Too quick reduction or worth a try?

Hello Eileen I don't think I overdo by doing a few hundred meters of running...my body feels pretty well today? Think I've been reading that people walk and swim and ski?

For the last two days I have had some cramps in my jaw, a slight pressure behind my eyes, but no headache at all.....wonder if I feel this because I am so scared? Isn't headache always part of the GCA-thing?

Ewa

With regard to "cramps" in your jaw, the jaw pain with GCA is usually only felt on chewing and goes away when you stop chewing. With the added symptom of feeling "slight pressure behind your eyes", this would ring alarm bells with me and get me hot-footing it to a good opticians or even to the Accident & Emergency Department. It is possible to suffer from GCA without experiencing head pain. The symptoms could possibly be as a result of stress you are feeling at the moment but do get them checked out immediately - better to be safe than Do keep in touch and let us know how you get on.

Tnx for quick reply..! You don't mean emergency like today? Think my GP can see me tomorrow..

"I don't think I overdo by doing a few hundred meters of running...my body feels pretty well today? Think I've been reading that people walk and swim and ski?"

I ski usually - haven't this winter yet as a result of achilles tendon and back problems in the spring which I still haven't recovered from. But I used to ski all morning from 9 until nearly lunchtime - with PMR I'm lucky if I manage an hour and half of that is on the lifts! There are days when walking a few hundred yards leaves me unable to do anything else. Most of the people who say they walk and swim are able to do a fraction of what they did pre-PMR and couldn't do it every day.

That said - if you can manage it, do it. It was just a warning that it is very easy to do too much on a day you feel well. And it is an up and down course - you can have a wonderful day or two and then be unable to do anything the next. Usually because you did to much on the good days!

As for jaw pain - like MrsO I'd ask advice. There are doctors who believe headache is always present in GCA - they are wrong. Headache is a presenting symptom (i.e. one of the symptoms complained about to a doctor) in only 40% of patients although it is found at some stage in about 70%.

GCA can be present in the neck arteries without having reached the temporal artery or other intracranial (inside the head) arteries. If the neck arteries are affected, you can have jaw pain without any headache as such. You may also notice a sensitive scalp.

Eileen

Ewa - if you have any bad headache or visual symptoms you should go to the doctor immediately .

By visual symptoms I mean blurring and seeing things double (especially in the morning or after a doze during the day) or a sensation of there being a blind pulled down over your eye or black patches in your field of view.

Other things to look for is any swelling of the temporal artery or it being sore to touch. The temporal artery is the just above where the sides of spectacles run, between your eyebrow and the hairline. Often you might feel as if you have flu or a bad cold - but you often feel like that with PMR anyway.

Do try not to worry - although I know it is easy for us to say! With time you will be more aware of your body and anything that isn't how you usually feel. If all you feel is discomfort in your jaw and it isn't related to chewing (i.e. it starts when you are eating and goes way when you have stopped) then it could well be tension if you are so worried.

If you have any of the symptoms we've described then you should really try to see someone immediately - especially at the weekend when you have to wait more than a few hours. No emergency doctor should be annoyed at you checking about something like the symptoms of GCA, especially if you have already been diagnosed with PMR.

Eileen

Hello again, friends! Have had a week or so resting and trying to cope with my new situation, and feel calmer now. I stil try to reduce pred, 8, 75 mg twice a week this week, 3 times next week and so on. I still think ( hope) my pmr is a mild one, but I've understood that it is what it is, and that I will have to cope with it.

It is fantastic that u people use so much time and engage so deeply into us newbies with our naive questions .

Trying to read about symptoms, think I saw something about finger grip or slip, I keep on loosing items all the time? Others who have that problem?

i dont quite understand your reduction rate of the steroids it is much more sensible to go very slowly as i am sure everyone has explained , i think you are saying you have a problem gripping things with your hand and things slip out of your grip ,this is very common and i am no longer able to open jars and bottles fortuanately i have a husband who does it for me !!! carolk

Ewa - yes, not being able to grip things properly is quite common in PMR. Lots of us have broken things by dropping them! I was almost unable to lift a cup or glass before I started taking pred - partly as a result of the pain in wrists and fingers which was due to bursitis or inflamed tendons. That is also part of PMR even though many doctors will try to tell you that hands and feet are not affected. As with many things - they are WRONG! You also tend to find a sort of general clumsiness which makes you drop things because you didn't put them down properly or trip over things you thought weren't in the way

Do be careful with your reduction Ewa - how ever much you want to get down to 5mg pred, if your body isn't ready you will have to stay at a higher dose for a while. If you try too hard you might find you have to go back to a higher dose and you will then find it more difficult to reduce the next time.

Remember - the pred hasn't got rid of the cause of the PMR so it doesn't matter whether you have a mild attack or a more severe one. The pred you take allows you to manage the symptoms we call PMR.

I have had PMR for more than 8 years, for the first 5 it was mild enough not to need pred at all. Then it suddenly got very bad, after 3 and a half years on pred I am just trying 8mg/day again. I had been down to 7.5mg but had to go right back up because of a bad flare from trying to reduce again to 7mg. And if your symptoms had improved and then you notice them again - it is a warning that you are trying to go to too low a dose.

