Hi my name is Sandra and I have just been diagnosed with Polymyalgia
Rhuematica,I had been unwell for about 5 weeks untill I was unable to even walk dress myself shower without help and the thought of just getting in and out of bed terrified me .The pain seemed to be all over me undiscribable and I was very depressed and doing a lot of crying at last my GP said he would do a Sed test blood test the tests came back with a reading of 87 and he said that it was pretty high and I was immediately put on 8 sterio tabs a day for one week I saw the doctor on thursday gone and st this moment in time I am taking 6 tabs I am waiting now to see a Rhuematolagist but my biggest problem at the minuet is terrible fatuge I dont know what to do with myself I am so tired and yet when I think I will go and lie down I cant sleep but I have no energy to do anything which is so out of charector for me I am married and aged 61 years of age I praise GOD I have a good family,if anyone could tell me what a normal reading should be I would be very grateful.
Many thanks
Sandra[/b]
Hi Sandra
I can't tell you what a normal sed reading is, because I can't remember, but I'm sure someone else will join in who can. You sound like I was when I started (Nov 06 aged 59). I started on 40 mg, which was 8 x 5mg tablets, and they stopped the pain and stiffness very quickly - but I was sooo tired. The extreme fatigue went after a couple of months, but I have carried on needing more sleep than I used to.
It did take 3 or 4 months for me to get past the stage of having to plan my days very carefully so I could cope with the fatigue. I think the thing about pmr is that evryones experiences, and reaction to prednisolone are slightly different - but we have a lot in common too, and sharing experiences can help a great deal.
Hope it gets more manageable for you soon.
Margaret
Sandra
This is a worrying time for you as it's like stepping out into the unknown.
Take the time out to read past experiences on this site, there is a wealth of information from patients.
Turning to your query on SED/ESR rate, there is no normal for everyone, it depends on age, gender and a lot of other factors.
If you want to get in touch with us - pmrfighters@yahoo.co.uk you are welcome.
But this site is a good place to have found - we found each other here and are working like billyho to get research pushed forward into cause and cure.
Meanwhile - go with the flow - let your body tell you what it needs- don't lose heart - read the side effects on the leaflet supplied with your steroids and get a blue steroid card.
Remember you are not alone, its not a killer disease, it can and does go away - just sometimes it takes a bit of a long time.
mrs k
Hello Sandra I have had polymyalgia for just over a year and would like to say things do improve. Things you couldn't do in the beginning because of the pain becomes easier, I think we must adapt. I find I can now cope much more easily without having to call for my husband e.g. having a shower and getting dressed.
I find each day the pain becomes easier as the day goes on but I cannot get lower than 8 mg with the prednisilone and have to up it again to 9 mg. Other pain killers do help. Was wondering if anyone out there has come off the steroids altogether ?
Thank you all for your experiences it has certainly helped me.
Has anyone tried a change of diet ? They say eating certain foods can help.
Hi Sandra,
I am polymyalgia rheumatica suffer too. Since April this year, I have been taking 20 mg (4 pills) of prednesone a day gradually trying to reduce my intake to one pill because the side effects of steroids scare me. I am still in too much pain, especially in the morning so I have bumped my dosage up to 1 1/2 pills. This morning, I had difficultly getting out of bed because of the pain. I too would like to know what suffers have done to relieve the pain and if they have found an alternative to taking prednesone. Sorry, I can't tell you what the normal sed rate is but as long as the reading comes down in your blood test, I think that's a good sign.
I don't want to upset anyone but think it only fair to include my experience of this condition. My mother was diagnosed with PMR and temporal arteritis at the age of 70. She was also advised that it would be a long slow process but would probably deminish in approximately 3 years. She is now 82 and I am sorry to say, still a sufferer. Obviously some days are better than others and she has long since learned how to cope with it, but we have resigned ourselves to her having PMR the rest of her life. Call us pesamistic but if she doesn't then it is a bonus!
Hi Sandra i used to be on 60mill after four years i am down to 6mill.My sed rate was way up too i think 23 is a good sed rate.Some days the pain is unreal .I went to bed one night & woke up with this got it overnight .Nobody in my family has heard of it including me.I also had the large cell arterieitis that is why i had to go on such a large dose.To all my fellow friends who are in pain i wish you love bye xx
Hi Sandra i used to be on 60mill after four years i am down to 6mill.My sed rate was way up too i think 23 is a good sed rate.Some days the pain is unreal .I went to bed one night & woke up with this got it overnight .Nobody in my family has heard of it including me.I also had the large cell arterieitis that is why i had to go on such a large dose.To all my fellow friends who are in pain i wish you love bye xx
Hello there fellow sufferers. I was put on 60mg due to a spell in hospital having now been diagnosed with GCA as well as polywotsit! in mid March. The side effects have been horrible my face and neck are so swollen that if my head is down I feel I am chokeing. I am full of fluid (not to mention the bruises and cramps). I wondered if anyone can tell me what level of steroid I will have to get down to to lose the weight gain? I am reducing now by 5mg per week and am down to 45mg for a week as from today Yeppiee!!
