PMRGCAuk

Polymyalgia Rheumatica

I am 70 years old (male).

I started feeling the PMR symptoms about a month ago.

My doctor confirmed I have PMR about a week ago.

Other than for type 2 diabetes which I have controlled with diet and exercise along with Diabex for the past 10 years I had been generally healthy.

My doctor does not think that Prednisone is suitable treatment because of the side effects for diabetics.

I am interested in some advice about alternative treatments.

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I did not respond well to steroids which also raised my blood pressure. Leflunomide worked superbly but pushed up my liver enzymes so now on azathioprine with instant success and no side effects yet. I am only 55 so the rheumy was looking long term as I have Auto immune Erythema Nodosum too. Best of luck

Clare

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Hi Clare

Thanks for your reply and I am glad the azathioprine works for you.

I have to admit i am personally sceptical about pharmaceuticals having gone most of my life without them. Prednisone like all pharmaceuticals treats the symptom (muscular inflammation). Of course, the cause of PMR is not known.

I can assure you I am not happy suffering the effects of this condition without any treatment. And I may very well still have to swallow that pharmaceutical pill.

However, I am holding out, hoping that someone can give me an alternative natural treatment or lifestyle?

Thanks

richcar

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I have had diabetes for 18yrs. I was dx PMR June 2016 and started at 15mg. I was concerned regarding increased glucose spikes. My hba1c did rise and eventually I started insulin 9 mths later. I had been worried for years about having to have insulin so had controlled diabetes through diet etc. In terms of diabetes management insulin had made me feel better and more stable and secure with no hypo so far (fingers crossed).

I give lengthy reply 're that because in general there is no other treatment than pred. Some people find Some benefit from alternative therapies that provide same or similar chemicals as pred and others from complementary therapies like tai chi. Me? Happy to stick with something that I know works for me pred. Almost down to the level that my body would naturally produce so happy with pain free progress.

Good luck. You will have lots of things to research. 🌻

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Hi poopadoop

Thanks for your reply

richcar

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Hi rich car,

Your GP may not think Pred is suitable, but unfortunately it is the only drug that will sufficiently control the inflammation caused by your PMR, for which as you rightly say there is no cure.

There is no alternative medical treatment, some on this forum have tried non medical alternatives, but eventually have turned to Pred. There are also contributors who were diabetic pre PMR and seemed to have coped without too much problem.

Pred is a very powerful and misunderstood drug, and many doctors seem afraid of it, but left untreated your PMR could cause you more medical issues.

I’m sure you will get plenty of replies, but the majority will, albeit begrudgingly, tell you go down the Pred path.

Good luck.

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Hi DorsetLady

I am sure my doctor will per-scribe Pred if necessary. I am a bit daunted by the long list of major and minor side effects in Wikipedia. The cure almost seem worse than the disease? I would help me decide, to hear from Pred users who have experienced any major side effects.

thanks Richcar

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Hi Richcar,

Yes there are a long list of side effects with Pred, but if you read any medical leaflet you would probably find as many, if not more. The pharmaceutical companies are obliged to list every side effect, no matter how unlikely they are - a fact of our ‘sue them” society!

Having said that, not everybody gets even a quarter if them, and none are life threatening as such (they may be unpleasant, but not fatal) and they can all be managed/treated.

If you have PMR then 15-20mg is the usual starting dose, and I guess the most common ones you may encounter are the redistribution of adipose tissue around the face and neck area. Some patients do put on extra weight, but as you are careful about your diabetes then you are aware of too many carbs etc which seem to be the culprits! Some suffer sleeplessness and sweating.

I started at 80mg, and had a few side effects - sleeplessness for a couple of months, slightly raised eye pressures (not enough to need any further action): slightly raised blood pressure and Pred induced cataract (operated 2014 & fine); but came through relatively unscathed. All those raised pressure subsided as I lowered by dose of Pred.

We would all agree the “cure” is not pleasant- in fact it’s not a cure, all the Pred does is control the inflammation (pain) caused by the PMR, it does nothing for the PMR itself - that seems to run its course in most people and then go into remission.

The problem is if you don’t control the inflammation (and at present only Pred does that) you cannot be sure what damage is being done to your blood vessels and internal organs because your blood, oxygen and essential nutrients are not getting around your body.

Good News - Males do seem to cope with PMR and Pred better than women generally.

So if you are prescribed Pred do not be afraid of it, okay it’s not the nicest drug, but it will give you a reasonable style of living. Without it, you could end up in continual pain and bedbound!

