I refused prednisone and cured my PMR with Chines... - PMRGCAuk

PMRGCAuk

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I refused prednisone and cured my PMR with Chinese supplements, using food as medicine, practicing Tai Chi and meditation and for pain Mobic

Ibis10 profile image
13 Replies

My Ced rate and other markers were gone within 6 months.

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Ibis10 profile image
Ibis10
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13 Replies
IslandRN profile image
IslandRN

interesting as Mobic is used to treat rheumatoid and osteoarthritis however has not been an effective treatment for PMR so makes me suspect if PMR diagnosis is accurate?

SheffieldJane profile image
SheffieldJane

The main thing is that you feel better. I suspect that it might not work for everyone and this short duration would be unusual for a PMR diagnosis. Were you aware of many side effects along the way? I know potent ingredients are contained in Chinese medicine. Tai Chi is a great exercise for us. I love the way Chinese pensioners are seen in communities doing Tai Chi.

Constance13 profile image
Constance13 in reply to SheffieldJane

There is a Tai Chi group (free & professional) in the Spa gardens here once a week in summer (unless raining of course). I can't attend because my balance is sooo dreadful!☹️

HeronNS profile image
HeronNS in reply to Constance13

Tai chi is, I believe, a variety of qigong. There are other varieties of qigong which can be done by people who find yang style tai chi difficult.

PMRpro profile image
PMRproAmbassador

It has been shown that certain Chinese medicine items supplied in Europe as "free from steroids" actually had high levels of steroidal substances in them - totally unmonitored and approved and not declared - which actually were at much higher doses than would be used by doctors.

Part of the definition of PMR is its response to corticosteroids rather than NSAIDs such as Mobic - so that I do have to wonder whether this really is the PMR we discuss here if Mobic worked. There are patients whose symptoms resolve within a year anyway - about 20% according to one study and other studies have shown these patients are more likely to relapse at some later point.

I must also emphasise that PMRGCAuk does not recommend this approach - except for the use of Tai Chi as an excercise option for those who are able to. We also believe that diet can play an important role in living well with PMR/GCA.

It would be very helpful if you would complete your profile with further details.

jinasc profile image
jinasc

Not a decision I would ever take lightly or encourage others to do the same.

I do know of someone who also refused pred and six months later......GCA.

borednow profile image
borednow

More information would be useful - perhaps you would be kind enough to post more detail? However, congratulations on your speedy recovery.

daworm profile image
daworm

I have Mobil and it works for my OA but too many side effects plus ibuprofen works as well for me...it is time to get back on the astragalus though..

daworm profile image
daworm in reply to daworm

Not Mobil although who knows maybe a little oil would work...mobic..

PMRpro profile image
PMRproAmbassador in reply to daworm

Does it help you? Remember that if you are on pred or other immunosuppressants there may well be some interaction - and it works on B-cell proliferation which may be relevant to GCA in some cases.

Skymollie profile image
Skymollie

Glad to hear of it. You will get a lot of flack from all conventional medicine people. I also take no pred, only aleve, ibuprofen or bayer nsaids. My markers were 47 and I think 1.2 on C protein, but to tired to look that up at 2 in the morning. Diagnosed 12/30/2019. If they would come up with safer drugs than steroids or methyl whatever it is, I would consider them but my feeling is why weaken your body with poisons when whole foods plant based dieting works nicely, yoga, laying on the couch watching tv, napping. I was a vegetarian for 6 years(I'm 62), turned vegan October of 2019. So, already eating well when it hit, already fit when it hit. Level of pain in beginning was 10(highest), With nsaids it's a five. Stairs hard, chairs hard, walking normal hard. I must say my eating has become more what I enjoy, instead of what's great for me. I guess that is the being kind to yourself part. lol It didn't help in the US to be told by the rheumatologists that they accept no non insured patients. I have only Medicare part A/ only pays if you are admitted to hospital. Urgent cares are nice places if you get an intelligent Dr. I did. Still, can't be seen by a specialist, supposed to have a primary doctor refer me to the specialist. lol Where do they think the money grows? But what I find most amazing is that about five days ago the excruciating pain of getting out of bed with no nsaid(resting stomach from med) in me was down to 5 instead of 10 . Every morning now is same. Less intensity of pain, body is doing some healing. Hope lives, makes the hopelessness better and that's all it takes to survive these times. Thanks for reading, no not looking for money, lol just saying there are other ways to do a thing that are also right.

in reply to Skymollie

I would raTher take pred than nsaids or over the counter meds that do not work for pmr. Pmr not treated with pred can raise the chances of gca. I also get no side effects other than a night's sweating occasionally. If you had read some of the terrible experiences that are shared about people losing sight in one or both eyes you might not be so critical if those of those of us who combine conventional medicine with complementary approaches and lifestyle changes. I was on significant prescribed pain killers and nsaids at diagnosis that made not a jot difference to the increasing pain and stiffness that I had been experiencing for 18mths or more.

If you have significant relief I would be questioning the diagnosis - there are several differential dx. Perhaps your circumstances are acting as a placebo too. If I had no choices due to no access to free medical care and had invested time and energy into my "cure" I would back it. There... Some flack to return your flack.

PMRpro profile image
PMRproAmbassador in reply to Skymollie

But you happily take aleve, ibuprofen or other NSAIDs - which have even worse potential adverse effects for most of us than pred has caused. Both in the short term and the longer term.

Pred has been in use for 60+ years and there is little to learn about it. When you know how then most of the adverse effects can be minimised or avoided in the first place - but for almost all of us it has given us our lives back and stopped quite a few from irreversible loss of sight.

One lady on the forums was told by her GP to use ibuprofen - after 3 doses she was in the ED with a coffeegrounds gastric bleed, a not uncommon effect of NSAIDs. If you have the PMR we discuss here it is pretty unusual for NSAIDs to do more than take the edge off the pain - I know, the only option I had for 5 years was OTC medication and it did nothing, 15mg pred brought a minor miracle in under 6 hours, I could move with minimal pain. Inadequately managed PMR is much more likely to progress to GCA where only high dose pred (60 to 80mg/day is not unusual) will reliably protect you from total and irreversible loss of sight and even that is only guaranteed if it is started high enough and soon enough.