Hello - New to PMR

Hi Grannyshiraz,

Sorry to hear you having so much pain. You just posted today and I wonder if you just started taking the 20 mg of Pred today... or a few days ago. The reason I ask is that a PMR diagnosis is not definitive with blood test results. If the Dr or consultant says your blood tests should muscle inflammation (ESR was high; CRP high), and other tests he/she may have done were normal, they suspect PMR. If it's a correct diagnosis, then normally the patient will show much improvement in a day or two... not complete recovery but improved. I've been on Pred for 20 months... started on 20mg, but now down to 7mg / day. I don't remember having any pins and needles feelings in my hands.

For more information on PMR might I suggest you Google... "PMR Northeast". I'd give you a direct link but this post would bounce and need to be approved by a moderator and that could take a while.

Hope this helps some.

Rick F.

Hello there Grannyshiraz

Like you, I'm new to this PMR - came as quite a shock - I had been getting increasingly achey over previous year, nothing could be found & then before Christmas & it got much worse. I couldnt turn over in bed, dry my hair, was dreadful. I went on 30mg steroids & relief within hours was fantastic. I have had 2 x 2.5 mg drops & was ok for a week, but starting to struggle a bit again now. There is lots of really fantastic info on the different forums, but the one consistent thing that comes across, is that you must not reduce the steroids too quickly. Of course, everyone wants to reduce the steroids, but too fast a reduction often ends up with going up & down & taking more in the long run.

Going back to your pins & needles question - I have had odd 'pins & needles' - its not exactly pins & needles, but close, for a few years. I've seen various different specialists, just to be on the 'safe side', but no reason could be found - said to be 'idiopathic neuropathy' (basically 'tinglings of unknown cause').

It had never occured to me that it may be related to the PMR - but steroids haven't changed it, so I guess its unrelated. Not much help sorry!

Meggies

Hello Grannyshiraz and welcome although I'm sorry to hear you've had to find us.

I didn't experience pins and needles in my hands at the time of diagnosis; however, strangely, I did experience this just last weekend. Hopefully it isn't connected to PMR as after starting on 40mgs of steroid 5 years ago I am now down to around one and a half to 2mgs a week.

Your arm and shoulder pain is very suggestive of PMR - another common area for pain is in the hip and front of thigh area.

As Rick has said, if you get a big reduction in pain levels within a few days of commencing steroids, then that will probably confirm correct diagnosis to the GP.

Although a few PMR sufferers do not have raised blood test markers, your GP should have carried out ESR and CRP blood tests to see if your markers were raised, in which case it would be useful to re-do the tests to check that the inflammation in your blood was reducing.

Hope this helps but do come back if you have any more questions because there will always be someone around who will try and answer them from their own experience with this disease.

Do hope you get relief from the worst of your pains soon.

MrsO

When I first had PMR the pain in arms was unbelievable but no pins+ needles. Had to hold one arm up to switch kettle plug on and within 4 hours of taking my first dose of Prednisolone (30mgs. ) I was pain free which was considere more or less cast iron confirmation of the diagnosis. This is repeating what Rick has said. If you find your way to PMR NE as Rick has advised you will find plenty of support and information. Have you read the info on here? If you go to P and then Polymyalgia on the home page of this site there is a lot about symtoms, treatment, things to be watchful for. Like you, I just have PMR but we all have to be aware of Giant Cell Arteritisor Temporal Arteritis which can affect sight. If your doctor has not discussed this with you I think that would be something I would ask about. Chances are we will neither of us get it but it is important to know what to look for and what to do.

Sounds as though you are one of the fortunate people with an on the ball GP. Good that s/he is seeing you in two weeks for futher assessment. As time goes on and depending how your illness progresses the visits will probably be wider spaced. Sometimes my doctor has said a specific time to see him again but sometimes he says come if you need me. I have found it very comforting to be able to see the same doctor every time and if you are happy with yours I'd definitely recommend it

Hope all goes well Keep coming back.

Grannyshiraz

If you go to www.pmr-gca-northeast.org.uk and under Useful Medical Information you will find the British Society of Rheumatologists guidelines on the treatment and diagnosis of PMR. You can download it. On this site, as well, they have the same information. On that website there are also links and people's stories.

Come back here and we all will answer any question as best we can.

Love the name Shiraz.

Welcome from me too Grannyshiraz - now does that mean you live in deepest Oz or is that your favourite tipple? :-) Am I right in thinking I have seen you lurking on the PMR/GCA UK forum too? You''ll meet several of us over there too - though not always with the same names ;-) You will also find loads of collected articles and posts that explain PMR, what it is and what causes it, and how steroids work in managing it under some specific headings - and all in non-medical language. Many have been approved by the docs connected with the PMR/GCA charity so are reliable.

