No steroids. Ever.

[tragedy7]

I'm a 53 year old Canadian male with PMR. It started last fall, and hit me like a ton of bricks with painful shoulder and hip involvement. It was terrible at the beginning. Most days it took me 10 minutes to get out of bed and another 10 to get dressed. Putting socks on was almost too painful to bother. I went from the guy who carried the suitcases, to the guy who needed help out of the car seat.

I did, and continue to do, a lot of research on PMR. This site has been tremendously helpful, and I'm getting to know some of the people in this forum even though I have never posted. What surprises me is the large volume of posts related to the side effects of steroids like pred. That's worrisome.

Knowing my own environmental sensitivities, my gut told me from the start to avoid pred at all costs. The answer? For me, it was finding a naturopath specializing in nutrition. She put me on a healthy diet with lots of vegetables and fruits, and a daily supplement regime.

In a matter of a few months, the pain in my shoulders, arms, hips and thighs has declined significantly. I have regained a lot of the flexibility in my arms, and I'm actually excited to get on my rollerblades again, something I thought I'd have to give up altogether.

I take two regular Tylenol twice a day for muscle/joint pain, but some days I manage without it. Best of all, I'm sleeping through the night now. I wake up energized now instead of feeling tired the minute I got up.

Feels like I'm heading in the right direction.

I know there are risks for not going the traditional medical route to treat my PMR. I could worry about the potential for GCA complications or a permanent loss of muscle flexibility. But seeing my own progress, and hearing about so many pred complications every day on this forum, it's a risk I'm willing to take. At least for now.

I will keep you informed on my 'non pred' progress if you'd like.

[DorsetLady PMRGCAuk volunteer]

Hi,

Please do!

I'm sure many if us would have preferred not to go down the Pred route, but for various reason could not.

I'm sure in the past many did go through the illness without medication, mainly because they were never diagnosed, so no doubt it can be done.

You are on the younger end of the age spectrum, and also male, both of which may help your recovery so it will be interesting to hear your progress.

All I would caution is - just be aware of any new symptoms.

[tragedy7 in reply to DorsetLady]

Thanks DorsetLady. I'll keep you in the loop. Good advice. I will watch closely for new symptoms.

[Rugger in reply to DorsetLady]

Your comment "...in the past... without medication...." rang a bell with me. My sister remembers my Mum coming back from the doctor, many years ago, saying "That's it then, I've got rheumatism." Both my sister and I have developed PMR! Mum would have been around the same age as us, when diagnosed with PMR. She lived to be 97 and was not 'rheumaticy' in her later years...... Needless to say, I'm on pred, but my sister chose the no-pred route!

[DorsetLady PMRGCAuk volunteer in reply to Rugger]

That's interesting, as I said I'm sure many 'suffered" PMR and did get through it without a diagnosis or treatment.

I trust you and your sister are keeping notes, and comparing symptoms. I'm sure many on here (and the charity) would like to know the outcome of both stories. Even though you are siblings and one might expect similar journeys, as we're always saying everyone is different.

Good luck to both of you. 👍

[Rugger in reply to DorsetLady]

Interesting yes, but no notes, as my sister's experience was 5 years ago and she 'recovered' in a year. She says she has a very high pain threshold......! She is the more 'alternative' of the two of us and makes her own kombucha, kefir and kimchi, (must be something to do with the magic letter 'k'!) whilst I am a bit more mainstream, having worked in the NHS for almost 40 years! As you say "Everyone is different"! I was diagnosed just a year ago.

Thank you for your wishes and for all the contributions you make to the forum.

[markbenjamin57]

Hello tragedy7

Thanks for your detailed and articulate post. I can well-relate to your story relating to the onset of PMR, and the initial symptoms - and also your reluctance to 'give-in' to the steroids to manage the symptoms.

From this excellent forum I've learned that individuals' health / personal contexts with PMR / GCA vary considerably. And, as DorsetLady says, un / mis-diagnosed PMR / GCA symptoms can lead to far greater life-changing problems down the road.

Caution seems to be the by-word in the normally advised steroid treatment process here, especially in the case of possible GCA and the potential for total sight loss - which can be catastrophic.

So, the best / most appropriate treatment is often a very individual and personalised process. Hopefully, this is with the assistance of an informed doctor or specialist - but it's not always so...

All the same, I look forward to following your progress - and with an open mind, as always!

Best wishes

MB

[SheffieldJane]

Yes do let us know how you get on! I think you have been very lucky and long may it continue. Without Pred. I couldn't even get in and out of a bath. If I was to contribute anything to family life I needed my mobility back and quickly. Now I'm faced with trying to get my health and strength back as I wean myself off the steroids. Losing my sight has always been a fear of mine having had two grandmothers go blind. I was afraid to let the inflammation run rampant. I am sure exercise and good nutrition will play a big part as will supplements. There has been no side effect as bad as my pre- steroid PMR symptoms. If you need them, take them, it's all we have right now.

