Alternative methods: Thank you for being new in... - PMRGCAuk

PMRGCAuk

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Alternative methods

Roxypanther profile image
21 Replies

Thank you for being new in this group.

I was diagnosed PMR in mid January 23, started with 30mg Cortisol and now I am with 17.5mg

Die to the side effects I am looking for alternative

Methods as herbs, diet plans etc. does anybody have experience with CDL Chloride dioxine solution?

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Roxypanther profile image
Roxypanther
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21 Replies
DorsetLady profile image
DorsetLadyPMRGCAuk volunteer

Hi and welcome,

What side effects in particular - if you specify we can advise on solutions..

and are are you sure they are all side effects and not too fast a tapering regime... 30mg to 17.5mg within a couple of months is fast.

As for alternatives for your illness... short answer, No, certainly not to control the inflammation....but there are foods and supplement that MAY help.

Roxypanther profile image
Roxypanther in reply toDorsetLady

Thanks for your answer, the side effects are especially with the eyes, high eye pressure, catarac and osteporose….

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toRoxypanther

Blurry eyes and eye pressures will decrease as you reduce Pred, and although cataracts can be steroids induced, they don’t always deteriorate that much - and honestly there’s nothing to say you wouldn’t have had an issue anyway. But if they do, they can be successfully operated on whilst you are still on Pred.

Do you know you have osteoporosis? Have you had a DEXA scan?… many on here have osteopenia, but that doesn’t necessarily mean it becomes osteoporosis even with the steroids.

Roxypanther profile image
Roxypanther in reply toDorsetLady

I already operated my 2 eyes die to catarac 7 years ago…. Osteporose I do not have yet but I suppose it may occur later 🥲

DorsetLady profile image
DorsetLadyPMRGCAuk volunteer in reply toRoxypanther

if you’ve had your cataracts replaced, then they are not going to be affected by the Pred you are taking now…

..and, yes you may get osteoporosis in the future, but it’s not a given…. Do what you can to protect your bones with supplements [VitD/Calcium is recommended in guidelines] add in Vit K2 to get the calcium to the right place and do weight bearing exercise….

Roxypanther profile image
Roxypanther in reply toDorsetLady

thanks for this good Information concerniente the catarac, Hope to get the eye pressure in order. 🍀👍

PMRpro profile image
PMRproAmbassador in reply toRoxypanther

If you have artificial lenses after cataracts it is no longer a problem, they don't recur. Sometimes there can be growth of other cells across the lens but that isn;t due to steroids and is easily removed with laser surgery. I have been on pred for 13 years - after about 12 years on pred there was almost no change in my bone density and I have only ever ensured I took plenty of calcium and vit D. It doesn't happen to everyone. Neither do raised eye pressures - mine have never gone up at all. If it does happen they control it with drops.

Roxypanther profile image
Roxypanther in reply toPMRpro

thanks a lot for your helpful answer🍀👍

PMRpro profile image
PMRproAmbassador

There is no effective alternative to pred to control the inflammation of PMR. Many people come here looking for an alternative and almost always accept in the end there isn't anything else.

You are not in the UK or the USA are you? Are you on prednisone or prednisolone or on hydrocortisone? Cortisol isn't really an accurate term, it is the natural corticosteroid produced by the adrenal glands, not used as medication. It would be really helpful if you could complete your bio on your profile saying where you are and some history so we can help you better.

I'm afraid I have no idea what CDL Chloride dioxine is supposed to be in human medicine other than it was touted for Covid - it certainly isn't a recognised treatment for anything - it does have a role in medicine as a sterilising agent. It must rank alongside Trump's idea of drinking bleach to kill Covid.

chemicalsafetyfacts.org/che...

There is nothing other than a biologic that replaces it but it isn't yet approved for PMR. But you CAN mitigate the adverse effects of steroids in various way - but we need to know what to advise you.

Roxypanther profile image
Roxypanther in reply toPMRpro

i am in Switzerland, cortisol is similar to prendisone.

