Polymyalgia steroid use.

Hi Jill - delighted to hear of your success with diet.

But people must also remember than in about a quarter of PMR cases globally the patients go into remission within 2 years - 2 years is the usual figure quoted by inexperienced doctors. I lived for 5 years with PMR that waxed and waned and really didn't greatly affect my way of life provided I was faithful to my exercise to get mobilised in the morning. And strangely - downhill skiiing was the best!

When the PMR hit hard I couldn't do more than prepare the simplest of meals - holding anything was so painful I dropped things. Even drinking from a cup was a problem. Preparing the sort of diet Jill is talking about would have finished me as I couldn't stand for more than a few minutes or use my hands/arms for much longer. We lived in a house with stairs and one toilet, upstairs, and moving wasn't an option at the time. I could go to the loo during the day or have food. I had to have some effect very quickly. I had a later flare, probably GCA, which was when the pred problems started - for nearly 2 years I'd been well below 10mg/day and I DID have problems once the dose had to put back to 15mg - but there was no way I was going to risk going blind. And in GCA that is in the wrong place, i.e. in the head, that is an ever-present risk. Pred, and at high-ish doses is the only known prevention for loss of vision.

Don't misunderstand my post though: in the last one I was warning about the dangers of other drugs not saying you must use pred. OTC preparations are not innocent just because you don't need a prescription. If you bleed you have little or no warning. At least with steroids and the worst of the long term side-effects there is some warning provided you are being monitored properly. That's up to you and your doctor to manage. Steroids are NOT as bad as they are portrayed by some people. Many people experience few side-effects, some lose weight not gain it. Sometimes people already were osteopeneic before they took the pred - so couldn't blame pred for that. Pred has been in use for many years, the side-effects are well documented. Other drugs touted for PMR are not as well known, are not used in the same way and the side-effects are also less recognised.

If you have PMR, don't have to work and have someone to help you then I'm sure you can get through it without steroids. OTOH, if you are in a wheelchair, unable to function enough to deal with even restricted normal living - steroids may be your lifeline. There are plenty of people who come into that category.

Jill - if you want a website for PMR the non-steroid way, why not start one?

Eileen

Thanks to both of you for your care and concern. I really appreciate you sharing your stories and views. Eileen I can totally understand why you took the steroids at the point when the PMR really hit you. While it was mild you managed with other forms of support.

Jill, you were able to manage with diet and the NSAIDs and supplements, as I am doing at present. I am aware that my symptoms are mild at present and am doing everything I can so that they may stay that way. I have not been as strict on diet as you, but have always had a balanced diet with very little processed foods or sugars and caffeine, and do not have food intolerance.

Whichever way my symptoms go, it is good to know that there are others out there who have been there too, and are offering advice and support.

Jill, I realise I need to involve my doctor more and ask for blood tests. When I told her that I did not want to take steroids at this stage, she was very supportive and even checked with a rheumatologist whether this would delay recovery, the answer being no, as I'm sure you know. But she did not offer any support and at least the blood tests would let me know how the PMR is progressing, plus a check on any ill effects from the Ibruprofen. So far so good, but I have only been on them for 6 weeks. I don't think I can get Panadol Osteo here, it seems you are not liviing in the UK? But maybe ordinary Panadol or Paracetemol would be fine as a break from the Ibruprofen. Plus I am only taking 800 mg daily at the moment.

So thanks to both of you and all the best

Tricia

I forgot to say that I am also seeing an acupuncturist and a cranial sacral therapist. I am a homeopath, so am trying a number of remedies too, mainly to support the PMR.

Hi Trica,

I’m in Australia where Panadol Osteo is just another name for Paracetamol. As you can see in the post above I didn’t take anything for the first 6 months, then I took 6 x 665mg tabs a day, then reduced it to 4.

I was very wary of the Neurophen and took only 400mg a day, 1 tab morning and evening. The pharmacist suggested that I could take both those medications together but I never did.

