Hi I havnt posted before but am interested in others experiences on this blooming thing. I got a strange virus 8 yrs ago and since I'm a retired nurse knew that there was something different about this one. When I ached afterwards didnt think much of it as you ache after flu dont you!
A month later went to GP who did a blood test and found my ESR was 90.
Started on predisolone which helped a lot cant remember the dose as it was very up and down tapering every time it got below 5mgs ESR went up again. Consultant put me on Methotrexate and started again to taper steroids ESR about 40. Then the hospital phoned to say was I feeling OK because last blood test showed slight liver changes. I got fed up at this stange and decided I'd had enough of tabs and as wasnt feeling bad gave up all meds. Now the aching has got worse again and ESR is at 64 .I am not really too bad in that I have two dogs and walk them every day after paracetamol but not quite as far as I used to.
I would love to know what other peoples ESR are doing and how long they have had this thing.
Just this week I started on the Methotrexate again but a lower dose of 10 mgs.
Hi Dessie,
Very impressed with the addition of a photo :dog: !! I was diagnosed with PMR last September after a very debilitating virus the previous May. Everything went quiet for a while (apart from a lingering pain and stiffness in one shoulder) until I woke up one morning wearing a concrete overcoat! It took a while to diagnose PMR as my ESR and CRP were hardly raised at all. It wasn't until I saw a Consultant (at this point I was beside myself with pain and stiffness in the mornings) and was put on Prednisolone (resulting in almost instant relief) that PMR was confirmed. I certainly couldn't function without steroids at first and am now reducing at a snails pace (1mg over a period of 7 weeks). I'm now down to 6/7mgs. My ESR went up to 21 just once and the last test showed ESR and CRP both at 2!! I'm sure you will get some information regarding Methotrexate as I know that several people on this forum are on it or have been on it, so hopefully they can be of more help to you. I hope you keep well and look forward to following your progress.
Regards
Lizzie Ellen
Hi there
With my first bout of PMR I never had increased ESR only CRP but with my 2nd bout I was up in the 30's for both CRP and ESR My Dr tends to take my CRP more as an indicator
I have quite a few aches and pains even when both are in the teens which I know is a \" normal \" range To feel really great I have to be under 5 for both which is I know very low but I think perhaps we all have an indiviudual norm without inflamation to start off with
On my final year of PMR last time ( went in 2 years ) I was only on 1mg and both bloods were 2 and 3 all the time I also had a bit of a false alarm 6 mths before my 2nd bout of PMR after flu then a few throat infections and was aching in the upper arms but when my Dr did blood tests I was down to 3 for both I did say to her then do you perhaps have a weakness in the standard PMR muscles for ever like people with bad backs it always hits the same spot but she didnt know
I have been lucky with my steroids ( only weight gain ) and wouldnt be keen on taking methotrixate unless I have too as other people I know have had problems with it I am on 5.5 at present after an up and down year (5mg in Dec then back to 15mg in Jan )
Hope you feel better soon
Best wishes
Mrs G
Thanks very much for the prompt replys isnt it amazing how one complaint can vary so much in systoms. That was very informative and helpful I will post more often on here and keep in touch.
Hi Dessie!
And I'm the one where the ESR and CRP were never elevated - I have had the symptoms of PMR for well over 5 years now but was only diagnosed last summer after I did a load of online research and finally went to the GP asking if it was a possibility. He had been doing bloods every so often for most of the time and everything was always normal. Even when it was really bad last spring the ESR was 4 (which as you'll know is very low for someone in their 50s) and the CRP bang in the middle of the normal range. The rheumy was disbelieving (still is) but I responded to 15mg pred within 6 hours so one of the GPs was quite happy to work with me on the basis of PMR and gave me pred. I had had a slightly elevated liver enzyme but it is now normal (didn't go down with cutting out wine so I went back to normal habits :redwine: :lol: ). I had also been admitted to AMAU (acute med admissions) with a TGA (transient global amnesia) at New Year 20 months ago where they noted high BP which persisted until after the PMR was identified. It's now back to normal (130/85).