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The list is of every side effect ever reported in association with taking pred - the drug companies covering their backs. There are 82+ listed side effects, no-one gets all of them, many get none of them. Most of the common ones can be managed when you know how. I have been on all versions of pred over the last 8+ years and have had several side effects but all have resolved, either by changing to a different formulation or by discipline on my part. But at no time did I think I'd be better without pred - I had had 5 years of that, it was no joke! Untreated PMR is more likely to progress to GCA - and there is virtually no pred side effect that is worse than the potential endpoint of GCA: irreversible blindness.

I suppose too that it all depends what you regard as a "major" side effect. Most people seem to be most concerned about weight gain and developing a chubby face. The tendency to weight gain can be managed by cutting carbs drastically - this also reduces the propensity to develop steroid-induced diabetes. Occular pressures may increase though mine never has - but that can be managed with eye drops. I gained weight - and lost it all again, but some of it had been gained because of PMR when I wasn't on pred because I was unable to exercise properly because of the pain a stiffness. PMR itself causes several of the listed side effects of steroids.

This paper

medpagetoday.com/rheumatolo...

practicalpainmanagement.com...

(both the same paper but the reports about it are slightly different)

found that apart from cataracts the so-called adverse effects of pred are no worse in patients on pred than are found in an age-matched population not on pred. What probably happens is that they would occur anyway at some point, pred maybe speeds the process up.

And really - wiki has its good points but it also isn't the most reliable source of medical info!

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There are no alternative treatments besides steroids although I assume you are in the USA in which case there may be a case for your insurance paying for Actemra/tocilizumab.

A few people say they find a very strict antiinflammatory diet has helped them - but I know of none who has managed long term without some pred.

There are quite a few diabetics on the forums who manage their diabetes while on pred - it is not a very high dose, you should start about 15-20mg and then reduce slowly to find a much lower longer term dose.

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PMRpro. I am in the US. Prednisone is not a viable treatment for me long term as contraindicated. I am unfamiliar with the medications you listed as viable Insurance options. Are there people here who have had success with this as an alternative to prednisone? 15 mg seems to be the minimum level my body needs to be free of symptoms. When you refer to finding a lower long-term dose, what is the time frame in your experience? Again thank you so much for your time and input. Janet diagnosed October 2017

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It is only one medication - Actemra is the brand name, tocilizumab the substance name.

Actemra/tocilizumab has been used for rheumatoid arthritis for some years so doctors are familiar with it. The GIACTA study reported just over a year ago showing it was effective in allowing speedy reduction of pred dose without a return of symptoms in GCA so was approved by the FDA with breakthrough status about a year ago I think. In the meantime it has received general approval.

If you use the search box at the top right of the page you will get a list of threads about using it with reports of experiences.

How have you tried to reduce the dose from 15mg? If you go at it like a bull in a china shop it won't work - but often reducing in steps of 1mg or even less will allow patients to get to far lower doses than using the rather optimistic approaches many doctors advocate.

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Hi Janet, I am sorry about your PMR. Can I ask why is pred contraindicated for you?

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Hello Piglette,

I suddenly developed and was diagnosed with a behavioral health/mental health condition in 2004. The use of Prednisone is already with risk of Psychosis but for those of us who have that risk already adding Prednisone is very risk adverse. I am just 3 months into diagnosis (though signs/pain/paralysis was over many months prior). I also have the challenge of balancing my thyroid levels, 100% reliant on supplemenation as I lost in 2 separate surgeries. Everything fights everything. My new Rheumotologist (in the U.S.) I see for the 2nd time 2/9. So far I'm just bouncing between our normal "trials" for PMR diagnosis of 15-10-5 over 1 month which failed quickly once I hit 10mg- have done this twice. Back at 15mg. Now struggling with the choking sensation in my throat and have sent my Endocrinologist a note this morning. 55 and feel like I'm falling apart. In addition have had Fibromyalgia for 20+ years and now Neuropathy of feet so severe coming up my chins and calves barely able to walk, pain unable to control. Hope this puts it into perspective. Janet

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Hi Janet

You really do have problems. I hope some can be sorted out for you.

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Of ALL the illnesses one could be diagnosed with, to learn PMR with ONLY Prednisone as viable treatment of what appears 1-6 years depending on who you're listening to (Dr. or patient) ;) it's really hard to wrap my head around. There are 80 autoimmune disorders and I get this one that is like my wonderful Endo says "like oil and water" yet another one to balance.

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I think there are over 100 auto immune diseases now!

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Whoa, after a quick search I came up with two reliable articles that report both 80 and 100!

aarda.org/diseaselist/

Scanning quickly, I forgot I have a couple more including Sjogren's.

