Polymyalgia ; Help!

Hello Elisa..

Don't worry about what to write on this page. Just put what you are thinking/feeling. It helps just to share all your health worries with other sufferers. It also does you good to have a moan - I know I did in the past and the replies were extremely helpful.

Regarding your eye problems, I wouldn't hang around for an appointment I would get it checked out ASAP.

Just listen to your body and when you feel tired and completely drained of energy, don't fight it (like I did originally) just give in and in the end you will benefit.

Regards, Kathleen (tired lady)

Hello CarolK.. Good to hear you are slowly lowering your dosage of steroids. I have been on 5mg for several months and tried to lower the dose about a month ago but had to increase it again. My GP suggested I try 4mg which I will be doing next week and will let you know how I get on. He never mentioned reducing by 0.5mg - in fact I get much more useful information from yourselves than from any medical person I have seen. Hope I don't have another blip but time will tell.

Regards, Kathleen (tired lady)

Hi all! Elisa has replied to me with a private message so I'm going to copy and paste it here for you all to read and make your replies. I'm sure she won't mind. I'll also put in my response to her for your info too:

Hello Eileen

thank you so much for your warm welcome and the time you took to react to my introduction. It means a lot to me!

Getting all these new informations from people who have been and going through similar health concerns as I do makes me feel less lonely and frightened.

Thank you!

At the moment my biggest concern is my severe fluid retention, as I suffered already from lymph edema as a result of a double mastectomy. I am so puffed up with water that I look like a single freak show. My daughter worries that the water could get to the heart and lungs.

Has anyone had this same problem here?

Another concern is my dwindling eyesight in one eye and not to be able to see the eye clinic as i am too week to wait there for a day without appointment.

I am also really concerned about Giant cell Arthritis and would really like to know if anyone had that while being on Pred.

My Doctor never seems take my concerns serious. I actually feel like since I have turned 70 I am not of much concern any more and one expects me to drop of the roost.

I do not live in GB but in Australia and a visit to the Doc only lasts 6 min., that's all they have. It is just enough time to measure my blood pressure, write out a new prescription and to say not to worry.

One doctor even told me that I had to die of something.

Gee, I intend to live for another 20 years, at least. My Mum is still alive.

I used to be totally into natural medicine and that's how I cured the cancer. I refused Chemo and radiation but decided after almost 8 years in favour of a double mastectomy. The oncologist was in awe that the cancer had never spread.

So, you may imagine what a shock it was to have to take steroids now just to function, after trying to keep my body free of all the poison.

I am still looking for alternative ways to conquer this desease, but in the main time I accept that I have to take prednesolone.

Today I went down to 15mg and will now try to go down 1mg every week.

I have real problems walking as my knees feel like concrete and are hard and painful to move.

I will keep you posted on my development and hope you will do the same.

Has anyone an idea if PMR shortens our life?

Elisa

This is my reply which I have already sent to Elisa - who I assume must just be about to get up???

Hi Elisa - I suspected you didn't live in the UK which is a shame in that it does make it a bit more difficult to provide concrete suggestions. Where in Oz are you? I had a great holiday up and down the east coast when we came to an international meeting in Brisbane and we have a friend who lives there - her husband was the colleague but he died very suddenly last December.

Let's deal with things in order:

First of all - there is no evidence to show that well managed PMR has any bad effect on length of life - it just makes us feel older and feel as if we have lived a long time before our time (if you see what I mean)! You aren't going to shuffle of this mortal coil from PMR any time soon!

Second - don't, whatever you do, try to reduce the pred at that rate. All that will happen is that the symptoms will return as bad or worse than they were at first. The symptoms you are describing show that if it IS pmr that you have then it is by no means under control - your symptoms should be a good 70% better than without pred. If they aren't, it is possible that you have something else that is causing what is called polymyalgic syndrome and they need to find out what. PMR is what is called a "diagnosis of exclusion" - you rule out everything else, then say it is PMR if the patient responds well and quickly to a dose of 15-20mg of pred. Very few people are totally symptom-free on pred but it should make a big difference - then, of course, you have the pred side-effects.

