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Hi,

I just found this forum by chance, I started having rheumatic problems at the beginning of the year, and I am still having tests to find out what is causing the rheumatoid arthritis symptoms, and currently taking 10mg prednisolone, so I haven't been diagnosed with PMR or GCA, but I am finding reading peoples experiences, I have some of the symptoms mentioned, particularly the muscle spasms, I mentioned this to my doctor and told her how awful the pain had been, although it is now a lot better apart from it still hurting if I sneeze etc, also for some reason which sounds a bit odd but I seem to be taking a second breath as if I had been crying or upset, don't know if anyone else has had this or is it just me, anyway the doctor just said you have pulled a muscle, didn't even check it out, I think now I am going to mention it again.

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  • Hi Leesy,

    Yet another weird symptom I never mentioned. In the early days of my PMR I would take an involuntary breath like a sob. I have been diagnosed for a year and have found this forum to be massively supportive. I hope you get a diagnosis soon. It helps to know what you are grappling with. Don't be palmed off with pulled muscles. Maybe start making a note of your symptoms. Is your pain bilateral? Did the Prednisalone help when first prescribed? That's what my diagnosis was based on, miraculous pain relief within 48 hours but I was given twice your dose. I went from hobbling and being unable to get out of bed or a chair unaided to something approximating normal.

    Good luck! Let us know how you get on.

  • Hi sheffieldjane,

    I know it is odd, but I also get a pain around the rib area of my back on the right side when I take a double breath was yours the same? the pain didn't start until I began taking prednisolone, but the doctor said it wouldn't be that. I was taking 5mg and the consultant doubled it and it has taken all the pain away, so lovely waking up in the morning pain free. Although I am starting to decrease them from tomorrow, I am only going down by 1mg, not the 2.5mg the consultant told me to do. How did you decrease?

    Seeing the doctor Monday, I don't suppose she will even look at me, what happened to all the good doctors? Mine came bottom in a recent survey and the others in my area haven't got a good record.

    Anyway thanks for your reply, just 1 more question did you have a positive ANA result?

    Leesy

  • ANA is usually normal in PMR.

  • No I don't have the pain you describe but my husband has had that after a violent sneeze oddly, it lasted a while too.

    At the moment I am trying to reduce from 10 mgs of Prednisalone to 9mgs without my body noticing. So I've done one day on 9mgs then 6 on 10 mgs then 5,4,3,2,1 days on the higher dose and the remainder of the week on the new dose, pausing to feel how I am. This was interrupted by emergency babysitting for several days so I stuck with 10mgs for the energy and will tentatively start again this week.PLEASE CAN SOMEBODY POST THE DSNS LINK? For Leesy? There is a great link that PMRPro kindly posts numerous times that describes a gentle method of slow reduction that is approved by enlightened Rheumatologists. I do not know how to post it on here.

    It also involves cutting 1 mg tablets in half eventually because the aim is not to reduce by more than 10%.at any drop.

    As for poor doctors a good one for PMR seems as rare as hen's teeth. That's why this forum is so great.

    I am afraid that I don't know what an ANA result is. I have never asked for the numbers shown in my blood tests nor have they been shared with me. They don't always show inflammation with PMR anyway.

    Sorry if this is a muddled reply, I'm having an off day and the more I try to be clear the more muddled it seems. 😕

  • I was just going to take 9mg for a week and then just reduce 1mg a week, the rheumy doesn't seem to have any idea.

    Thanks

  • Hi Leesy 1mg a week starting at 9mg sounds quite fast, to me. If you were on 5mg you may find you can do it, but do watch out.

  • Yes, someone else said there is is another way to reduce safely, but the rheumatologist wanted me to decrease by 2.5 then after 2 weeks 5, I definitely won't be doing that looking at things I have read on the internet, I thought they knew what they were doing, As I said to someone else I haven't got much faith in the consultant I saw last visit.

    thank you

    Leesy

  • Hi Leesy Sounds like my ex rheumie. They give you a load of drugs one minute then grab them off you the next.

  • In case you don't see it:

    healthunlocked.com/pmrgcauk...

  • Thanks for this, consultant said to reduce from 10mg down to 7.5mg, I know this will take longer, but I rather do that than have the withdrawal symptoms.

    Leesy

  • What is the consultant suggesting when you get to 7.5mg?

  • Take 7.5mg for 2 weeks then 5mg for 2 weeks, then he was supposed to be seeing me, but when I received my appointment it is 10 weeks time, they are trying to change it but haven't anything yet. So will try the slower reduction me thinks.

    Leesy

  • Dear Leesy, I think you are right, I would definitely go for the slower reduction. I do wonder whether some of these doctors know what an adrenal gland actually is and how they function or how they don't function if it comes to that!

