Oh Happy Days!

Hi Bob,

Great news! Sounds as though you may be getting somewhere. Haven't heard of a steroid injection lasting three months before, but then I'm not a Rheumatology Consultant! As regards to stiffness versus pain. That's a tough one and has got me thinking back to when I couldn't turn over in bed or hardly get out of bed. I would say that it was so painful it made it feel as though everything was stiff. I think the pain was preventing me from moving - is this making any sense Bob? I could barely walk in the morning but I'm sure it was pain mostly. I don't know, even I'm puzzled now! Stiff or painful, your symptoms seem to refect mine exactly, including nothing much showing up in my blood tests. I have to say that 3 months till your next appointment seems a very long time as my Consultant wanted to see me every two weeks, armed with a complete set of blood tests for the first couple of months. But everyone has different ways of working and I'm assuming that you will be able to make an emergency appointment with her if the symptoms start to return, which mine did for a few days before settling back to a very acceptable level. I'm sure there is someone in our group who has experience of the steroid injection and also several people who may have a more coherant explanation of pain v. stiffness Really pleased to hear that you're experiencing some relief at long last and your depression is being replaced by hope. Brilliant news.

Regards

Lizzie Ellen (the Saints supporter!!!)

Hello Bob - at last some action and good to hear that you are feeling better already. It is unusual for a consultant to say that she is almost sure it is PMR but then not prescribe steroids to confirm her diagnosis. Although having said that, my first consultant left me for a year (3 months of that in bed, like you unable to turn over) without even considering PMR or any treatment :xLike Lizzie Ellen, I'm surprised to hear that you are not having a follow-up appointment for 3 months, but then if the steroid injection is supposed to last 3 months I suppose that makes sense. Did she give any advice about activity? As for pain/stiffness, I think Lizzie Ellen has said it all :lol: May each day now get better for you Bob......even picking up your grandson again!

MrsO

Bob

Please read para 5, if no other para of the BSR Guidelines issued June 2009.

You can find these guidelines on the BSR website, the NHS website and www.pmr-gca-northeast.org.uk.

They really do enlighten you as they are written for Rheumatologists.

As for the difference between pain and stiffness, you tell me. I do not have pmr, but I do have a stiff knee in the morning which is painful.

Are you being stoical because you are a man?

Hi Bob,

I am so pleased for you that you have, at last, seen a consultant. Getting a proper diagnosis seems to be so difficult.

I am no expert but my experience is similar to yours.

My worst time was in bed when the pain seemed to be worse than any I had during the day and turning over was excruciating. In the morning, I was stiff. The stiffness wore off but the pain didn't.

My take on this is that I spend the night tensing my muscles so when I tried to get out of bed my body was aching with the strain and stress of muscle fatigue. This diminished as I moved about but the deep muscle pain was still there.

I do hope you are sorted out soon.

I am just off for an early morning visit to the GP before I go to work.

After two weeks on Prednisalone, I am a different person. I can't say I am completely free of all pain but I am 70% better which makes things bearable. I do find the cold weather makes things worse though!

It will be interesting to see what my GP says this morning becasue although I have the classic symptoms, my blood tests were normal.

I want a referral!!!!!!

Good luck Bob. You have suffered long enough and deserve to have a proper diagnosis and proper medication.

Firstly Bob I am delighted that you are now getting some attention and hopefully some relief from your pain Like the others I am a bit mistified with this stiffness/pain question When I first had this I was in agony in the mornings trying to turn over in bed and cried Surely if your muscles are really stiff and tight and you try to move them you get pain ?? It was the same everytime I sat down If I shuffled around I was fine but sit even in the Drs surgery I struggled to get up again Or are we being a bit too simple for your Rheumatologist ?? It seems abit like a chicken and egg situation The problem is when you have gone through so much pain you find it difficult to function at all !! The blood results being low I am beginning to think arent so unusual now for PMR as there seems to be quite a few of us who have low ESR and CRP The injections I have never heard of for PMR The only steroid injections I have heard of are for things like frozen shoulder back muscle pain and muscle injuries which will not heal with normal painkillers and massage At least you are a bit further forward and able to build yourself up mentally and physically while you are hopefully having this respite frm the pain Dont go climbing any Mountains or doing any Marathons !! Best wishes

Hi Bob

I was given a steroid injection at my first appointment with the Rheumatologist which was on 4th Dec and I had an excellent response with my pain all but disappearing within several days. When the blood tests came back and PMR diagnosis was confirmed, I was started on Prednisolone (15mg daily) on 7th Jan. To cut a long story short, I was intolerant to the oral steroids (despite 3 different GP's telling me I had a virus!!) which fortunately my consultant recognised immediately on hearing the symptoms from my own GP, and I am now being treated by injection. I had my second one on 22nd Jan as my body was screaming in pain again and my GP has told me these will be given to me monthly initially then we'll \"play it be ear\". I would imagine that if they lasted for 3 months then I wouldn't be getting them monthly. I get 120mg dose of Depo Medrone (Methyl Prednisolone).

I hope you get a diagnosis soon Bob and wish you all the best.

Hope

I'm so glad you're getting some help, Bob.

I've just been to see a new Dr. in our practise who specialises in rheumy stuff. As I've just gone up to 10 mg. pred. from 7.5 mg. and not felt any better, and as it's been my first real flare up it was a bit depressing. He has put me on 15 mg for 2 or 3 weeks, but reckons I don't respond very well to oral steroids. I took 4 months to get from 11mg to 8.5 mg. last year, then another 3 mths to get from 8.5 to 7.5 mg. It's not that I am allergic or anything, altho' I get the \"usual side effects\". So if I don't feel better after the larger dose he will try injections.

