

And you are wrong in one fact - it is perfectly relevant to any discussion under this heading. If it is affecting you - it is relevant. We don't kick people off here because their illness turns out to be something other than PMR - if they have the "PMR syndrome" of the symptoms, and it affects their normal life, they belong here. What is causing the pmr syndrome of symptoms is immaterial. Changing the subject is normal part of a conversation. No harm done.

Hope you are feeling better now you've had a perfectly justified whinge :-),

EileenH

Tired Lady

Whereabouts in the Midlands?