Contributors' Brief Histories
Posted , 46 users are following.
A thread for users to put a precis of their story.
EMIS Moderator
9 likes, 200 replies
Posted , 46 users are following.
A thread for users to put a precis of their story.
EMIS Moderator
9 likes, 200 replies
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Snaggler
Posted
I was diagnosed with PMR on November 10, 2011. My GP originally started me on 10 mg. I was on that a week when I went back to her with the nagging head pain and vision problems on the 18th. Then on the 19th of November I started taking 50 mg of prednisone. It has made a huge difference. I can get out of bed without crawling out. I can walk although my hips are still grinding inside.
I first noticed a problem shortly after I started working for a store where I have to lift heavy boxes on a regular basis. I fell in April and thought I had bruised my hip. It was not getting better so my husband nagged me to see a doctor. Went to a treatment center where he ordered x-rays. The x-rays showed moderate arthritis but nobody knew what kind. I went on for a few more weeks like that before making an appointment with my doctor with a very sore foot. I explained that something more has to be going on with me because I am in constant pain.
She then ordered several blood tests. C Reactive protein was high. Low vitamin D Hydroxy. RF indetermnate. CCP <16 Negative and ANA Negative.
The RF tests are not positive yet the x-rays show arthritis in the hips and feet.
I was diagnosed with CLL (chronic lympatic leukemia) in 1995. It has been a nuisance but I have not had any official kemo treatments. I have had anemia on several occasions with it but other then that it has been on the back burner waiting to strike out some day.
I am on a WAITING list for a Rhuemologist. Here in British Columbia I have spoken to others who had to wait up to six months to see one for a 10 minute appointment. Ten minutes is not alot of time to solve big issues with this disease. I am so frustrated to have to wait for so long. I am going to see my GP tomorrow and hopefully get the answers I need for my employers. After that, who knows. I sure have a hard time lifting stuff now. It is too EASY to over do it.
Glad I found this place it has been and will remain to be a wealth of information.
masonc
Posted
My GCA experience has been exciting, a great hobby, and -- on the whole -- positive.
My story telling my experience -- and what I've learned from others and from medical literature is on my web site and detailed in a 45 -page book posted there: frontal-lobe.info/gca/gca.html
Needless to say, I'm not trained in medicine and I only report what I have experienced and learned.
EMIS moderator: I could find no instruction here regarding links. The linked site and book have strong admonitions regarding medical responsibility.
Best wishes for all with GCA and or PMR. . . . . . MasonAClark
Danrower masonc
Posted
migs
Posted
mrs_k
Posted
Can I suggest you go to www.pmr-gca-northeast.org.uk and read up on PMR on that website.
Then come back here and post on a thread with any questions you may have. Someone will always answer you.
Also on this site, there is a list of Support Organisations specifically for PMR & GCA.
masonc
Posted
two controversies in the treatment of GCA.
Find it atyoutu.be/2PfU7lHhRKA
or on my GCA web page: [url=frontal-lobe.info/gca/gca.html#video]frontal-lobe.info/gca/gca.html#video[/url]
Comments and criticisms are welcome, please.
masonc Mason Clark
magi1
Posted
I read that many of you have problems with your doctor/specialist - I do not - he and I work together closely with dosage/sid effects, etc. I know I am lucky. During the 1st 2 weeks he monitored me closely also advising me to investigate all the sites that I could on the Net to gain a better understanding of my condition, which I did. He told me to expect to be taking the medication for at least 18mths.
One of the side effects I had was mania - which was not unpleasant for me - but a bit of a worry for those about me as I thought and spoke at 100 words a minute! However the pain did not lessen to a comfortable level and the dose was increased to 15kg a day. This proved to be adeaquate but other side effects came into the game - mainly 'thin skin' - giving me bright red bruises on my arms when I knocked them - looks disgusting but better than pain. Other sid effects were increased appetite and slight weight increase (not a problem for me!), also sleep disturbance, sleeping two hours at a time, then up and awake for 1/2 hour (again not much of a problem as I am fully retired and can sleep in two bouts all day if I want). There is also an increase in night foot cramps which I have had for many years.
I have monthly consultaions with my doctor - with me keeping a jounal of any new side effects I have since I started taking the medication - and being ot the impatient sort was keen to lower my dosage in Feb this year.
We agreed that I could try coming down to 12.1/2 mg per day with the improviso that I could increase back up to 15 mg if required. After two weeks of going well I had, what I think you refer to as 'flashes' and needed to revert to 15mg a day for two weeks. I have just re-started lowering my dosage to 12.1/2 mg a day a couple of days ago and am so far OK.
However I see from some of your posts that this may be too great a reduction at one time. Would appreciate your advice on this matter, as my right nostil has start to drip franatically for the first 1/2 hr each day when I take my 1st dose ( to the point I need to stuff a tissue in my nostil when feeding my chooks!).
