Newbie here : Im new tonight ...my story so far My... - PMRGCAuk

PMRGCAuk

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am64
am64

Im new tonight ...my story so far

My arms ache has been bad for over 6 months I thought id over done the knitting at first ...which was my new addicition after giving up smoking 18months ago....in the last month the pain has got so bad I could only describe it as feeling broken ...I felt broken :(

Saw my wonderful GP who arranged massive blood tests ...I was going for Hba1c anyway as Im a T2 diabetic ....

Returned to GP this week and he has put me on presolone 15mg got to see him after 7 days he wants to keep a good eye one me

I am feeling better I still have pain but even managed to brush my hair this morning and have noticed my energy levels have improved :)

Anyway just wanted to say hello and I will have a good look around the posts ...:)

48 Replies
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PMRpro
PMRproAmbassador

Hello from me - and enjoy your reading!

Hello !! Im on prednisolone not presolone ..although maybe they are the same thing ? I also have suffered from stiff hips for years when sitting for a long time ie driving ...I feel very lucky my GP immediately suspected PMR as I thought I had frozen shoulders and repetitive strain injury .....have had to stop knitting my beautiful colourful throws :(

PMRpro
PMRproAmbassador in reply to am64

Prednisolone is the active form of the substance. Prednisone is inactive until it has been processed in the liver to make prednisolone. (I suspect presolone is a typo).

Which is used is a country thing - in general the UK uses prednisolone and the USA tends to use prednisone. Here in Italy they usually use methyl prednisolone. And I am on a specific form of prednisone.

Gosh, didn't realise knitting was so dangerous! 😉 Well, thanks to an on the ball GP, you may soon be knitting cautiously again. Easy does it though.

Hi

Hope you are feeling better now with the pred. It is amazing how the pain goes. In October 2015 I was diagnosed PMR and on 15mg too. Now I am on 2.5 after slowing tapering. Just enjoy being able to do more for now. Through I have been swimming 3 times a week but not like the energy levels of pre PMR its more like swimming in slow motion and wallowing like a hippo!! It not that I can't swim as fast but afterwards I was so exhausted it was unreal so I had to slow down and still I do one major thing every day such as a swim, then I rest for 2 hours then I can for example go shopping. So my advice is to pace yourself and enjoy slowing down and relaxing.

Thank you for your responses ...I must take it easy ...just flushed the loo and felt like I had broken my arm !! So I must take it slowly ....see how things are tomorrow when I get dressed as it had become ab absolute nightmare

Hello am64 and welcome! Broken is a very good description for the way we feel. Well done for giving up smoking, it is the hardest thing I have ever done. It is so unfair that your knitting is difficult now - such a satisfying thing to do. I can't help wondering if the smoking was taking care of some kind of stress and now it's gone as a helper, PMR developed. So much for my non scientific theories. Stress does seem to be around for a lot of us prior to the onset of this condition though. I was started on 20 mgs and experienced almost total relief within a couple of days. Maybe you need a bit more to begin with. Stick with us, this is a very supportive and informative site.

am64
am64 in reply to SheffieldJane

thank you for your reply, i stopped smoking but took up vaping so i still get the nicotine, but interesting about stress as last year i was getting a lot of stress at work due to bad management. I got a new job in March which is much better i am a fundraiser for a rare diseases charity ...and now it seems i have one aswell !!

SheffieldJane
SheffieldJane in reply to am64

Well I think that is too much devotion to duty!

The stress/ trauma/ bereavement link crops up again and again. It was certainly the case for me. The onset seems to be after it is over too.

Hello and welcome. I'm also quite new to this forum but I can promise you that it has proved a life line to me. So stick with us and we can help each other not to feel so broken 😊

am64
am64 in reply to Janann25

thank you for your welcome, its nice to feel not so alone. I am a member of a great diabetes forum that taught me so much more than the medical profession even tho i have a great GP and DSN , there is nothing better than finding out what its really like from the horses mouth so to speak

Hi am64! I also started on 15, but after a few weeks of still being in some pain, and not knowing what to expect....I asked my rheumi if I could try 20. She said yes. She had told me that PMR was like a wildfire in your major muscles and you need to put the wildfire out before you can start to manage it. In hindsight, that was very good advice. I stayed on 20 for a month and then started down slowly. I am now at 8 and no problems so far. 7 next week! Having said all that, I often have sore shoulders, as I'm not as careful about lifting (I'm moving, so doing too much on a regular basis!). I think the most important thing is to stop and rest when you get tired, or are hurting.

You will love this forum...it has certainly made my journey so much easier. Knowledge is power and the ladies and gentlemen here are simply AMAZING!

am64
am64 in reply to -LJ-

thank you i like the analogy to a wildfire. This morning my right arm is sore but i must admit my hips are so much better getting up ...getting dressed was easier...now to try and brush my hair !

-LJ-
-LJ- in reply to am64

Every once in a while, I marvel at the fact that I can even roll over in bed, when just 9 months ago, for 2 weeks I couldn't! You WILL feel better! And you will resume knitting! Hang in there !

am64
am64 in reply to -LJ-

cant roll over yet without getting stuck...as to pulling the quilt over ....ouch !! I used to lie on my tummy with my arms under my head...totally impossible.However today I managed to brush hair :) and my hips and knees are much happier :) i didnt have to help lift my leg into the car !! my right shoulder elbow and wrist arestill the main problems, but i am hopeful as its only 4 days in

In December 2015 I was knitting a pullover for my husband and thought I'd done too much, as my arms were aching - but I've been a knitter since childhood. Since being diagnosed with PMR in May 2016, I'm now knitting again, so take heart - you will pick those needles up again soon. My last project was the knitted flowers for PMRGCAuk week in June!

am64
am64 in reply to Rugger

oh thank you for giving me hope...i have about a tonne of wool that i brought and so many ideas for projects.... i felt quite despondent that i might not knit again and was thinking of selling all the wool on ebay ...so i will hold off for now.

I find the creation of knitting beautiful throws so therapeutic and would give them away as presents... made with love !

Rugger
Rugger in reply to am64

My main hobby is rug-making. (Some folk have thought I'm a male rugby player!) They go mainly to family and friends. The one in my picture is a braided rug about 36" diameter that I made for Dave's auntie.

Hold off the sale and hold onto the hope.

Hello am64.. Welcome to this Wonderful Forum ..l am sorry that you are in pain and unable to do your knitting and l know that Broken feeling ..knitting and crocheting have been my hobby for many years and helped me get through my PMR pain. I muss it so much and l keep trying to persevere with it as it is exercise for my hands.I had a big Flare-up earlier in the year mainly due to a Family Bereavement and l felt like l had been put in a straight jacket in my upper arms and Shoulders.The pain with it is undescribable but is a bit easier at the moment. I had to go up to 17.05mg steroid and l'm down again to 15.05mg at the moment with visits to my Bowen Therapist .Well done on quitting Smoking .My partner did the same a couple of years ago and l admire anyone that can do it. It's good that you have an understanding GP. I Hope things continue to improve for you.. All Best wishes trish29

am64
am64 in reply to trish29

Thank you for your welcome, I am seeing my GP again on Monday and so am reading up this forum like crazy ....such a lot to take in ! But I will go well armed with questions about the inflammation indicators with both were well over normal....i can't remember which was which but I think one was 15 and the other 25 ....i will repost once I have checked. My GP also informed me that I have officially started the menopause ...I m 53 ! One good result I had was my Hba1c which is 6.8 (51) which is brilliant as in March it was 10.4 and GP was suggesting insulin !

Such a lot to take in !!

In alot of pain today and didnt sleep to well as on Thursday's it our turn to stay with very elderly in laws who need 24 hr care. I took my pred at 6.30am and slept a bit more but woke with very sore shoulders and elbows today ....also felt quite down not sure if its from lack of sleep or just pain ...or because pain seems back to worst again... so maybe I havent got PMR ?? just to get through till Monday to see GP. He originally gave me painkillers whilst we waited the blood test results Naproxen but they didnt help at all ...sorry for moaning its just one of those days I supose :(

so I am seeing the GP again tomorrow, and after the blip on Friday i feel things have improved, My right sholder wrist and elbow still painful but hips and left arm alot better. i even managed to get out of bath without such a struggle ! Any advice on good questions i should be asking at this stage would be very appreciated :)

Hidden
Hidden in reply to am64

|Make sure your GP checks your vitamin D levels as low levels can contribute to the pain

Thank you I will do next time I see him. So my appointment went well. Because I am a T2 diabetic he has started to reduce my pred. 12.5 mg for 2 weeks, then 10mg for 2 weeks then down to 7.5mg. Very sore today but not so stiff. Nearly lost my temper at work , not like me as I am usually very mild mannered. ?..maybe the pred ...?

Back for blood tests in 3 weeks and rheumatoilgist in October. In the meantime just plodding on :)

piglette
piglette in reply to am64

Hi am64, your reductions are quite aggressive particularly below 10mg, where normally it is suggested not to reduce more than 1mg a month and a lot of us reduce less than that. If you are very sore you should not be reducing and should hang on at that dose until you feel comfortable. Otherwise you can cause a flare and then start yo-yoing which can cause more problems. I think a lot of doctors panic about pred particularly if you are diabetic, as some of them are not always sure how to handle it.

Pred can cause a change in personality along with several other side effects.

am64
am64 in reply to piglette

Yes the reduction is fast, I mentioned that to GP but he said because of the diabetes he wants me down to 7.5 asap .....tbh 3 days on lower dose my arms have been bad following a dredful night sleep ...I tried to get up at 3am and got stuck on my arms and knees ...I just had no strength :(

1 week on 15mg saw an improvement but I was still in alot of pain....now on 12.5mg even worse ....whats the point of being on the pred if it doesnt help?

I will continue until Monday and if I am still this bad I will arrange an appointment to discuss it with GP .....sorry for the rant just feeling a bit worn out :(

piglette
piglette in reply to am64

Hi am64, I totally agree, what is the point of taking pred when you are still in agony. The trouble is doctors get so fixated about something else such as diabetes they seem to forget why we are taking the pred. There are several people on this forum who also have diabetes who may have some good advice about dosage and reduction. It does sound like you are on too low a dose at the moment though.

PMRpro
PMRproAmbassador in reply to am64

He may want to get you to 7.5mg asap but he has also to decide if he wants you have symptomatic relief - which is all you get with pred but at least it makes life worth living.

He had to leave you on 15mg for much longer than 1 week - until the symptoms are at their best you can achieve. Then you reduce SLOWLY. Either he lets you use pred properly and manages your diabetes or he should never have started you on it. You need the level of pred you need to manage the symptoms - and until the underlying autoimmune disorder that causes them goes into remission nothing will change that.

As piglette says, there are several diabetics on the forums. One way to start to help is cutting carbs drastically - and it also helps avoid weight gain due to pred. And even the American Diabetes Association approves THAT as a way of managing diabetes - they say short term (up to a year) but that is because they can't envisage patients doing it happily. I eat very few carbs - just veg, veg and more veg. (And once a week an icecream...)

am64
am64 in reply to PMRpro

Thanks for your reply, I have been a T2 diabetic for about 10years anf fairly stable Hba1c 7.0 until last March when it shot up to 10.4. My GP changed my medication and I cut out all obvious carbs....bread rice potatos and pasta. My Hba1c at end of June was 6.8 so I am very relieved....

