You wonderful people have given me hope!

Amycakes,

Welcome to our club, but sorry that you have had to join it :cry:

I just have PMR, but there are other ladies on here who also have GCA and I am sure they will be along to share their knowledge and experience with you.

This is a fantastic support site and a great place to let off steam when you are having a bad day and no-one else understands what you are going through :wink: ., so keep popping in to visit.

best wishes, Pauline

Dear Amycakes

A big welcome to the forum but not so glad to hear of all the horrid problems and eventual diagnosis that have brought you here.

I also have PMR and GCA and so sympathise with all that you are going through. I spent a year with undiagnosed PMR, 3 months of that unable to get out of bed. Although that pain was horrendous, the arrival of even worse symptoms a year later where I thought for a month that I wasn't going to make it culminated in a diagnosis of these two conditions. Like you, I also ended up in hospital with a cardiac scare. I commenced on 40mg and thank Heavens that worked for me with gradual reductions down to 15mg. Some GCA sufferers commence on 60mgs. I hope you draw some comfort from my experience in that, although it has taken nearly four years, I have been on only 1mg for many months now and perhaps without my added complication of a spinal problem which often mimics the pain of PMR, I think I would have been off the medication some time ago. But, yes, as you say, there is definitely light at the end of the tunnel for you as well.

Reducing from 50mgs after only one week probably didn't allow for your inflammation to really stabilise. Hopefully, now that your rheumatologist has advised you to stay back up at 50mgs for a month, that will do the trick . Unfortunately as you are one of those sufferers who doesn't show raised ESR and CRP markers, you haven't got those to guide you but will purely have to rely on how comfortable you are feeling.

It isn't right that you had to seek a private opinion to be diagnosed but I bet you're glad you did. Mrs G and Lizzie Ellen both did the same and will probably both post on here to tell you that it was money well spent. I hope you will now get the care that you desperately need and deserve.

You will probably have loads of questions in your head and don't hesitate to ask away - there is always someone to help - even if it's a bad day come on here and vent it.

Meanwhile, the biggest lesson I think everyone will agree with is firstly learning to accept the condition, adapt life for a while and pace ourselves - in other words lots of TLC.

My very best wishes,

MrsO

Hello amycakes and welcome to the club! So sorry you have had to join us but these wonderful folk on here are fantastic and have helped me through the early weeks of my PMR.......you have come to the right place :D

Hello again Amycakes

Firstly, please forgive my stupid typing omission in the first line of my earlier post - of course, it should read \"but [u:96bb36483e]not [/u:96bb36483e]so glad\" - think my fingers don't coordinate with my woolly head sometimes! Please accept my apologies. ~ [color=orange:96bb36483e](Have now amended the post for you ~ EMIS Moderator (1) )[/color:96bb36483e]

Secondly, if you look at the PMR/GCA Northeast Support site you will find a wealth of information and advice, and you will also find a link to \"Our Stories\" where you will read of other people's experiences with both PMR and GCA. You will also see that there is a DVD available which is especially helpful for new sufferers in particular and also useful for watching by family members who often haven't got a clue what you are going through.

MrsO

Oh my goodness Amycakes havent you had a horrible time !!

I only have PMR and there are more on here with PMR than GCA but I am sure you will get lots of help from the ones who have GCA

Mrs O has already given you good advice and Im not sure if you have looked at the PMR/GCA North East website but lots of information on there and well worth joining their organisation and there are also on their website lists of other support groups around the country

The biggest battle for a lot of people seems to be the initial diagnosis because once you know what you are fighting there is help out there With my first bout of PMR my bloods were only slightly raised and though my Dr was convinced it was PMR Senior Partner said no steroids until confirmed by Rheumatologist I was deteriorating by the day and the wait was 3 months and as I couldnt turn over in bed without crying I went privately and definately the best money I ever spent as Im not sure what I would have been like after 3 months I was taking so many Ibroprofen ( made me feel really ill ) and Paracetamol I was forgetting what I took !! My Dr came to the conclusion that my bloods needed to be below 5mg on both ESR and CRP for me to feel good I was off steroids in 2 years but unfortunately it came back after about 3 years

This time my bloods were higher to start in the 30s and I have had a bit of a roller coaster but am now trying after 2yrs 4mths to get from 3.5 to 3 with my own very slow reduction programme ( 8 weeks for .5mg !!) I had a total blip Jan last year and went from 4mg in Dec to 15mg in Jan and it has taught me a bit of patience !!