I would also just like to talk with people who appreciate what PMR is about - as friends and family have no idea what he pain is like without the medication.
mrs_k
Posted
You have come to the write place for information and someone will be along shortly to answer you. However if you google pmr-gca-northeast..org.uk you will find a wealth of information on there and also a link to another forum.
gary49
Posted
Been lurking here these past four weeks reading and educating myself about pmr . Six weeks ago I had two very tender points ( no bruising or marks but very sore to touch ???) one on the top of my head and one on my shoulder as well as a unwell cold like feeling coming on . My general reaction to an onset of a cold is to reach for day nurse and soldier on . I done this and the cold like symptoms subsided while I was taking the day nurse but the tender touch didn't .
A couple of days later I developed an aching generally in my wrists , elbows , thighs , ankles and feet and was expecting to get full blown flu . Suddenly without warning the pain was worse , aching through the night in bed , night sweats really bad , fatigued like never before and hardly any appetite .
After a week visited the doctors and was advised I had a virus and to take ibrprofen with him telling me it
Could take up to another week for it to go ... The ibrufron did ease it slightly but I could tell within myself
Something was not right so on the 14 th day was back in docs who prescribed stronger painkillers and a
Blood test . Three days later the results came back ....I had an esr of 84 ! ....erm ...what's that i ask ? And so started my journey . Was booked a rheumy on the nhs for a month later but I wasn't happy waiting for a
Month stressing out so paid to see a consultant .
After examination and questions he tells me he thinks it's pmr ( which my gp had said he suspected )
I queried the criteria for it as I'm only 49 and hadn't really been affected from the hips above ,mainly the legs and arms but was told it's never textbook . So started on the steroids 30 mg which have definitely eased it
Immensely and I've started to return slightly back to normality . I sleep pretty good now , ache of a morning a bit and wait till the steroids kick in and have a hot shower as that helps ....as for work I've had to think of readjusting my workload as it's always been physically strenous and I'm finding myself tiring if I over do things in the day but hopefully one day it will go .
I'm delighted to have found this forum and it's helped no end reading peoples contributions and advice ....
And hope any queries I have will be answered .
Best wishes to you all Gary
EileenH
Posted
If you do, can I suggest you start a new discussion - look at the top of the page at the left hand side where you will find a green blob next to "Start a new discussion" (above the Contributors brief histories). Then we can have a proper talk about it with everything in the same place!
cheers, Eileen
MrsO-UK_Surrey
Posted
I'm glad to hear that you have started to feel much better especially as you are of working age - we always feel in awe of those people who have to work with this painful and debilitating condition. Hopefully you have considerate and caring employers, although it's fair to say that no-one really understands the limitations of PMR unless they've experienced it.
Lots of good luck wishes for a smooth journey to recovery.
jill59
Posted
I had attended the GP two weeks ago with loads of vague symptoms, had taken too much Brufen for the pain, then developed gastritis/ possible ulcer so she put me on Omeprazole for that, after doing a huge raft of bloods, results came back and all have indicated PMR. Immediately started on 40 mg steroids yesterday. Came home terrified and Googling through tears started to find out what I can. Was horrified to read about the intense scalp sensations and being unable brush my hair. I have not even mentioned that to the GP as I thought she would think I was loopy. They have been happening for about four months I think.
I am going back next Friday, does anyone think I should let her know before about the scalp thing seeing as I have now started on the steroids already.
When will I begin to feel a wee bit better ? Will I get a moon face? To be honest I'm scared stiff as much about the diagnosis as the drugs.
I am so glad I have found the forum, before this time yesterday I didn't even know PMR existed and now I seem to be in the club nobody wants to be in.
I just wish I knew what was going to happen next.
Jill
MrsO-UK_Surrey
Posted
People diagnosed with 'just' PMR are usually started on a dose of 15 or 20mgs of Prednisolone. The higher doses of between 40-60mg are usually reserved for those suffering from a linked condition called Giant Cell Arteritis (GCA). Even though you didn't mention scalp tenderness to your GP, you may have mentioned other symptoms (head pain, eye symptoms perhaps?) that led her to suspect you might have GCA and she is treating you accordingly and wisely to protect your eyesight.
As for when you can expect to feel a bit better, if the diagnosis is correct you should find that you have around 75% improvement in your symptoms within just a few days. Following my diagnosis of PMR and GCA, I was prescribed 40mg of Prednisolone and experienced amazing relief within just hours.
It's normal to feel "scared stiff about both the diagnosis and the drugs" - we have all been through the same feelings. Just remember that it is an illness from which you will recover unlike some other life-long illnesses. What no-one knows is how long that process will take for any individual. Some recover in just 18 months to 2 years, others take a few years longer whilst a very few stay on a tiny maintenance dose of steroids indefinitely. It took 5+ years for my PMR/GCA to go into remission.
