Polymyalgia steroid use.

Hello aching man.

Like you I didn't want to take prednisone and have managed to get better without it. I was diagnosed early July 2010 and it's taken 22 months for my ESR and CRP to return to normal. But I had most normal movements back after 18 months.

For the first six months, I took no medication - just virtually put my life on hold and lived with the pain, stiffness, tremendous limitation of movement which was the worst. But then it wore me down and I began taking ibrofen (neurophen here) and I'd say that reduced the pain etc. by about - hmm - maybe 30/40%. After a few months on that, the chemist suggested going off it for a while because of liver damage. He recommended Panadol Osteo which I stayed on until February this year. He also suggested that I rotate taking prednisone, Ibrufen and Panadol Osteo in rotation. And I did that but without taking the pred.

I can't be sure what helped the PMR to disappear when it did. It is a self limiting condition and some websites say 2 -6 years, some say 1 - 4 years. I had faith in my body's healing capacity and listened to it as much as I knew how. Diet helped, organic fruit and vegetable with lots of juices and organic rye bread and whole grain porridge, expanding the range a little after a couple of months. Most of these foods have an anti inflammatory effect. Plus various vitamins and minerals. I took iron supplementation and got my vitamin D levels up - well beyond normal. Hope I haven't gone overboard with information here!

Like you I worried greatly about GCA and don't have the expertise to say whether you are more likely to develop it if not on steroids. That seems to be the consensus on the forum. But I took the chance and was highly alert for signs of it. Checking my temporal arteries every day assuaged some fears, though I know now, that test is not definitive. Having 25 and 5mg prednisone tablets in the cupboard for emergencies helped too.

In the 22 months, I twice took 5mgs of Prednisone for 5 days when I had to drive a long way. That enabled enough movement that I could turn my head to the right enough to drive safely.

My doctor is fabulous and fully supportive and I had lots of assistance from good chemists in the area too.

Good luck whatever you decide. Doing it without steroids isn't for everyone but for me it was the right choice. Please ask if there's anything more you need to know. Jill48

I had PMR for 5 years at a low level that was not diagnosed - my blood markers are always low, well down in single figures. I managed with the occasional painkiller to take the edge off the worst pain and acqua-aerobics almost every morning to get mobile. But I'm a self-employed translator - that was possible most of the time. Then it suddenly hit like a 10-ton truck so I could barely move and after 6 months of doctors swithering about I was offered 15mg/day of pred - less than 6 hours after taking the first tablet I was able to walk downstairs normally and also back up. Before it had been one step at a time like a toddler to go down and up was only possible on hands and knees. That speed of response is typical of PMR.

Not taking pred means you will remain very disabled if you have a bad case of PMR. You are also at a higher risk of developing GCA - having PMR makes it a higher risk than if you haven't got it and not treating the PMR increases the risk further. There are studies to show that. If you develop GCA there is no option - steroids or risk going blind and steroids are the only option and at much higher doses. PMR usually responds to 15mg at the start, GCA requires at least 40 to 60mg and if there are visual symptoms even higher. Once sight is lost it doesn't return.

Don't kid yourself - ibuprofen and other painkillers aren't innocent little tablets either. Just because they are sold OTC doesn't mean they are safe by any means. All NSAIDs, non-steroidal anti-inflammatory drugs, can cause bleeding and stomach ulceration and the longer you take them and the higher the dose, the higher the risk becomes. One lady with PMR ended up in A&E after vomiting what is called "coffee grounds" after only 3 days of taking ibuprofen - a very dangerous state to be in. Paracetamol is also risky as it goes for the liver, manages it on its own but if you drink ANY alcohol the risk is higher. It is also not an anti-inflammatory so doesn't help much in PMR. If you are on the right dose of pred it should control a lot of the pain - not all necessarily but you will be able to move reasonably comfortably. You won't stay on 15mg of pred - you reduce very slowly to the lowest dose that controls the symptoms. As you reduce the side-effects improve. There are 82 documented side-effects. Not everyone gets them and noone gets them all. Some, obviously, are more unpleasant than others - but you don't know which group you are in until you try them.

