Suffering with PMR , swollen ankles and lack of sleep

I have had PMR since January 2016 , and am on prednisolone 20mg ,have had Achilles tendonitis and still ankles swollen very much although the tendonitis is slightly better ,have had trouble sleeping even though been put on Zopiclone and codeine phosphate

Has anyone got any suggestions, what will help me sleep

29 Replies

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  • I have given in to the insomnia and listen to the BBC World Service. I have learnt all sorts of fascinating things.

  • Hi

    Thanks for reply ,

    Went to doc yesterday, he has doubled up on the zopiclone for a week to see if they make any difference , last night was slightly better after taking 2. So will have to wait and see Regardss

  • Hi hagarviking,

    I have also been put on Zopiclone. I have asked for the smallest dose 3.75 mgs. But double the number of tablets.I usually wake at around 2am and I take another one, if I'm in pain I take 2 Tramadol. This way I manage to scrape around 6 hours sleep. I always sleep in the afternoon, at least once and gather all these hours together like treasure.

    Good luck. I was going insane with exhaustion.😫

  • Thank you for your reply,I went to doc yesterday ,he suggested trying me on double dose of zopiclone for a week to see if they work ,I took 2 last night and it seemed to help a but felt a bit woozy at first , I suffer a lot of cramps because of swollen ankles,doc said Achilles tendonitis wasn't the steroids ,it's part of the PMR ,I have appointment to see a rheumatologist in a few weeks ,so will found out a bit more then I hope ,thanks for you help

  • I have been prescribed Quinine tablets for the cramps. I find it I take one for a few weeks at bedtime it solves the problem and when I stop the cramps don't come back for several months.

  • Hi thanks for reply , I will ask rheumatologist about them when I go on the 6th Sept

  • I was prescribed quinine sulphate for cramp too. They are wonderful although a lot of doctors do not like prescribing them nowadays.

  • I take a small bottle of tonic water to bed with me along with a magnesium mouth spray in the event of dreadful cramps occurring. I also take a magnesium supplement as recommended by my Rheumy during the day. I also rub in a small amount of magnesium oil onto my legs every day when applying my skin cream - if I don't do all these thing I can be guaranteed cramp. Since having my varicose veins injected the cramps have improved.

    To help the bursitis and tendonitis in my right hip region I have been having a lovely warm bath at night - you guessed it, with Epsom salts (magnesium).

    I also take 3.75 Immovane, (Zopiclone is the generic) to help me sleep plus a small amount of melatonin - cope with a decent nights zzzzzzzzzz's

    Blessings:)

  • Are you still on steroids. And how long have you had PMR for

    Sounds like you have had it a while

    These magnesium are OK with steroids them

    Regards

  • Are yes afraid so, diagnosed PMR Feb 2015 but struggled thru 2014 having many steroid injections in process.

    Yes magnesium vital especially if one has gut intestinal sensitivities/issues like I've have. Can create malabsorption problems - that is another reason why I supplement with a good quality magnesium oil topically.

    Good luck:)

  • Hiya I have ordered the magnesium items you mentioned ,

    I also have diverticulitis ,which since being on prednisolone I haven't had any problems with but I expect when i go down lower on prednisolone it may start up again

    Thank you very much for your advice

    Will keep in touch

  • You will notice a difference.

    My Rheumy asked me last week (when I presented with ongoing r hip pain) if I was taking enough magnesium.

    I never over do it & only take suggested dose orally. You can overdo it & will know if develop diarrohea which is counter intuitive to what you are trying to achieve.

  • HI

    I was given Atarax (hydroxyzine) its a strong antihistamine - 1 tablet nightly - it used to leave me groggy, but worked, I would take it when I really needed to catch up.

    I am on 12mgs now and it is a little better but I could never sleep until i got below 20mgs - so hang on in there!

    Ankles still puff up worse in heat so cant help there - I would guess when the steroids reduce they hopefully will too.

    Best wishes

  • Thanks for your reply ,when I first took pred I felt like a new women but used to get up early ,but have more energy but after trying to decrease pred to 17.5 mg ,that's when I seemed to get Achilles tendonitis, I went back to 20mg but swelling didn't go

    Doc said it wasnt pred it was part of the PMI have aappointment

    To see a rrheumatologist in a couple of weeks time ,so hope fully find out more

    Doc yesterday upped zopiclone to 2 a night ,I had a slightly longer sleep but feel a bit woozy on getting up ,

    My feet sometimes feel like I am working on bubble wrap because of the inflammation, I am on naproxen ,it helps a bit ,but really painful when it feels like burning up

    Thanks for your helpful advice

  • My doctor said I should not take naproxen with steroids as they are counterindicative. She said if I did need them for a short time, ( I had sciatica,) I should take a PPI with them. Naproxen has no effect on PMR.