In general, I ate quite well before PMR but I do have food intolerances. You don’t, so hopefully that will mean you have less to detoxify. To be honest, there’s no way to prove if the diet helped me recover more quickly from the PMR. Blood tests showed it definitely improved my general health ie cholesterol halved, glucose intolerance vanished, iron up, Vitamin D up. I worked on the assumption that those improvements would make it easier for my body to return to balance.

Perhaps it would be useful to you to know that my PMR didn’t remain static in terms of which parts were painful. Some parts got better, some parts got worse throughout the time I had it. So don’t be worried if that happens to you. I can give you more details about any of this if you like.

I’ve just checked my ESR and CRP blood results and they did show a steady overall reduction with a few minor fluctuations which correlated with what was happening in my body. The odd thing about ESR and CRP was that they both reached their highest levels before any PMR pain manifested in my body. Since 3 of the main symptoms of GCA are a dry cough, inexplicable weight loss and night sweat, icy cold ones in my case, I think I had GCA first. Add to that when I was out in the bush, I had facial tenderness and pain on both sides of my face. I went completely deaf in the right ear and partially deaf in the left ear after the flight home. The deafness persisted for three weeks. This was all before the development of PMR pain and subsequent diagnosis. I only read about those particular symptoms of GCA a few months ago, so I was blissfully ignorant.

Please keep in touch and let us know how you are faring. I trust and hope it will be good news.

Jill

Hi Eileen,

As I said in my previous post, I can’t be sure that I wouldn’t have recovered anyway despite the diet and being able to cancel things and rest a lot.

You kept yours at bay for five years. I don’t know if I’d have managed to go for that long without steroids. It’s difficult to judge what’s best for anyone other than myself. So I’m not suggesting that other people don’t take prednisone. And I agree with you about the dangers of many pharmaceuticals. I am horrified that Neurophen is not on prescription and that Neurophen for babies is being advertised here.

One thing these message boards show is that though PMR has visited us all, we’re all different in our personal circumstances, the demands on us and our obligations, our attitudes, our thoughts and responses, in how our bodies cope with various medications and in our tolerance for pain. One size doesn’t fit all does it?

All I can really do is share my experience in the hope that someone will find it helpful.

Hope you are progressing towards full health (everyone) and that the skiing this year will be fantastic (Eileen).

Jill

I have recently been diagnosed with PMR and the usual dose of 15mg Prednisolone has been prescibed. However, after witnessing the effects of taking steroids long term on my Mother I am fully aware of the implications of taking this drug. I have read the contributions here with interest, which give for & against taking steroids. I am inclined to try alternative medicine to begin with including acupuncture, Vit B5, Evening Primrose oil, Kelp and Vit D beafore starting the steroids.

I already have a relatively healthy diet, don't smoke & only drink 1 or 2 glasses of red wine with a meal each day. I plan to, and have started to, increase my intake of oily fish. I have cod liver oil on a daily basis. I regularly go to the gym, but will now only do light exercise.

I was encouraged to read that Eileen is a skier, as indeed I am too. I have a holiday booked next month & hope to enjoy some skiing (Shoulder pain permitting)

Thank you everyone for your contributions, it has certainly helped me to weigh up what is the best course of action is for me.

Jan

i dont agree with not taking steroids but i wish you luck carolk

Whilst I fully appreciate your attitude Jan - beware the concept of relying on alternative therapies entirely. I too had a relatively healthy diet, don't smoke and drink wine moderately. Like many of my fellow-PMR-people, I have tried anti-inflammatory foods and vit D - to no avail. There is a level of PMR that you can live with that way - but when the 10 ton truck appeared I couldn't even get out of bed at times and was pretty much house-bound.

I know of people who looked at acupuncture - and whose practitioners were honest in saying there was relatively little to be achieved. The same applies for homeopathy by the way. It may be it helps your pain however - but I couldn't afford to have the sort of amount of acupuncture it would require!

