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Just diagnosed with PMR

Posted , 9 users are following.

maria60849
maria60849

I'm a 64 year old female, with no major health issues till Feb of this year when one morning after getting out of bed my legs were very painfull, I put it down to doing a major clean up job on the bathroom two days earlier, thought it was just muscle pain. After about 6 weeks I thought I should see my GP as the pain was getting worse. After a CT scan was told I had a disc bulge, no treatment just pain killers, few weeks later was told I had bursitis in my shoulders as I was having mega pain in both arms, two injections later and no relief. A few weels after, had an ultra sound on my wrist as I was having severe pain, was told I had carpal tunnel, another injection but not much relief. Finally went back to my GP (saw a different one in the practice) he sent me for blood test which confirmed his diagonsis, PMR. 

I am now on 25mg of Presnisone (two weeks now) no pain and am seeing a rheumatologist in a few days time. 

The reason for my post is that I have heard and researched Boron and want to know if anyone has or knows of anyone that uses Boron for PMR. I asked my GP who said he had not heard of using it as an anti-infammatory but would look into for me but not due to see him till some time after seeing the rheumatologist.

I don't want to be on steriods for a long period and. I'm taking tumeric, mega doses of Vitamin D, and C.

I would really love to hear from anyone going throught the same or gone through and what has worked for them.

Thanks for reading my post.

 

0 likes, 40 replies

40 Replies

  • donna60512
    donna60512 maria60849

    Posted

    Oh, so sad that the doctor didn't do a blood test in the beginning and made you go through all of those other tests.  My doctor did do the blood tests immediately.  He did send me for x-rays as I had taken quite a bad fall a few weeks before all of the pain.  The x-rays did show a tear in my left shoulder, rotator cuff.  A shot of cortisone has really alleviated that pain.  I am sure the pain will come back in a month or so.  Based upon the blood test, my primary sent me immediately to a rheumatologist who did a lot more blood work and determined that it was PMR.  From what I see on this forum, I was very lucky to get treatment much earlier than most.  I would be interested in the boron.  I have not heard of that.  I am always very leery of mega doses of any vitamin.  As I understand it, C is just excreted out, and Vitamin D in mega doses could cause other problems.  I hope that you will be well.

  • Anhaga
    Anhaga maria60849

    Posted

    So sorry you've joined this club no one wants to be in.  The best way to reduce your total intake of steroids is in fact what you are attempting, which is to improve your general health so that when the time comes to taper you'll be relatively successful.  Just addressing what you're already doing, make sure when you consume turmeric that you also have a little black pepper as the piperine has been shown to improve the bioavailability of the anti-inflammatory componentof turmeric.  Mega doses of D may or may not be a good idea.  Be careful.  It's one of the fat soluble vitamins, unlike C, and can build up in the body.  

    Make sure you're also getting some magnesium either in your diet or as a supplement.  Calcium always takes precedence - it interferes with the uptake of other nutrients, like iron as well as magnesium, and also should not be taken within two hours of your prednisone dose.  I've started taking my iron and iron rich foods early in the day, calcium and calcium rich foods later, and every second evening a magnesium capsule with a bedtime snack.  This supplement thing is a moving target.

    When the pain has gone you feel so much better it's easy to overdo things.  Remember, the pred has not cured you.  It has only damped the symptoms.  You still have to treat your body with care.  Exercise is good, but not extreme exercise.  Whatever activity you do, whether physical or mental, even something as apparently relaxing as tea with a friend, balance that time with rest time.  It really is not coddling yourself to be that careful.  PMR is by no means the worst thing we could have, but it is a serious condition, and its treatment is a serious medication.

    One other supplement you should take is Vitamin K2, which helps calcium go into the bones, rather than be deposited on the walls of blood vessels or in organs where it's not wanted.  Not K1 which we get from leafy greens.  We may get some K2 from fermented foods, or from completely grass-fed animals, but usually we need a supplement as the modern food supply is severly deficient in this vitamin.

    And when the time comes to taper, slowly, slowly is best, no matter how fast the doctor wants you to come off pred.  Lots of experience and advice in this forum!

