PMR
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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
pam41628 phyllis10549
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phyllis10549 pam41628
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erika59785 phyllis10549
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phyllis10549 erika59785
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tina-uk_cwall phyllis10549
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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
phyllis10549 tina-uk_cwall
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EileenH phyllis10549
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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.
phyllis10549 EileenH
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EileenH phyllis10549
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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!
tina-uk_cwall phyllis10549
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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
Danrower phyllis10549
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Padada phyllis10549
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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.
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phyllis10549 Padada
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EileenH phyllis10549
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Mrs.Mac-Canada phyllis10549
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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.
phyllis10549 Mrs.Mac-Canada
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EileenH phyllis10549
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If it doesn't improve ask your doctor to consider a cortison shot in the shoulder area.