I have been on 15mg, a very strict dosage from my irritating rheumatologist. I bore the pain, but it grew and grew in my shoulders, arms, sides and legs until this week I just can't take it. Here's what I wrote to my doctor online. I haven't gotten her reply yet, but I doubt she will add anything.
I have been good at keeping to 15mg since we last met, but gradually getting more and more full of pain, especially in my shoulders and arms, sides and legs. I got so desperate yesterday that I took a double dose of prednisone. At first I didn't think it was going to help, but when I woke up this morning, my shoulders were clear of pain for the first time in weeks. I had to cry for the good of it. I am still convinced I have polymyalgia, despite your stubbornness. Can I get a blood test or what can I do to convince you I need a slightly bigger dose?
What do you guys think? What if another dr says the same thing? Is there a way to get pred. on your own somehow? I guess it is illegal.
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Trevgrrl
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You seem to have been on Pred for a very long time - are you sure all your pains are down to PMR? I know you have other issues.
You may not have done yourself any favours by doubling your dose to 30mg in your Rheumy’s eyes …she is going to say - “of course 30mg will give you relief”. Personally I would have tried a smaller increase to try and prove my point. …and what dose are you going to continue on whilst you wait for an answer if you are only prescribed enough for 15mg a day?
As Pred is a prescribed medication, then it would be illegal to obtain - and probably highly dangerous (no guarantee on ingredients etc). ..so please don’t consider that as an obtain no matter how desperate you feel.
Other than trudging from rheumy to rheumy - probably not in the USA, even if you could in other countries, not that taking unprescribed pred is ever a good idea.
I can understand your desperation but worry that this Pred taking may land you in a worse position. My reasons are - 1. like DL I would caution taking a knee-jerk extra 30mg because that would knock on the head all sorts of types of inflammation and doesn’t tell one much. Besides, it’s not actually working 100%. A more cautious step up might be better to see which level actually works more accurately. 2. In the past you’ve done this and have run out so have had to have nothing until your prescription ticks round again. Depending on how long, you run the risk of adrenal crisis. 3. At some point the benefit of taking Pred will be causing more issues than it’s solving. You already have fractures in your back that may increase if your bones soften too much. Not to mention other high dose effects that cause vascular and musculoskeletal problems like diabetes and possibly weight gain. 4. The increase in Pred doesn’t make you pain free, suggesting you have more than one cause of pain.
However, it’s all very well saying these things to you but from what you’ve said, the doc is not helping and you feel powerless to change anything except your dose. You are both at loggerheads because they want zero and you want up and both of you are arguing over one single point, when there are many points flapping in the wind unattended. If they said, “yes go ahead, take whatever dose you like with my blessing, I’ll keep writing the prescriptions”, I dare say it wouldn’t solve your problems and you would end up with another heap of misery from too much. Telling you off won’t solve the issue either. I’d say once you get to name calling, the relationship has broken down and a new approach is needed or they need a reminder that a human being is suffering every day with no light at the end of the tunnel because the doc is not presenting any alternative, explanation or hope.
A few questions I have are around these points -
1. As has been said by other people here, “if it’s not PMR, what is it”? Are they really expecting you to get off Pred and suddenly the ‘real’ cause will reveal itself? Are they showing no interest in getting to the bottom of it? Have you requested other investigations?
2. What other diagnostic roads have they gone down so far?
3. Have they done a bone density scan recently? What is the status of your old fractures too?
4. Perhaps there needs to be a referral to another person who will look at it from other angles. A pain specialist, orthopaedic doc, or even a fresh pair of rheumatologist eyes. Just because someone is supposed to be a specialist in something in their area, doesn’t mean they don’t suffer from tunnel vision or lack of imagination, or dare I say it, compassion and empathy.
5. Did the Actemra help before you got the cellulitis? Was there a cause of the cellulitis? Actemra would have just fanned the flames by immunosuppressing you, allowing the issue to run riot, I suspect.
You may have symptoms that match PMR - but PMR isn't really the disorder. It is the name given to the clinical picture of certain symptoms - and they are caused by an underlying illness. In our case it is most likely an autoimmune disorder but there are other causes of these symptoms and they have to be ruled out before the remaining diagnosis is PMR. Even some forms of inflammatory arthritis can look like "just" PMR - but pred isn;t the right management approach.