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Or for life: I've had PMR symptoms for just 14 years. I did 5 years without pred - not from choice or contraindications but because the GP relied on treating lab results which said nothing. I've given up expecting it to go away. Though I suspect the greater evil now is lack of adrenal function which required corticosteroid.

There are rheumies in the USA who are using tocilizumab for PMR, not just for GCA. So not JUST pred - though it isn't M&Ms either...

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Thank you PMRpro ~ I am MOST interested in what other choices may be. HOW did you "manage" without Pred for 5 years???

Janet

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As you do - you have to! I worked freelance from home so only had to get from bed to chair in front of a computer and chose my own hours. Our house had a toilet on both floors which made it a bit easier, stairs were at a minimum. Mon-Fri I fell out of bed and didn't shower or dress, just put a swimsuit on and crawled to a gym for an aquafit class in a warm pool, showering there. That helped the stiffness enough to allow me to do yoga and Pilates some days. Nothing helped the pain - that was a constant, but you grit your teeth and get on with it if there is no choice. I couldn't go anywhere unless I could park right outside. I went home again if I couldn't. The crunch came when I was stopped driving for 6 months, totally unjustified, another doctor who didn't listen, which coincided with a big flare. I was totally housebound, I couldn't even get to a bus never mind get on it! I managed to get her to our Italian flat - all on one level, no stairs needed, there is a lift. That made a massive difference to the bursitis pain - I even got to the ski bus and the movement of skiing REALLY loosens PMR hips up!! And I had a lot of time and internet access to research what it might be. A rheumy begrudgingly gave me 6 weeks of pred to cover a trip to the USA - he was convinced it was a flare of another form of arthritis. Six hours after taking 15mg I could move freeling and normally. The rest is history. He didn't agree it was PMR - but a different GP did. I'd not seen her before - she was part time and always on maty leave it seemed. No-one else has ever disagreed with the dx - even agreeing with me it is nearer GCA than PMR on the spectrum.

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Thank you for sharing your experience PMpro~

Prior to my official diagnosis in October I had gotten to the point where I literally could not get out off of my bed I live alone I was having so much upper and lower body pain nearly impossible to stand and hold my weight my legs would give out. I was at the door stop of paralysis with my arms (shoulders to hands) and legs, my neck. People were coming over to help to rearrange things. I hadn't driven in about 6 weeks I couldn't get into a seated position and her out of the car. Was about this time that I started on the 15 mg trial of Prednisone here in the US. It took about 4 days for it to start to kick in and once we lower to 10 mg within two days I was almost back to where I started. I am in the contraindicated use of prednisone as I described here yesterday. I'm not sure what will come out of my February 9th second rheumatologist appointment. it's frustrating I have family members who will say well you just have to decide you either take it or you don't. Well it's not that simple if I don't take it I am basically paralyzed I live alone so that's not doable I've had to quit my jobs.

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Hi Rich, how much knowledge has your doctor got of PMR. It sounds to me that it might be quite limited. Diabetes is a bit of a problem with pred, but with careful management this can be sorted out as a lot of people with diabetes and PMR will tell you.

As others have said currently pred is really the only treatment for PMR.

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I was diagnosed with Type 2 Diabetes in February, 2017 when my A1C hit 6.5 (minimum in the diabetic range). I was diagnosed with GCA the end of May, 2017 and put on 40 mg Pred. Worried about weight gain and crazy food cravings, I followed the advice from the forum and drastically reduced my carbs and went no sugar. I believe that it was October (5 months later) when I went back to have A1C checked and was thrilled to find that it had dropped to 6.0 and thus I’m no longer listed as diabetic. I continue to monitor and so far so good. I do realize that the 6.5 is the lowest diabetic number, but am pleased that even on a higher dose of Pred, it didn’t go up and I was able to bring that number down.

If me, I would want to treat the inflammation with Pred, but also make dietary changes, if needed, while closely monitoring. You never know until you try.

Regarding side effects - sleep. I’ve always been a bad sleeper, but Pred has raised that bar. Yawn

Best wishes.

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Richcar, in our extended family there is a man in his mid 70s with PMR, who had pre-existing diabetes, plus he has been fitted with a pacemaker. His doctor has been very reasonable with his prednisone dosing and it doesn't appear to have contributed to any worsening of his other conditions. In fact he was misdiagnosed with COPD and being treated for that when it was discovered, when he nearly died, that he really had asthma, and with change to his medication he is making a very good recovery from that mishap. I believe his pred dose has been below 10 for some time but as far as I know he hasn't been able to get really low. He was diagnosed about a year before I was so his PMR journey has been between three and four years so far.

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