Eileen

Tnx carolk and Eileen

carolk, Okey, that makes two of us I seem to keep on dropping items all time, and my arms are weak, but no pain - except for this night aching.

Eileen, I think I see what u mean, and I 'll stay on 10 mg till I see my GP on the 6. I just need to sort out what I am able to do, what influences me and how I can cope with the pmr symptoms. I do not quite understand what is withdrawal symptoms and what is pmr symptoms.

My latest pain is inside the elbows (!!) and very stiff neck, but still it is not unbearable. So I think it is a mild one, and that allowes me to use less steroids and for a shorter periode. Eillen, if u had started on pred on your onset time, do u think it would have had another course?

What is creepy is that the illness is kind of controlling my mind all the time!

Are u all seeing "rheumies" and is that common in UK?

Hi Ewa,

"I do not quite understand what is withdrawal symptoms and what is pmr symptoms"

What we usually say is that pain which starts soon after lowering your pred dose but then improves over the next 2 weeks is most likely to be steroid withdrawal pain. If the pain doesn't start until several days after starting with the new lower dose but then gets worse as time goes on it is more likely to be the pmr appearing again. An article I read recently suggested that withdrawal pain and stiffness gets better if you rest but pmr pain and stiffness tends to get worse if you are not moving about. So it is a good idea not to give up immediately with a new lower dose, give it 2 weeks or so to see if it improves. If you use the sort of reductions we have suggested - new dose just once a week the first week and then increasing the number of days very slowly - you are much less likely to suffer from the withdrawal pain. It is when you try to jump down a big step that tends to happen.

"if u had started on pred on your onset time, do u think it would have had another course?"

I really don't know - everyone is different, every dose of pmr is different. On the other forum there are ladies who have had more than one episode of pmr. The first and second attacks were totally different in every way: how they felt when it started, the symptoms, how they recovered, time, whether it was an easy journey or difficult. Sometimes it is even different at various times, before or after a flare for example.

"What is creepy is that the illness is kind of controlling my mind all the time!"

I think that is very common with any chronic illness and especially when there is no cure of any sort. It is easy when you are ill and you are given a treatment that the doctor says will make you better, it doesn't matter if it is going to take a long time, the promise it WILL get better gives you an end point, a light at the end of the tunnel. And with pmr one doctor does one thing, another does another - and none of them seem to believe you about how you feel and how the pred makes you feel, how well or not it works.

You wonder what you did wrong to develop it (nothing, it is just so), whether you could have avoided it (possibly - possibly not), whether you can do something to "conquer" it. I preach "acceptance" - that isn't giving in to it, it is accepting that you are where you are and you will be happier when you recognise that and adapt to the new version of you and your life. For example: You are so tired in the afternoon that you are bad tempered and unable to do anything - instead of fighting the fatigue, arrange your day so you can rest (preferably lying down), even sleep for a while. Then you will get up feeling strong enough to finish the day. You don't lose time - you gain another section of the day. Or you are in so much pain and so tired after doing the cleaning and running the household that you feel ill for the next few days - either learn to love dust or get someone to do it for you.

It is all too easy to think about yourself and "it" all the time - especially if you don't feel good. Find things you CAN do and your mind will be distracted. At first I spent a lot of time searching on the internet, reading medical articles. But that allows me to tell people about pmr - I have studied and passed the exams so to speak and now I can teach. Not much time left to feel sorry for myself - because that is what it is in many ways. If you can't run - walk, if you can't do your old hobbies, find new ones.

"Are u all seeing "rheumies" and is that common in UK?"

Not all. If a GP identifies your symptoms as being pmr and does the right tests to rule out something nastier and you respond well to pred, there is no real reason to see a rheumy. My first experience with a rheumy was bad - he didn't want to know about pmr, he wanted it to be something nastier despite my having responded overnight to pred. It is recommended that your GP sends you to a rheumy if you are atypical in your symptoms, don't respond well to pred, if you cannot reduce the dose easily or if you develop other symptoms. If you have signs of GCA then care under the supervision of a rheumy is recommended. Otherwise it depends on how confident your GP is about overseeing the reduction of the pred.

I don't live in the UK any more, I am in Italy and my GP (who has a rheumatology background) looks after me but the local senior medical consultant in the hospital has a special interest in GCA/PMR and is happy to advise if there are any problems. The local rheumy was very nice - but I just didn't feel he listened to my unhappiness about being on Medrol and the side effects - plus it didn't seem to work. The GP has switched me to a special version of prednisone and it is great. I'm slowly losing weight (especially around my waist), the facial hair has gone and I feel much better all day on a much lower dose.

I don't think it matters who you see - what is important they must communicate and not be difficult and unapproachable. They also must be willing to listen to you and adapt if you don't react the way they want you to to the treatment. I don't care if "all my other patients are on 5mg after 2 months..." - I am ME, and I may not be the same. Please accept that Dr..."

Stop worrying and relax - it will get better. Honestly :-)

Eileen

Wise words, Eileen - thank you! I'm a slow learner, but I try to adjust to my new situation. Will see my GP the day after tomorrow and have printed out the guidelines.