Chisnal - it's good to hear that you have got a diagnosis now but I'm so sorry to hear about your side effects. 60mg is quite a high dose but at least you are coming down steadily and successfully.
Like you, I have both PMR and GCA, and I was started on 40mgs.
Re your question as to when the facial swelling would reduce, this varies from person to person. I had a lot of swelling around my eyes and this improved after about 3 months and definitely by the time I was on 15mgs.
Re your mention of fluid retention, I resorted to seeking out fluid reducing foods such as celery and asparagus and still have such foods regularly to try and fight weight gain. There may be other such diuretic foods out there which perhaps fellow sufferers may be aware of.
Hope this helps. Good luck.
Sandra- I've had PMR for a long time - 8 years or so and during that time I've been up and down on the steroid dose (sometimes up for reasons other than PMR). I've just successfully come through a bout of severe pain without putting the steroid dose up for the first time - only to have that replaced by chronic fatigue. It took me a while to sort out what was going on - it's only just in the last few days have I realised that the problem has changed. It creeps up so gradually! While I found other ways of coping with the pain, I don't think there is much I can do about the fatigue except go with the flow, but I am having my routine doctor appointment during next week and will pass on anything helpful. Like you, I'm too tired to sleep (I'm sitting here doing this at 5am), too tired to think and last night when I went to bed I was convinced I was too tired to breathe! I do know it does pass like everything else with PMR but it can take a while.
Chisnal, MrsO - I've read somewhere that watermelon and cucumber are also good for water retention, also apple cider vinegar not only helps with that but is also anti-inflammatory - but check that out as apparently one type (unpasturised) is better than the commercial ones. Ginger and cinnamon are also good too.
Nefret
Hi Sandra
when i first started with polymyalgia 18 mts ago I had a esr reading of 114 and put on 30 ml steroids and I am down to 12ml but cannot seem to get any lower. I think you will find that the 'normal' rate is a reading of 20 or below that most people would record I have been down to 8 but have gone back to 26 it is so up and down. I do know of people who have been cured and do not take any medication so there is hope for us all
best wishes
donone :roll:
I have had pmr for 6 years. I was put on prednisone, referred to a rheumatoligist, taken off slowly but had withdrawal etc. I have been off of it for sometime. However, I have had two knee complete replacements and the surgeon told me not to take prednisone which I did not want to do anyway. I figure I will have to live with it the rest of my life. I am very stiff in the morning and if I get over tired it is worse. So I do try to rest a lot. My balance is off and as of lately my feet have been bothering. I can not take alot of pain medicine because of stomach. I wish someone would be able to give me some advise. However, I was told by the Surgeon there is nothing I can do.
Madelyn
What you have been told is not strictly true, as far as I am aware.
If people are unable to take prednisolone for some reason or another; there is a drug called Methotextrate which is available and a number of patients with pmr have been treat with it. It does not cure pmr, as currently there is no known cause or cure, but it does alleviate the symptoms and can give you a better quality of life. Mind it comes with side effects as all drugs do, but not everybody gets every side effect.
It is a chemotherapy type drug and was introduced about 5 or 6 years ago.
It might be worth you discussing this with your GP and your Consultant Rheumatologist.
Remember the surgeon who did your knees specializes in Orthopaedics and whilst not wanting you to take prednisolone is probably not au fait with other treatments.
Specialists - specialize in particular areas and cannot be expected to be up to speed in other areas. Someone once said, eventually you will go to a different specialist for each finger on each hand.
mrs K
Hello, I am 87 years of age. I was very fit and never even took an aspirin. Did not even have head aches. The, one morning, on getting out of bed, I twisted the ligament on my groign, badly. I put up withe horrid pain for about a week. It was not going away...So, I called the doctor. He prescribed Ibuprofen. I took a few tablets, to no avail. I was in so much pain, that I was trying to sleep in different beds, and even on the floor.....Suddendly, one morning I woke up and I could not move ! The most terrible pain I ever experienced in my whole life, rendered me unable to move ! My husband called for the ambulance, and I was taken to the A@E at the hospita. When there, I was plugged on for ECG...blood was taken, my blood pressure, my temperature, and after a while, I was told I was going to be put in the Madical Acute ward. When I was there, 3 doctors came, and asked me all sorts of questions. The I was taken to X rays, and had all of my body X rayed, even down my throat....about 10 Xrays.....I was diagnosed with PMR. I was put on 20 mg Prednisolone a day. Given A large injection in my \"tummy\" to prevent blood cloths...and Lansoprazole Gastro resistant capsules. I am taking Vitamins A & D and Calcium D3 Forte. Also,Actonel, once a week to protect the bones. I am on 10mg steroid a day, trying to cut down to 5mg. But at present, 5mg make me feel quite unwell. I have a walking stick, to keep me steady, as I feel quite wobbly at times....I am determined to beat this, and look forward to be able to paint again...If I cannot do detail wateercolours...I will do abstracts !........At times, when I get depressed, it is another story !!!!....My love to you all fellow sufferers, and do keep on hoping to get better !