    • Anhaga
      Anhaga

      Posted

      oh yes, boron.  Apparently for bone health the amount of boron in five prunes is enough.
  • ptolemy
    ptolemy maria60849

    Posted

    Hi Maria, I am so sorry you have been diagnosed with PMR, but at least you now know what you have. At the end of the day steroids are the only answer to PMR, although people are always saying they don't want to take them and are looking for an alternative. In the end they all seem to give in due to the awful pain of PMR. Steroids are actually a wonder drug, unfortunately with side effects. People try various supplements, I am not sure how well they work although turmeric is supposed to be good. I put it in everything, but am not sure how much difference it makes. If you want to take suppements you should check with your pharmacist as some are counterindicative with pred although I should imagine Boron should be OK. Also be careful not to overdose on supplements such as vit D and calcium. 

    None of us want to be on steroids for a long period but PMR makes the decision for us. It is life changing and we need to arrange our lives around it. 

  • faye______00403
    faye______00403 maria60849

    Posted

    ADEK are the vitamins that are not thrown off like vit. C..also want to

    be careful about too much calcium....calcium stores in the body in places

    you don't want it.....like kidneys.....check with doc about amounts of

    these vitamins.....

    None of us want to be on steroids for a long time.  It's been three years

    for me and I'd love to at least get down to a low dose. 

  • maria60849
    maria60849

    Posted

    Thank you all so much for your kind words and advise that I will take on board. 

    Pain is such a private thing and those around can't appreciate how one feels with constant pain. It's comforting reading everyones experiences  with PMR.

    I'm so glad I found this site and able to read and understand more from everyones different circumstances and how this debilitating affects everyday life for others.   

  • FlipDover_Aust
    FlipDover_Aust maria60849

    Posted

    Unfortunately prednisone is the ONLY thing that treats the symptoms of PMR. You can of course, help yourself with supplements and a good diet of real, healthy food.

    You simply have to come to terms with the fact you will be on pred for as long as it takes. If you're lucky - 2 years - otherwise up to 10 years - of more. 

    Your life has changed and it will take time to get used to the idea.  

    • maria60849
      maria60849 FlipDover_Aust

      Posted

      Gee thanks FilpDover Aust cry I don't want to be on prednisone for more than the next couple of months. I'm hoping the rheumatologist can give me some good news tomorrow after seeing my blood results. I'll be happy if he says we could try reducing the dose. Some have said they are as low as 8mg which is a great deal less than 25mg.

      I feel so umcomfortable if I put on even half a kilo, don't know how I would go being the size of house eek

      I'm not seeing a great change in my life as yet but if I have to continue for years, you are right I will have to get used to it but I'm willing to try anything.

      Thanks for your advice.

    • Anhaga
      Anhaga maria60849

      Posted

      Maria, my doctor didn't tell me prednisone wasn't a cure, that all it would do is manage the symptoms of pain caused by an inflammatory autoimmune condition.  After my miraculous "cure" within three days, I calculated that following the reduction plan she'd given me I'd be all finished in three months from start to finish.

      Then I learned otherwise.  However, a year on I've achieved a pretty low dose, mostly through doing the types of things you are:  diet, appropriate exercise and, don't forget - very important - enough rest throughout the day.  It's no fun having a condition which slows you down but there are advantages too.

      BTW it's not inevitable that you will put on weight.  If you are very strict with the carbs you eat you can hold any weight gain to a minimum.  I haven't gained back more than three lbs of what I'd lost prior to diagnosis.  Others put on a bit but find it comes off easily as they feel better and can exercise more.  We're all different and you will find your own way to manage your condition, but take heart.  Here you are among friends who understand!  ??

    • faye______00403
      faye______00403 Anhaga

      Posted

      I'm looking for the poster that mentioned serepetise and would like

      more info on that.  I looked on Amazon and am very curious about

      this product....I can't find  that post.....

    • Anhaga
      Anhaga

      Posted

      A description of it looks kind of interesting, actually.  Not so much for PMR, but apparently it can break down biofilm created by bacteria.  I wonder if it could be useful for treating sarcoid granulomas?
    • faye______00403
      faye______00403 Anhaga

      Posted

      i was looking at it for sinus problems....look on Amazon

      they have it and the usual infor and comments on how it works

      or doesn't work.

    • maria60849
      maria60849 Anhaga

      Posted

      Thanks Anhaga

      I had my appointment with the rheumatologist last Thursday and I was quite happy with what he told me, he gave me a really good check over and reduced my dose to 15mg for 3 weeks and a plan for the next 12 weeks by then I should be down to 9mg. He was happy with my blood tests and doesn't think I have many problems.

