Waiting for the blood test

Hi Tilly

Welcome to you and happy new year. Sorry you have PMR like you mine started after a severe chest infection. Mine came on slowly and built up and when I was eventually diagnosed I was relieved |I had been trying anti inflamatory drugs with no great effect I was so tired and in constant pain typical PMR. Doctor started me on 20m mg that was 18 months ago I have been on 5mg for quite some while now have difficulty in getting below this level, am going to try later this month. I have been quite lucky with side effects I think the higher dose you have the worse the side effects. I have had quite a few ups and downs but have been feeling much better for much longer and have good days than bad days, so I am optimistic that it is on its way out. All through I have managed to work and lead a normal life although it is a struggle sometimes, especially as the steroids make you look better than you are.

If you need help or advice this site is brilliant I read the comments everyday and have found them very useful. Some people do get this worse than others I think I have been quite lucky to some degree.

Good luck.

Linda

Sorry in answer to your questions taking steroids does not make and difference to the illness. It hopefully burns itself out in 2-3 years.

Also dont know anyone that has managed without steroids for very long as you normally feel so wretched. Interested in anti inflamatory diet.

Linda

Hello Tilly and welcome although I'm sorry to hear that you are suffering. I'll try to answer your questions although I'm not medically qualified just a very seasoned PMR and GCA sufferer!

With regard to NSAIDS as opposed to steroids for PMR, during the first year of my PMR the then Consultant was unable to diagnose me and I ended up in bed for 3 months unable to walk or lift an arm travelling to hospital appointments by ambulance and wheelchair. The pain was horrendous and the ESR and CRP blood tests results off the screen. I got by on Ibuprofen and Paracetamol and eventually the blood tests results showed that the inflammation was decreasing. The Consultant just told me that he didn't know what I was doing but to carry on doing it! After 9 months the blood tests were normal and by the end of a year I was back to normal.........for about 3 months! This time added symptoms of head pain, nausea, vomiting and weight loss added to the previous recurring symptoms of back/hip/leg/arm pain. A different Consultant now diagnosed GCA which is linked to PMR which now gave me a diagnosis for that previous year. WHAT I LEARNED AND WHICH MAY ANSWER YOUR FIRST QUESTION IS THAT THERE IS A GREATER RISK OF DEVELOPING GCA FROM PMR IF YOU HAVE NOT BEEN PRESCRIBED STEROIDS FOR THE LATTER AND, UNFORTUNATELY, I FELL INTO THAT BRACKET. Plus long-term NSAIDS will put organs such as your kidneys at risk

As to your second question, no, the steroids do not \"kill off\" PMR - they just reduce the inflammation thereby reducing your pain. PMR eventually burns itself out, sometimes in a year to 18 months in a text-book situation.

As for an anti-inflammatory diet, yes I do firmly believe that this can be a great help in reducing the inflammation and therefore the pain.

Finally, happily you don't have to wait for the PMR to disappear to get rid of the peach fuzz. That will disappear along with any moon-shaped face as the steroids are reduced.

I do hope this has helped to answer your questions. Good luck with the results of your blood test and for a quick resolution of your problems.

MrsO

Hello Linda and Mrs O,

I have just posted a response but it seems to have disappeared.

If this is successful, I will try again.

Tilly

Thank you both for your responses. Most interesting.

I can't say that I am as badly affected as you have been Mrs O. I am so sorry - you have had a rough time. Mine, like yours Linda, seems to have come on gradually over a few months, getting worse and worse.

The news that GCA is likely to develop without steroid treatment is a bit of a blow and has derailed my intention to avoid steroids. Hmmm! I will need to rethink that one!

The thought of putting on (even more!) weight and getting a moon face is disturbing as I have to speak in public regularly and my confidence isn't [u:257b89709b]that [/u:257b89709b] great as it is!!! Oh dear!

I am very interested in the possibility of reducing pain with an anti-inflammatory diet and will do some research on this.

I will let you know how I get on.

Best wishes,

Tilly

Tilly - just to reassure you, not everyone gets a peach fuzz nor a moon-shaped face, and some people don't put on any weight at all. I was lucky in that I only gained a few pounds in spite of a high starting dose of 40mgs (now down to 2.5mgs) but I did and still do try to stick to a diet of loads of fresh veggies, salads, fruit, oily fish and live yoghurt, adding beetroot, celery, garlic, turmeric, amongst others, for the anti-inflammatory effect. If you think all that sounds boring, I do sin a bit.....my daily treat is a slice of a delicious fat-free marmalade teabread and three squares of dark chocolate!

Best wishes

MrsO

Tills Guest

I notice there is no location given in you blurb, but thought this might help you understand what is ahead. This site is a blessing as most people have experienced something or other of everything.

The first thing to remember is that both PMr and GCA currently have no known cause or cure. They decided when they come and when they go.

