I slipped disc 4&5. On month later diagnosed with pmr. I am seeing an occurrence with injuries and this disease.
I hope DRs see this. After an epidural for back injury I was laid up for a month. Went back to work. After 4 weeks I was in so much pain I was let go from my job ( hospitality)
After a month of of ortho dr aPpt. Which I thought was still the issue my primary discovered I have PMR.
Now after a month on prednisone I'm ballooning up.
When I can move I'm Very active but the drug is making me gain weight.
I'm trying to cut back but the pain gets uncontrollable if I don't keep with the 20mg twice a day.
The surges as I like to call them are insane and very painful. Does anyone get the itches in the wrists joints etc before the surges start to attack?
My craving for sweet/ salt is of the charts.
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Qubbie
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Is everyone sure it’s PMR? 40mg p/day is a very high starting dose - more normal is 15mg-25mg.
As for being very active, then that’s not doing you any good, yes you do need to remain active, but too much can worse than none or not enough especially if it’s repetitive. You body just can’t recover as it it pre PMR.
As for weight, you need to cut down on refined carbs, and try and resist your cravings - not easy I know.
Sure others will be along with advice shortly but you could probably find some more advice if you type in ‘weight gain, or controlling weight’ or something similar in search box on right hand side of banner at top of page.
Meanwhile have a look at this, and see if it relates to what you have -
What were your symptoms which led to diagnosis, after the L4/5 episode? What tests did your doc run?
A month on 40mg, you should be feeling tickety-boo if this is PMR. Usual starting dose is around 15mg (maybe 5mg higher or lower) and there should be 70%ish improvement in a week.
I don’t recognise ‘surges’ as being part of PMR (but could see where a disc problem could do that (been there, understand that awful pain). I don’t recognise itches as part of PMR either, although I have read that the itching sensation may be ‘pain’ but below the pain threshold, and we interpret it as an itch.
Your craving for sugar is of course the pred. There’s only one way to control it, cut out all processed sugar, biscuits, cakes etc; and be careful with other carbohydrates, stick to unprocessed brown rice/pasta/bread, and limit your ingestion of these. Get calories from fatty things. Don’t eat ‘low fat’ yogurt etc, as the fat is removed and sugar replaces it. Pred affects the way we metabolise carbs and affects insulin. Each time you eat sugars, your blood sugars rise, insulin lays down fat (mainly around tummy) and when the blood glucose falls again your body screams MORE! MORE! You have to be cruel to be kind in this instance. Plus all that sugar is inflammatory, and you don’t want added weight if you’ve got dodgy discs.
Tell us more. At the moment this doesn’t sound very PMR to me.
I agree with the advice you have already received. I would be questioning my diagnosis. 40 mgs of Pred would relieve most muscular skeletal things to an extent. The surges are not at all typical. I suspect that you have something else going on and your doctors need to investigate further.
I can totally relate to the carb and sugar cravings plus I have two failed fusions between L4, L5 and S1. I was put on a high prednisone dose to start with and it made so much difference. I'm tapering now and see rheumatologist soon. I too have wondered about patterns and partnerships with pmr but it's all still pretty new to me. Good luck with it all
If you have PMR (and only PMR) then 40mg a day is a far too high starting dose. All sorts of things will respond to that and the characteristic of PMR is that it responds well to lower doses - up to 25mg should be plenty.
Cutting carbs drastically should help the food craving and the weight gain AND help avoid developing pred-induced diabetes.
But if you have such severe pain on 40mg a day - either you aren't absorbing the pred or you don't have PMR. And to be honest - what you describe isn't really typical of PMR.
Soraya has already said the rest of what I was going to say.
Thank you everyone. Yes it is absolutely PMR. I just call them surges because that's what they feel like. The sugar intake makes sense. I will heed the diet advice.
"Absolutely PMR" - there is no way to know as there is no definitive test.
PMR is the name given to a set of symptoms and there are several different underlying causes ranging from inflammatory arthritis to cancer with a load of other things in between. You rule out the others and if the symptoms fit and then respond typically to moderate dose pred then the diagnosis can be PMR. But about 1 in 6 people given a PMR diagnosis at the start have it revised at some later date.
Hi Qubbie, why do you say it is definitely PMR? The trouble with steroids is that you actually have to eat less than you normally would to maintain your normal weight. When I started pred I could eat a horse, then another one when I had finished the first one!!
I was responding to piglet with that comment. No worries, you’ll soon get the hang of the forum layout.....then they’ll upgrade and everything will change. Again.
A dose of 40mg a day will help many forms of inflammation - that is the point I'm trying to make: the PMR we talk about responds to lower doses. When much higher doses are used/required then it muddies the water and may mask other problems. I'm not saying you DON'T have PMR, I'm concerned there is something else going on that is being ignored because of the fixation on the PMR symptoms.
