On this page, people with
Polymyalgia Rheumatic and Giant Cell Arteritis relate their experiences.
If you have a PMR-GCA story that you'd like to share, then please email it
to the address below:
Story One
The symptoms appeared suddenly. One morning I couldn’t get out of bed. I had
generalised acute pain. G.P. called and said I had Reactive Generalised Arthritis.
I spent the next year taking anti-inflammatory drugs orally.
I read a booklet on PMR and demanded a blood test. Within 48 hours I was given
oral steroids. I spent a year misdiagnosed and to date a further 2 years receiving
correct treatment.
My initial concern was the suffering due to misdiagnosis by the GP.
My second concern is the lack of awareness of this long term meical condition
in the medical profession.
My third concern was coping with the condition.
I could find no information as to how much research was being done either
nationally or in Scoland.
As I already have Dystonia, another long term medical condition, I am having
a challenging time.
M.D. Dundee.
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Story
Two
PMR hit me suddenly, waking up one morning full of aches and pains and flu-like
symptoms. These continued along with severe stiffness in my joints.
Not wanting to trouble the Doctor, and as we were in the middle of a stressful
house move, I carried on and finally went for help to a physiotherapist who,
after several visits (no improvement), informed me she could do no more.
I then went to see a Doctor who told me I had osteoarthritis and as I was
about to go on a cruise to warmer climes “the sun will do you good”.
The holiday was a disaster and ended up with me being in agony and had to
use a wheelchair to get me through the airport.
Same day saw a different Doctor who was most sympathetic, ordered blood tests
and arranged steroids once the results came to light.
Symptoms improved then but over three and a half years there have been many
ups and downs and unpleasant side effects from the steroids. However I no
longer take steroids so there is light at the end of the tunnel!
S.P. Dundee.
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Story Three
On Mother’s Day 12th March 2007, my 38 year old son and his friend were the
victims of an unprovoked assault when their heads were used as footballs and
they were left unconscious in the gutter. A week later I spent 5 days extremely
cold, wearing as many clothes as possible, closing all the windows and turning
up the heating. My blood running cold? I am convinced that, for me, this was
one of the triggers for PMR & GCA.
For the next 2 months I had spells of feeling tired and out of sorts but put
it down to doing too much. In the middle of May I was tidying up after breakfast
and said to my husband, “I’ll have to go and lie down, I don’t feel very well”.
I thought I had flu with extremely sore bones, severe stiffness, a tube of
pain through my head, feeling extremely cold in temperatures of 90° and a
slight fever. I was on holiday in France and after 3 weeks I went to the Doctor
who ordered a blood test and I saw a consultant in a fortnight who diagnosed
PMR & GCA right away. As usual the effect of steroid treatment was miraculous
as far as the stiffness and inner thermostat were concerned.
What I found most difficult was coming to terms with sudden loss of energy
and unreasonable fatigue. I could walk for a few yards at a reasonable speed
and then – nothing! I had to park the car on the same side of the road as
the shop I wanted to visit because I couldn’t get across the road in time
for the traffic. Living was like ploughing through a mental and physical fog
wearing heavy boots, and this went on for years.
At the end of September 2003 I came off prednisolone, thought I was cured,
and didn’t pay attention to 5 symptoms that appeared over the next 9 months.
In July 2004 I went to the doctor thinking I had a chill in the bladder, another
blood test which was as bad as the initial one in 2001. The unreasonable fatigue
has been the worst symptom for me but since mid-December 2007 my stamina has
returned. I am now down to 1mg prednisolone per day and hope the end is in
sight. I can function for a whole day for the first time in nearly 7 years.
There is light at the end of long tunnels.
I.J.M. Dundee.
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Story Four
I felt puzzled when diagnosed with GCA. I had been feeling a bit off and suffering
from intermittent headaches and toothache, but I put it down to doing too
much and ignored what was going on. The headaches became worse and every bone
in my face was aching, I could not chew and wanted to pull the front of my
face off.
I decided to visit my GP - I did and he decided to refer to me for a scan.
However I had to go back to him within a week as I was worse than ever. I
remembered my Mother had had PMR and the symptoms seemed similar. I discussed
this with the GP and he ordered a blood test immediately before I left the
surgery.