Prednisolone enables you to lessen the pain and the peach fuzz, moonface etc soon dissappear, it the weight gain that seems to cause most problems. You will also need to learn to 'go with the flow'.

There are support groups located in parts of the country and also a wealth of information both medical and practical on the following website.

www.pmr-gca-northeast.org.uk

But join in here and don't be a guest and remember, the question you won't ask or forgot to ask you medic about - somebody on here will have been there, seen it or done it.

Hope your pmr takes a swift walk away.

Hello to Tills Yes you wont be able to manage without this site !! I am on my 2nd bout of PMR First time was textbook gone in 2 years this time not quite so good as I have had about 4 attempts at least to get below 5mg I would agree with the advise not to try and manage without steroids I felt terrible on Ibrofen as though my head was in a bucket !! The idea with this illness is to get you down to 5mg as soon as possible without a return to symptoms and raised blood levels of couirse I started on 20mg both times never had a moon face ( have a round face anyway ! ) and didnt find the peach fuzz too bad I think you do have to look at your diet I did lots of looking into steroids and diet last time and I do think as low a carb diet as you can manage helps My now lack of exercise is contributing to a bit of extra weight One thing I would suggest is keeping a record of all your blood results steroid doseage etc side effects if necessary as it really helps you and your Doctor sometimes Also as unfortunately as mine came back I could compare with what happened last time Happy New Year to one and all and dont we all wish there was a cure and we werent reliant upon this just going in its own time !!!! Mrs G

Hi to Mrs O, Mrs G and Mrs K,

My thanks to you all for your care and support. I can't tell you how much it means to know I am not alone.

I can't get a blood test until 14 January. It shocks me somewhat that no interim medical intervention was offered between diagnosis mid December and tests a month later. I know that Christmas and New Year have delayed things but, nevertheless, I would feel completely at sea were it not for finding this site.

All your advice and information is so welcome and I am taking it all in.

More difficult than coping during the day are the sleepless nights. I seem not to sleep for more than 45 minutes at a time. I think that, as I move, I wake with the pain and discomfort.

I am back to work on Wednesday so will have to make a superhuman effort to get my act together! Demanding though it is, I love my job and I intend to keep it, come what may.

I live in Surrey by the way which is still covered in ice and thick frost.

Happy New Year to all,

Tilly

Hello Tilly - I'm just wondering why you are unable to have a blood test before 14th January. Once I have a blood test form from the Consultant or GP I have the blood tests immediately and I know that some GP's carry out the blood test at their surgeries. I note that you live in Surrey (there seem to be a lot of us on this site in the Surrey area - do you think it's catching?!!!). You don't say whereabouts but I am on the borders in Middlesex. Do hope you manage to get that blood test brought forward and get a diagnosis and some relief soon.

MrsO

Tilly

It is absolutely disgraceful that a blood test is not available to you till 14th January, and this in 2010, you should have a word with your practice manager and if the answer is not satisfactory, consider changing your GP and also write and complain to your PCT.

In the meantime, and I know I would kick up like nothing on earth if I had to resort to this - some ASDA stores do blood tests - I think they cost about £8. If you do decide to pay, ask them to specifically include the ESR and CRP tests.

Good Luck and keep pushing, remember you are paying for the service your GP gives you.

Morning Mrs O and Mrs K,

Mrs O, I am on the Surrey/Sussex Border north of Horsham.

I have to have a fasting blood test which has to be done first thing in the morning. With the Christmas and New Year holidays, there is, apparently, a backlog.

I was offered one two days earlier but was unable to accept due to an important work commitment. The following day was fully booked so the 14th it is!

All the best,

Tilly

Forgot to say Mrs K that I have no idea where I could find an Asda. Certainly, there isn't one for miles and I have never ever seen one.

Interesting that they do blood tests though.

Tilly - I'm lost for words to hear that we have a hospital such as your's where you have to wait so long for a blood test! :shock: I'm afraid I wouldn't have had your patience. I do hope you are not suffering too much meanwhile.

MrsO

Tilly,

I agree with everything that's been said on this subject. When I need a blood test I just turn up at the Hospital if my surgery can't come up with a very quick appointment. When my Consultant wants a blood test, she expects to have it the same day! She also tells me to have a blood test if I suddenly feel worse, or different - she trusts my judgement and keeps me supplied with blood test forms. Are you far from a Hospital? I'm just ten minutes away so I realize I have an advantage there, but you'll feel so much better with the right treatment it seems a sin that you're having to wait so long to get this sorted out. As Mrs O and Mrs K have both said, I wouldn't have your patience and I wouldn't be prepared to wait all this time for tests. I'm afraid I felt so ill that I did a bit of 'kicking and shouting' (metaphorically speaking!). Its your health and you deserve the best - do keep us posted, and please be assured, we're not bullying you, we just feel you deserve better. Take care. Lizzie Ellen