I do pred on alternate day therapy, was at 13.5mg/2 days but have just had a flare and went back up to 17.5mg/2 days. Just tried down to 17 today and seems OK so far. I'm happy enough with that so far but would like to get lower - but I'm not keen on trying MTX, living in northern Italy and no wine? No thank you! :roll:
all the best,
EileenH
[quote:9a106502e4=\"Dessie\"]Hi I haven't posted before but am interested in others experiences on this blooming thing. <snip>
I would love to know what other peoples ESR are doing and how long they have had this thing.
Just this week I started on the Methotrexate again but a lower dose of 10 mgs.
Hi Dessie,
Welcome to the forum.
I'm a fairly newcomer in only having been diagnosed with PMR in March (five months ago). When I first saw the Rheumy, my blood tests showed ESR=85; CRP=6.4. He put me on 20 mg Prednisone and told me to return in one month or 6 wks.
Next blood tests showed ESR=9; CRP=.05 so suggested I try dropping to 15 mg per day. Since I was out of town I told him I was having some muscle pain. He said since I was traveling to stay on the 20 till I got back in town. The very next day I felt much better so I started taking 17.5 mg for that week. The next week I started with 15 mg per day.
In June, my ESR=19 (normal is 20 he said); CRP normal (don't remember the #) so said I could try 12.5 mg of Pred.
In July, my ESR=25; CRP normal so he told me to stay on the 12.5 since my ESR was elevated.
I was in to see the Dr. (Rheumy) today but won't know the results for a few days. Hopefully my ESR will be lower so I can get to 10 mg. We'll see.
I know I sound like an old nag, but steroids do not cure PMR and neither does methotextrate or any other sort of medication you care to name.
There is currently no known cause or cure for either PMR or GCA (they are one of 800 orphan diseases).
ESR and CRP rates are markers - they have to be taken into consideration with how you feel.
Pred and Metho are there to alleviate the symptoms and enable to you live with less pain. Getting down is not the aim, the aim is to make you comfortable and able to live your life, it may be different to what you are used to - but until PMR decides to 'take a hike - or a long walk off a short pier'. It is steroids or pain.
The aim is to get you down to the lowest dose you can take to keep you as pain free as possible. The medics can advise - but you and only you know how you feel.
Methotextrate is normally used for people who a) do not respond to steroids or have very bad re-action to steroids or cannot get below certain doses etc. Some people can take metho, some cannot.
Both have side effects, but different side effects.
Dessie, if you visit www.pmr-gca-northeast.org.uk and under Our Stories read Margaret W's, she has written about her journey on both steroids and methotextrate and within a couple of weeks hopefully there will be more information (vetted by the medics) for us all to see.
Please all, remember pred is not the enemy, it is PMR and until somebody comes along with friendlier medication or a cause or a cure. We struggle and swap and help each other.
Good Luck in this strange journey we are taking together.
Thank you all ,I find that when you have had this condition for a long time .Trying to decide how you are is a problem ! I have a bit of osteoarthritis and the back is not so young as it used to be LOL . So when I have pain and stiffness ,I get thigh muscles and and upper arms . The ESR measurement is useful. I am taking the Methotrexate in low doses 10mgs a week because although the steroids worked well it was impossible to taper them off completely ,eg under 5 mgs ESR went up,and the hospital said to increase them again.
Mrs K thank you I found Margarets Wright article very interesting. I havnt untill now heared anyone say a good word about Methotrexate. I have contacted the forum because Margaret says she takes 500mgs of folic acid twice a week .I was told to take 5mgs once a week .Quite a difference!
If this is correct its no wonder I was having liver problems .
Dessie
Sincere apologies are due. There was a typo in Margaret's story which we all missed, we have amended the website. It should have read 5mg of folic acid not 500mg.
We do endeavour to make sure everything is accurate on the website, so once again our apologies.
There will be further information on the website under Useful Information on Methotextrate and this website has an extremely informative and accurate leaflet on Methotextrate. Go to home, then medicines, then click on M - scroll till you find Methotextrate and read it - you can also print it off.
Apologies to all.
No apology required ,I should have realized it was a typo, It would have meant [and I'm no good at maths ] That Margaret was taking 1000 tabs !!
LOL :roll: :lol:
Just got around to doing the math. It would be 100 duhh.!! I did say I was no good at maths.! :oops: