Newbie with concerns

Posted , 11 users are following.

I was diagnosed with PMR three days ago after 6 months of pain and wondering what the hell was going on with my joints and muscles. I couldn't even put my own socks on! This great Doc diagnosed me within 2 mins and I took my first dose of pren this morning (15mg per day). Within 6 hours all my pain has vanished. Such a relief. I know I have to take it for 2 years but that doesn't bother me. I have tried to find out if it will affect my alcohol intake. I can find no advice anywhere. One pharmacist said none and I laughed another said in moderation. As Christmas is approaching guess i will take the second opinion. Is there anything natural I should be taking to help the cure. and also to prevent the Osteoperosis? All advice gratefully accepted.

0 likes, 26 replies

26 Replies

Next
  • Posted

    Hey Glyn - it's Christmas!  How many of us do you think won't have a tipple or two?  As you say "everything in moderation"!

    Also, welcome to the club of PMR.  Great place to be, isn't it?  But we are a friendly lot and you will get all the advice/help you need on here.

    Have a great Christmas.  🎄🍷

    Constance.   

    • Posted

      Hi, Constance your post which I am reading one week later put a smile on my face, it was like a breeze if fresh air!!!

      Thank you for that - you are a blessing in disguise.

      Cheers!

      Happy New Year!

      🎉🍾😊

  • Posted

    There are a bunch of questons in your post and I'll leave most of them for the experts to answer.  Regarding bone health, you should have been advised to take calcium and Vitamin D3.  At the very least, to that you should add a few other micronutrients that are essential to maintain the health of your skeleton, principally magnesium and vitamin K2 (not K1 which has little help for the bones and is readily available in a healthy diet anyway).  There are others.  Vitamin K2 is of particular concern as it is the vitamin that makes the calcium go into the bones, not get deposited on the walls of your blood vessels, and nearly everyone in the Western world is deficient in it owing to our corrupted food supply.  And although you are now feeling much better, don't overdo things!  A little appropriate exercise is good for your bones, though.  Have a happy holidays and I bet most people here will say as long as you don't have bad personal effects the odd glass of good cheer is not going to hurt you as long as you stay well hydrated.  BTW I didn't know this to start, and in case you don't, make sure you take your calcium and pred a few hours apart as they actively interfere with each other.  
  • Posted

    My best advice is to get whatever kind of exercise you can twice a day, and would avoid alcohol as much as possible.

    I'm at two years now, and now below 5mg/day, but I have a ways to go yet.

    PMR's core symptom is vasculitis, which is reducing blood flow to your joint's soft tissues, especially at night.  Exercise tends to cause vaso-dilation, which counters the vaso-constriction of blod vessels caused by PMR's auto-immune activity.

    You will be trying to reduce your daily pred dose, but will need to learn the somewhat time-delayed cause/effect nature of prednisone dosage and your pmr symptoms, while hopefully avoiding the most critical symptoms like sleep loss, fatigue and joint flare-ups that mimic common rheumatoid arthritis. I also went through a period of tender soles of my feet, so there are quite a few symptoms that may spring up over the next couple of years.

  • Posted

    Hello glyn, welcome! 

    I don't know the reduction plan you have been advised but look up the Bristol pmr plan. 15mgs for 6 weeks, 12.5 for 6 weeks then 10mgs for anything up to a year. I took 10mgs for 6 months. Then I abandoned the Bristol plan and use Eileen's dead slow and almost stop reduction plan and only ever reduce by .5mgs. 

    You should definately be taking daily RDA amounts of vit d (I get that from my cod liver oil capsule), calcium and magnesium. These 3 supplements will help fight any bone loss caused by the preds.

    i stopped taking omeprazole, which had been recommended by my GP to protect my stomach from the steroids. I now take yogurt, alpro almond milk (original, NOT sweetened, and only About 2 inches in a glass, and 1 slice of toast, That is plenty to protect and line my stomach.

    also don't be pushed into taking alendronic acid unless you've had a dexa scan. Your bones may not be weak and therefore AA is not needed, plus the supplements will help to prevent any bone thinning.

