Polymyalgia ; Help!

oh eilleen you are so right just had two rotten days hoping today is better and felt guilty telling my family how lousy i felt and yet the first thing they would do is ring me if they felt lousy ,this is one of the most misunderstood conditions mainly because we dont look ill .so tired lady join the club your cover name could describe us all and all your concerns etc are totally justified . my one ?is why if you have pain is your gp considering such a big reduction in pred i never reduce more than 0.5mg a month and sometimes i cant even do that ,this is a long haul and no one scores points by getting you off pred quickly . plus remember each reduction causes some withdrawel aches and pains which should settle ,if they dont you are on to a low dose .eillen is completely right in saying anything can cause a bad day and over doing it on a good day is definately one of them so pace yourself good luck carolk

Thank you all again so much. You are quite right (as is my husband). Because I had a couple of 'good' weeks, I walked a bit further and a bit faster when out with the dog and felt very pleased with myself. Also, had family to stay for the weekend and of course played with our grandaughter more than I should have done. Hence 8 days of feeling rotten. Hopefully a bit better tomorrow. Not feeling so angry today although I keep wishing the person who thinks I should go out more would ring up so I could hopefully give him a piece of my mind!

Sorry to hear you are having a rough time at the moment too. It's very strange this illness. Do hope you soon improve.

In answer to Mrs K's question, I am in Leicestershire.

Regards, Kathleen

hi kathleen i have had a much better day yesterday because realising i was experiencing a bad withdrawel i had a complete rest on sunday ,this is how you have to manage this condition if you have a few busy days like yours you then have to compensate by taking time out ,my family have realised this and when they come and stay we build in some rest time for me it can just be a time where i sit with the grandchildren while they paint or draw but it gives me time out where i am not fussing around them like a mother hen .my husband also has learnt the signs and just says go and have a sit down you are doing too much so i fel people that i car about are on my side and that is all that matters ,the ones who do not understand are not worth worrying about . hope things have improved carolk

So pleased you are feeling a bit better. I too should learn to listen to my body - and my husband. My family are also very supportive and I know I am my own worst enemy. I am learning though. Not feeling well again today am very 'wobbly'. Hopefully I will improve as the day goes on. Not planning on doing much today. Thanks for replying. Kathleen

hello carolk and eileen - I have not posted anything recently because I seem to have levelled out at present. Being a bit more sensible too! I was wondering how you both are? You were so helpful and supportive when I first joined the site and I do think about you both. Kathleen

hi i am fine had a bit of a blip at 7mg where it all went pear shaped so went up to 8 mg until it settled now i am on 7.5mg one day and 8mg the next because the 0.5mg was a step to far when i went to 7 mg ,hopefully i will be reducing again soon but have had a busy time with grandchildren etc so have given myself timeout before i start reducing again ,hope all is well with you have not used this site much recently tend to go on the other forum kind regards carolk

Hi Kathleen - lovely to hear from you! How are YOU? Just wondering what you meant by "levelled out"!

I'm feeling very well at present - insofar as one can with PMR, that is. Last summer was utterly mouldy as I had 3 weeks in hospital and after I came home I seemed to stagger (literally) from hospital appointment to hospital appointment. It took until Christmas for the achilles tendon problem that started it all to clear up so I didn't need crutches to walk more than a couple of hundred yards but now we walk about a mile and a half every day unless it is bad weather and I have improved from taking nearly an hour to doing it in half an hour most days. So I'm feeling quite proud of myself. It has been a long winter and we're still in very early spring which is unusual at this time of year here, we don't get more than 2 nice days at a time and on Lake Garda the 20C mark hasn't been even approached yet - unheard of! But this week and next look promising!

Eileen

Hello again Carol and Eileen.. Good to hear you both appear to be improved recently. I too am now down to 7.5mg one day and 5mg the next. So, all going well at the moment. That's what I meant by levelled out - not so many bad days. I have learnt from my previous mistakes and try to pace myself. You have both been so much help - much better than the doctor.

