PMR

Posted , 11 users are following.

Good evening from Indiana, I saw my Rhuemy today uped my Pred. to 20 ml also has ordered new blood test and I am being tested for so many thing. I dont undrstand all that but one was Hep C. scared me as I have never been exposed that I know of. Also put me on a medicine called paquenil or something like that. Started to pay for it and it was 200.00 dollars with insurance I couldnt afford that. so now back with Pred. only. Anybody else ever been prescribed this? Anybody Elase ever had to have all this blood test?

0 likes, 17 replies

17 Replies

  • Posted

    What was happening? What dose pred were you on previously? What is paquenil supposed to do for you?
    • Posted

      Yes I am new to this 10 ml. of pred. to start off now 20 but going to try 15 first and see if that works
  • Posted

    Hi Phyllis,  l live in the US, too.  Plaquenil is for Rheumatoid Arthritis, and it is expensive, unless he can prescribe the generic replacement which is called Hydroxychloroquin (sp.?).  I took it  for years for RA until I was diagnosed with PMR last year. Did he test you for RA?  Plaquenil or the generic version does nothing for PMR only Prednisone helps for PMR pain.  Prednisone does help for RA flares when they happen.

     

    • Posted

      No erika, wasn't diagnosed with it but GP put me on the 10 and sent me to the Rhuemy.
  • Posted

    Hello Phyllis, sorry to hear that you are not too good. Please let us know why your consultant upped your preds, how long you have been on them fir and what was your tapering regime, if any. The only reason I can think of as to why he upped them was because you weren't on a high enough dose to control the inflamation that's causing your pain, are you at the beginning of your treatment plan or have you reduced too quickly and the result being a flare.

    yes, it is very normal for patients to under go numerous blood tests. I was tested for hep c, and loads of other conditions. Because the symptoms of PMR can be attributed to so many medical conditions, blood tests help rule out many illnesses that we could be suffering from, then if we respond to preds then the diagnosis of PMR is concluded.

    it is possible to be suffering from RA and PMR but your consultant should have explained that he believes you also have RA. RA is often diagnosed by blood test (among other ways, x Ray, etc) and I understand there are various drugs that can be prescribed for that, but preds is the only drug that can control the inflamation that causes PMR.

    phyllis, do give us some more info please. All the best, christina 

    • Posted

      I am sorry, I should have been more detailed. I have just in the past 3 weeks been prescribed 10 ml of Pred. It wasn't enough to control pain but made it more bearable. I did suffer for 2-3 months without going to GP, my sed rate was 40 not so bad or at least I don't think so. Hopefully this will do it. I am new to this disease or whatever you call it so I am not too educated on it and I am glad I found this forum. I know you all have suffered and are still doing so. I am not a whiner just didn't understand all this. Thank all of you for your information, if you have more please don't hesitate to reply. Yes Christina, I am just a starter with a long way to go.
  • Posted

    PMR is not the disease itself, it is the symptoms of an underlying problem. There are many causes of the symptoms and the other, often nasty, causes should be ruled out before coming to the conclusion it is PMR as we mean it on this forum. So doing a whole range of tests IS reasonable enough - but in the UK most of them would have been done by your GP, some can't be ordered by them and a rheumy would be needed but there would be a reasonable suspicion on the part of the GP to send you to a rheumy.

    Testing for HepC is reasonable enough as part of a battery of tests for these symptoms - you may know you haven't had a needle stick injury, inject drugs, infected blood transfusion or had unprotected sex but doctors are notoriously sceptical and while there is a very low risk with some, very low isn't none. The other tests are also good in that sense - they may identify other forms of arthritis or other illnesses.

    As the others have said, Plaquenil is normally used for RA - but there are doctors who hold the belief that it is one of the DMARDs (disease modifying anti-rheumatic drugs) that enhance the effect of pred so you can get away with a lower dose to get the same effect. Unless you have LORA (late or elederly onset RA) as well I (and a lot of others) don't believe they make a lot of difference and anyway it is better to stick to pred to start with and reduce sensibly - very slow reductions have allowed a lot of people to reduce their pred dose much further and more easily than using the reduction schemes many doctors want to use. There are no publications that show under controlled conditions that any of them reliably reduce pred dose - it is mainly annecdotal.

    Since you are in the US, the whole system is different - and in the UK we wouldn't be given Plaquenil, it would be hydroxychloroquine, the cheap generic version and we also wouldn't have to pay for it - covered by state medicine. No doubt your rheumy has had visits from a drug rep from the house of Plaquenil! Wonder what incentives he gets for using it rather than a generic? Cynical? Moi?

    Once he has the reports and makes a decision as to what he thinks it is you can look again at what you are taking. If he says it is PMR and nothing else - pred is enough to manage it until there is any indication you can't reduce the dose to a low level. Do it slowly and carefully and you should be able to get it well below 10mg - and pred is cheap as chips. The aim is to combat the existing inflammation and then reduce to the lowest dose that achieves the same result - you don't stay at 20mg and in the UK most start at 15mg which is more often than not enough.

     

    • Posted

      Eileen, You sound very up to date on this PMR. So glad I found this site. Anything you can educate me with would be much appreciated. Thank you. Oh, I am going to try 15 ml of pred to see if it helps before jumping to 20.
    • Posted

      Yes, I think that trying the 15mg is a good idea - once the existing inflammation is under control then you can start to reduce slowly - the usual approach is 15mg for 6 weeks and then take it from there.