HeronNS profile image
HeronNS

Like DorsetLady says, pred is all we have! However you were started at the highest recommended dose for PMR and have not yet tapered to the level more of us start, so you should soon begin to notice a lessening of any side effects. The only side effect I ever noticed, starting at 15 mg, was if I cut myself or got a mosquito bite or something it took longer to heal. My other side effects were hidden (higher blood sugar, increased ocular pressure. All of those things lowered as I tapered and were gone by the time my dose was about 5). What have you been noticing?

I felt so much better I was quite energetic and active. Later my husband said in those early days I was like the Energizer bunny. If that was a side effect it also wore off. :D

ab58sf profile image
ab58sf in reply toHeronNS

This is all very helpful. I was on 2mgs of prednisone and started to encounter worse pain. Rather than go back up to 5mgs, I wanted to try hydroxychloroquine. It took the pain away along with the 1 1/2mgs prednisone I reduced to. However, hydroxy can cause heart palpitations. I am going to explore going to hydroxy every other day. This is all very confusing. I have been on low dose prednisone almost a year. I want off if I can, but don't like the thought of biologics. Don't they ruin your immune system?

PMRpro profile image
PMRproAmbassador in reply toab58sf

No, they won't ruin your immune system - but if you are at 2mg no sensible doctor would prescribe them IMHO. The effects of 2mg are minimal - and one top PMR/GCA expert told us he often keeps patients at that sort of dose to reduce the risk of relapses.

HeronNS profile image
HeronNS in reply toab58sf

Despite several attempts to taper off or at least get lower, my "lowest best dose" has been at or around 2 mg for several years. I reckon since 2017, having started pred in 2015. I don't think I have any pred side effects, significant or otherwise. Anything I note can be attributed simply to getting older. I've never taken any other medication for PMR. Possibly I'm mistaken but I seriously think that no other medication could be as effective and safe as a mere 2 mg pred. Mind you, I wouldn't have believed in 2015-16 that I'd ever say that!

Roxypanther profile image
Roxypanther in reply toab58sf

thanks for your answer

Dydee profile image
Dydee in reply toHeronNS

Oh wow, my eye doc has been worried about my eye pressure and tried different things, including laser treating my left eye, to get them below 25. I didn't realize it should improve as I further my taper, now at 5.5mg. Just shows how little most docs know about some medications.

HeronNS profile image
HeronNS in reply toDydee

Not all people who treat our eyes have the same level of training. Just by good fortune (and really bad myopia) I see the top of the line. :) I made an extra appointment to see my ophthalmologist on purpose because I'd started taking pred and wanted to make sure there were no signs of GCA, so he was alerted to all possibilities. In fact, as he did the examination, he told me more about pred and GCA (which fortunately I didn't and don't have) than I ever heard from my GP. He continues to see me annually instead of every two years and will as long as I'm on pred no matter how low the dose. He said GCA should be treated as seriously as a stroke.

Was your ocular pressure normal before you started pred? Luckily mine didn't get high enough to need any treatment, although it was definitely raised enough that he saw me every few months the first year, but it had started going down already by the second visit.

Dydee profile image
Dydee in reply toHeronNS

Yes, I had Glaucoma when I came down with PMR but my pressure was well controlled until Pred. going from 14 to 25, Thank heavens my eye site hasn't been affected. Still drive without glasses. So far nothing helps.

Roxypanther profile image
Roxypanther in reply toHeronNS

thanks for your comment, yes it it was normal. I can manage it with simbrinza eye drops actually and I am down from 30mg to 17.5 mg pred now.

Roxypanther profile image
Roxypanther in reply toDydee

I reduce it actually with simbrinza eye drops

Roxypanther profile image
Roxypanther in reply toHeronNS

thanks for your comment, yes it it was normal. I can manage it with simbrinza eye drops actually and I am down from 30mg to 17.5 mg pred now.

Hope it will normalize without eye drops…

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