Has anyone tried pulsed electric magnetic field therapy for PMR relief?

[lsplumb]

I am having trouble tapering. Can't seem to get much below 15 mg; went down to 10 mg but still having some pain in the mornings. So increased dosage on advice of rheumy. At this rate, I'll be on prednisone for a long, long time. So wondering if anyone has tried alternative treatments to try to get off prednisone sooner rather than later. I've researched both low-dose naltrexone and the magnetic field devices. They are expensive, so haven't been able to pull the trigger yet on one of those--especially since I don't know if it will help. Have started LDN (low-dose naltrexone), but so far, no results on a dose of 3.5 mg. (altho I think it can take more than a month to see results).

[msdale]

Hi. I use PEMF (pulsed electromagnetic field) therapy and I find it helpful for relaxation and sleeping. I am also hoping it will help with bone density and quality. I don't know if my pain would be worse without it or not at this point. There is a lot of positive research in this field. I definitely will keep using mine. Perhaps you could find a clinic or some such where you could pay for a few sessions to try it out a bit.

[lsplumb in reply to msdale]

Hi msdale... wondering what kind of PEMF device you use (manufacturer/brand name). The one I'm looking at is a Parmeds Premium Flash with a full body mat. Also, do you know how many gauss you can get out of your device? Thank much. -- Linda

[msdale in reply to lsplumb]

Hi - I'm happy to share all information with you! I'm just checking with a moderator for the forum, as I am unsure if we are supposed to mention specific brands, etc. (Hopefully, that is fine!) I will get back with you shortly. But I can say mine goes up to 2,000 milligauss and the frequency range is adjustable from 1 to 1,000. More info shortly!

[DorsetLady PMRGCAuk volunteer in reply to msdale]

As long as you don’t work for the company concerned or gain any financial benefit you can mention brand names… or just send the details in a chat to lsplumb then it’s not on open forum…

[msdale in reply to DorsetLady]

Thank you. Really appreciate the reply.

[PMRpro Ambassador in reply to msdale]

When it is something you have used yourself and you aren't advertising it in any shape or form, say all you like. We'd prefer to have such info on the open forum rather than sent as PMs - then it is difficult to monitor spamming.

[msdale in reply to PMRpro]

Thanks! And just in case it does help someone else, that's great.

[msdale in reply to lsplumb]

Hi - so here is the information regarding the PEMF system I use: You can go to a website called blisswellnesstech.com to get the info on the Bliss 1600 PEMF system. I have personally spoken a number of times with the founder/owner, and the care and customer service is superlative! These people care more about helping people and making it affordable to everyone than they do about profits. (They also admit freely that it may not help everyone , and I find that refreshing.) Personally, I love mine and it was a very good investment, but that's just my personal opinion. I hope this is helpful. -- Mary

[lsplumb in reply to msdale]

Thanks so much for the PEMF info, Mary. I'll check it out.

[msdale in reply to lsplumb]

[msdale in reply to lsplumb]

I just wanted to add one last thing. If you go to a different website (same company) at LifeCanBeReallyGood.com, it will give you contact information to speak directly with the owners, if you wish. Okay. Good luck in your search!

[SnazzyD]

Hello there,

You’ve had a bit of time of it haven’t you? The good news is that given you were started on Pred in January it is not surprising that you can’t taper quickly. The not so good news is that like it or not, this condition goes at it’s own speed over years not months. The other good news is that you can be pain free provided you are on enough Pred and don’t reduce too fast and that you were on the correct starting dose for you. 1mg per month might be a better rate for you and one that many find doable.

Your pain comes from inflammation and your objective is to get rid of that and the loss of pain is the happy side-effect. Just trying to blast the pain achieves nothing usually and still allows your inflammation to run riot, potentially causing issues elsewhere in other large blood vessels leading to large vessel vasculitis and giant cell Arteritis. These can have life threatening results or sight loss. Pred is purely a safety net to stop this inflammation while your body has gone rogue and is attacking itself. You can’t force remission but you can give your body lots of help. You are eating a good diet already (watch the carbs with Pred!) and you also need to give yourself plenty of rest. A common mistake is to try to get rid of the pain and get back to normal life as we were before. That’s understandable but it does get people struggling to reduce the Pred dose and relapses occur. PMR and GCA are life changing conditions, there’s no two ways about it.

