Another New Member to this exclusive club
Posted , 4 users are following.
First can I say what a wonderful support this site has been to me over the last few months. I thought it was time I joined in with my story!
Looking back, I think I have been suffering from PMR for some time but had put the pains and general lack of fitness and mobility to age. Then in March, after a particularly stressful year, I finally retired at 64. One evening at the end of the month, I felt as if a ton of bricks had fallen on my head, mainly over my right eye. As one of those lucky people who can honestly say I have hardly ever had a headache in my life, it was a bit of a shock! But it was at the time when a lot of people around me were suffering from a virus which made them feel giddy and have the head ache so I thought no more of it.
After a few days, I went to the surgery and saw a locum who prescribed pain killers. The symptons got worse and worse, and I remember the following month as a long black tunnel, when I lost weight, had a dry cough, had no appetite, and just wanted to sleep. I went back twice more over the next three weeks and explained the symptoms only to be given stronger and stronger painkillers.
Then I went to my wonderful osteo lady to try to get some relief from my knotted and rigid neck and shoulders. She wouldn't touch me and told me to go back to my GP and insist on blood tests. The GP (grudgingly) agreed to do the tests and the next day, I got a call telling my to come to the surgery immediately. My score was 95, and I was immediately put on 60mg of steroids. The next day was bliss!
I am now down to 20mg but my GP is concerned that it has been 6 months on such a high dose as my SED score has gone back up to 50. I have an appointment (my first) with a Rheum Consultant next week, in the hope of getting me on to Metholextrate. I think she is a bit out of her depth with my problem so it will be good to have some back up.
On reading other stories, I am horrified to think I might have been so close to losing my sight.
Has anyone else had any experience of Metholextrate? I would be interested to know about the switch over from steroids.
PatC
0 likes, 8 replies
mrs_k
Posted
One question (well so far) were you diagnosed with GCA as well as PMR as 60mg/40mg is normally used as a starter for GCA. 20/15mg for PMR.
Go to www.pmr-gca-northeast.org.uk and under Useful Medical Information read the British Society of Rheumatogolists Guidelines for both PMR and GCA. In fact print them off - you can always give a copy to your GP. There is also an article on Methotextrate on the same page.
Under 'Our Stories' read Margaret W's experience with Methotextrate. We also have a DVD on both PMR and GCA.
The ESR and CRP tests are only guidelines, some people never have either raised, but nearly all GCA people have high CRP.
I am pleased you have been referred, although rather late, to a Rheumatologist. You should have been referred earlier.
Knowledge is power.
I am so sorry you have joined what is not such an an Exclusive Club as you think.
As the baby boomers are hitting their 50's and 60's it is on the rise and as quite a few of us are computer literate - we all know more than our parents did. I stand in aware of Tim Berners Lee and am pleased his Mother had him.
Good luck in this strange journey you have embarked on and keep us informed.
Lizzie_Ellen
Posted
Thank goodness your 'wonderful osteo lady' was wise enough to send you straight to the Doctor :doctor: . Do hope all goes well for you. I can't help you with the Metholextrate but I know there are several people on this site who have or still do take it and you will get sound advice. Also, as always, Mrs K has sent you in the right direction - what would we do without her!! Some Doctors seem very reluctant to send you for blood tests, even when the symptoms don't go away, thank goodness your's did (though grudgingly!!).
Take Care,
Lizzie Ellen
Jill48
Posted
Since there's no known cause for PMR/GCA it's interesting to see the overlaps between your experience and mine (See [i:c8529def4f]I'm new - not on steroids[/i:c8529def4f]). It happened at the same time, both of us having had previous hints of it, followed by a very stressful time. Mine was moving house three times in thee years. Then the dry persistent cough, loss of weight, disinterest in food. I just couldn't eat various foods. I threw out heaps of pre-cooked meat dishes which I'd frozen, couldn't stomach fish, the only things I could manage were fruit and vegetables, nuts and seeds, eggs, olive oil and yoghurt.
These patterns which are easier to see on a huge forum like this, might be what eventually leads to us finding the cause. I wonder how many other people out there have had similar lead ups?
Good luck with getting the metatrexate and steroids sorted out. We each seem to have different tolerances don't we.
Jill
mrs_k
Posted
There is an International Survey in progress and also a Sympomatrix which PMR and GCA patients are encouraged to fill in.
The Sympomatrix is being conducted by the Marijke Foundation in the Netherlands and the International Survey by the USA and UK.
Both of these organisations have links from the PMR&GCA UK North East website. The more patients that fill them in the better.
Worth ten minutes of anybodies time.
bEE_JAY_PEE
Posted
Reading your post was like reading about myself. I hope you are feeling much better now. Three years ago, the girl I worked with was made redundant, and I had my workload increased considerably, much stress.!
I started to get terrible headache, pain over the temple and my left eye playing up. Went three times to the Doctor, finally asked to be sent to a specialist. Dr eventually arranged blood tests- then rang me at home would I go in immediatley.
Turned out I had Giant Cell Arteritis, and I very nearly lost my sight. I was prescribed 50 m.g. Prednisolone, and in 18 hours the pain had virtually disapeared.
Since then I have had flare ups of PMR, so my dosage is up and down, however I am just so relieved I still have my sight.
Had to retire 2 years ago. As for now I have learned not to fight this PMR, and just go with the flow. When I asked my GP why he hadnt sent me for blood tests earlier he said\" You dont fit the pattern, usually older ladies get this condition\". So there we are.
I hope you will enjoy this site as much as I do. On horrible days it just cheers me up knowing others are out there with the same problems, and we are all trying to enjoy life as best we can.
Well I'm off on holiday to Oban tomorrow, I hope they have some sunshine left in the weather Bank.
Brenda
mrs_k
Posted
Where in North Yorkshire - within striking distance of Middlesbrough?
Can I ask the daft question, do you have the classic symptoms of PMR as well as the GCA?
Me, off to Scotland Sunday so with two Northerners up there, the sun will surely shine.
Jill48
Posted
bEE_JAY_PEE
Posted
I live in a village near Thirsk. You were asking me about GCA and PMR.
I have had GCA only once (thank god), since then I have had several flare-ups of PMR. Didn't know what was wrong the first time I got PMR, my G.P said it was quite common to develop PMR after having GCA.
However you just get on with things dont you. Must tell you I can walk much further now I have a set of Nordic Poles. I tie the dogs lead to one and the combination of poles and the dog pulling me along, I can really stride out on a good day. The neighbours get a good laugh as well.
Brenda