Herbal treatments?

[elbik]

I'm new here and to PMR. I was buying herbs for my horse's arthritic hock and general well-being and thought "why don't I use them for PMR!" Has anyone tried any and with what result?

[DorsetLady PMRGCAuk volunteer]

Hi elbik,

Many have asked that question, so here’s what I have answered before. Not sure whether you are on steroids and want to add other things, or you don’t want to go on steroids.

Many people don’t want to take steroids at the beginning of their journey, but find that after trying other methods of controlling the symptoms, have to eventually admit defeat and go down the route of Pred

I appreciate you may not want to take Pred - who does? Who wants to take any medication? But sometimes you have to.

If you don't take Pred, then left untreated your PMR will probably get worse before it gets better. Most people go into remission when the underlying PMR goes away, but not always.

There have been posts about natural remedies before, and I guess some people may get through without steroids, maybe through choice or mis-diagnosis or maybe a milder form of PMR. However I doubt many are on this forum, they probably see no need for it.

However, there are people on here who were virtually bed bound before diagnosis for many months, even years, and Pred has turned their lives around, given them back the ability to enjoy it almost pain free.

I'm sure in days gone by many people got through PMR because it wasn't diagnosed, but what quality of life they had we'll never know.

If it doesn't go into remission quickly (unlikely) then your blood vessels are likely to become more compromised by the offending cells in their walls making it more difficult for the blood to flow around your body bringing the necessary oxygen, energy et al to your muscles. Also you may be more liable for it to morph into GCA (not a given, but certainly a possibility). The blood vessels affected then are the major ones in your torso, and those in your head. In your torso it can/may lead to aneurysms, strokes, heart attacks; in your head it may lead to partial or full blindness. Would you refuse a tried and tested medication that stopped you having a heart attack or stroke? Would you refuse a tablet that stopped to possibility of blindness?

As I had GCA maybe my views are slightly more biased towards Pred than others. Taking them can be scary, but they have given many people their lives back after being virtually bedridden at worst, extreme pain at best pre diagnosis, and for many others with the more serious partner in crime - GCA - have saved sight.

As I said, I am biased, but, unfortunately, I do have the t-shirt to back up my opinions!

I had undiagnosed PMR/GCA for 18 months, tried all the painkillers, both OTC and prescribed, physio exercises, steroid injections in shoulders to no effect, eventually after having a blurriness for 4 days and losing sight in right eye.

On diagnosis in hospital A&E was told that there was a 50/50 chance I could lose sight in remaining eye. I took that first dose of Pred as fast as I could! Plus I had to wait another 2 weeks before it could be confirmed that my other eye was okay. The longest and scariest 2 weeks of my life. I wouldn't want anyone to go through that!

I don't intend to scare, but I do say, think very carefully before you reject Pred - if that’s your intention.

You may like to read SheffieldJane’s post....next one down

[nevagivup in reply to DorsetLady]

Dorset Lady, all too true. I was one of those who was finally bed-bound and paralyzed by pain through not being diagnosed. My GP was treating me with opioids! When finally seen by a Rheumatologist and prescribed Pred it took a full week before the 15 mg a day dose kicked in. By that stage it should have been a higher dose. We need to keep in mind the general inflammation PMRGCA has throughout our bodies.

[elbik in reply to DorsetLady]

Many thanks

[PMRpro Ambassador]

Nothing to add to DL's post - it isn't a simple case of pred bad, no pred good. It is possible the herbs might help - but they will not replace pred.

[SheffieldJane]

Hi elbik, I am sure the herbs help your dear horse's arthritic hock but I guess if your horse had an incredibly painful condition that was seriously effecting her mobility, you would be keen to relieve these symptoms in anyway you could. If the vet said we'll have her galloping around the field in no time if we give her this steroid preparation to reduce the inflammation and cure the pain, you would try it because you love horses and can't bear them to suffer.

Well think of yourself as a horse, nothing will get you up and moving and free of pain but Prednisalone. Anything else will be a bonus for your wellbeing.

If you look at my post " The danger of leaving PMR unchecked...." you will see that I have a particular reason for saying this.

If this is your first post, welcome to the forum! Your post is the first thing to make me smile this evening. Stick with us.

[Maz48]

Interesting this. I spent years as a home visiting chiropodist in a very rural area in Cornwall. An elderly lady i used to visit was taking horse arthritis pills for her knees & swore by the . The. Swelling we t down & the pain eased greatly. So why not?!?

[nevagivup in reply to Maz48]

Arthritis is a different condition to PMR, which is systemic.

[Maz48 in reply to nevagivup]

Yes i do know that Nev i have both myself & you get to the point when you will try anything.

[PMRpro Ambassador in reply to Maz48]

But what was IN the "horse arthritis pills"? Given the size of a horse the dose would be much larger than for a human and that could lead to overdose even if the drug was suitable for humans in the first place and many animal drugs aren't.

Though this

express.co.uk/life-style/he...

is something I might consider...

[Rosedail]

Hi: Yes, As explained to me by my physical therapist, osteoarthritis is generally considered to be a mechanical problem and can be caused by injury to the joints by muscular pulling or lack of muscular support or by bone friction. Happens to nearly everyone if we live long enough. PMR is a system-wide autoimmune disease and thus is quite different although some symptoms can be similar. I very much agree with the need to keep on with the prednisone and not replace it with something less effective. To support and supplement the prednisone, I tried a super healthy diet ( lower carb version of Mediterranean for me) , fish oil, and tart cherry juice in smoothies or some other powerful antioxidant. I believe these and also eventually green and Greek Mountain tea (herb)were helpful for my overall health and possibly to the PMR. Maybe it was just the ritual of setting aside time for my health every day. I was careful to research the dosages and didn't over do. I also took a plant sourced calcium tab. At times I tried Turmeric capsules and also CBD oil rubbed into sore muscles and joints. The latter two seemed to be less helpful for me personally, but of course that all my subjective experience🙂.