He's also going to do some blood tests to see if there's anything else going on, tho' he doesn't seem very keen on blood tests as a diagnostic tool for PMR or to help with the steroid dosage.

I also asked him about acupuncture which I've also brought up on this site. he's not against it but said it made more sense to wait and see what, if anything, else is going on, after the tests. OK by me.

Anyway the best of luck, Bob.

Green granny

Hope you get sorted soon Green Granny.. It is soul destroying waiting for things to happen and matters to improve.

Am I alone in thinking that steroids don't seem to work so well in this icy weather?

Tilly

Hi Green Granny Sorry to hear that you like me are back on 15mg !! I feel OK and hope it doesent end up back at 20mg I dont have blood tests for a few more weeks so it gives it a chance to settle down You like Bob are being offered injections so that is interesting I can understand a doesage each day but find it hard to understand how an injection once a month or 3 months would have the same effect ?? I shant look into accupuncture until ( if ever ) I am near 5mg again as I said before I had read about it stimulating the adrenal glands into working again My bloods do tend to tell the same story as how I feel except when I have colds when they are taken and they are then elevated so my Dr always does mine Yes Tills I am thinking all this cold weather isnt helping I dont ever remember feeling the cold so much but think lack of movement isnt helping either People with Rheum Arth always suffer in damp weather so perhaps the cold weather is having the same effect on us as a few of us are suffering at present Best wishes to all

Hello Green Granny and I do so sympathise with you having to increase back up to 15. I know how low that makes one feel for a few days, having been there a few times, but you will 'pick youself up and start all over again', as they say, and then feel much better physically and emotionaly when the higher dose kicks in.

It does sound as though the different GP you saw is taking a special interest and it's good to know that injections are available to you if you continue to take so long to do the 1mg drops. However, hopefully this time you will manage to reduce more successfully if the PMR starts to wane.

I do so agree with Tills and Mrs G that this cold weather is counter-productive to our condition....I've never before worn such thermals and thick sweaters as I've worn this winter and that's with the heating up high - Heaven knows what the bill's going to be like.....I think all PMR sufferers should be given extra fuel allowance!!!!!

Hope you start feeling better very soon, Green Granny - at least we've got this site to get it off our chests!

MrsO

Dear Tills, Mrs G and Mrs O, Thanks SO much for your encouragement - it just shows the value of this site! However much one tries to explain to other people they really can't get it.

i've just bought a \"duvet coat\", on offer in a magazine at the weekend. So the weather probably will turn warm and I won't need it, but either way hopefully I shall be warmer.

I looked up steroid injections on the internet and they all seemed site specific e.g for frozen shoulders or sports injuries but I guess I might learn.

At least we're into February now, lovely if we could have a warm summer!

Youngest son, still living at home, seems to have swine flu so glad I've had the jab! Thanks again, green granny

Hi Bob, lets hope things are improving for you.

Regarding the 'pain/stiffness' I believe you can have both and they are very real. At my worst, apart from the pain of the muscles my wife had to put my socks on because I couldn't flex my knees and thighs enough to reach down.

At the moment everything is great - its almost as if nothing ever happened. I have a blood test next Wednesday and GP is hoping we can try a reduced dose (20mg at present) Will let you know the results.

I can only think that from what I have read here, in spite of the agony I had, I think my PMR has been almost mild compared to some people. Or maybe there is worse to come!

Alan

Hi everyone.

Once again, many thank's for all your posts that are so helpful and informative. The pain in my shoulders is refusing to go completely (which is a little worrying) but a lot of my aches and pains have gone and I just feel so much better in myself and feel like my life is starting to get back to normal.

Klosblue's comment regarding needing these injections monthly is a little worrying, after the consultant told me they work for 3 months, but knowledge is power so thanks Klosblue and I will monitor the situation closely. I really don't want to be back to square one in a month!

The discussion regarding stiffness and pain is very interesting and Lizzie sums it up nicely in her post. I believe we are all in pain which is why we have difficulty moving and appear stiff so I am not sure what the consultant was getting at but she seemed to think it was highly relevant to whether I have PMR or not. I am sure we can all relate to Sog's experience with difficulty putting on socks in the morning but again its more to do with the pain than stiffness per say.

Am I the only one who doesn't find the weather affects me?

Perhaps more worrying is that when I went out this evening in my car I got to the end of the road and couldn't remember where I was going and whether I had to turn left or right for about a minute. A sign of old age or what :?

Hope you all have a good one tomorrow.

Bob :D

Hi Bob,

Great to hear you say that your life is starting to get back to normal. We can all empathize with that sentiment. I don't even know who I am sometimes, let alone where I am or where I'm going :? So I wouldn't worry too much about your lapse of memory. I think most people on this site with know what you're talking about. Brain wise, I have bright days and dull days and some very confused days but I think that's a combination of the PMR and the medication and at the moment I'm having mostly OK days. Regarding your shoulders, if its any consolation, my PMR started in my shoulders and they were the last part of me to respond to the steroids. Even now, when I feel I'm doing very well, my shoulders continue to ache, but just a gentle ache that I forget about most of the time. I think any illness will seek out your weak spot and after years of hockey, badminton and in recent years bowls, my shoulders have always been my weak spot so I'm not surprised that they suffered the most. I'm not sure if the weather has affected me or not - I'm off to Spain for two weeks this weekend (purely for medical research!) so it'll be interesting to see if the warmer weather helps. May your improvement continue at a pace and your built in GPS start working again :lol:

Regards

Lizzie Ellen

Hi Lizzie

Great to hear there is a fellow bowler on this site. I am a complete addict and treasurer of the biggest club in the area but this PMR has all but ruined my indoor season and I don't hold out much hope for outdoors as well. I suppose I could always make the tea instead :x

Have a really great holiday.

Bob :D