Hmm, I think words are confusing us! We would refer to a flare up when the disease increases with more symptoms, or we reduce pred and uncover the symptoms again. Neither of these two scenarios would fit with a stable dose of 40mgpd pred.
Do you have stiffness in certain joints? Tightness? Full range of movement? Is the pain achey? Tingly? Hot? Is the pain affected by certain movements? And where is the ‘surging’ pain?
I wouldn’t be a bit surprised if some of your symptoms are not due to the high dose pred! Ask those with GCA who have to take the high doses.
I don't know. I think I agree with the others. Pain referred from the spine can appear in the most unexpected places and cause the most debilitating symptoms. One of the key means of diagnosing PMR is the rapid (within a few days) relief of symptoms (pain and stiffness) with a moderate (no more than 25, usually 15 mg) dose of pred. If the symptoms have persisted and are presenting with sensations like sudden flares of pain or a locking of the joints from pain, I think there is something else going on. And the fact that the pain is is still unbearable unless you take 20 mg of pred twice a day after a whole month would, to my mind, rule out PMR.
Have you been assessed by a physiotherapist? They can find out if you have muscles which are in spasm, which can contribute to pain and disability, and they have techniques to release those spasms.
I have also been diagnosed recently following bloods, CT and MRI scans and put on 60mg prednisone which has worked a dream. I'm about to see a rheumatologist andmy GP is really sure it will be confirmed. I have other issues but they are separate and treated. When I questioned my GP about being atypical, he talked about spread of distribution meaning there have to be outliers to prove the norm. As an ex maths teacher this makes logical sense so I get a bit discouraged when diagnoses are frequently questioned. I understand that there is a high incidence of misdiagnosis and have researched everything I can find so I get that rate of misdiagnosis would lead people to want to direct people back to questioning the diagnosis. I get a bit stressed when I feel people have to defend the diagnosis. Am I being over sensitive??????
Qubbie, the fact you are getting so many flare ups and are in pain does sound strange. Pred should reduce the pain so it is tolerable and you can carry on a near normal life, you should not be having these flares all the time particularly when you have not been reducing. Also you say you are having joint problems, PMR affects the muscles so you may have something else as well.
I think the point when we question is more that PMR is a diagnosis of exclusion and it has defined criteria for its classification for research - which don't always apply for everyday patients. However, one fairly important aspect of PMR is that it characteristically responds to a moderate dose of pred and in the guidelines they suggest the lowest effective dose in the range 12.5 to 25mg per day but not above 30mg to start.
Obviously some people need more than others so there is that range which is assumed to be enough to work for most patients. After that you titrate the dose to find the lowest dose that works day to day once the existing and often longstanding inflammation has been cleared out.
But one of the signposts that it isn't quite as simple as the PMR we discuss here is that an unusually high dose of pred is required and then there is great difficulty experienced in reducing the dose. PMR is only the name for the symptoms. The PMR we have should perhaps be renamed - "low dose pred-responsive PMR" perhaps - but other causes of the symptoms may respond better to other drugs, other vasculitides are treated with different drugs to achieve remission. That may be why some people respond to adding methotrexate or leflunomide in PMR while others don't. There are even some who don't respond to Actemra. There are different sorts of PMR - that is being accepted now, one size doesn't fit all. And there are a few forms of inflammatory arthritis which will present identically to PMR at first. One in 6 patients who are given a diagnosis of PMR have it revised at a later date - even though it looked like PMR and responded to pred very well at the time.
Anyone with GCA will tell you how unpleasant it is being on such high doses of pred - there is no wonder that most doctors are keen to reduce the dose. And maybe even if the doctor says "PMR" but you need very high doses of pred - another drug may work better.
Very informative, I am really curious to know more about how size/weight/age affect the dose of Prednisone needed. Is there any information to look up?
Not as much as you would think - the calculation used to be based on skin surface area (I know, no idea why) and that doesn't vary much. In the case of PMR it is a dose range TO START - and then the titration is done by tapering to find the right dose for the individual patient. That takes ALL the variables into account: activity of disease, weight, amount of pred this patient absorbs (anything from 50-90% of the oral dose) and age.
In the case of GCA they quote a pred amount per kg patient weight but not to exceed a maximum of x mg (which I can't remember off the top of my head) UNLESS there are visual symptoms in which case as much as 100mg/day may be used, though more usually 80mg. In exceptional cases or as standard for some doctors, GCA with visual symptoms is treated with a 3-day pulse approach of a VERY high dose of methyl prednisone as infusions. But in GCA you are in a hurry to reduce the inflammation to reduce the risk of loss of sight so adverse effects are less important at the time. In PMR you use enough but not too much to reduce the adverse effects.
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