HELP! I'm very new to PMR! Following my initial diagnosis in December 2019 I was prescribed 30mg of Prednisone. Within a couple of days I was feeling great. My rheumatologist began tapering after 2 months and although the pain returned at 10mg (during lockdown) he continued to cut it down to 0. He did not explain why he did this and as I'm so new to this, I did not question him. For the last 6 months I've been on 15mg of Methotrexate weekly and 60mg of Arcoxia daily. The pain in my shoulders and hips is excruciating in the morning and does not ease a great deal throughout the day. It is very debilitating. I have recently started a low carb no sugar diet and I'm hoping that this will help to lower the inflammation which will lessen the pain and give me more movement. It seems that almost everyone is taking Pred for long periods, even years! Is my journey similar to others?
HELP!: HELP! I'm very new to PMR! Following my... - PMRGCAuk
HELP!
Oh sounds all wrong. The experts will be along soon. Even the "lucky" ones would be 2 years or so. Im 4 years on this road. In Ireland too.
Thank you for your reply powerwalk. I have an appointment with my rheumatologist on july 1st and intend to ask him about the Pred.
As has been said you should have remained at 10mg were pain was quite eased or returned to a dose that would
provide relief. I have been on prednisone for 6 years the lowest dose that I have been able to live without pain is 5mg going lower only brings on a problem Flair. As has been stated here at other times by those with lots of experience why suffer the side effects of prednisone without the benefits. I do so hope your Rheumie will understand this and make adjustments or that you will find one who will not sacrifice your quality of life to keep the dose of prednisone low. I feel very fortunate to have been able to remain at 5 mg four years which is a dose with minimal
Side effects. I hope you find the best of care and will be as fortunate as I have been to have found this site. With determination better days are ahead
Hello, I’ll leave the technical bit to those who know more. However, what I will say is, just because you are new to this condition doesn’t mean you are not worthy of information. So it was not your failing in not questioning them, it was theirs for not informing you. At the least they should explain their rationale backed up with evidence that is pertinent to you personally. Next time, do ask them to explain thing, that’s their job.
Thank you SnazzyD. I have been learning so much about this condition, mostly from the experiences of others. I now have a better idea of what questions to ask. I have to say that I am a little peeved that the doctor did not think it necessary to explain things to me! At 200Euro for a consultation I would expect that!
Your doctor obviously does not understand the nature of PMR - it is a chronic autoimmune vasculitis which lasts far more than 6 months. There is no wonder at all that you are now back to where you started since only corticosteroids work to manage the inflammation and relieve the symptoms. NSAIDs (Arcoxia) do nothing, as you are finding, and neither does methotrexate on its own. Methotrexate MAY help people get to a lower dose of pred - but it rarely if ever allows people to get off pred altogether.
I don't think though that in nearly 12 years on the forums that I have come across anyone so poorly managed as you appear to have been. Do you have any way of getting to see a different rheumatologist? Or would your PCP take over - I am assuming you are in the USA since you say prednisone?
This may help you to understand a more usual way of managing PMR but they base it on a 2 year course of the illness which is also not that usual - only about a third of patients are able to get of pred in that time. Half need pred for anything up to 6 years.
rcpe.ac.uk/sites/default/fi...
You should have stopped reducing at 10mg for a time if that is where symptoms started to return. No doubt this is a doctor who is terrified of pred - but Arcoxia isn't that wonderful when it comes to long term adverse effects either. Have you tried without it? Most of us find ordinary painkillers do so little they simply aren't worth it,
Thank you so much PMRpro! Your reply is very helpful. Its little wonder that I'm in so much pain. I will certainly be looking for some detailed answers from my Rheumatologist. If that does not happen I will be changing!! I live in Ireland...the steroid I was on is called Prednisolone which I've been told is the same as Prednisone
Oh right - in the UK they use prednisolone, the US tends to use prednisone. The difference is that prednisolone is the active form, prednisone must be processed by the liver to become prednisolone. The majority of members here are in the UK.
It is indeed no wonder you are in so much pain! The link I have given you is aimed at helping GPs manage their PMR patients - so a GP shouldn't be offended at being offered it to read but a so-called specialist might, despite their woeful level of knowledge.
These might help too:
medpagetoday.org/rheumatolo...
practicalpainmanagement.com...
