Posted , 12 users are following.
My Rheumatologist has advised me tobegin taking this to help m e reduce the 10 mg Prednisone dosage. (if the Opthalmologist and the GP agree because of the side effect of possible irreversible loss of vision and allergic reactions) I don't know which side effects are preferable - those of Prednisone or those of Plaquenil - or the combined side effects of them both together until I am able to come off of the Prednisone if ever! I wonder if anyone has any comments on the use of Plaquenil for PMR? Yesterday at the consultation I actually felt that I was letting the Rheumatologist down by not having made more progress...... she is very nice and professional but I felt I had disappointed her!!!
1 like, 52 replies
Rimmy ricky23486
Posted
You should never have to feel YOU 'disappointed' any medico - however 'nice' they are !! They are there to assist you not (necessarily) vice-versa although obviously it is good to have a positive reationship with them. Regarding side effects of these drugs there are several very 'expert' people on this forum who will unboubtedly be able to assist with those questions. Best of luck with everything !!
ricky23486 Rimmy
Posted
phillip11645 ricky23486
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Mine prescribed Methotrexate as the reducing agent (I've been stuck on 15/17.5 mg of Prednisone) which hasn't helped as far as I can tell and it's been 4 months. It seems most of us (including the docs) try to reduce too quickly - I've recently seen the "dead slow" posting which recommends reducing by no more than 1 mg per week to 10% of original dose which I'm just trying now:
1 day new dose, 6 days old dose
1 day new dose, 5 days old dose
1 day new dose, 4 days old dose
1 day new dose, 3 days old dose
1 day new dose, 2 days old dose
1 day new dose, 1 day old dose
1 day old dose, 2 days new dose
1 day old dose, 3 days new dose
1 day old dose, 4 days new dose
1 day old dose, 5 days new dose
1 day old dose, 6 days new dose
ricky23486 phillip11645
Posted
mimi1950 ricky23486
Posted
Im sure you will get some good advice on here regarding plaquenil, just want to tell you that I really related to rheumis making you feel like a child that brought home bad grades . Isn't it so unpleasant?
ricky23486 mimi1950
Posted
definitely... especially if the rheum is half one's age!
EileenH ricky23486
Posted
Sorry - I've just seen this after 2 days. Not even present in the side bar notifications!
Plaquenil has no evidence to support its use in PMR as a steroid sparer - but there are doctors who seem to think it works. In the most recent guidelines they do mention methotrexate but say quite categorically that they cannot recommend the use of other DMARDs for the purpose. Even mtx should be used only if the patient agrees. You will find a link about halfway down this post:
https://patient.info/forums/discuss/pmr-gca-website-addresses-and-resources-35316
where they say: "The group recognized that no recommendation can be made for the use of other non-biologic (ie, conventional synthetic and conventional targeted) DMARDs in PMR because of the lack of good evidence from PMR studies. Hydroxychloroquine was investigated by a single very low QoE retrospective study reporting no benefit regarding relapse rate." (hydoxychloroquine is Plaquenil)
In the replies you will also find the description of the dead slow approach phillip mentions. It has worked for many patients - the approach many rheumatologists use is too aggressive and leads to flares or withdrawal problems that look like flares.
It is unlikely that plaquenil will get you off pred - if it worked like that then they would use it instead of pred. They don't. Neither do they use methotrexate on its own. I do know a couple of people who are sure they benefit from being on mtx - but they are far outnumbered by the people who had problems or for whom it did nothing.
You are at a higher risk of developing GCA simply because you have PMR - Im darned if I would take a drug which in itself could threaten my vision when there is no evidence it will do what she says. I would want some VERY good justification from her.
As Rimmy says - you have not "failed" anyone in any way shape or form. You have PMR, PMR is a chronic illness and taking medication is only a means of management of symptoms until the actual cause of the disease burns out and goes into remission. No doctor would tell a diabetic they need to take some unproven drug so they might possibly manage with less insulin - Type 1 diabetes is also an autoimmune disorder and can't be cured. If your rheumy, nice as she may be, can't cope with the fact she can't CURE you that is her problem.