  • I was given voltarol gel at first but it didn't work ,so he gave me naproxen to try to take down swelling ,the swelling is still there but they seem to help with the burning inflammation feeling

    What is ppi. Is it something like omeprazole that helps with acid reflux. As I already take 2 a day of them

  • Yes omeprazole is a PPI.

  • Hi,

    The thing that stands out for me is that you are on 20mg of pred ( when the usual starting dose is 15mg ) 7 months into your PMR journey. Is there a reason for that?

    Pred makes it difficult to sleep. I would be very careful about taking Zopiclone as they are exceptionally habit forming. The best way to take them is only every 2nd or 3rd night.

  • Hi there

    I was put on 20mg of red as ESR blood test showed 71 instead of about 15 blood count ,I felt like a new women to start with the pred,but started to come down to 17.5 that's when I ended up with Achilles tendonitis ,went back to 20mg pred but swelling getting worse ,doc said it's part of PMR not steroids got appointment coming up soon for a rheumatologist,

    Will hopefully find out more ,but thanks for advice about zopiclone

  • The most recent international (EULAR/ACR) recommendations for the management of PMR suggest up to 20 to 25mg/day as the starting dose. There is a lot of variation in the dose people need - not least because the amount of pred absorbed varies from 50 to 90%. Which obviously makes a massive difference if you are a 50% person...

  • Hi thanks for that info ,I am 68 ,

    Started on 20mg , in January this year , with backache oneside ,and tried in may to go to 17.5mg but ended up with needing to go back to 20mg ,then in July tried to come down to19mg ,

    For some reason I ended up with Achilles tendonitis, although doctor said it wasn't the steroids, it was the PMR causing it ,I still have horrible swelling on both ankles .

    I have come down to 18mg as I hate the side effects ,as having trouble sleeping

    I had a small cancerous lump in my breast last year and radiotherapy, but this is getting me down more than that

  • Pred can cause achilles tendonitis, especially if you have a history of taking quinolone antibiotics, you don't even have to take them together though that makes it worse. Having achilles tendonitis with PMR is probably pretty rare - though I did but mine was due to a quinolone antibiotic and Medrol taken together.

    I do wonder why doctors say things that are, at best, unprovable (that probably isn't a word but you know what I mean!).

  • Hi thanks for reply ,

    I have never been on quinolone or medrol

    Does anyone know if herbal tabs natrasleep work with valerian in them ,and can threy be used with steroids

  • A quinolone, it's the name for the group of drugs - any antibiotic whose name ends in -oxacin basically: ciprofloxacin or levoflxacin for example.

  • Hi hagarviking. Further to Keyes' comment, Zoplicone also loses effectiveness after a relatively short time. I've found that first-generation antihistamines are effective sleep aids but they do tend to make me feel groggy for most of the next day. Diphenhydramine (the active ingredient in Nytol) and Doxylamine worked for me.

  • Hi thanks for reply ,wasn't sure about herbal or antihistamines if you are on other tablets ,will speak to rheumatologist on the 6th Sept ,I slept a bit longer on double dose of zopiclone taken last night .I don't think doctors like you to be on zopiclone for too long anyway

    Regards

  • Like all meds they have their downsides. There was one side effect that stood out when reading about antihistamines taken over a period of time - they can attribute to photophobia - absolutely no good for those who have a migrainous history.

  • Another drug that can help with sleep is Amitriptyline. As it is also a muscle relaxant, it can help some PMR/GCA people with pain too. I have been on it for 3 years, over a year into taking Pred. and I had almost given up ever having a good night's sleep again.I hate being dependent on it but it does really work for me. There are lots of potential side-effects however, so worth reading up on it.

  • Hi thanks for reply

    Funny enough I have been on amitriptyline for years for my osteo arthritis ,but I think my body was too used to it ,

    Doctor took me off them 2 weeks ago as I wasn't sleeping and put me on zopiclone 3.75mg ,still I couldn't sleep properly ,sometimes I was up at 2am ,I went to see him yesterday and he has told me to double up on them ,which I did last night ,I had a bit more sleep with doubling up ,but he said to try for a week ,and let him know ,

    I know theydon't like you staying on them long.

    How long have you had PMR and been on prednisolone

    Regards

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