The Drs and Rheumatologists though they all seem to have different reduction plans ( from what people say on here ) a lot of them dont seem to deviate from their plan ( luckily for me my Dr isnt like that ) and if your bloods arent telling a story they will probably struggle with you more so make sure you tell them how you feel

Rest is important and it does unfrotunately mean a change of lifestyle but as far as I am concerned the most important thing is to get well again so I will do what it takes

So join in any time and we all share our ups and downs and there is lots of help available here

Best wishes and hope everything is under control soon

Mrs G

Hello Amycakes, and 'welcome' to our club.

This forum is great to get to know what you can expect with PMR, and in your case, GCA as well.

Sorry to hear that you have had so many problems, it just endorses the fact that we so often hear, the so called experts do not always know everything.

Anyway, lets hope that now they can sort you out, so to speak.

I'm sure others will soon chip in to let you have the voices of experience.

I 'only' have PMR, for just over two years now, and am currently on 2.5 mg of Pred. daily, hoping to drop to 2mg soon, but only when I feel ready to.

You'll learn that this PMR etc, affects everybody in differing degrees and areas, and tapering the steroid dose is done quicker by some than others.

I have learned that the steroids are there to help me, despite my weight gain, and I know that without them I would have been unable to cope at all.

Keep coming back to see what's going on here, I have a look every day, but don't always make a posting. It is good to keep in touch just by reading others stories.

All the best to everyone looking in,

Julia ( DD )

[quote:a022523a1b=\"MrsO\"]

You will probably have loads of questions in your head and don't hesitate to ask away - there is always someone to help - even if it's a bad day come on here and vent it.

MrsO[/quote:a022523a1b]

Hello Amycakes,

I echo what MrsO says in her above quote.

You have certainly had a bad time, but you will find lots of like minded (and suffering) people on this great site to give you the moral support that you need through the bad times, and lots of congrats during the good times.

Keep logging in and reading the posts, you will learn loads!

I know I have..

Gilly.

What a rotten time you've had, Amycakes, :cry: :cry:

Someone has said that the diagnosis seems to be almost the biggest battle - OK it's not nice to know, but then you can start learning, and beginning to see how to cope, what you can do and what you can't! Get a bit of your life back

The thing that's constantly said here is that we're all different and react differently, but nevertheless I have learned so much from this site - and feel I have real friends who understand.

Hope so much you begin to feel a bit better, Green Granny

Hi Amycakes

As usual I am the tail ender.

In your post you mention the marker ESR. There is another important marker for GCA people, like me and Mrs O and that is the CRP rate. Ask and see if this is raised. Sometimes the ESR rate is stable and the CRP rate is up. Sometimes, in a few people, there are no markers. If none you have to learn to listen intently to your body. Read the British Society of Rheumatologist Guidelines on Diagnostic Procedures on GCA Issued June 2009. In fact print them off. There are also Guidelines on PMR but in your case GCA ones are the most important.

Never ever hesitate in contacting your Consultant, GP or failing that going to the nearest A&E and ask to see the Consultant in A&E, if you are unsure at anytime and put the guidelines in your handbag, just in case.

Your sight is the most important thing now. Take is easy, it is frightening at first but you will get the hang of it.

The guidelines can be found on www.pmr-gca-northeast.org.uk, the BSR site and also the NHS site. First one is easiest.

You can also read my story, yes I have GCA on the North East site link is Our Stories,

But remember we are all different and need to recognise that fact also.

I am glad you found this site - its a blessing to us all.

Hello Amycakes -

So sorry to hear that you have had such a tough time getting a diagnosis - hope everything will improve soon.

I have PMR and also - it was discovered later - must have had temporal arteritis - though it was fairly symptomless except for partial (and it would seem permanent) loss of vision in the left eye. I saw both a rheumatologist and an opthalmologist (both really good) and also had scans of the brain to rule out other reasons for the vision problems.

The rheumatologist prescribed 45mg/day of prednisolone for the Temporal Arteritis - (it would seem that the rule is that the number of mg prescribed is the same as your weight in Kg - my weight being 45 Kg - I am only 4ft 11ins in height!). As my ESR was low (6) I was able to reduce back to 15 mg/day fairly quickly. I am now on a slow reduction programme and so far ( 13 months after initial diagnosis) have got down to 5.5 mg/day. I'm keeping my fingers crossed that it will continue to go smoothly.

Everyone on this forum is so helpful and sympathetic and there is so much good advice available.

All the very best - Hilary / purplecat.

\"Amycakes\" welcome to the best bunch of people that you could meet on the net. So sorry that you have had it so bad. Good luck with the doctor this week and i hope that things start to improve a little for you.