YOU need the amount of pred YOU need to manage the activity of YOUR disease, AT THE MOMENT. It doesn't mean you won't get lower, just not yet.
ricky23486 EileenH
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adette01750 ricky23486
Posted
Hi Ricky, I have been put on Plaquenil, I have sjogrens auto immune disease and they said it might help with the pains from sjogrens, it hasn't really and I'm still reducing my steroids but it has increased my saliva secretion, as with sjogrens disease you can have reduced saliva, amongst other problems.
They did mention that the tablets might help me reduce prednisolone more comfortably but I haven't noticed that benefit. As with you Eileen told me the same that Plaquenil is not an associate treatment for PMR, so I don't really know why they say that. They have decided to trial me on another drug as I'm reducing from my steroids in April the new one is called Azathioprine, again they mentioned it might give me relief whilst reducing my steroids, so not sure what they are trying to do really other than quicken my reduction.
I wish you all the very best with your path, I hope it is a more successful one than mine.
Anhaga adette01750
Posted
You may wish to queston the decision to put you on azathoprine. "Tumor necrosis factor alpha (TNF-a) inhibitors have also been investigated as corticosteroid-sparing agents in PMR. A randomized study with infliximab revealed no benefit. [35] The only randomized trial using azathioprine (150 mg/d) during the maintenance phase of PMR showed a high frequency of adverse drug effects and a high number of patient withdrawals from the study, although a lower cumulative dose of corticosteroid at 52 weeks. At this time, the small number of completers and the high number of giant cell arteritis patients in the study make the study results difficult to interpret. [36] EULAR/ACR guidelines strongly recommend against the use of TNF-a inhibitors in PMR. [19]"
Anhaga
Posted
adette01750 Anhaga
Posted
Thank you Anhaga
i really don't know what to do I'm in pain head to toe now my steroids are at 11mg felt worse from 14 mg but the doctors say to continue reducing as my ESR is 24 and over the last few weeks was 30 and 28 respectively my CRP had always been 5-6 now 9 but they don't want me to continue on steroids.
EileenH adette01750
Posted
I think you could perhaps do with new doctors who will consider the patient and not the numbers. Unless they have decided it isn't PMR - and in that case they should tell you and include you in the decisions.
Mrs_Hobbles adette01750
Posted
I think you need to increase your dose to where it takes the pain away and then do the dead slow reduction as described in a post above. You should NEVER feel you are disappointed your rhumy, you need to do what's comfortable for you and telling you to reduce when your CRP is higher than before is ridiculous, it's clearly showing that you are in more pain! Really, increase then decrease very, very slowly and hopefully that will work for you. I don't know anything about Plaquenil but even hearing the sympoms I wouldn't touch it with a forty foot barge pole!! Don't feel pressured to do or take anything you're not comfortable with. Wishing you all the best!
adette01750 Mrs_Hobbles
Posted
Thank you Mrs Hobbles,
I thought my CRP being higher had some relevance but the doctors said it was ok as my ESR is reducing, I did increase my prednisolone as I couldn't cope with the pain, to 12.5 and after a couple of days went to 12 then again to 11, now I am trying 10.5. I have another dental implant procedure tomorrow so have to double my dose tomorrow, so won't reduce anymore for a week or so. The hospital called me last week to say to reduce to 9mg and 1mg a month after that. I was already higher than they thought as at the appointment I was 10mg but had increased it as I outlined above, but I am off sick so when I return to my relentless hectic very mobile job I think I will need to be careful with the rate of reduction.
EileenH adette01750
Posted
There are many experts who feel that the CRP is more significant and reliable than the ESR.
How do they know it's "ok"? That is so rude and unprofessional to dismiss the patient's symptoms as irrelevant. If you have pain when reducing pred, the first thing to rule out is whether the dose is now too low. You take a bit more - if it works, the lower dose wasn't right. Wait a bit and try again. Steroid withdrawal is a bit different, it will fade after several days. If it gets worse - it is a flare of symptoms.
You need a good discussion with your GP - perhaps they will agree to manage you.
It isn't their pain and they aren't living with it
ricky23486 adette01750
Posted
FlipDover_Aust EileenH
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How DARE Drs make decisions FOR you, instead of WITH you.
ricky23486 adette01750
Posted
adette01750 ricky23486
Posted
I know, but maybe it's because there isn't a test to confirm diagnosis, so they stab in the dark a lot of the time. Also a lot of the doctors don't seem to be as up to date with PMR as the wonderful people who support us on this site.
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