My GP rang at 7.45am and asked me to come in straightaway. By 10.30pm I was
on a dose of 60mg and within 6 hours all the symptoms had disappeared. I could
see again, the headache went away and so did all the other aches and pains.
Marvellous. The steroid dosage was reduced very quickly down to 40mg then
gradually down to 20mg by November 2007.
I was back at the GPs surgery on the Monday at 9am - first appointment - and
it was then that they told me how close I had come to losing my sight and
that I had GCA not PMR. I broke down on the Friday - a week on a roller coaster
had taken its toll. By the way, I call it Giant thingy and polywotsit.
I suppose in a way I was so grateful that my sight had been saved that the
complications that have followed pale into insignificance when I imagine what
could have happened. I could be blind. There is no reversal.
Problems have arisen with the side effects of the steroids, to the stage where
I am unable to walk more than two car lengths because of consistent and sometimes
excruciating back pain, now have a Blue Badge Parking Disc , Attendance Allowance,
weight gain (which does not help), peach fuzz and triple chins.
My own GP decided after about six weeks - as the back pain got worse and I
started to ache in hands and knees that I probably had PMR as well. However
the Consultant Rheumatologist disagreed as I have never had the classic problem
of stiffness in the morning and the inability to get out of bed. I agree with
the Consultant and my GP has agreed that we will only do Blood Tests bi-monthly
now as the Consultant says the sed rate can confuse the issue.
My GP insisted that the Rheumatologist sent me for a bone scan (after six
months of being on steroids). The result is that I have very good bone density
for my age, well within the normal parameters. He has also worked out a programme
for the reduction of steroids ongoing until September 2009. This reduction
plan depends on the symptoms of GCA not re-occurring. This month I am down
to 12.5mg and on the 1st February reduce to 10mg, thereafter it is reduced
my 1mg per month until January next year when I should be down to 3mg - then
it is a three monthly reduction plan, ending up with 1mg per day. It may be
that I shall have to take 1mg per day for the rest of my life - but we are
all keeping our fingers crossed on that one.
Every article that I have read insists that a slow reduction of steroids is
the best way of coming off them completely. I know people get impatient as
they hate the side effects, especially the weight gain - but I don't mind
- I do not want to be blind and am willing to put up with every other side
effect going.
Everyone is in the dark - including the Medical Profession, as there is no
known cause and no known cure.
As far as I can gather, steroids make your own production system of cortisol/cortisone
shut down and that is what has caused the back pain. The hope is that as the
reduction in the steroid takes place the glands (adrenal?) will kick in again
and as they get working the back pain will reduce and enable me to walk once
more.
I see my GP monthly now and the Consultant next May - unless anything untoward
happens and have had to promise them that if anything happens at the weekends
I will immediately go to the nearest A&E department.
I carry my blue steroid card wherever I go in fact I have three or four in
different handbags and one in the car. I still get very very tired and feel
lethargic, some days my head is fuzzy and I just have to retreat - but I realise
this is all side-effects and I just have to get on with it as best I can or
as another sufferer puts it 'go with the flow'.
Everyone is in the dark - including the Medical Profession, as there is no
known cause and no known cure.
I would add that without the people I met on the Internet, I would have been
driven up the wall. Self Help/Support Groups are very necessary, even just
for a chat on the 'phone', an email with 'how you are at your wits end' or
a cup of tea , coffee, cake, a moan - just someone who understands what you
are going through is a blessing.
If anyone wants to get in touch, feel free to email pmrfighters@yahoo.co.uk
or Tel 0191 411 1138.
M.R.S. North East England.
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Story Five
I have had this condition for almost 2 years, though I was only diagnosed
18 months ago. My first reaction was that I was going to beat it. I tried
to continue with my life as before and became totally exhausted and depressed.
One year on I realized that I had done everything in my power, had swallowed
dozens of potions, followed up every bit of advice but the illness was no
better. In other words PMR had beaten me.
Now I go with the flow a bit more. Accept that this illness, though not life
threatening, is life changing and one day will burn itself out. I pace myself,
I lie down when I'm fatigued, no longer try to battle through it. My pain
moves about a bit - sometimes in the hands and arms, sometimes in the thighs
and buttocks, or shoulders etc. I've stopped asking why or what did I do yesterday
to cause this? There is no rhyme or reason to it - it just is.