Can I ask, why does your mother require steroids and at what dose? Although the starting dose for PMR is 15mg it is often possible to reduce below 10mg quite quickly (not always) and many patients DO get down to 5mg without problems - at which dose the side-effects are relatively minor. And the majority are off steroids within 4 years or so - PMR can and does go into remission.

Above all, remember that if you choose not to use pred you are at a considerably higher risk of going on to develop GCA. Please do watch out for any symptoms suggesting this is happening and do not delay going to the doctor. Untreated GCA carries an extremely high risk of loss of vision - and very quickly, it isn't a "wait and see" diagnosis. Unfortunately, GCA can only be treated with steroids and at a high dose initially. Even then, it remains a serious illness although it is curable and often the period on pred is shorter than for PMR.

All the best

Eileen

Jan

I spent many months bedbound and travelling to rheumatology appointments by ambulance and wheelchair but my then consultant failed to diagnose me. I made a spontaneous recovery after about 10 months but by the end of the year I became very ill with different symptoms. A different rheumatologist diagnosed both PMR and GCA. It's highly probable that if I had been diagnosed the previous year and treated accordingly, I would not have succumbed to GCA. About 3 in 10 patients on steroids for PMR are at risk of developing GCA whereas the risk rises to around 7 in 10 for those not treated. So, as Eileen has said above, do be vigilant for any head pain, jaw pain or eye problems such as pain and blurred vision as such symptoms will need immediate treatment with high dose steroids to protect your eyesight.

I wish you well with your decision togo down alternative therapy route - do let us know how you get on. Happy ski-ing! :O

Thank you for your prompt responses and warning to be vigilant for any of symptoms associated with GCA. I am due to start acupuncture on Wednesday. I will keep in touch & let you know how I get on. I wish you all well. After being a very fit person for my age, I am finding it very difficult to come to terms with this condition and remain very wary of steroids. My Mother has needed steroids for Lupus SLE & I can't deny that they have been a life saver for her as she was diagnosed over 20 years ago.

In my initial contribution I failed to mention that I attempted to start taking the steroids with just 5mg, with an adverse reaction. The pain disappeared almost immediately, but this was replaced with a severe migraine with pains to the left temple; nausea; palpitations; high blood pressure; & a very dry mouth. It necessitated me seeing an out of hours doctor, who refused to accept that the steroids had been the cause of this, but rather on being an anxious person, which was news to me. I was prescribed sleeping tablets and advised not to take further steroids until Monday morning when my surgery would be open. I wonder how I would have been after taking the prescribed 15mg dose!

jan3

severe migraine with pains to the left temple; nausea; palpitations; high blood pressuer

These were among my symptoms when diagnosed with GCA!

I would be so surprised if your symptoms were purely due to just one 5mg dose of steroids, especially as so very many people take short term doses of steroids starting off quite high and then reducing and off them in about 6 weeks for various conditions without any problems - for instance, my elderly aunt was prescribed a short sharp blast together with antibiotics for a chest infection. I wonder if you might have been allergic to one of the ingredients that bind the pills, perhaps?

I do empathise with you feeling "very wary of steroids" - it's probably true to say that many of us do have a love/hate relationship with them........hate them for what we read about their risk of possible side effects such as weight gain, thinning bones, etc (although some lucky people don't get any!) but LOVE them for the fact that they got me moving again (even if walking a bit like a robot at first!) and, most importantly, they saved my eyesight.

I was told by my consultant that acupuncture wouldn't help me so I didn't go down that route, but I do so hope that you will find it successful for you when you start it on Wednesday. Good luck.