Have you seen an optician? If you haven't, get your daughter to take you to a good one - one who does all the tests, not one who just dispenses spectacles from a prescription from someone else. They can also tell you if there is any sign of the sort of damage that GCA can cause. MrsO who also replied to your post started with PMR and it wasn't diagnosed for a year - by which time it had developed into GCA and she then got very high doses of pred to deal with that before embarking on her reduction programme - but she has been off pred altogether for some months now after about 4 or 5 years.

I'm telling you this because both I and another lady from our UK Northeast Support Group were quite concerned at your mentioning the loss of vision - do tell us exactly what it is like if you can - and with the rest of your history we didn't feel you have been looked after optimally.

I would suggest you take your daughter with you to the doctor - is she married? Have you a son maybe? It is not uncommon for many male doctors to be offhand with older women and having a male with you seems to concentrate their minds rather better. It's disgusting and he'd have an interesting interview with me - but there it is! Having someone a lot younger also helps with getting the message through to the doctor that a) there is something wrong, b) they are taking it seriously even if the doc isn't and c) they hear better and understand better often what is being said. If a doc told me I'd to die of "something" he might have found his head in his hands - and be told I'd rather go in my time thank you and not because he was too b%**£" lazy to do his job.

Take a note pad with your questions and symptoms etc and use it to remind you what to ask and to make a note of what you are told. They use jargon and speak fast - PMR itself causes mental fog (many autoimmune illnesses do) and steroids just add to the problem. I don't suppose you have the option of a different doctor? I know how to tell people in the UK what to do - and believe me, one of the most important things is to have at least a good GP. Have you been referred to a rheumatologist at the hospital? If your GP is useless at least a rheumy might help.

You can, by the way, always reply to us via the thread you asked your first question on - in fact that is better in that all of us will see it and chip in with an answer. We get a notice in our email to say there is a new post - and we do rush to look! In fact - I hope you don't mind me copying your post into the thread so others will be able to reply too - as I've already done it

Looking forward to hearing from you again

Eileen

Hello Elisa

I have just read your latest message and am totally shocked by the treatment you are receiving from your doctor. I totally agree with everything Eileen has said and would certainly get a second opinion/see another doctor/take someone authoratitive with you. Please don't just sit back and wait do something now.

Kind regards, tired lady (kathleen)

Hello again Elisa

Eileen has, as always, given you some very knowledgeable and wise advice in reply to your private message to her.

I just wanted to ask whether when you were first diagnosed you had been given blood tests (ESR and CRP) which showed high levels of inflammation? Some people with PMR don't have these raised markers in their blood but if you are someone who does, then it can be very helpful to have these tests repeated prior to each reduction in the dose to check whether the inflammation is under control. Also if you can see that the inflammation is under control, then you have the reassurance that you are not at high risk of GCA. If it is not under control then you aren't ready to reduce the dose.

I do hope you have acted on Eileen's advice and please do let us know how you are.

Hello everyone

I, too, have now received a private message from Elisa but it's apparent that she meant it for everyone to read so I'm copying it here with my reply. I'm sure she would love to hear from others.

Dear Mrs O,

I appreciate your concern and your time.

I had an blood test done a while ago and the Doctor was pleased with it.

My son, who is also a Doctor, but does not treat me, or advises me at all (what reallly upsets me), says that he thinks I am doing good and that what I tell him sounds normal and satisfying. (Not that he likes to hear about it).

He did say that cortison has not been kind to me, and that I don't even look like his mother any more. He said that laughing and while hugging me.

I know I look terrible and a lot of the 30 pounds I have put on are in my face. Nevertheless, the looks are the least of my worries at the moment.

I just need to know if it is possible to get Giant Cell Arthritis while on prednesolone.

I wonder if you or anyone who might read this knows about that, or about a case where it happened while the person was on prednesolone.

The only reason I am on prednesolone is the fear of GCA, otherwise I would have managed on morphine just to control the pain. This might sound weird to you, but after having had breast cancer twice I have to keep my immune system at the highest level not to get cancer again, and prednesolone destroys the immune system similar as Chemotherapy does (which I never had).