      Yes I'm watching my diet and exersing a little more. I don't get much time to rest during the day but I do get up quite late, sometimes not until 11.00 so I'm very refreshed for the rest of the day. I find if I get up early I do need to rest later.

      Thank you so much for your encouragement biggrin

    • Anhaga
      Anhaga maria60849

      Posted

      Sounds good as far as it goes.  Starting at about the 10 mg spot you may find you'll have to slow down the taper.  That is actually when I needed to start the dead slow taper.  I was fine to 10.  9 was a step too far, but after going back to 10, doing the shorter version of dead slow, I've reduced fairly steadily to about 3.  I am not quite sure if 3 is enough.  I may have to up the dose to 3.5 but I'm waiting a bit longer to be sure.  If there is no increase in my discomfort over the next couple of weeks I'll stay here for a bit.  If the discomfort gets worse, more like the old PMR, I will certainly slide up a little bit for a while before trying to reduce further.  My doctor told me about ten weeks ago that she was happy with me at 4.  smile

      You'll be able to tell if you need to slow down your taper because pain will increase a bit day by day at a certain level.  Steroid withdrawal starts almost right away and gets better as the days go by.

    • donna60512
      donna60512 Anhaga

      Posted

      I am still at the original dose of 20 mg.  I reallhy wanted to go down to about 18 for a while but have not been able to get in touch with my doctor to get him to send in a prescription for one of two mg tabs.  I could go to 15 on my own since I can split a ten.  From what I keep reading getting below ten is the tricky one.  Do you think that I dare just jump to 15 on my own???  I am taking a road trip with my daugther next week and do not want to be in pain. I am pain free at this dose now.  Sure would like some answers.  I am annoyed that my rheumatologist didn't get back to me last Monday, but then I am to blame too as I did not call again after my one call..  I have been on the 20 mg for about 8 weeks or maybe a little less.  Have I been on that for twoo long????  Thanks, Donna

    • Anhaga
      Anhaga donna60512

      Posted

      I know what the experts will say.  Do not mix a reduction with a holiday!  I suggest that if your road trip is not a terribly long one (are you going to be away a week, or six months?) you wait until you get home.  And don't drop by 5 mg all in one go.  I actually started at 15, and after about 5 weeks started my taper, but my doctor advised by 1 mg per week.  Which was fine till 10.  In your case you may be able to drop by 2 mg as you anticipate until getting to 12 or 10.  The recommendation is never to drop by more than 10% at a time.  The lower you get, the slower you'll need to go.  It took me about five months to get to 7 from 15, and it's taken about seven months to venture, rather cautiously, into 3 mg territory from 7.  And by all accounts that is a fairly brisk reduction.

    • donna60512
      donna60512 Anhaga

      Posted

      Thank you so much.  We will be gone for one week.  We will travel about five hours or a bit more a day.  It shouldn't be too stressful.  My daugher will be doing the drivng and we have no time zone changes.  I might give the doctor another call and just see if I can get the prescritption so of ones or twos so that I can try 18 for a couple of weeks.  I will see him on August 8th.  I just wanted to try to do a taper before seeing him.  If I do this, I will not go below 18.  If I have a flare, I will go right back to the 20 until I see him.  Yes, you have done very well with your reduction.  I am eating well, trying to stay actice mostly with long walks.  I started the Vitamin K2 and take magnesium and other vitamins.  I try to get adequate rest, so think all is going well.  I appreciate your response.  Thanks, Donna

    • donna60512
      donna60512 Anhaga

      Posted

      Hi Anhaga, me again.  :-)  I just spoke with the receptionist at my rheumatolist's office.  Well, wouldn't you know, he is on vacation until August 8th.  That is the day of my next appointment.  She read off my message from last Monday.  I guess he did tell the girls what to tell me, but no one called.  Grrrr.  Anyway, she said that he will not do a slow reduciton until I get to 10 mg., then he will.  She added that because I am on Methotrexate that it wiil help me to go down by 5s until I reach 10.  So I have taken my 10 mg with breakfast.  I told her I would take 5 with dinner and continue on that for two weeks.  She said he wants me to be at 10 when I see him.  I told her I would do that, BUT if I have a flare, I am going to go right back up.  She said that was fine, and said she was sure I would be fine because of the Methotrexate.  I actually feel wonderful.  My blood work for my primary was good, will have my blood work bfore I go on the 8th.  I have had absolutely no side effects from either med.  I was most concerned about hair loss.  I have had none and my hair seems healthy.  I do take hair and nail vitamins along with all of my other vitamins.  So, I will let you know how this works out.  At least I will give it a try and let him kmow how I do.  I don't know when he will take me off of the Methotrexate.  That will be my question for him when I see him.  Thanks again for your help.  Donna

