Alternative strategies for dealing with PMR

[MerryMiller]

Are there any examples out there of PMR sufferers who’ve managed the condition without steroids? …and if so, what were they, and how long did it take! And information would be welcomed, be they successful or otherwise.

[DorsetLady PMRGCAuk volunteer]

Now you have posted you can see related posts...but tbh Pred is the go to drug... and many have tried without initially but as their PMR has deteriorated they have decide that is yhe way to go.

No one can tell you how long your PMR will last - its described a self-limiting disease - and that's what it does, in it's own time...could be 2 years, 4 years, 6 years -or longer. Pred doesn't cure it, just controlled the inflammation cause by the underlying illness until it goes into remission.

However if not controlled it can lead to GCA - a much more serious illness, and failure of other organs due to the inflammation in your body.

[howtotaperdown in reply to DorsetLady]

is it the inflammation felt in the 'stiffness and pain' in the body or as shown in the blood analysis of CRP levels etc. ? I'm asking as I taper down and of course have difficult days, I wonder if this is a matter of comfort or possibly leading tot he danger of GCA and other problems from inflammation.. even if the blood levels have improved vastly since on pred..

thanks, there is such a wealth of information shared here...

[DorsetLady PMRGCAuk volunteer in reply to howtotaperdown]

The inflammation causes the pain, and for most people [but not all] it shows in the bloods as well ... but as we often say those can lag behind anyway... so always be aware of the return of symptoms.....

Unfortunately because the raised CRP/ESR levels are quoted so often in guidelines etc, some doctors only take notice of them... whereas it should be symptoms first and foremost - USUALLY confirmed by raised bloods...

[SnazzyD]

This question comes up every so often and there isn’t much positivity to give back to be honest. If there was one, we’d all be on it! Occasionally a person will say they are embarking on a steroid free journey but I can’t remember them coming back cured. The word inflammation is thrown about in health media and it gives the impression that it’s all one and the same thing so surely anything that is anti-inflammation must help PMR and any other condition for that matter. The more one looks into inflammation the more complicated it is and multiple mediators are involved. Triggers to the inflammation are different too. PMR between people isn’t identical either and sometimes it is another condition in early disguise like rheumatoid arthritis. Steroids are great because they have a broad effect, hence the side-effects, not all of which are certain.

Steroids are brilliant at what they do but sadly they get a very bad rap. Some of this is due to many doctors thinking that gaining weight, becoming diabetic with dissolved bones is inevitable. It really isn’t given targeted lifestyle changes. It isn’t a picnic; there is a chronic autoimmune disease going on but it isn’t the end of the world either. The risk of not taking steroids is worsening mobility, chronic acute pain and an increased risk of giant cell Arteritis which is bad news with even higher doses of steroid needed to avoid blindness. I think sometimes Pred also gets the blame for people feeling bad when it is actually the autoimmune disease in the background. PMR/GCA are life changing and Pred stops worse things happening. It sounds like I think Pred can do no wrong, it does have its annoyances, but nothing else seems to work as well.

[PMRpro Ambassador]

The mainstay of management of PMR is corticosteroids - there is no cure, all that can be done is manage the inflammation and hence the symptoms. There are a couple of biologic drugs that work - they are not approved in the UK and the opinion of PMR experts in the UK is that they are unlikely to be available any time soon.

Pred manages the inflammation very effectively - in small numbers of patients some gain relief at a lower dose of pred with methotrexate or leflunomide, which are DMARDs used for rheumatoid arthritis and other inflammatory forms of arthritis, They too have adverse effects and do not work universally - pred almost always works.

In most patients the underlying autoimmune cause of PMR usually burns out eventually - many doctors claim in 2 years but that is a myth, it can be anything from a year to 10 or more years and for a small cohort of patients it is life-long. We have several members who are well north of 10 years and some still require relatively high doses of pred of more than 10mg.

Inflammation left unmanaged can lead to higher risks for other disorders - including cancers - and long term unmanaged PMR is a very depressing, painful and disabling condition. It is felt by some experts that unmanaged PMR is more likely to progress to GCA, and if that happens the choice is pretty stark: much much higher doses of pred, as much as 80mg per day may be required to reduce the risk of total and irreversible loss of sight.

In the 14 years I have been on pred I have had my share of side effects but none that were worse than the 5 years of PMR without pred. But once I knew how - most of the adverse effects of pred can be managed if you do experience them. I have no signs of diabetes, osteoporosis or most of the other complaints. I gained weight with PMR - I lost it while on pred. My cholesterol is high because of the alternative medication I have been given to get me off pred.

[piglette]

Quite a few people try without steroids at the beginning, but there is a very high failure rate. Personally I would not try it!

[Ruins67]

Hi, when I was first diagnosed, I do remember when I googled PMR reading how one woman managed without steroids. I don’t think it was on this site though.