I noticed that after getting a Flu, that refused to go away. Before that I have not had a Flu or a Cold in ten years. After the last Flu that took 3 month to get over, I ended up with a dark, masculin voice.

I am very worried about all the side effects of prednelolone as my Doctor smiles them all away. Thank's God the terrible heart palpitration and chest pain has stopped and so has the excessive sweating and dizziness.

Now my major problem are the swollen limbs, vision-loss and awful general weakness. I will ring the eye clinic on Monday.

To sum it up, I am nevertheless very happy to get around and to look after myself, which I never expected to be able to do again, after the initial shock .

So, I am grateful for that, but still worried about GCA and the possibility that Cancer could reoccurr, even so I try not to go that way.

My best wishes to you and all who read my message!

Elisa

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Hello Elisa

In answer to your question, yes it is possible to get GCA whilst on Prednisolone for PMR, BUT as you are someone who had raised blood test markers of inflammation at diagnosis and you say your Dr is pleased with recent blood test results, then it sounds as though your steroid dose is controlling the inflammation and therefore should be protecting you from the risk of GCA. I have had GCA, probably succumbing as I suffered from PMR for a year without diagnosis and therefore without treatment to control the inflammation so I was at high risk.

It would be helpful if your described exactly what you are feeling with regard to your eyes - whether you have actually lost vision or whether you are finding your vision blurred, or you are having a problem focusing your eyes - certainly the latter can be a side effect of the steroids.

However, it is vital that you get the back of your eyes checked out at the eye clinic tomorrow, mentioning to them that you are on steroids for PMR.

Elisa, although I am quite happy for you to send me a private message, from your post it is apparent that you mean others to read it so I will copy it to the right thread. To share your posts with others you simply type your message in the box as normal and go to the green box further down the page and click on 'Post Reply'. You don't need to click on the red 'message' box under our names in the left hand column unless you really do wish to send a private message to just that person.

Good luck tomorrow and do let us know how you get on.

Dear Mrs O and fellow battlers!

Thank you for your helpful and compassionate responses which are enriching my life.

I could not go to the Dr or eye clinic today as I got washed out by the rain. I live in the country and it takes an hour to get into town. Anyway I made a new appointment with the Doc on Wed. and will just drop into the eye clinic afterwards if he thinks I should.

Mrs O, my vision loss in my right eye could be described as 'blurry' I suppose. I just see double as clear with my left eye. Together I still see well. It's just that I had extremely good eyesight before, could even read without glasses in good light. Now looking through the left eye is like someone has dimmed the light.

I am upset that I can still get GCA when on prednisolone as blood tests are only taken every few month and anything can happen in between, can't it?

I feel like all the 10 years of fighting cancer by keeping my body free of poisons have been boycotted by this steroids which are known to destroy the immune system. But what is the alternative?

I guess I just have to trust in God, which has worked for me so far.

Anyway, I do appreciate your good advise as God works in mysterious ways. I will just keep my eyes, ears and mind open .

Love and Light

Elisa

Elisa

You say that you will just drop into the eye clinic after seeing the Doc on Wed, if he thinks you should. Although we are not medics, some of us have a lot of personal experience with PMR/GCA and steroids and when someone says they are losing vision, we immediately feel great concern for them, as you will have gathered in our answers to your questions in your posts. You would be wise to drop into the eye clinic as soon as possible, whatever the Doc says.

Also on a dose of around 16mgs, you should be having blood tests much more frequently than every few months to ensure that the present dose is keeping the inflammation under control. At the dose you are on now, I was having monthly blood tests. Preferably, you should have a blood test before each reduction.

I do wish you well and do let us know how you get on.

Good morning,

I am 69, and was diagnosed with PMR last December. My doctor started me on 15mg of prednisolone. I am now on 12mg, and have had no side effects apart from feeling very tired. I also had a fall last week leaving me with sore ribs on my left side. I have no energy, and just feel like sitting all day, but know that I must start to move myself or I will get used to this way of living on a daily basis.

My intentions are great each day, but looking back at the end of the day I am so disappointed with myself.

Have anyone else felt like this?

Kind regards,

Grace