Hi Jan

I last reported on my condition end October. I have now had PMR for 5 months and have been managing on Ibruprofen, 400 mg after breakfast and 400 mg after supper. Some days are better than others but I do not at present have a severe dose of PMR compared to others. It is hard to work out why the symptoms get worse and better, and I am much stiffer as the Ibruprofen wears off. I do not want to take any more. I am about to have blood tests to monitor the PMR levels and the Ibruprofen. I am intending soon in conjuction with my very supportive GP to change to Paracetomol for a while. If I stop the Ibruprofen, the symptoms return including a drained feeling which makes it harder to cope.

I have also tried other treatments. I am a homeopath and am taking some remedies to help the muscles. Acupuncture did not work directly for me and my neck kept going out - this was almost worse than the PMR symptoms. That led me to a cranial osteopath who has really helped me. I go regularly and it keeps me balanced.

Like Jill I also take supplements. Curcumin has a very good record in helping inflammation - I had a break for 3 weeks when I ran out, and since I have restarted it I have felt less stiff so it may well be helping.

My Vitamin D levels were low before PMR was diagnosed, so I have been taking that. I also take EFAs or cod liver oil.

I am aware I have mild symptoms compared to many people and would consider steroids if I could not function but am wary as long as I can manage. My doctor is supportive.

I also wish you luck and lets keep in touch with any tips and progress.

all the best

Tricia

Thank you Mrs O & Tricia for your prompt responses. As the out of hours doctor I saw on Friday evening advised me not to take anymore steroids until Mon am I have had this weekend to read the responses on this website and to carry out some research into the condition.I have decided to contact the GP tomorrow to report my adverse reaction & listen to his advice. At least the weekend will be out of the way.

Thank you again

Jan

Hi Tricia

It's so good to hear that you're PMR has remained mild enough to be able to manage without steroids.

Just a word of caution with tthe long-term Ibuprofen. When I was bed and wheelchair-bound in my early days of non-diagnosis, I relied upon Ibuprofen for many months, initially just to enable me to get to the loo and to get in the ambulance for rheumatology appointments. I am quite pill-phobic so I took the smallest dose of Ibuprofen that I could manage (Paracetamol did absolutely nothing for my pain). However, towards the end of that first year, a routine blood test revealed that I had developed Chronic Kidney Disease Stage III - I will always wonder whether that was caused by the Ibuprofen which is well-known to adversely affect the kidneys and liver. I have had just one kidney since my teenage years (just a couple of years ago! so it's possible I was at increased risk.

I found that eating a load of anti-inflammatory foods, whilst not curing my PMR, did help to relieve my pain levels. My daily essentials included beetroot, garlic, turmeric, avocado, including oily fish several times a week. My consultant ophthalmologist advised that turmeric is as potent an anti-inflammatory as steroids. The best news of all from a dietician at one of our support groups recently was that 70% dark chocolate contained an anti-inflammatory ingredient!

Keep well.

And another aspect of using ibuprofen, especially long term: it also causes gastric irritation which, if bad enough, can lead to gastric bleeding. It also makes you bleed more easily, like aspirin. It will work in mild cases of PMR, not least because it is also an anti-inflammatory and it is suggested by some rheumatologists for the management of mild PMR.

However, we have a lady on the other forum who initially was prescribed ibuprofen by her GP for the aches and pains she went to him about. After 3 days of a moderate dose she started what is called coffeegrounds vomiting - her stomach had started bleeding (blood in contact with the acid in the stomach turns into this foul smelling vomit that looks just like ground coffee. It is very dangerous and requires admission to hospital.

Another lady was told to take paracetamol regularly (not just the odd dose) to deal with the pain her GP thought was osteoarthritis rather than PMR. After a couple of months her blood liver markers were much higher than they should have been. Luckily nothing nasty was found at the emergency scan she was sent for - and the blood levels returned to normal once she stopped taking paracetamol.

Steroids may be scary when you look at the list of side effects - NSAIDs can also cause life-threatening side effects in some people and paracetamol is not good for your liver either - it is very easy to destroy your liver with an overdose. Just because they can be bought OTC without a prescription does not make them sweeties.

Eileen