They are articles about the research - which is this paper:
SShbeeb I, Challah D, Raheel S, Crowson CS, Matteson EL. Comparable Rates of Glucocorticoid Associated Adverse Events inn Patinets with Polymyalgia Rheumatica and Comorbidities in the General Population. Arthritis Care & Research, July 13, 2017. [Epub ahead of print]. ncbi.nlm.nih.gov/pubmed/287.... Accessed Aug. 10, 2017.
and the link is at the end of the articles. This found PMR is NOT a short-term condition - some 40% of patients still require a low dose of pred after 10 YEARS, not months!
Oh dear,
Your Rheumy seems to have a view of PMR that most don’t - short course of Pred and everything’s okay. Sorry but it doesn’t work like that....it can last anything from 2-6 years, sometimes longer.
And never keep reducing if pain returns because it’s only going to get worse... I guess he’s one of those that gets in a panic about Pred - and because of C-19 even more so.
If your PMR is active, you need to be on Pred, simple as!
Is there any way a more sympathetic GP could manage your PMR?
Thank you DorsetLady. My GP is terrific thank God. However, he does not deviate from what the Rheumatologist says. Now that I am a little more informed I will be able to question more
I can understand that, he’s deferring to the expert, but when the expert’s a bit too gung ho, it puts you in a difficult position.
I will be questioning both my Rheumatologist and my GP about my future treatment. I have suffered terribly, especially during lockdown but now that I have so much more information I will hopefully change that very quickly. Thank you so much for help and advise
Good luck to you. I hope you can get some better treatment as you seem to have been treated so poorly,
Your situation sounds pretty miserable. I can only imagine how much pain you have endured.
As consumers of medical services, we must figure out how to be advocates for ourselves. We have to educate ourselves, and speak up when we face a rheumy who is supposed to be the expert, but who, in fact, is seriously mismanaging our disorder.
This forum is probably the best source of information you can find of the subject of PMR/GCA.
Do you have someone who can accompany you to see your rheumy. It's helpful to have support in these stressful meetings. Another set of ears to hear more things, and note taker to help recall details.
Risk of developing GCA is a potential consequence for you, if inflammation of PMR to progress untreated. Loss of vision is permanent when it happens.
PMR is nothing to take lightly, and your rheumy does not appear very knowledgable about the facts. You must step up and demand proper treatment. It's your health.
Kind regards, Jerri
PMR diagnosed 2013, currently on 5 mg pred.
As Purplecrow says, GCA is a potential consequence. I had got down to 5mg of Pred and started getting neck pain. I ignored it and it developed into GCA. God luck with your appointent.
I don't know why some Drs behave like this.Mine has been trying to reduce me fast too but I just say No I won't.
This is a relapse for me so I know what happened to me last time . Unfortunately I don't have the same Dr now and he doesn't seem to know a lot about prednisolone side effects or reducing.
It took me 4 years to get off it last time.Im hoping to be quicker this time as
I'm watching what I eat and using a few alternative therapies as well to counteract the side effects of reducing but it is a necessary but nasty medication.
We all wish there was something else to use but at present there doesn't appear to be.
You're on a very similar journey to me, staring around the same time.
I too had problems on 10 mg of Pred but still told to reduce to 9 and had a flare up. Spoke with a different doctor, who seems to know more about PMR. She put me up to 15mg and the pain went. She told me to stay there for a month then reduce to 14.mg. I am waiting for blood test results but am so much happier with the new doctor.
She will reduce much more slowly and said it could take 2 years to get to a low dosage maintenance dose.
She sounds a keeper - not only "2 years" - but accepting that is likely to be a maintenance dose, not zero!
Yes, she is only a young doctor, new to the Practice. I just hope she stays.
I think the newer GPs are being taught better - does depend on the med school though.
After being diagnosed with GCA was on steroids 60mg at first gradually reduced. However difficult to cut down but had to within a year as I developed osteoporosis in my hip which had to be replaced. I would say manage on the least dosage you can.....
Hi
I was diagnosed in Nov 19.
Started on 30mg a day and now on 2mg a day . You have to do it very slowly and I sleep on an electric blanket for winter which helps my hips and shoulders. It is such an individual thing PMR.
With my 2mg I take Iborfun and paracetamol am and pm I find this by itself this also helps me with the aches snd pains.
Good luck.
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