It is important to take special care of yourself and not overdo things, especially in the early stages when the steroids are doing their job of getting control of the inflammation. As for the moon face, that also affects some more than others, but as the steroid dose is reduced that will disappear.
I hope that is of some help. I don't want to bombard you with information but leave it to you to come and ask the questions as and when they arise and one of us will try to answer from our vast experience with this condition.
There are support groups dotted around the country and if you let us know roughly whereabouts you live, then we can point you in the right direction if there is one near you.
I hope you feel much better soon - good luck!
magi1
Posted
Understand your concern 're your PMR - but there are some good side effects - not many I grant you - check out wikipedia site - they do a good coverage of it.
My advice to you is to keep a diary of your side effects - include your sclap condition and take the list with you to your doctor. Go through this list with her and tell her you are looking for info on the Net too. Show her you want to work with her and ask for an appontment every 6 weeks to keep in up to date. I know docs are busy people but they are busy with patients of which you are one.
I have been told by my doc that the condition lasts between 2 to 3 yrs BUT many people have already had it for maybe months before being diagnosed with only slight pain - I thought I had sciatica when I went to see my doc - his 1st question was 'does the pain come and go or is it permanent?' my answer that it was permanent was for him an indication that it was PMR and so he could identify it through the tests quite quickly.
You are a much bigger dose per day than me - I am only on 15mg per day and have been for almost 6 mths - and I am already starting to look at reducing my daily intake of the meds - not fond of the idea of filling up my body with drugs! did have one go at reducing down to 12.5 per day last month - didn't work - so now looking to go slower - just 1mg per day next month. if you are on Prednisone they make 1mg tabs as well as the larger ones.
I also take my tabs three times a day at approx 8 hr intervals - taking the last one about an hour before I go to bed - this helps with pain 1st thing in the morning when it can be at its worst.
My doc has also told me not to reduce intake in the winter months as this can cause problems with other infections around during these months.
good luck with it all - and it will probably take a few days - maybe a week to take effect.
magi (from Oz)
EileenH
Posted
First of all magi:
You may be finding it difficult to reduce from 15mg to 12.5 not just because it is a big step but also it is actually very unusual to take the pred in 3 divided doses in PMR. The normal regimen in PMR all over the world is the total dose as early as possible in the morning - lots of people wake early and take it with a yoghurt or a sandwich they have left out if they can't face getting to the frig to get a snack and cup of tea that early. Then they go back to bed for an hour or two to allow the pred to do its job.
The advantage of taking it in one big dollop is that it has a far better antiinflammatory effect if the blood level is higher - and the result lasts for between at least 12 and up to 36 hours in most people so will work until you go to bed so the stiffness, if any, is mostly overnight. Occasionally patients take it as 2/3 in the morning and 1/3 at night to control the morning stiffness better - but you still have a relatively large dose once a day. It also reduces the incidence of side effects overall. I am on a special delayed release form of pred called Lodotra, usually used in rheumatoid arthritis, which is taken at 10pm and does away with the morning stiffness. Trials are being carried out in the UK for using it for PMR and it is already often used in Germany for PMR. I live in northern Italy - I have it here because the other available pred forms here do nothing for me at all even at 20mg/day and the side-effects were awful for me. I have none with this.
Jill 59 - stop panicking ! I know it is easy to say but can I suggest you go to the PMR and GCA Northeast support group site (Google that or look in the pinned section at the top of the list of threads on this forum where there is a link from here). To get to that go to the top of this page and click on the bit that says polymyalgia rheumatica and GCA (in red) and that shows you all the threads that there are on here. They give you a lot of info if you read them, the Northeast site has all the medically founded info and experiences you could want as well as a link to their forum which is much more active than this one and provides loads of info about dealing with PMR and GCA from people who have had it - over 600 members in total though a lot don't post regularly of course.
Not everyone gets horrid side effects with pred, no-one gets all the 82 listed and even weight gain can be restricted with care and you won't be on that high dose forever. In fact, the description you give does sound a bit GCA-ish and just in the last couple of days a lady in her early 50s with GCA not quite 2 years ago has posted her story on the forum having been off pred altogether for a few months and being back at work. A good and encouraging read I promise you.
Now you've found your way here, keep coming back but can I suggest you start a new thread if you have a different question? It doesn't matter too much but this thread is meant to be for people to tell their stories - and once a conversation gets going it can go in all sorts of directions and the stories get lost :[ We're really not desperately disciplined and talk about anything to do with PMR, life and the universe if it is relevant!
In fact - Mr Moderator, sir, is it possible to take these last few posts over to a new thread? It would be a shame to lose these too!
cheers for now,
Eileen