Hello there
Sorry to hear how you have been suffering
You dont say when all this started and how long you have been on steroids ??
Some people seem to reduce quite quickly with no side efffects ( with my first bout of PMR I was one of these and on 1mg in a year ) Nopt the case with my 2nd bout lots of ups and downs
You say go from 10 to 5 ??? Do you mean in one go as no one does that as that would be taking 50% of you pain reductiion away in one go
A lot of people on 10 mg have to do 1mg a month How much guidance is your Dr giving you as some people do seem to be sent away with very little information I am very lucky as my Dr is great but she also accepts that I have investigated this a lot and use this forum where I get great help support and information
The best place for all the informnation you need is PMR/GCA fighters North East where all the medical guidelines and treatment are clearly stated also lots of peoples stories like Ragnar who after trying lots fo time to reduce his steroids devisded his own reduction plan that worked
I started on 20mg 2 years ago got to 4 before Xmas last year then had to go up to 15mg in January in all that awful weather and have now worked out my own reduction plan and am now on 4mg where I will sit for a few weeks before starting alternate day reductions to get to 3mg I will do this slowly by one week still perhaps haveing 4mg on 3 or 4 days ( depending how I feel ) and gradually getting there After the state I got to at the beginning of the year ( mentally and physically ) I am much more patient with the whole thing now
Best wishes to you and do come back to us as lots of people on here have researched this illness a lot and will have ideas different to mine as what seem to work for one person doesent for another
Mrs G
Hello Rita
I'm sorry to hear of all the suffering that has brought you here but you will find a lot of great advice from the experiences of other sufferers both on this forum and on the PMR/GCA Northeast Support Group site Mrs G has recommended where you will find professional guidelines and recommendations for handling these diseases and their treatments.
How long ago were you diagnosed and when did you start taking taking steroids? Are you comfortable at the 10mg dose?
Most importantly, it is not advisable to try reducing from 10mgs to 5mgs - as Mrs G has already pointed out that is a vast 50% reduction in medication in one go and the body will strongly object! It is recommended to reduce from 10mg by 1mg down to 9mgs and stay there for a month and if you feel comfortable then you can try another 1mg reduction to 8mg and so on until you reach 5mgs after which an even slower reduction regime is advised.
It is possible that the reason you are reducing in 5mg drops is that you may only have been prescribed 5mg tablets. If this is the case then you will need to obtain some 1mg tablets in order to achieve the slower reduction.
Are you having regular blood tests, at least prior to each reduction? I have both PMR and GCA and have been taking steroids for 4 years next March, starting on 40mgs and now down to 1mg. Throughout the earlier reductions my blood was monitored via ESR and CRP blood tests and if those tests showed raised inflammatory markers and my pain levels had also increased, I was advised either to increase the steroids or at least not to reduce until those tests were normal.
Do keep in touch and let us know how you get on.
MrsO
Hi Rita and welcome!
MrsG has said it all - so I won't add any more except to say come back and ask any questions you might have and do go and read other threads to find out loads.
But I DO have to say I love your spelling blip - or was it Freudian???? Madical Acute seems to describe a MAU so accurately!! :lol:
EileenH
Hello, it is me again. Thank you for your kind interest and advice. My keyboard is the bad speller.....I shall have a few words with it.....Today I feel a bit depressed. I do not know how to deal with this illness. Feel sorry for myself and very ashamed to feel sorry for myself......I read all about your experiences, and I feel ashamed to be such a wimp....I am Italian, and I do not possess a stiff upper lip......We sing...we eat spaghetti...drink vino....and if anything like this hit us...we go to pieces......I feel so bad at not been able to do all the jobs I used to do. Even getting a meal ready, chopping the onions and vegs, is painful....But I am so happy I can get up and have a shower and dress by myself !....My appetite is over the limit....and I do have a MOON face !.....Desperately wanting to get off steroids. I am on 6mg now. Want to cut down 1mg every two weeks ? Is it wise ? I feel very dizzy most of the time. So, as I feel as if I have drunk a bit over the limit....I drink a small glass of sherry...and feel so much better......Hope to read you again soon. Love, Rita.
Rita
Sorry you are having a down day don't worry we all have down days.
Have you visited www.pmr-gca-northeast.org.uk and read the information on that site. Its helpful and also the latest Newsletter is on there.
PMR and GCA have a mind of their own, they come when they want to and go when they want to. There is, currently no known cause or cure, the prednisolone is to enable you to live as comfortably as possible.
It is hard to get your head around it all, but you will do.
Keep in touch with this site and don't hesitate to ask the question, however odd.