    • ptolemy
      ptolemy donna60512

      Posted

      My rheumatologist only gave me 5mg tablets at 20mg, I tried to reduce to 15mg with disastrous results, I then started to alternate each day between 20mg and 15mg which worked OK. You could even do more than one day on 20mg and then one day on 15mg, etc.
    • donna60512
      donna60512 ptolemy

      Posted

      Were you taking Methotrexate?  I really appreciate your comment.   At least I have enough to last me at 20 until my appointment if I have pain.  At the first sign of that horrible pain again, I will go back up.  Stiffness has never been a problem, it was always horrible pain, particularly in my upper arms and shoulders.  So mostly want to know if you take Methotrexate.  That seemed to be the key when I spoke to the rheumatologist's office.  Thanks Donna

    • ptolemy
      ptolemy donna60512

      Posted

      No I was not offered Methotrexate by my rheumie. I was never really convinced how well it worked, but it may just be me being suspicious. I still think of that dreadful pain when lying in bed, I could not even scratch my nose without being in agony. In fact the pain was so bad I never was aware of the stiffness they kept talking about.
    • donna60512
      donna60512 ptolemy

      Posted

      Okay, I am told that the Methotrexate will be the key as to why I can go down by 5 until I reach 10.  As I have said, I am totally pain free and theMethtrexate has not caused me any problems at all.  I would rather get off of the steroid as that is the one that really scares me.  So, I think that I will go ahead and do the 5 mg for two weeks and see how it goes.  I will never forget the pain either. Turning over in bed, adjusting the bedcovers, any movement at night was pure agony.  Never had stiffness at all.  The prednisone and the Methotrexate have been miracle workers for me.  I have a dear friend who was diagnosed at the same time as I was.  She also took the Methotrexate with no problem and has already reduced to 10 mg wiht no problem.  We would compare our pain on a daily basis.  I just hung in there logner than she did on the higher dose.  If was look at most meds, the side effects can be deadly frightening.  I prefer not to read all of that as I would be afraid to take anything.  Thanks, Donna
    • ptolemy
      ptolemy donna60512

      Posted

      Hi Donna, if you look at most drugs they can have pretty horrific side effects. You will be on steroids for a while, usually at least two years, it is not a matter of reducing to zero it is finding the lowest dose to alleviate the inflammation caused by the PMR. Hope you reduce OK. 
    • donna60512
      donna60512 ptolemy

      Posted

      I figure that I will be on the prednisone for a couple of years.  I am just eager to get down to a lower dose.  If the Methotrexate helps me to do this, then that is what I am willing to do.  I think it is maybe choosing between the lesser fot wo evils.  I love the comments that I get from all of the people here, I just refuse to read all of the side effects of the meds that will most likely help me to live normally.  I am back pretty much feeling the way I did before all of this started.  I am active and doing well.  I am 79, so feel that all is pretty good for me.  I have not gained any weight, so that is good.  I do watch what I eat and have always been into a healthy, active lifestyle.  If I read all of the horros of things, I might suddenly be feeling all of those things.  Ha Ha  Have a good day.  IF I have pain, I will go back up.  I am not big on having pain, not a masochist (sp)  Donna
    • Anhaga
      Anhaga ptolemy

      Posted

      I remember that it was the pain which prevented me from doing things.  I too did not describe it as stiffness.
    • Anhaga
      Anhaga donna60512

      Posted

      All the best.  If the mtx helps you should be fine, but as you know many of us have no experience of this - it is or, until recently, was offered mostly to people who'd been on steroids for a long time and having difficulty reducing.  If just on pred, 5 mg would have been a 25% reduction.  Then going  further to 10 is a 33% reduction, so without help that would almost certainly cause a flare.  Please let us know how you get on because I'm sure there will be many people anxious to find out if the mtx does in fact reduce the time it takes to reduce from 20 (or higher) to 10!