[Suetum]

Well if there was a fire in the house I would grab my Cochlear implants (totally deaf without) and my steroids!! Can't do without either!!! Hope you continue to manage without medication but I have learned to love mine and tolerate the side effects for the benefits and peace of mind

[PMRpro Ambassador in reply to Suetum]

I'd worry less about the pred - the chemist would provide them!! The implants? No question!

[katie-w53]

It's great to hear that the naturopathic route has been so successful for you. I've succumbed to steroids (reluctantly, but had to keep myself functional for those who are dependent on me). However, like you I've been doing lots of research, on this site and elsewhere, to find more natural ways to support my body along the way. I've changed my diet (cutting out caffeine, alcohol and refined carbs/sugars, eating lots of fresh fruit and veg), am walking every day and also I'm finding physio and gentle yoga very helpful in releasing some of the stiffness in my neck and shoulders.

I would be really interested to follow your progress, so please do keep posting. Also, do you mind me asking what supplements your naturopath advised?

Best wishes

Kathryn

[tragedy7 in reply to katie-w53]

Hi Kathryn,

Thanks for asking! I don't mind sharing. I think most of the dosages are standard, and I take most of the supplements with meals. She asked me to take:

Vitamin D3

Apple Cider Vinegar

Calcium Citrate & Magnesium 1:1

Co-Enzyme Q10

Milk Thistle

Fibre (capsules)

Chlorella Spirulina (with juice)

Probiotic

B12

Zinc

She gave me a lot of diet advice as well, and recommended that I reduce the 'calcium thieves' that are coffee, alcohol, tobacco and black tea. I think the underlying theme is inflammation reduction through improved overall diet and health.

It's no miracle overnight cure. But I'm noticing a gradual improvement over weeks and months. Sometimes I surprise myself by doing something that I haven't been able to in a while. Like grabbing that jar off the top shelf in the kitchen. I hope the progress continues, and it doesn't matter how long it takes. I just want to be healthy again.

[sennetta in reply to tragedy7]

Hi Tragedy7,

Very interesting posts and a route I would have chosen, had I not been so befuddled by pain and confronted by a GP who mistook my questions and desire for discussion as an indicator of my being several sandwiches short of a picnic. Steroids rang warning bells for me too but not nearly so many as are jangling around my head now with the benefit of hindsight.

I am not using a naturopath, although if anyone knows where I can find one not too far away from North Wales, I would be pleased to have some information. However, I have settled on most of the supplements you have listed and have organised my nutrition according to "The Immune System Recovery Plan" by Susan Blum.

I would be interested though to know, though, in what form you are taking your spirulina and about the dose of Milk Thistle - are you taking this all the time? I understood that I was to take 15-20 drops twice a day until the bottle is finished and then repeat the process 6 mths down the line. How much cider vinegar are you taking every day?

Sorry about all the questions - I am really interested to know.

Good luck with it all.

[jwb43 in reply to tragedy7]

Tragedy are you sure it was PMR .?

[jwb43]

Your journey sounds very similar to mine. I'm also for years in trying to manage without prednisone. it seems to have spread throughout my entire body but the pain is not as severe as it was originally in my hips. I'd be interested in knowing what supplements you're taking. If I could just get back to the point where I could do some exercise it be totally livable period but everytime I try to use my muscles they just hurt more.

[Bizgirl]

Would you please discuss more about your diet? It's fantastic that you've been able to avoid prednisone.

[Zebedee44]

Hi tragedy7

Reading through your list of nutritional supplements I am encouraged to find that I have already introduced some of them into my own diet and I do believe the anti inflammatory regime is very beneficial.

I found Jack Channels book The inflammation Syndrome to be very useful in explaining the nature of inflammatory foods. My circumstance do not allow me to adopt an expensive organic regime but a better diet is possible without great inconvenience or expense and some nutritional supplements are available in a natural form as well as in capsules.

I recently introduced laverbread, a Welsh seaweed, into my daily diet and it seems to give me loads of energy and vigour, made into little patties with oatmeal and chia seeds. And natural kefir is an inexpensive probiotic.

That said, I had already succumbed to the steroid route in desperation after months of painful immobility and the fear that went with it, so I manage the evil of prednisolone with the benefit of healthy nutrition and at least feel that I am, to some extent, managing my condition myself!

Best wishes to everyone on this forum, I am always pleased to read and benefit from all the information posted here.

I'd like to know how to do emojis, btw. Chrissie