    you must not be tempted to overdo things on the days that you feel well because fatigue will set in and you will feel rubbish for days until your body has perked back up again.

    when you reduce don't confuse withdrawal with a flare. Withdrawal is when your body gets use to a level of preds then throws it's dummy out when you reduce the dose. It will soon get use to the new lower dose and these pains will soon get better. A flare is when the level of preds is too low to keep the current amount of inflamation under control and hence the pain. If this happens when you have made a dose reduction and the pains get worse daily then that's the beginning of a flare and you should up your preds back up to the dose that you were comfortable at prior to the reduction.

    any queries, do air them on the forum. There's more than enough of us that that have probably experienced your query too and can offer some advice.

    just a word of advise, pmr is very unpredictable. Your road to recovery may not run smoothly, hopefully it will but it may not. Pmr cannot be cured and even when it is not active, it will still be there dormant. 2 years to achieve full recovery may be a little optimistic, I hope not but I it may be. I have been diagnosed with it for 2 years now but had the symptoms for 4 months prior to diagnosis. I have suffered one flare attempting a reduction from 9-8mgs this time last year. I started at 15mgs and am now on 6.5mgs, so even if I don't have another hitch it will still be a year before I reach zero.

    good luck glyn. Regards, tina

  • Posted

    Theoretically, the instructions are not to drink with prednisone - it is also processed by the liver.  They tend not to say that with prednisolone which isn't processed by the liver. Many of us do drink in moderation - I haven't crumbled yet and my GP has never said not to drink but then, I live in Italy! 

    "I know I have to take it for 2 years" - if you are lucky, Five years is a more accurate estimate of the average - and that of course means some are longer, some are shorter. But the literature suggests that only about 25% of patients are able to stop pred in 2 years or less. Half take something like 4 to 6 years. Some of us take even longer. 

    There is nothing natural that has been reliably shown to help - the underlying autoimmune disorder that causes the symptosm we call PMR will probably burn out sometime, nothing has been found yet that speeds that up. many people include natual antiinflammatory foods such as oily fish, turmeric and garlic and so on and say it helps, I can't say I've found anything - although cutting carbs a lot does appear to help avoid weight gain.

    In terms of osteoporosis - it isn't certain you will develop it because of pred and more than half of patients don't. You should have been given calcium and vit D supplements to take anyway. You should have a dexascan done to see the current status of your bones - and if it appears sensible because you are already osteoporitic or close to it maybe other medication may be useful. I take calcium and vit D - nothing else and my bone density didn't change over a period of nearly 4 years.

    Here's some reading - including the "Bristol paper" mentioned and my slow reduction plan (in the replies):

    https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316

    When you've looked at it - come back with any specific questions you may have.

    • Posted

      Brilliant and sensible comments, Even with a non medical background I understood your comments. Living in Italy must be a bonus. 

      Buon Natale

    • Posted

      Thank you - that is the aim I always have. Jargon remains jargon even when it comes from your family doctor - I've been a translator of German to English for many years and I also do it for medical language.

      Living in Italy is a bonus in a LOT of ways - especially the weather rolleyes compared to the UK. We live in the German speaking region South Tirol - so Frohe Weinachten!

    • Posted

      I envy you. Lived in Germany with my parents in Gutersloh and worked extensively with the RAF in Germany and Italy. Now retired so I have to pay my own way.xxx
    • Posted

      Hi Glyn.  We live in Soest.  If you were attached to the RAF you probably know it.

      It's cheaper to visit Germany than it is to visit the UK nowadays, so paying your own way wouldn't make too much of a hole in your pocket.

      🎄🍷

    • Posted

      We lived in Erlangen, near Nuernburg, for 10 years - American sector then. My husband worked at the University - but conducted American church choirs which kept body and soul together on his rather meagre grant at the time!  But we had some spare money some years ago when we'd already moved to England from Scotland and hadn't been able to sell the Scottish house - so we let it for several years, getting another mortgage for England - and bought ourselves a 3 room flat here with the left-vers when it had gone up quite a bit in value from when we'd bought it. Now we live in it - and the English house is let. Others in the family have large houses worth more than all ours combined which we let to give us an income. The bigger the house - the more there is to clean!

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.