Regarding the pred and pain, I also feel I should have carried on on 15mg as I said I did feel better initally but it did taper off after about 5 days ...energywise I was better but painwisein my arms it was stll not good.

I think a call to GP is essential tomorrow.

Thank you for your support

PMRpro
PMRproAmbassador in reply to am64

But did it taper off because you got all enthusiastic and did too much? It isn't all up to pred - you have to do do your bit with pacing and rest appropriately.

healthunlocked.com/pmrgcauk......

am64
am64 in reply to PMRpro

Ha yes maybe !!! I must pace myself !

PMRpro
PMRproAmbassador in reply to am64

Hope you enjoy the links - well worth a read!

am64
am64 in reply to PMRpro

Thank you I certainly will ...tablet is running out of battery for tonight so I have had a quick glance and have bookmarked them for tomorrow.... also im tired to take things in now

Thank you so much I really appreciate your help

PMRpro
PMRproAmbassador in reply to am64

That's why we're here

am64
am64 in reply to am64

Ps stopping the carbs was initially werid but now not a problem. ?.I dont even think about it....however I do still have 1x toast ( wholemeal) and peanut butter or marmite for brekfast as me an porridge just dont get on !

Thank you for your reply Piglette, its really nice to know someone is listening :)

I am really tired but dont want to lie down cos my arms get into such a tangle trying to get comfortable ....when I started on the pred last week I could believe how much more engery I had ...now I feel dog tired again all par for the course I presume.

piglette
piglette in reply to am64

Hi am64, I know just how you feel and the frustration because of it. I really feel you should increase your dosage though. Can you tell your doctor you are?

I think I will try and get a telephone appointment tomorrow, its just im not at home now till Monday as its our time to look after in-laws who need 24hr care. But my GP is very good so I think its the best plan of action for now. Thank you for your support.

piglette
piglette in reply to am64

Hi am64, there is no need for a face to face appointment so why not. To get a telephone appointment at my surgery is a week and four weeks to get a face to face appointment!!

am64
am64 in reply to piglette

I am very lucky my surgery is excellent I will speak with GP secretary in morning and I am sure he will call. He has been my doctor for 15years and is the only GP I have ever had that never felt I was wasting his time ...but I know I àm lucky

piglette
piglette in reply to am64

My surgery has just had "bad" marking by the CQC, I am amazed they did not get "very bad". They are trying to improve by sending text messages to remind people of appointments, which is a bit of a waste of time as the people who forget are the oldies who don't have smart phones anyway.

PMRpro
PMRproAmbassador in reply to piglette

I don't have a smart phone - mine just does phone calls and texts But that is all you need. And in the practice I went to in Durham it wasn't the oldies who didn't turn up - they were all there to meet each other...

piglette
piglette in reply to PMRpro

I should have said our oldies don't have mobiles!! My surgery is too small to have get togethers, it would be nice though. Also my village has a very old average age, perhaps a good place to live. A lot of people in my road are old enough to be my parents. Most of them have never even heard of the internet. Because the average wait for appointments is four weeks, quite a lot of people forget their appointments.

PMRpro
PMRproAmbassador in reply to piglette

Hardly surprising is it? Or they have popped their clogs in the meantime... :-(

piglette
piglette in reply to PMRpro

I think people popping their clogs happens quite often! I suppose the village's average age then gets reduced.

So interesting day ...i think me threatening to call the GP to increase the pred caused my body to behave and I have had a much more manageable day !! Little sore but nothing like yesterday ....funny the way it all goes eh ?

back to GP as so very much in pain, he has put me back on 15mg for month, wants more blood tests and is going to try and fast track me to see rheumatologist, he will see me again in 1 week. Wish me luck folks !!

Feeling so sore :( blood tests back inflammation markers all down but tested positive for parvovirus but an old infection ...I have read this can cause joint swelling but they talk about weeks not at least 9 months any thoughts folks ...seeing GP Thursday

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