The steroids are "better" than ibuprofen simply because they reduce the inflammation far more efficiently than the dose of ibuprofen that it is safe to take can do. It is the inflammation that causes swelling and that causes pressure on the surrounding cells and pain. Reduce the inflammation - the symptoms improve. Don't, however, kid yourself - it may be longer than 2 years. But men often respond very differently to women, they tend to have fewer pred side-effects and the disease course is often different too. The are often able to do more - noone knows why, it just is so.

Basically it depends on you. If you can put your life on total hold and wait it out as Jill did, fair enough. That was not an option for me or many others. Also - she has gone into remission quite quickly really, it does happen. I also know a few people who have had PMR for anything from 7 to 10 years - I may be fat and have some other steroid side-effects but I do have a reasonable quality of life most of the time. I was only 52 when it started and am not 60 yet - without steroids I would have had a fairly rotten time over the last 3 years.

One thing I would suggest - reading Jill's reply - is that you should get your vit D levels done. If it is low it also can cause polymyalgic syndrome and that might respond to painkillers because I know very few people with PMR who get any relief from simple painkillers. And has your doctor considered any other diagnoses?

There is a lot of info on the sites linked in the PINNED bit at the top of this forum and the other forum mentioned has several male members who maybe can have more empathy?

As Jill says though - any other questions - ask them!

Good luck in your decision, I know it isn't easy.

Eileen

Hi, Jill48 and EilleenH,

thankyou both for your advice and consideration.

I will go away and think about what you have said and I will get back to you when I have absorbed and processed the new info.

Thanks again, speak soon.

Barry....Achingman.

i am with eileen on this one steroids are not the enemy carolk

I have had PMR for about 5 months which is developing slowly. I also am hoping to avoid steroids due to the side effects, and have been using Ibruprofen, which allows me to get on with my life. I am finding I need to gradually increase it - at the moment I am taking 400 mg in the morning and 200 mg in the evening, but am about to increase it to 400 mg at night, as sleep is becoming more uncomfortable. I am also using supplements such as Curcumin which has some positive findings about its effect on inflammation and vitamin B5 and vitamin d3. I am looking at diet too. I would be interested to hear from anyone else who has taken this route. How much Ibruprofen can be taken daily, how you are managing it. I wonder how Achingman is getting on.

Tricia

You have presumably read my response earlier in this thread. If you only have a mild version of PMR you possibly can get away without pred. I did for about 5 years and used ibuprofen occasionally for relief of bad pain, it does nothing for the stiffness and that - believe me - can make you immobile. When the PMR developed into a real 10 ton truck I couldn't get out of bed, stairs were impossible normally. Without pres I would have needed a wheelchair and a stairlift.

Always remember: all the NSAIDs are also powerful drugs with a lot of side effects, some of them as dangerous as those of pred, especially of you use them long term which isn't recommended. Perhaps the most risky is the gastric bleeding and that can be fatal. Just because you can buy painkillers without a prescription doesn't make them unreservedly safe. I mentioned the lady with coffee ground vomiting after 3 days and another was put on paracetamol (not an NSAID) by her GP because he was sure her pain was osteoarthritis not PMR "and that will be safer". After a couple of months she had wildly elevated liver markers - bad enough to ensure her a liver scan within a week or two. The blood values returned to normal after a few weeks off paracetamol. Her GP seemed surprised - but paracetamol is also not a nice safe drug, it can kill at doses not much above the therapeutic dose. Ibuprofen can cause cardiovascular problems such as heart attack or stroke used long term and bleeding in or perforation of the gut can happen at any time and without warning.

There are a lot of people who use dietary measures including anti-inflammatory supplements and foods. Very few tell us they have been totally successful. Proper controlled trials have shown that rheumatoid arthritis joint pain can be relieved by a sub-total fast followed by a vegan diet - but as soon as even very small amounts of dairy or meat/fish products are reintroduced the effect is lost.