Your inflammation is potentially body wide (you can’t always tell if it is) so using a device to home in on trouble spots isn’t likely to help. Trying to alter the brain’s response to pain doesn’t tend to help but even if it does, you are not dealing with inflammation. The degree of diet at this stage is beyond the scope of diet as the sole treatment, though a bad diet can certainly make one feel worse. Many have come to this forum asking for alternatives to Pred but the answer is always the same, “no but if you find it when others haven’t the world wants to know about it”. There’s no shortage of those who have tried!

I too went through surgical menopause overnight which is like being hit by a freight train, with no years of perimenopause. It sure it knocked my body out of kilter along with chemotherapy, radiotherapy and surgery. Add to that years of unrelenting stress and a job that though rewarding was sapping over the years. It was unsustainable and at the age of 54 GCA struck. It changed my life which for the first couple of years felt like a disaster but like many here, one finds it is possible to live differently. This acceptance bit is the real challenge.

[lsplumb in reply to SnazzyD]

SnazzyD... thank you for your thoughtful and insightful response. Very helpful. I will keep plugging away. Back up to 12.5 mg and had no pain this morning. So... you are right... have to go very slowly with taper and be patient. The reason I DO get impatient with the prednisone is that I already have osteoporosis and it's only going to get worse. I'm taking alendronate (Fosamax), which I didn't want to do. Not sure how much it will help, given that prednisone really does a number on bones, but fingers are crossed... --Linda

[DorsetLady PMRGCAuk volunteer]

As SnazzyD says at les than 3 months into treatment, perhaps you and your doctor are expecting too much, too soon with regard to lowering your dose.

Maybe have a read through this and understand how long your illness is liking to last, and how to manage it on Pred… without the need to add in other therapies.

..and to be honest your PMR will decide how long it takes to get off Pred…

healthunlocked.com/pmrgcauk...

[PMRpro Ambassador]

You imply you have been reducing 5mg at a time? That isn't tapering. Tapering is done in small steps and the purpose is to titrate the dose from high to low to find the lowest effective dose. After only 3 months and attempting to reduce the dose in that way, you are likely to be struggling. First you have to clear out all the accumulated inflammation that has built up in specific places and then you should be able to taper the dose slowly to get to a lower daily dose.

But that doesn't mean the disorder is in specific places - it has an underlying systemic cause because the immune system as a whole is deranged in a particular way, producing too much of a particular inflammatory substance which is acting on various tissues and causing inflammation. And that systemic source keeps feeding the inflammation.

[lsplumb in reply to PMRpro]

Sorry, I didn't make myself very clear about my tapering... I started at 25 mg, then down to 20 mg after about 3 weeks, then down to 17.5 for a week, and 15 mg for just over a week. Then went to 12.5 mg where I started feeling a little pain in the mornings. Went ahead to 10 mg but pain not getting better, so back up to 12.5, which, so far, seems to work--and where I need to be for a while, I guess. All this at my rheumy's recommendation...

[DorsetLady PMRGCAuk volunteer in reply to lsplumb]

Being at any dose for only one week is not long enough.

It can take at least 2 weeks at a dose to know that is enough to control your illness… add in steps that are too big as well, and it’s a recipe for disaster, plus you don’t know which was your last ‘good’ dose…. In your case it could have been 17.5mg, or 15mg or 12.5mg - you might think it doesn’t matter, but it does.

The general advice is, if you are struggling is to go back to last dose you felt good at - and you won’t know. You might be lucky in that it was 12.5mg…. but personally I would say it’s probably 15mg.

Won’t comment on your Rheumy’s recommendation other than to say it certainly doesn’t follow internationally agreed guidelines.

[PMRpro Ambassador in reply to lsplumb]

And all I can say - is I agree with everything DL said. Reducing every week is a recipe for disaster because you are not at the new dose long enough to know what worked. The idea is to find the lowest effective dose at any given time and in the early stages that will be higher than later. You were lucky, your current dose is nearer to 10mg than 20mg but very few people are that lucky. The fact you felt some pain at 12.5mg suggests it may also turn out to be slightly too low. Even very slightly too low puts you in a situation where there is some left-over inflammation not fully dealt with each day, over time it may well build up to a level you have a full blown flare, just as a dripping tap eventually fills a bucket, Do be watchful.

We find even the international recommendations of 3 or 4 weeks between reductions are often too fast - and they were developed as a consensus between many top experts in the field. So many rheumies think they know better.

[lsplumb in reply to PMRpro]

Thank you Dorset Lady and PMRpro... all good advice. Better than my doctor's I have to say!