an afternoon googling | Arthritis Information

 

I spent yesterday afternoon googling, and by following link after link
ended up deep in some medical sites I've never got to before. Maybe
some of the rest of you may be interested.

www.jbjs.org.uk/cgi/reprint/53-B/4/701

This is an article from 1971 on some research done by asking some pmr
sufferers the sort of questions we ask each other (age of onset,
experience before etc). THe research recognised that there are some
younger sufferers, (their youngest was early 40's) and clearly shows that
they are most likely to be misdiagnosed initially as their most frequent
path to the rheumatology clinic is via an orthopaedic referral ie their GP
had referred them elsewhere first . This was British research, so the
system of referrals may not be familiar to al of you.   Although it was old I
found it fascinating. Things haven't changed much!

Much more up to date, in fact current, is some research that is happening
in England. There seems to be a consultant rheumatologist attached to
one of the universities here who is very active. I came across a reference
to one article of his titled 'Polymyalgia Rheumatica:The mess we are now
in and what we need to do about it' - but couln't get at it as it was a
medics only site. However, by googling his name, I got 3 pages of links,
which were very interesting. He hasn't got answers, but at least someone
is looking for them. A few sites were locked, but a lot were open. If you
are interested I suggest you try googling

Professor Bhaskar Dasgupta Polymyalgia Rheumatica

I pressed the UK only button on google, which anyone outside the uk
won't have, but I would think a web based search will throw the same
references up (and maybe a few more).

Margaret

Thanks for that info...

Check out this link...

http://209.85.165.104/search?q=cache:QOeGOXKczt4J:www.clinic alanswers.nhs.uk/index.cfm%3Fquestion%3D2971+polymyalgia+rhe umatica+protocol&hl=en&ct=clnk&cd=8&gl=us

The question was about the effects of not treating PMR as compared to treating with the steriods....

Margaret,

Hooray for you Brits!!! At least now someone is doing something about PMR. Interesting that one of the articles stated that "Disease activity improved more rapidly in the steroid treated patients than placebo, but after 6 months no difference remained."  Does that mean that the prednisone starts to have less effect the longer one takes it?? It would almost seem that way after reading many of the posts on this forum.

Hope you are all doing better.

Reni
Hi Margaret, smartie and Reni, was good to read the new (different to the usual) info. I decided to take pred because of the literature that states that PMR treated with steroids is less likely to develop into GCA. However, that is the first I have seen that says that pred makes no difference to the process. And of course, they are all reliable sources, so it leaves one wondering what the heck is the best thing to do! And then I discovered that my gran (probably) had PMR and temporal arteritis, and that scared me into continuing to accept pred treatment. I think it is good to see as much info (even conflicting) as possible, even tho it confuses the issue. It does help us make an informed choice about our treatment. Which is what I am in the process of doing right now.

I also would be inclined to agree with the statement that early treatment for a shorter time makes a difference.  It seems to make sense. It seems that once people have been on pred for an extended period, it is harder and harder to taper and get off it, and the trouble is that  the effects of reducing pred (pred withdrawal) are exactly like PMR anyhow!  Pain in the arms, hips, shoulders, fatigue, bla bla bla ad nauseum. So how the **** are we supposed to know if we have pred withdrawal or PMR???!!!

I just saw my GP...This is what i am going to do...I started 10 days at 10 mg then went to 7.5 since about november 3rd - Tomorrow i am going to 5 mg for 10 days then OFF....no matter how I feel. I have another appointment in another city with top of the line, cutting edge, rhummy (we only have one rhummy in town and I am not going to go back...he would dismiss me anyway if i dont follow his instructions - my GP agreed! Small town stuff).....next month unless i can change it to sooner.  So I will be your guinna pig.

One thing he did say was that at 5 mg that is the amount your body puts out.... That was why he wanted to taper me to 5 before going off. I need to google that. I have read that mild PMR can be treated with non-steriodals - those are not good for you either if taken every day for years....but it is about weighing the options and trying to find out what demon you want to deal with.

I have read that low dose pred does not do anything for Giant Cell. If you start to have symptoms you get right away to dr. and then he puts on huge doses...... I am trying to weigh what the pred does to your body and what inflammation does to your body for extended times....Hard to find a doc that will level with you....I talked to this GP for a long time....I asked him if his wife or daughter had this - what would he want them to do.....and he said to get off pred. I also have concerns that there may be other things wrong that the pred is messing with in a bad way....My chiropracter and RMT want to do an MRI of my neck......I dont mind tests. 

Margaret, I was looking at one of your posts from July (I think it was in the thread I started with GCA in the title. You included some links to articles about how untreated PMR patients are more likely to develop GCA. As usual, there are 2 sides to these things, I guess we just have to decide which side we prefer to go with! I was 100% on the side of treating PMR with steroids to avoid complications, but now I have changed my mind. Maybe time will see me change it back again! Smartie, I asked my doc the same thing and he said if I were his sister he would want me to take the pred!

re the stopping, maybe better to go 5 for 5 days then down to 4 for a couple days, 3 for couple days, then 2 and 1 and then stop? Just a thought.


Hi Chico

yes, I've read quite a lot of evidence about being much more likely to
develop GCA if you don't take the pred - that's what convinced me to
take it in the first place. In a couple of the atricles I found on Sunday
there are also references to the possibility that the inflammation caused
by the pmr can result in weakening of the bones, and that pred prevents
the inflammmation. (but of course the pred itself can weaken the bones,
so it's a matter of balance)

I've not had any real side effects with pred. I've lost weight, my blood
pressure is lower than it's been for years, my eyes are ok, my bones are
ok and there is no sign of diabetes. Facial hair got worse, but thats gone
back to normal now,   I've had a more or less pain free year since I started
- I need more sleep, and have to make sure I don't get over tired. I'm
down from 40mg last december, to 2.5mg, and am taking the tapering
very slowly. I can't take NSAIDs because of asthma. I am an active 60
year old. (2 part time jobs, and a time consuming role in a national
charity organisation)

So I am content to to keep taking the pred, and to keep the tapering slow.

I do realise that I have been lucky with the minimum side effects, but was
a bit concerned that lots of the posts at the moment are about lets get
off as fast as we can - and that might not work for everyone - I remember
some posts from people who have said a fast taper brought on a flare
which resulted in having to go back up to a higher dose .

Margaret

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