We need to find the fine line between not giving in to PMR and not overdoing
things. Everyone is different and it’s not easy. Energy is in very limited
supply. I do something every day to keep my muscles from wasting and my mind
alert. I find the best form of physical exercise is swimming/aquafit. It loosens
up the muscles in a gentle way and in the water you almost feel like you have
regained control of your body. I also walk at least 2 miles (on the flat)
about twice per week - jokingly I say I'm going for a waddle as that's how
my gait has become!
PMR appears to strike people who have lead both physically and mentally active
lives and this makes it even more difficult and frustrating to deal with.
I find I drop things, bump my head, knees, elbows, lose concentration, lose
my sense of urgency, am less tolerant generally, I swear a lot - didn't used
to. I never know if it's the PMR or the side effects of the steroids. Difficult
to know where one ends and the other begins. The only thing we can do is keep
the chin up and hope.
P.H. North East England.
Story Six
My story began on 6th November 2007. I had been feeling strange for a while,
and felt I had flu but nothing definite. I went to the doctor and some blood
tests were taken. Later that week I hobbled into the doctor's with gout, something
I had never had before.
On the 27th November I returned to the doctor with severe head pains and my eyes were sensitive. She looked at the bloods and my ESR’s were 95 so after an examination I was sent to the medical emergency day centre for further tests. The conclusion being that I might have a sleep problem and the raised ESR was due to gout and that I should return later to undergo some tests, he did in all fairness order a CT & US which did not materialise and only the CT was done later . The next day the pain was worse and I was given an antidepressant to help the pain by a locum GP.
After this I suffered pain on a daily bases and the pain became worse, it was like fireworks in my head at times and I was worried as I knew this was not normal or just a simple type of pain. I went back again and again and finally asked to pay to see a consultant, I had to fight for this as the GP said I should wait to see the first consultant (a chest man) in February 2008. In the meantime after weeks I was given 20mg of steroids on Christmas Eve as the GP finally admitted it might be dangerous.
I saw the first consultant in January at my own expense. He prescribed 15mg of steroids to be reduced and within 3 months I would be off them, the dose for PMR which I had not got as it was agreed that I had GCA The examination consisted of looking at the pulse on my head and taking a look at the bloods taken in November. Nothing more was done except taking notes. In the letter back to my GP and copy to me it stated that “she looked well” and not to rush too soon to get off the steroids. Well his instructions only took me until March 2008 just a few weeks after and he assured me all would get better.
Of course, it did not. and I then asked the GP to refer me for a second opinion, which I also paid for, and finally saw another consultant who said he felt I still had active GCA and put me on to 40mg per day. This is coming down now but I have some hearing, sinus and neck problems, and Cushing Syndrome with the triple chin and buffalo hump on the back of my neck. The not being able to get around the supermarket syndrome. Cramp in my hands and legs and all those nasty side effects of the steroids.
However, I now feel more positive and able to cope with the future although I am still not happy with some pains running around in my head but I do think that lots of these problems are the drug related . The loss of ones good health can be a real blow not only to yourself but your husband or family. One year you're running around and then the next year you have lots of mountains to climb and in poor health. I feel if only my condition had been recognised earlier, the treatment would have been the same, but I would have been in better health to cope with the steroids and the reduced dose would be much lower by now.
Finding people with the same condition has meant a lot to me as everyone else you tell looks blank when you say what you have. Knowing someone else who can understand the pain and the steroid side effects does help. I have now invested in some Acupuncture for a few weeks to see if this can help, recommended by the GP. We are all game for anything that might improve the illness so its all worth a try. I don't feel so on my own now and there is light at the end of the tunnel even if it might be a little way off.
Today maybe good and tomorrow not so good, but there isn't an alternative yet so we have to keep positive and I am determined to get better so that the retirement my husband and I looked forward to will come true. I know there is no support groups in my area and am grateful for the help I have received. If anyone is interested in the Powys/Shropshire part of the world I would like to hear from them.
S.D.
mikesandy@btinternet.com
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