      If you follow this link

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

      you will find a post that has a load of links to reliable and medically approved information and websites and, in the replies section, the description of a slow reduction plan that has been successful for many patients in getting to a much lower dose. There are two other forums as well and the forumup one has a section in it with old posts and explanations that other people said they had found useful - so they were collected under the title "Eileen's Input". We can't give direct links except within this site without them being captured for moderation so these have all been pre-approved to make things easier.

      Just ask about anything you aren't sure about - there are loads of people around who will have an answer. Those of us in the UK don't have to worry about our insurance covering the costs - but we still have tips and tricks that help us through the day and make the most of our medication. And there are plenty of people from your side of the Atlantic on this site too! 

    • Posted

      Hello Phyllis, thank you for all the info. Yes your Dr did not originally prescribe nearly enough of a preds dose, 15mgs should be enough as a first dose, however some patients do require 20mgs as a first dose.

      it is important to then stay on this dose and every subsequent dose for a good four to six weeks. Please look up the Bristol PMR plan, that reduction plan is the gold standard until reaching 10mgs. 15mgs, 6 weeks, 12.5, 6 weeks, 10mgs, 6 weeks, then it's a slow and almost stop tapering therein. Many of us follow Eileen's go slow and almost stop method, which is,

      1 day new dose, 6 days old

      1 day new dose, 5 days old

      1 day new dose, 4 days old

      1 day new dose, 3 days old

      1 day new dose, 2 days old

      1 day new dose, 1 day old

      1 day old, 2 days new

       1 day old, 3 days new

      1 day old, 4 days new

      1 day old, 5 days new

      1 day old, 6 days new

      then all new. 

      I follow this regime but I don't reduce by 1mgs, I only reduce by .5 mgs.

      preds will treat the PMR, (not cure because there is no cure). 

      the most important thing to remember is you cannot rush PMR therefore it's important to always take a dose that's large enough to control whatever inflamation you have at any given time, so don't let your Dr reduce you too quickly because if your dose is not enough to control the inflamation you are likely to suffer a flare, then you gave to up your dose of preds.

      many of us also take vit d, calcium and magnesium supplements, RDA amounts as these supplements help with our bones etc, that a huge knocking during our time on preds.

      all the best, christina 

  • Posted

    hi Phyllis, Dan here. I was on Plaquenil for 2 months. I have PMR, effectively treated with low-dose prednisone. The Plaquenil was not effective for me. It caused extreme light sensitivity and actually got sunglasses for that. Then light sensitivity caused my Rheumatologist to discontinue the Plaquenil and vision returned to normal. I believe Plaquenil is used when they are unsure if the symptoms are caused by PMR or late onset rheumatoid.the Plaquenil was ineffective for me. Good luck on your quest.
  • Posted

    Hi Phyllis, here are the diseases that i was tested before I was given the PMR diagnosis (which my rheumatologist is still not sure I have).  These were ruled out: RA lupus, scleraderma, Sjogren's, connective tissue disease, multiple myeloma, mixed connectie tissue disease ,myositis, HIV, hepatitis B and C, Epstein Barre (CFS) and lyme disease. All were negative. 

    One rheumatologist mentioned that MAYBE I had LORA, Late Onset Rheumatoid Arthritis, and suggested I add Plaquenil too, but I declined because of the effect it can have on our eyesight.  I figured that I would try the prednisone only and see if my pain improved before I added such a scary (to me) medication.  For me I think that was a good decision that I can reevaluate later if I need to. I am beginning to think that rheumatologists like plaquenil and feel like they are doing their duty by prescribing it. 

    Well, I just wanted to share all the 'rule out' diseases I was tested for with you.  Hope you will find your way through the PMR.  This is the place to learn so much - it is a blessing that this site is available.  Best of luck to you and keep asking the ladies here on the forum for guidance. 

    .

     

    • Posted

      Thank you so much Padada, I feel better knowing they test you for so much. I too am glad I found this site have learn so much just by reading. My Rhuemy prescribed 20 mg of Pred. but trying to get away with 15. I still have a little pain and dont know if i should up to the full 20 or stay where I am.Again thank you anymore knowledge I welcome
    • Posted

      15mg will just take longer to achieve the effect - once the symptoms are controlled and the residual inflammation gone you will reduce anyway - to well below 15mg it is hoped.
  • Posted

    Hi Phyllis,

    Never had the Hep C test. Maybe it was because of your fatigue or ???  I'm sure Eileen will have the answer for you.

    I've been on pred for 2+ years and recently had a flare that resulted in me having to increase to 10mg from 4mg.  My Rhuemy suggested paquenil to help mr lower the dose of pred. faster.  I said no because I'm already on a number of meds and didn't want to add any more.

    • Posted

      Got my last B/w back yesterday. No inflamation and all other good except Thyroid a little off. So no inflamation...why still have shoulder pain? It is not unberable but with no inflamation I thought it would all be gone. This is very frustrating to me. I try to educate myself on this but there are a lot of other things that can mimic this PMR. No inflamation ..no pain Right? Or can there be. I have heard of people having normal sed. rate and still in pain. rolleyes
    • Posted

      It is possible to have inflammation that doesn't show up on the ESR - and there could be other damage besides the PMR. Any bursitis will take much longer to fade than the muscle pain and stiffness - simply because the tendons and bursae don't have a good blood supply.

      If it doesn't improve ask your doctor to consider a cortison shot in the shoulder area.

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