If your PMR is continuing to progress - you may well end up in a far less mobile state. I do hope not and that you escape the worst.

But your basic question about how much ibuprofen - the usual maximum recommended daily dose is 1200mg for ordinary pain relief taking it as occasional doses rather than a long term dosing scheme although it can be higher in certain circumstances, up to 3200mg. But the manufacturers warn against long term use and that you require frequent monitoring by your doctor if you do use it that way.

Nothing would induce me to use it that way - steroids may have nasty side-effects but you don't get them all and most of them are rare.

Eileen

Hi Tricia,

From my experience, there is an end in sight. PMR is self limiting and I was lucky (or did the right things) and recovered within the lower end of the average time span. Both shoulder and hip girdles were affected and I didn’t touch the top of my head for over a year, had trouble turning my neck, putting on socks etc etc. Before I got a bed pole I could only get out of bed by rocking. Once in bed, I couldn’t move and had to stay where I’d landed till I needed to get up. Thank goodness my spine stayed strong and pain free. I mention these details so you know I didn’t have a mild dose.

My 2 monthly blood tests were an accurate predictor of the progress of the disease. It took 20 or 22 months, sorry I can’t remember accurately without looking it up, for blood results to get back to normal. But except for the groin muscles, my legs were functioning normally about six months before that. Neck and both shoulders and those adductor muscles were the last to heal. An interesting thing - before PMR couldn’t do a full squat and I now can. it's odd that my adductor muscles are more flexible?

How I managed the PMR was that I went on a really time consuming food regimen which I couldn’t do completely as I didn’t have the flexibility to give myself coffee enemas. My doctor and I both tried to find someone to do them for me but we were not successful. So I just took the supplements and prepared the meals as per the diet regime. I also made curcumin capsules (we call it tumeric) got my vitamin D levels up and took iron supplementation. I avoided citrus fruit because I’d read they were contra indicated if you have a collagen disease.

What a co incidence that this posting comes up now, as I chatted with a pharmacist last week and just happened to mention that I had survived PMR without steroids. She was very positive about doing it that way, said steroids were a nasty medication, her words not mine, so please don’t shoot the messenger.

In fact pharmacists (and a supportive doctor) were a very good source of information and help. The rheumatologist wanted to start me on prednisone there and then in her consulting rooms but I wanted to think it over. I took ibrufen (neurophen here) for three months and two courses of 5mg prednisone for 7 days when I had to drive a long way. That small dosage of pred enabled me to turn my head more easily when driving. More than one pharmacist suggested not staying on any one medication for long and rotating prednisone, panadol osteo and ibrufen every couple of weeks. But I decided I wouldn’t use the steroids again unless it was an emergency, though I kept a supply on hand.

Having a positive attitude and seeing myself as a well person who just happened to have PMR helped. Listening to my body and accepting that I couldn’t live at the pace I had done before, taking naps when needed and not trying to do things my body didn’t want to do. The best illustration of the effects of reduced or no cortisol in PMR, was when I tried to loosen a tight bolt. I strained both wrists which caused bursitis and tenosynovitis and for the next five months I had to wear splints. I understood fully then that it is an enormous slowing down of the process of removing toxins caused by inflammation that is at the heart of PMR. So it makes sense to avoid anything that would cause muscular strain and produce the normal toxic waste products of exercise that lead to inflammation. I made a conscious decision to put normal life on hold until I was better.

The PMR has not come back. I haven’t done much in the way of exercise since I recovered, just my usual fast walking, gardening and normal work around the house. I eat normally, just whatever I ate before the PMR plus a couple of fresh organic juices a day.

I don’t think prednisone is the enemy but it can be a very nasty friend.

Hopefully there’s something useful for you in this Tricia. Good luck and don’t lose heart. It’s tough but it can be done.

It would be good to have a website for people who are recovering from PMR without steroids.

Best wishes

Jill