Best wishes to you both and hope you continue to improve - and keep in touch.

Kathleen

Dear tired lady,

I want to tell you my experience and perhaps it helps you in a way as it helps me to read about your and other peoples experience.

I was diagnosed with polymialgia about 10 month ago, after I had practically over night fallen so ill that I could not get out of bed without being in excruciating pain. I was almost unable to roll on the side, get in and out of bed, sit down on the toilet etc. I could not bend down at all and often it took me all the strength I had to do the most simplest tasks.

The pain in my legs was the worst, it felt like shin splints and was one of the worst pains I have ever experienced.

Having had just survived breast cancer twice and being conscious to keep my body chemical and medication free, I was now prompted to take steroids as nothing else I tried had helped me in any way.

I started with 25mg for 3 month. The side effects were terrible. I had nightmares, sweated profoundly, was shaking like I had Parkinsons, but the pain was initially gone.

Later I had to add mophine patches as the pain came back and I did not want to take higher steroid doses.

Today I am on 16mg. I have put on 15kg body weight, I look like a chipmunk and my arms are so swollen that normal sleeves do not fit any more.

I went through periods of bad chest pain that felt like heart attacks. I am also losing my vision in one eye and I am losing head hair and growing facial hair. I know that that is all a result of the steroids/cortison.

I feel weak when I go somewhere but at home I manage fine. I stopped taking morphine patches and that was not a problem and the withdrawal symptoms were light and consisted of 2 days intense perspiration.

The last 2 days my legs and arms are swollen like balloons which is painful and worrying. I will not be able to see a doctor for a few days and I am trying some natural remedies until than.

I hate being on steroids/cortison but it seems to be the only treatment that gives me a certain quality of life.

I am happy for any advise anyone might be able to give me.

The good part of the whole story is that I feel like I have a life again after initially thinking this was the end of the road.

Good wished to you tired lady, and all fellow sufferers who read this.

Hi Elisa and welcome even though you don't want to be here!

You don't say where you live but I have to say I'm surprised you were put onto 25mg pred. It is accepted practice nowadays to start patients on 15mg - studies have shown that this is high enough for the majority of patients to show a response, in fact 3/4 of patients will respond well within a month to 12.5mg. It used to be the case that 30mg was used but that is - as you can attest - often associated with quite severe side-effects, side effects that in some cases are as bad as the disease itself and, in some cases, are difficult to differentiate from the PMR. The Kirwan group in Bristol are confident that if you don't show a quite dramatic response to 15mg within a couple of days that you have something other than PMR, or possibly PMR plus something else.

However - I'm pleased that you are finally being able to reduce the pred dose and things will improve as it goes down although it might not be apparent immediately. I was on Medrol (methyl prednisolne) and it gave me far more side-effects than ordinary prednisolone which I had been on previously - I was switched because I moved to Italy where prednisolone isn't available on prescription). When I was switched to prednisone I immediately started to lose weight, the bloating slowly disappeared and after a year I have lost 26lb and am fitter than for years (I have had PMR for 9 years, have been taking pred of one sort or another for 4). I feel different - that is the only way I can describe it.

I had a horrendous year last year, I spent 3 weeks in hospital after I was diagnosed with atrial fibrillation - almost certainly caused by the PMR itself originally and made worse by the Medrol and needed crutches to walk more than a very short distance for months. I now have a suitcase of medications but between them they have dealt with symptoms I had complained of but which were put down to the steroids by most doctors I spoke to. Steroids no, in my opinion, as they went away whilst I was still taking 15mg of the new version of prednisone (called Lodotra, taken at night not in the morning). I'm now down to 7mg/day - the lowest I've been at for 4 years.

Now, looking back, I really do feel it is worth trying to persuade your GP to check for other things - I never realised the funny sensations I had were actually atrial fibrillation episodes. By the time they were found things were quite bad. There are several heart problems that can be due to autoimmune disease and anyone showing any such symptoms really should be looked at a bit more closely just in case. Once the underlying cause is treated the PMR side is relatively easy to manage - and some of the accompanying problems seem to make the PMR worse so sorting them makes a massive difference.