The pain will improve quickly with the pred provided it is really PMR, though it sounds very like it. You should feel about 70% improved within a few days to a week although some things will take a lot longer to go away altogether. The cause of the pins and needles depends which fingers/side of your hand is affected. One cause is carpal tunnel syndrome and that can be associated with PMR because of the swelling due to the inflammation. This squeezes the nerve as it passes through a tunnel in your forearm and gives you pins and needles. Another cause (different fingers) is from a different nerve being pinched in exactly the same way but in your shoulder. As the swelling recedes so will the pins and needles. Pred can cause fluid retention too and that may cause it occasionally - but its a bit soon for that in your case.

I see MrsK probably gave you the link to the parent site - and it's been captured to see if it is pukka. It'll be back.

Re that Ben - if you are looking in: we used to have a sticky at the top of the list with the links which had been pre-approved so to speak. We also had a sticky with brief histories which was incredibly helpful - you could look up someone's story and then post a more useful reply. I know stickies have been lost with this new improved version (if that's how you like to think of it :-( ) so is there a way to give us a different technique to save us repeating ourselves ad nauseum please? And sorting the posts by the original post date is not helpful - but I think Alan has already registered that. I don't want to have to scroll back through every single post to find if someone has added to a thread that was started months ago but has been the subject someone was looking for or the original poster has added new info to it. There are a lot of posts ;-)

Oh - and I REALLY don't like the way the green banner at the top drops that big orange menu if my cursor gets within inches of it. People with PMR and on steroids are notoriously easily irritated :-)

Eileen

Thanks to everyone that has replied to my posts, it is very comforting to know other people out there have something similar albeit I would not wish this on anyone.

Eileen - I am from the Midlands and I am a granny and my favourite tipple is Shiraz hence Grannyshiraz :-)

For me it all began around March 2011 time with what I thought was a frozen shoulder. I had a course of steroid injections but that really didn't make much difference. The pain then spread to both the tops of my arms, shoulders and neck. Driving can be particularly painful at times as my head feels too heavy for my neck and I have to support it with my hand.

It all came to a head just 2 weeks before Christmas and I was in so much pain and was in desperate need of help. My GP was absolutely fantastic and so understanding. He prescribed 30mg of prednisolone for a week to get me through Christmas.

After just taking them for two days I felt fantastic and did 6 hours worth of ironing in one day (naughty I know to let my ironing basket get to that state).

I went back to see my GP after Christmas and he arranged blood tests of which I have had several and they have highlighted elevated levels.

He now has prescribed 20mgs but I don't feel the relief as I did on the 30mgs and still in quite a bit of pain. As I mentioned earlier I have an assessment next week so hopefully I can discuss this with the Doc.

I have an appointment to see a Rheumatologist in Feb so that will be interesting to see what happens there.

Again thank you so much for support and information it really is much appreciated.

Grannyshiraz x

Eileen, the green banner I can live with; the drop downs only drop if you let the mouse stray onto them but I find but I really am not getting on at all well with the new "improved" version. As far as I can see it does nothing the old one didn't do and you have to spend too much of your life trying to find what you want.

I know old people are notorious for clinging to the familiar and others may feel differently but my feeling is that I won't be here as often as in the past.

Hello again Grannyshiraz

Another thing to keep in mind when you see your doctor is your blood results. Some people but not all have raised markers in their blood when they have PMR. These markers usually drop by varying degrees when taking steroids. Some doctors take the view that if your blood results are ok, then you must be ok. It's not quite as simple as that - some people don't have any increase at all in these anti-inflammatory markers but can be very poorly with their PMR. So any reduction in your medication should be based on your symptoms, not just blood results. Like you, I started on 30mg & have got down to 25 mg - still having pain (much less than originally) but GP doesnt want to drop me anymore. So if your 20mg not managing symptoms, a further drop doesn't sound like a good idea. My pain is 'liveable' with now, but my GP thinks I should be pain free at this dose before dropping, to reduce chance of a flare up.

Meggies

Betty - not only can I not perceive any improvement in terms of the forum, there are things missing that we did have with the old one. I suppose it is possible the rest of the Pat Exp site is easier to use - but I don't use it very much, I have other sources of information. I'm here for the PMR forum - and will continue to look in but I find it clumsy at present.