  • It was in the physiology and pharmacology lectures they slept through...

  • Like sheffieldjane said don't let them scuffle you around. Ok I didn't quote her lololo !

    In the last few months I would do the giant gulp ... I took a little breath then right on top of it I get this deep gasp for more. It is what I told my doc and it got me into the sleep clinic where they found I now have severe apnea.

    Even skinny people can get it but I think us heavier folks out number them.

    My first GP was useless I now have a great new one. I am not sure she is a full fledge doc yet but she knows her stuff and what she doesn't know she has no problem asking for help. A few times she went out of the room and came back with a more seasoned Doctor so don't be afraid to change doctors even if they are still newbies..

  • I am gradually learning that doctors don't know everything. Hopefully she will take notice of me Monday, I have had it for about 6 weeks now.

    I wish I could find a good doctor, haven't got much faith in the consultant I saw last. They just want to diagnose you even if you haven't got the symptoms, he gave me hydroxychrloroquine, then someone told me you are supposed to have an eye test before taking it, I had taken a few but it made me feel sick, I don't know how they can give you something if they are not sure, this is for lupus, and I have only got one of the symptoms, swollen joint.

    Thanks for your reply, hope you are well.

    Leesy

  • I have this double breath thing going on , thought it was just anxiety perhaps not . Diagnosed Jan Pmr , but think it's been going on some time .

  • Thanks for your reply, this seems more common than I thought.

    Hope you are well.

    Leesy

  • Hello Leesy.

    I too have a history of taking this involuntary very long and deep breath a number of times a day. It started shortly after I was diagnosed with PMR June 2016 and became more pronounced after I was diagnosed with GCA in September 2016.

    I have no scientific basis for saying this but I assumed it was my body's way of encouraging more oxygen to the needy muscles through the inflamed and poorly working arteries. My assumption could be complete hogwash of course but as I have begun to feel slightly better my need to take these breaths has reduced. Again my assumption being that the inflammation is more controlled and allows the blood and oxygen through more easily.

    I think we might need a Holmes and Watson deduction on the matter.

    A two pipe problem my dear chap.

  • Yes,I have read somewhere that you are shallow breathing and now and again you need that extra breath.

    Keep up the good work, we will have this mystery solved very soon :)

    Thanks for your reply

    Hope you are well

    Leesy

  • Hi Leesy.

    You have highlighted an experience "a second breath as if I had been crying or upset" I too experience this, along with a slightly sad feeling, last seconds and for no particular reason. Just though it was me feeling down. Only get it a few times a week.

  • Hi davidmf,

    I know it does make you feel strange.

    Thanks for your reply, hope you are well.

    Leesy

  • I know what you mean about the sad feeling. I decided that it was a throwback from childhood when you had been crying for too long and nobody came to help. A memory to go with the sob.

    I guess we all need a cuddle. 😢

  • Hi - I get that second breath thing too. I think someone told me it might be due to fat build up round your neck. Its like a hiccup or gasp

  • How do you know I've got a fat neck :) LOL, but I also get a pain around my back in the rib area, it has been 6 weeks now, seeing the doctor Monday, she will probably fob me off again, doctors don't even seem to do the basic tests now, she has never taken my blood pressure and when i went in with this pain first of all said "did I have a temperature " I felt like saying who is the doctor here, she never took my temperature gave me a prescription for antibiotics and sent off a urine sample, never took the tablets as I knew it wasn't a urine infection and when they got the result back I didn't.

    Anyway thanks for your reply, hope you are well.

    Leesy

  • I didnt mean you had a fat neck - in my case I have the Pred fat face!

  • I know you didn't, it just made me laugh, please don't think I was being sarcastic, this is all new to me.

    Sorry

    Leesy

  • Oh, I didnt think you were being sarcastic . Dont worry a bit. Its funny isnt it?

  • If you google "involuntary extra breaths" you will a lot of similar questions about the same thing from people suffering all sorts of different illnesses.

    I remember a similar question where I found a reference about it resetting the lung reflexes - needless to say I can't find the same one but this is perhaps easier to understand:

    theguardian.com/science/201...

    What probably happens is that when you are unwell either you aren't breathing as deeply - so when it happens you notice more - or you are aware you are unwell and concerned so are more aware when you do it and become concerned - raising awareness even further. Does that make sense? I know what I mean!

    But basically - don't worry, you'd be dead without it...

  • I know what you mean, I didn't realise so many people are effected.

    Yes, don't really want to be dead.

    Thanks for your reply, hope you are keeping well.

    Leedy

  • I wonder if it's like my sleep test where the O2 level drop even while awake.

    Maybe we should all learn to breath deep on a routine basis..

    I think I will try to be more concious of my breathing... it couldn't hurt.

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