If you want more info and "company" in your PMR journey have a look at the PMR and GCA UK Northeast Support Site (google or there is a link in a pinned post at the top of this discussion forum) where there is a load of medically approved and monitored accurate info as well as a link to their forum (on forumup) where you will get a laugh as well as advice since it runs like a real support group - not just PMR questions get answered there!

Do keep in touch,

Eileen

Elisa - this didn't really register first time round so I'm adding a bit.

You say you are "losing the sight in one eye" - are they positive it is the steroids? Can you tell us more please as there could be a concern about GCA, a close relative of PMR but one risk with it is loss of vision and it doesn't always present as the doctors think it should with a headache and sore temples. One in six patients with PMR do go on to develop it and often patients who have a bad time with PMR symptoms are more likely to do so.

Some of us here are real worry-warts but we also work on the "better safe than sorry" mantra!

Eileen

Hello Elisa..

So sorry to hear of all your health issues and I do hope you improve. Like you, before I was diagnosed with polymyalgia I was extremely worried as my whole body seemed to be in crisis. However, the dreaded steroids (now accepted) have done the trick. Over the past 18 months, I have had lots of ups and downs but fortunately, at present, I seem to be much better. I am just taking 5 mg steroids a day and am OK on that and will try and reduce to 4 mg within the next few weeks. I have to watch I don't get over tired as that's bad news and I have to pay for it! I too have put on weight but as either Carol or Eilleen said I had to learn to love the steroids and not think of them as an enemy! How right they are. I can walk and do most things so I am extremely thankful.

I do hope this message will be a ray of hope for you and I would pester your doctor if you are not happy with anything. The help I received from Eileen and CarolK was fantastic, in fact much more helpful than that from the GP. Best wishes and keep in touch. Kathleen (tired lady!)

Thank you for your encouragement. Today I am terribly tired myself. I feel like I just want to go bed and sleep, sleep, sleep.

I am new to this forum and I don't know yet how to reply etc. the right way. Please be patient with me.

I think you asked me about me getting blind in one eye.

I was told it has to do with the prednisolone I am taking. I am still waiting for an eye doctor appointment.

I will write more when I am not so tired.

Best wishes Elisa

hi tired lady have not used this forum for a while but interested to hear you are going from 5 to4 this is a slightly different ball game because your adrenals are having to kick in at this low dose people usually stay on 5 for some time then go lower by at least half mg at a time which means 4.5 mg rather than 4 mg and stay on theses doses longer before lowering again just an idea you have managed to lower your dose much quicker than me i am still trying to get to 7 after a blip when i first went to 7 mg even going down at 0.5mg at a time ,one of the resons why i urge caution at these low doses regards carolk

Hello Elisa

If you feel you want to sleep, then do. This is an illness that we can't fight and we have to give in and listen to our bodies, particularly in the early days following diagnosis and on the higher steroid doses. Being kind to our bodieswill also give the steroids chance to get control over the inflammation.

I had the linked condition Giant Cell Arteritis alongside PMR so, of course, my eyes were affected with pain, swelling and blurred vision. Like you, I was told when complaining at one rheumy appointment about having trouble focusing my eyes, that this was a side effect of the steroids. So yes it can be, but it is particularly important to remain alert to any new problem with our eyes, especially when we have already been diagnosed with PMR. If you are "going blind in one eye", then you should not be "waiting for an eye doctor appointment" - you need to see someone immediately to seek reassurance that the problem isn't being caused by GCA, which needs steroid doses of between 40 and 60g to protect our eyesight. Many people go straight to A&E if they have such problems - it is far better to be safe than sorry. You could perhaps ring the eye doctor and explain that having PMR you are concerned about the risk to your eyesight from GCA. Hopefully, all will be well for you but far better and wiser to check it out now. I do hope you start to feel better soon.