I'm sitting here trying not to scratch my back because it gets so itchy will have to ignore it if i can because once you scratch once you can't stop

:devil: ♫~~~~♫~~~~♫~~~~♫

Dear Amycakes, I was a very healthy old granny (87) doing jobs, like edge cutting, redecorating my bedroom with a 2\" brush ! ! Moving furniture in and out of rooms..and preparing wooden floors for carpets to be laid....Then suddendly in July last year I woke up one morning and I could not move for the most terrible pain down my arms and hands,,,I could not do anything, and was screming with pain. Husband called ambulance. At the A&E, they took my pulse did ECGs blood tests and lots of X rays. More questions were asked when I was in the medical acute ward, and PMR was declared.. I had NEVER heard of it ! !

They put me on 20mgs Preds, and I came home. I am now on 6mg Preds, trying to reduce dose slowly, as advised by \"the Wise ladies in this Forum\"Because of their first hand experience\" are a bit more reliable than some GPs.....I have now a uretra ? infection and I am taking antibiotics, which make me feel not too good....Very wobbly and hope than in three days I will finish the treatment for it, and my sample water will come back with the negative. Preds are keeping the pain away, and I can now wash, dress, make nice meals in the evening...and I go out with the help of a walking stick, to keep me steady. I am beginning to do some small jobs with my sewing machine (like recovering an armchair with nice cottage fabric..) and look forward to be able to do many other not too physical demanding jobs. It may take me much, much longer to do these jobs, but it keeps me occupied and not thinking about PMR so much. Hope some of these words will give you strenght to cope with the horrible pains you experience at this moment. The Wonderful ladies on this site, never tire to listen to our moans and always give us hope. Take care and courage to fight the enemy within !!! Love. Granny Moss xxx

Hallo and welcome Amycakes however much you would prefer not to be here.

You joined us about 6 hours ago and I think you will agree you have had a terrific response.

I will not repeat what others have said, all of it good advice.

When she comes back from her family visitors I think Eileen, probably our most knowledgeable contributor, will have something to say about medics who are more wedded to laboratory test results than to their patients. Raised blood markers are by no means universal. PMR GCA is not so obliging. We do wonder why it takes so long for word to get around the profession. We wish they would read this site.

If you return here, as we all hope you will, you will quickly see that the leitmotif is that we are all different in our presentation and our responses. There are few hard and fast rules the universal one being to listen to yourself. You know how you feel. There will be better days and worse days and often we cannot account for them. Do what you can when you can and rest when you can't.

I will just comment on the \"panic\" attacks as I have had them, too, and very frightening they are.

My doctor is very accommodating and patiently reads my diaries ( the PMR ones, you understand! ) I,too, complained of racing heart and feeling of panic. Like you, I am not a panicker. My doctor said that all my symptoms could be attributed to Prenisolone. I am one of those who, while appreciating the relief they offer, do suffer unpleasant side effects from time to time. The good news is that, as my dose has reduced, so have the reactions. My muscles now more or less support me, having been like jelly for a time and life, while far from what I regard as normal, is liveable. I have had PMR ( no GCA ) for three years. I have had it before eleven years ago and it went away completely after three years on Pred., for five years before returning, as I now realise, at a time of some stress.

A tip that worked for me when I \"panicked\" was to breathe slowly and deeply, expanding the abdomen rather than the chest and to breathe out slowly through the mouth. If you Google Prednisolone/panic attacks it's somewhere there. I'll have a look and see if I can re-find it and post again. I don't want to lose all this as I know I will if I try now.

Good luck and keep with us. BettyE

Hallo again Amycakes. If you google [color=red:ba51640ecf]deep breathing panic attacks[/color:ba51640ecf] You will be spoilt for choice. I found it worked and works for me. Good luck. BettyE

hello amycakes

well you now have so much advice you wont be able to leave your computer !!

One thing I forgot to say that I say to most \" newcomers \" is to keep records your bloods ESR and CRP doesage dates and how you are feeling With my first bout I didnt do this but still had old diaries about so could work out rough bloods and reductions but my first bout did go like clockwork !!

This time no comparison !! but I have kept records and can see when I had my blip last Jan I had been reducing my steroids even though my bloods had been on a bit of a rollercoaster and when I was really stressed in Jan it all went haywire !! Now I like to be stable before anything happens and my Dr told me not to reduce when I had cough cold sore throat etc that persisted for at least 3 weeks

Keep in touch

Best wishes

Mrs G