I don't think age has a lot to do with it - I'm more than 25 years younger than you and I really don't see the point of what has been done in terms of the forums at least nor do I like it. However, by definition, some of the threads will have had a user population which is focussed on the retired - because that is the sort of age group who suffer from that particular ailment. We are one of them - if the average age of PMR sufferer is over 70 (as claimed) then a lot of us are going to be silver surfers. I do hope Pat Exp hasn't thrown the baby out with the bathwater - after this last week, I think they may have to fish the baby out of the plughole ;-)And is it my imagination - or do you see hardly anything in this posting box compared withthe old one?

Granny Shiraz: It is possible that your well-meaning GP has created a minor problem. I too was given a short course of pred to cover a trip to the USA although it was for 6 weeks: I had 2 weeks at 15mg/day, 2 weeks at 10mg/day and 2 weeks at 5mg/day. I was almost back to normal movement within hours of taking the first dose of 15mg, I was great at 10mg and could have lived with how I was at 5mg. Within 48 hours of the last 5mg dose I was worse than I had been before. The next time I had 15mg it wasn't as effective and I have struggled to get below 10mg, been down, back up, back to 15mg and am now on my way back down again.

Studies have shown that yoyo-ing the dose makes it more difficult to reduce subsequently - which is the primary reason many of us on the forums support the idea of a very slow reduction of not more than 10% of the current dose at any one time. You haven't been cured with the pred - you are looking to find the lowest dose that manages the symptoms and it is different for all of us. If you overshoot that dose and the symptoms come back you may struggle to get things under control again. Even dropping the dose only 2.5mg at a time at higher doses might be problematic for some people and at round about 25mg or so quite a few people have found 1mg at a time drops work where bigger ones hadn't. You can drop 1mg every couple of weeks successfully where dropping 2.5mg a month doesn't work - strange but true. Ask fiftiesgirl on this forum!

I was started on 15mg which is accepted as a standard starting dose and the latest research has suggested that 12.5mg/day will bring symptoms under control within a month for about three quarters of patients. The doctors like that, the overall steroid dose will be less which is what they hope for. With 30mg you will get a faster relief but the effect in terms of side-effects will also be bigger. Of course, the other quarter of patients will either need longer or a higher dose - and there is no way of knowing in advance which group you belong to. As Meggies says, you have to go by the symptoms and not just the blood values. My blood values have never been high - I wasn't diagnosed for 5 years altogether. Other ladies have reported they did better at a higher starting dose - but just be patient. Some of my worst pain, the bursitis (the pain you have in your shoulder is an example) did take a few months to go. I'm just below 10mg/day now and pretty much non-stiff and have only minor niggles. Nothing I can't live with.

But, be warned, some people NEVER manage to be totally painfree until they are at the 1 or 2 mg/day level or even after they are off pred altogether. There are other things that cause similar discomfort and it is difficult to tell which is which - pred itself, reducing the pred and PMR can all be associated with niggles that are similar.

Can't see a quote facility here. Just wanted to remark that when I started on 30 in 1999 with my first round of PMR the side effects were, for me at any rate, far less trouble than this time on 15 for starters. I DID put on a bit of weight and my hair DID thin ( came back again, though. ) I minded that far less than the panics, palpitations et al that I had this time. Individual differences I guess. No more space!!!

Betty - if you keep typing the box will keep scrolling, you can type as much as you like ;-)

But really - what use is a facility to reply to the discussion direct from your email if you then cannot SEE any of the discussion you are replying to. Not even the last post. Sorry Pat Exp - you are not improving the shining hour.

Eileen

Hi Grannyshiraz,

I had awful pins and needles early on in my diagnosis. Just in one hand/arm. It was most painful in the evening and I found it quite distressing, I would have to hold my arm in a certain way to get any relief. The good news is, it suddenly went away and has never returned. I do hope the same happens with you. You've had lots of good advice from the replies before mine so I won't duplicate, just to say I'm glad you found us (not easy with this new format, we 'old hands' are having a real moan about it!!)

Love from Lizzie Ellen xxx

Welcome to the best place for all your enquiries about PMR.

I have had PMR fro nearly 2 years now and do get pins and needles in one hand usually at night. I also get tingles in my feet when my pred is about to 'kick in' a couple of hours after taking them. By the way I am now back to 7.5 after my flare up a few aches but getting better everyday

Koukla

Hi Koukla,

I have never found out what the funny tingles are in my feet - was offered medication to stop it, but its just a nuisance, so declined.

It started many years ago and hasn't changed since being on steroids, so another mystery.

Great news you getting down to 7.5mg and doing well too - helps us newbies to know there is light at the end of the tunnel.

Margaret