If she has done the differential diagnosis and come to another conclusion she should be explaining that, including you in the management of YOUR illness - if she hasn't, then she is neglecting her duty. But going head-to-head will get no-one anywhere and an impartial view from a doctor without preconceived ideas would be a good idea. But you too must be prepared to accept another version of your illness.
So sorry for your pain situation I can understand how distressing it is becoming for you and empathise with the desperation you must be feeling.Unfortunately , you do seem to be trapped in one of those vicious circles which is stopping you getting any relief.
I completely agree with DL , Snazzy and Pro.
The crux of the matter seems to be that you have been on a rather high dose for an extended period of time and the fact that this is giving little relief at all does suggest that you also have other chronic illness issues at play and could really do with having a full panel of tests to establish what is going on and whether you may need a combination of medications to control your pain. Or that you may need a different course of treatment if you are getting no relief at 15 mg after many years and have PMR alone.
Doubling the dose may have given you some respite from your pain but your doctor , as others have said , is more likely to consider that this was an obvious result even if it may not have been the best course of treatment for you.
They will see it like using a hammer to crack an egg and may dismiss the relief you got from it because of that , although the desperate measure you felt you needed to take to get at least some relief should be enough to kick them up the backside and choose to thoroughly examine your actual needs.
Its been a while since I have been on the forum , I'm afraid , and I haven't had chance to look back through your posts so I can't remember if you do have other diagnosis in your medical history like Arthritis variants , Fibromyalgia or other Chronic Pain associated disorders.
I also can't remember whether you have already been given a combo of medication for your pain.
I think no matter what you doctor says and the current health situation when you get to speak to your GP if they don't suggest that you come in for more examination , and tell you that they are contacting Rheumatology to get you an appointment urgently that you should politely but firmly insist that this is done. You certainly can't live having take desperate measures to get relief for much longer.
In the meantime , try and keep as relaxed as possible , start noting in a diary when you pain has flared up the most and where so you can discuss it with the GP or see that there may be certain activities that you may need to limit or rest more after doing to prevent it triggering more pain flares.
Try and reduce your activity for a few weeks to the bare necessities to help get your pain level under control and give your body chance to recover.
Whilst your pain levels seem to be sparking all the lights like an arcade game it becomes harder for both you and the doctor to spot exactly where and how this pattern is going on.
Just quickly read your amended profile , may I ask , what , if any , forms of treatment are you receiving for your Fibromyalgia?If that is not being treated and under control it will definitely be contributing to the high pain levels you are having , especially as it will be more intense in the areas that you suffer PMR pain .
Steroids do next to nothing , in my experience , for Fibro pain as it is at first a neurological pain issue which only begins to increase your inflammatory pain or feeling of inflammatory pain when it us not under control because of the way it makes you tense up your body and use your joints.
Have you been taking other pain control medication for your spinal injury and been offered the right physiotherapy available to help with controlling these conditions too?
If not , this could be at the heart of your problem , all your chronic health issues need to be treated in combination and if they aren't I'm afraid no amount of Pred will give you the solution you need.
In reality , your Doctors should have pinpointed this as an issue and given you a multi illness , multi systemic course of treatment long ago when they saw that you were basically stuck with a steroid based solution which was not working on it's own.
This is the time you really need to ask them to see you and help you get to a multi treatment approach , rather than them stepping back and exhibiting the usual error of medical professionals by not treating the patient as a whole and creating a system of care that is individualised to your needs.
When your GP does call , its deep breathe time , write down what you need to ask for and show how proactive you want to be to work to the right solution with them. Be as confident as you can in your requests and try and stay as calm as possible no matter what idiotic suggestions they seem to say. You have your goal , to be seen , examined and get better care , so be as polite but firm as you can to achieve it.
If you do feel like you are still hitting a brick wall it is definitely time to request to get a second opinion at your Primary Care surgery and to be referred to a new Rheumatologist , and possibly an MS specialist for your back , a Neurologist with Fibro experience and an appropriately experienced Rheumatology Physiotherapist.
Thanks everybody. Made me cry not to have some support, but you are all probably right. Yes, I have fibromyalgia and arthritis, and I take lots of pills, including pain pills, oxycodone and morphine. I guess my body is too used to all the meds for them to work anymore. I plan to just go back to 15mg a day, and try not to get so desperate. Once in awhile I do, maybe after I've been active. It is hard not to do something in one's life besides sit still.
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