[elbik in reply to Rosedail]

I appreciate this informative reply. I'm 77 yrs and was undiagnosed for 2 mns until I had a blood test. I started Prednisolone 20mgs early March and finished late July. I'm a retired nurse and midwife but I'd never heard PMR. Last year I discovered I had mild hip arthritis, I have no pain as long as I do the exercises from the physio. I must have mild PMR as I very gradually started to walk my dogs, gardening,a little sea kayaking, swim but now see a manual physio who has got rid of my neck, shoulder and upper arm pain so I can restart upper body exercises I asked this physio to give his opinion on my arthritic hip as I thought I had more lack of movement than caused by a mild arthritis - he said the muscles were in spasm so has started to correct them. I was on simvastatin 5 yrs ago and had muscle wastage so is the PMR connected to mild arthritis or statin muscle wastage?? I have a good similar diet but no powerful antioxidant as yet and admit to choc when need arises! I'm very careful how I use my energy as I can lose days thu tiredness. I've read Kate Gilbert's book. Oh forgot to mention, in February I felt better and had a 6 hr op for a cochlear implant! I was just so ill for a month, cause unknown until blood test.

[Rosedail in reply to elbik]

Hi: Some people get PMR after surgery or after a long period of high stress. It sounds like you may have had surgery in February and then the PMR came on in March. And it seems like your manual physio is very helpful which is wonderful. I have never heard of anyone with PMR getting off the prednisolone in only 5 months...but I am not a clinician. Has your Rheumatologist declared you free of the PMR?

[elbik in reply to Rosedail]

Rosedail - I keep seeking reasons and now your goodself and PMRpro may have answers. History is - 2013 I had a minor stroke which interfered with the fear part of my brain (learnt this later) and I became frightened of my own horses. I couldn't believe I wouldn't ride well again and kept at it (my husband lost 1/2 stone walking with me!) & I did ride the Welsh hills again but never without fear. Eventually I was riding in forestry when I thought about some cattle running down a field and blacked out. My wonderful horse didn't move & my foot was still in a stirrup, when I moved he looked at me, my foot dropped out and he walked off home ie the trailer where he met my husband. I had injuries and haemorrhage so had a ride in Air Ambulance Wales. The blackout was my brain saying "enough". We decided to sell up and moved (2014) to the sea where I kayak instead! Last Xmas I was sitting on a settee, turned to talk with a grandson and had a searing pain in my shoulders and neck. This pain continued and I began to feel unwell, was due to have a cochlear implant early Feb so saw Dr who shrugged his shoulders & said it was a virus but gave me an antibiotic "in case". I did start to feel better the few days before surgery so it went ahead. Next day was OK but the 2nd day at home was dreadful - I felt very ill generally. I slept for nearly 3 weeks with occasional washing! I went to the Dr and had a blood test, ESR 136 and started on Prednisolone early March to late July. After reading Kate's book and this site I have wondered about the diagnosis and will find out about reactive inflammatory arthritis and myofascial pain syndrome of which, once again, I've never heard. I haven't seen a rheumatologist. Thank you both so much.

[PMRpro Ambassador in reply to elbik]

One of the adverse events listed for simvastatin is PMR - whether it is so or not is unknown, but there are many doctors who won't use it.

However, do I understnd this correctly? "I started Prednisolone 20mgs early March and finished late July" - PMR doesn't go away in 4 months. It sounds more like maybe a reactive inflammatory arthritis and myofascial pain syndrome.

[elbik in reply to PMRpro]

PMRpro - I didn't learn about simvastatin and PMR, I took myself off it in 2014. Would you kindly read my reply to Rosedain and I'll investigate the two conditions you mention. I have wondered if the Aspirin 75mgs I've been taking had any affect on the supposed PMR. Thank you so very much.

[PMRpro Ambassador in reply to elbik]

Good luck - reading the rest of that story really does suggest that spasmed muscles post injury could account for at least some of the pain and stiffness.

[elbik in reply to PMRpro]

PMRpro - Yes, my left foot was in the stirrup so I fell hard on my head and right side, proved by a # rib, pneumothorax and double vision! Apart from all that I'm really very well! But you can see why I need to exercise all those muscles.

[Rosedail in reply to elbik]

Dear Adventuress Elbik: It really does sound like you have been "through the ringer" in recent years when it comes to your health. But you have a wonderful spirit and a supportive spouse and both have seen you through:). I very much encourage you to get an appointment with a Rheumatologist so that you can get closer to the right diagnosis and be a bit more certain that you are on the best path to healing. As I mentioned before it sounds like your physio is very helpful, but I have found that getting various expert medical opinions is worth the time, energy and money. No one physician is likely to understand everything that may be happening with our health when our conditions get complex. Also I am glad that PMRPro ha s weighed in with her insight. She really is an expert at PMR and is one of the "Aunties" of this group😊

[elbik in reply to Rosedail]

Rosedail, yes, I'll read about the 2 conditions probably check what Dr thinks, ask to see a rheumatologist as necessary but probably see one privately as I expect there's a long wait. I did want to see The Nutcracker Ballet in Cardiff but that'll cost over £100 in all - better seeing a rheumatologist!