If I remember correctly, it was a combination of things. Tumeric, CBD oil, painkillers, she also forced herself in terms of regular gentle exercise, and yoga . Lastly was diet. I do think diet is important. I know I don’t eat as well as I should, but I’ve made it a regular thing that every morning I have fruit for breakfast and that usually consists of blueberries in with either raspberries or strawberries etc. I haven’t made one yet, but my sons wife has sent me a list of anti-inflammatory foods and recipes for healthy smoothies which include ginger and other good ingredients. I might add that I have never smoked in my life and I very rarely drink alcohol.

I’m coming up to 2 years now with PMR and I think looking at some of the posts I haven’t suffered as badly as others. By the time I was diagnosed I had problems walking and was taking a high amount of ibuprofen. It was also the orthopaedist that I was seeing for what I assumed was back pain that diagnosed my PMR. Because I could still do things when I went to the hospital, the rheumatologist diagnosed ‘probable PMR’. Doing things meant lifting a leg and bending over. But these have always been my go to exercises when I get up in the morning in terms of stretching, especially as I get older. I also think after having had four children two with virtually little pain relief, I have a high pain threshold. Two frozen shoulders before this helped contribute to that threshold!

if you think you can manage without steroids and are prepared to change your diet but include some of the above medicines/supplements in terms of pain relief etc I would go for it. But certainly do not feel bad if it becomes too much and you are forced to go on steroids.

I was doing quite well until this year, when I had a couple of chest infections at the start of the year, a mild dose of shingles and a case of blepharitis. My dosages went up to help me get over these, but I’m now on 3MG and hoping to go to 2MG soon. I’m also hoping by the start of autumn I may have tapered off altogether. Fingers crossed 😊

[Oh-my]

I railed against taking steroids and lasted several months without until a took a sharp turn for the worse. After lots of tears I took pred and have not regretted it.

My GP did suggest alternatives. They were basically something like ibuprofen but considerable stronger but they too come with side effects and were only recommended for people who were allergic to pred.

During those early days I read up on as many cases as I could of people who tried other ways. There was a lady who managed through having physiotherapy and dancing every day. But that was one person in who knows how many. My GP told me to keep moving and I have found it helps so maybe there is something in that.

[WaltzG]

I have PMR/GCA and am intolerant of steriods (prob due to epilepsy medication interaction) and am being treated with methotrexate and a biologic tocilizumab injection. I am now, after nearly 3 years, back to a normal life. in the UK tocilizumab is only given for 12 months so there are no guarantees but so far so good!!

[DorsetLady PMRGCAuk volunteer in reply to WaltzG]

in the UK tocilizumab is only given for 12 months so there are no guarantees

..and only for GCA not PMR…..

[WaltzG in reply to DorsetLady]

Didn't realise not given for only PMR .....tho wish I had only PMR !!!

[DorsetLady PMRGCAuk volunteer in reply to WaltzG]

Unfortunately the trial was only done in GCA patients - and only for a year - which is why it’s normally restricted to that period. Bit bonkers really as for those with other conditions it’s not.

Actually I only had GCA -think PMR can be more difficult in many ways…

[WaltzG in reply to DorsetLady]

I think threat of sight loss with GCA very difficult ......

[DorsetLady PMRGCAuk volunteer in reply to WaltzG]

As is the actuality - but we lucky ones with only partial loss - move on as you do with any impairment -

healthunlocked.com/pmrgcauk...

[MerryMiller in reply to WaltzG]

Thanks. Helpful and appreciated.

[Gimme]

Well, I managed for a lot of years, using ibuprofen, but that was due to not getting a diagnosis, mainly because of my age. I see that you are 71 and I really wouldn't go down the NSAID route without medical supervision, because of the potential effect on your kidneys, which often don't work as well as we get older, and you also need to protect your gut.

Overall, it is important to keep your doc on board.

However, whether you end up on pred or not, this is what I have learned. Take Vit D3 at 2000IU daily regardless. My rheumatologist was extremely specific about that. Have a look at your diet, specifically your sugar intake, alcohol and processed food, especially cured meats and seed oils. Make sure you have omega 3 in your diet and that you also get sufficient green leafy veg. For me, I am extremely reactive to sugar and high carb fried snacks; alcohol slightly less so. I suffer the next day after a binge. Keep moving, gently. You need to keep your circulation going to take oxygen and nutrients to sore muscles and remove the waste and also to maintain muscle condition. None of the above are cures, you have an auto immune condition, but I have found them helpful in reducing my symptoms.

[PMRnewbie2017 in reply to Gimme]

Are you sure you mean Omega 6? Usually our diets contain too much omega 6 at the expense of Omega 3.

[Gimme in reply to PMRnewbie2017]

lol pred induced brain fart, Omega 3, corrected. Thank you

The stuff you get in oily fish etc.