    • FlipDover_Aust
      FlipDover_Aust donna60512

      Posted

      I'm on MTX and was able to drop by 5mg at a time without any problems at all  in fact the more I dropped the better I felt. I went down from 20mg to 10mg in 5mg drops and then went to 1mg reductions. Down to 5mg and holding as I've had a virus.

      I'm with you - I'll take the MTX if it helps reduce the pred dose.

    • donna60512
      donna60512 FlipDover_Aust

      Posted

      Thank you so much, FlipDover!!!!  I have had absoluitely not problems with the Methotrexate.  I am so happy to read somehting positve on that.  I am really eager to get down on the prednisone.  I do not like what I keep reading about the adrenal glands, etc., etc., etc.  I have been feeling really good.  I have been taking 10 at breakfast and 10 at dinner.  I just had dinner and took 5 mg, so I am on my way.  I sure hope to be able to get down on this sutff as soon as possible.  It the MTX helps me to do that, then I am all for it.  I really appredciate your feedback.  :-)  Donna
    • FlipDover_Aust
      FlipDover_Aust donna60512

      Posted

      I've had no problems with the MTX other than the odd wave of nausea and feeling a bit tired the day after I take my weekly dose. I started taking it back in Decmeber, so I have six months under my belt already.

      I did start to feel tired at the 5mg dose and my own Rhumey said I was "lucky" as most people started to feel tired at the 7mg mark - where the adrenals have to start working again. I just slowed down my reduction and I seem to be coping fine - sleeping less.

    • donna60512
      donna60512 FlipDover_Aust

      Posted

      My biggest worry about the MTX was the possible hair loss, so far absolutely no reason to worry about that.  I have had no nausea.  I take 30 mg (6 X 2.5) eqach Monday.  Then on Tuesday I take 5 mg Leucovorin, that is the one that is supposed to counter the side effects, so just Monday and Tuesday on those.  I have been totally fine.   I just want to get away from steroids.  I have had no side effects from anything that I can see.  I was concerned about weight gain, although I am failry thin, so not a big deal.  I have actually lost a pound, so all well there too.  I will keep the tired part in mind when I hit 7 mg.  You said you started the MTX in December.  Is that when you were diagnosed?  I was diagnosed in May.  My diagnosis was pretty quick, thanks to a doctor who was on top of things.  
    • FlipDover_Aust
      FlipDover_Aust donna60512

      Posted

      I was diagnosed 12 months prior to starting MTX - so Dec 14. I've had PMR for over 18 months now. My hair has turned very wavy! I take 20mg MTX followed by 3 x 15 mg for three days.

      I've put on an enormous amount of weight - mostly my own fault, I've been comfort eating. Idiot that I am.

    • donna60512
      donna60512 FlipDover_Aust

      Posted

      Hmmm wavy hair that is interesting.  I use a flat iron, so dont' think I want that.  LOL  I just watch my weight.  Everything in my closet fits, and I didn't want a new wardrobe.  Was there a reason for starting the MTX a year after diagnosis?  My rheumatologist started me on it from the beginnig.  I did wait two weeks as I was going on vacation to the beach with my daughters and didn;t want to worry about side effects.  So, I have been on the prednisone since early May and have been on the MTX for five weeks now.  Hope all conitnues to go well for you.  It looks like you are in Australia.  I am in California.  

    • FlipDover_Aust
      FlipDover_Aust donna60512

      Posted

      I was doing ok on just pred for the first six months or so and got down to 11mg daily, Then something changed - I don't know that it was a flare - it could have been - and I ended back up taking 20mg pred a day and feeling awful. I was a zombie. The pred just wasn't working any more. My GP referred me to a rhuemy at this point who put me on MTX and I haven't looked back.

      Yes, in Australia, Canberra, the Nation's capital. And I can tell you it's bloody cold here!

       

    • donna60512
      donna60512 FlipDover_Aust

      Posted

      I would love to visit Caberra, but not in the winter.  :-)  I can tell you that I live near Palm Springs, California and it is bloody hot here right now.  It will be 100 degrees tomorrow.  Thank you for your explanation of why you were put on MTX later. I am hoping that it will be smooth sailing for me.  
    • donna60512
      donna60512 FlipDover_Aust

      Posted

      I live near Palm Springs, CA.  It is bloody hot here right now.  LOL  Thanks for the explanation of why you were placed on the MTX later.  I am hoping for smooth sailing here.  
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