Alternative therapies: what I've learned

[HeronNS]

I've been on the PMR journey since 2014, and the pred episode since 2015. In that time I've also had an osteoporosis scare. Those interested in what I did about that can read healthunlocked.com/pmrgcauk... - a bit dated now, but successful anyway....

When it came to PMR I've had a lot of physiotherapy, including treatment with low intensity light therapy ( bioflexlaser.com/ ) which I think has helped me have a journey with few glitches, although in the end I don't suppose it made the process any shorter.

I found that ginger tea was helpful, seemed to help me get through the night to have a reasonably comfortable morning.

Some symptoms I was attributing to either PMR or pred (morning headaches, skippy heartbeat, gradually increasing blood pressure, very cold aching legs at nght) responded to my adding salt to my food, it appears I had a salt deficiency, almost certainly caused by eating a low sodium diet for many years.

A calcium supplement at bedtime, with a small snack (like yoghurt or kefir) cured my lifelong intermittent insomnia. I take a capsule, not a hard tablet, of either calcium hydroxyapatite or calcium citrate, others are available.

Lately, as I attempted to approach Pred Zero, it seemed to recede, like some sort of mirage. Then I read up, again, on magnesium, and started taking a small dose of magnesium. Within a day I felt well enough to step onto the path to Pred Zero again. Not going to rush, but it's beginning to feel more possible! We should be ingesting the same amount of magnesium as we do calcium, so those of us on calcium supplements need to be careful and not upset the balance between these two minerals.

What have I learned? That doctors, even sensible ones like mine, don't know very much about our condition. That many of our symptoms, whether we think they are caused by PMR, another condition, medication, simple aging, may be caused by things we tend not to think of, like a mineral or vitamin deficiency.

Don't ever take anything, a prescription or a supplement, without reading up on it, but don't believe your doctor if s/he scoffs at you if you ask about something like, for example, Vitamin K2, because they are busy people and may not be cognisant of research which is now accessible to us all thanks to the internet. And there is always the chance that something your doctor will automatically treat with another medication may turn out to be better treated through natural means. Do research whenever a new medication is suggested, Make sure you really need it. There is a place for medication (thank you pred!) but we all should try to avoid the constant piling on of more and more pharmaceuticals, some of them prescribed to deal with side effects caused by other medications.

[Blackcatlover]

Thank you for all these helpful strategies. I too tend to have low salt. My symptoms are dizziness, trouble thinking and extreme tiredness. I have a V-8 every morning to give me the added salt I need while still being somewhat healthy.

[yogabonnie]

LOVE LOVE this all. thank you so much. I didn't know Calcium will help with sleep. I am ON it tonight!

[yogabonnie in reply to yogabonnie]

I slept GREAT!!! placebo or calcium hurrah!

[HeronNS in reply to yogabonnie]

Some people have posted that they've had the same effect from magnesium supplement!

[Grammy80]

What a wonderful posting~!!! Inspiring.

[Hidden]

Thanks for that HeronNS, a similar journey to mine. I was diagnosed in 2014 and now down to 2mg. I take a variety of supliments and minerals and sea salt. Doctors told me not to add salt to anything, but I feel better with some added salt to my food. Blood pressure is stable. I also use butter for cooking and I olive oils. I feel good on that, but I am not rushing to reduce the pred yet. I have tried a couple of times since the cold weather and failed, so I will try again when it warms up. All I have to contend with now is the virus scare. This thing has really spooked me more so than Papworth Hospital telling me I need a new heart valve.

[maria40 in reply to Hidden]

I've been pretty spooked about the virus scare too but am trying to get it in proportion. I think it's made worse by the knowledge that at 79, with a compromised immune system an d 20 years on pred I certainly fall into the at risk group and my family don't seem to understand why I'm being what they think is over cautious.

[PMRpro Ambassador in reply to maria40]

This morning it was said by the CMO that the figures for the death rate in over 80s is under 1 in 10 - which, as he pointed out, means over 90% survive!

[scats]

Thanks Heron, very useful. I'm a long way from pred zero but I'd just like to reinforce what you said in your last paragraph. Since joining this forum I have questioned every drug my dr has suggested and have found this has gained me more respect, so that now they ask how I feel about taking a thing before they perscribe it and I am able to ask how they think it will help.

[BillP101]

Interesting reading that you had sarcoidosis . I had this condition many years ago and have had pmr since 2013. Is there a link? Never met anyone else withnsarcoidosis

[PMRpro Ambassador in reply to BillP101]

Probably not BUT it is relevant because of the calcium/vit D supplements most of us take - the vit D level can get very high so it needs checking occasionally.

[HeronNS in reply to BillP101]

Like PMR it's always there, but may be completely inactive - except as PMRpro points out, the Vitamin D issue. I didn't even know it had probably been far more widespread than a lymph node biopsy in my 30s had suggested until I had an x-ray as part of the investigations into why I was feeling pain all over and on the x-ray report they made a comment "incidental note is made of old granulomatous disease". The granulomas are possibly a sort of biofilm which activates Vitamin D. Normally the body will only activate what it needs, but people with a history of sarcoidosis should be careful. I do take a 1000 mg capsule daily, but when I was taking double that at doctor's instructions when I started pred, my D level went up a bit too high and would probably have gone higher if I'd not cut back. In fact an entire winter with only the Vitamin D in my calcium supplements (not much) brought my level down to low normal. Then I reintroduced the 1000 mg capsule and that seems to be about right for me.

[powerwalk]

Nice read. Must get some ginger. I also never take meds without research. No to aldronic acid four years ago when my then rheumy prescribed it just as a routine! I will avoid anything I can as long as is safe! I have enough trying to come to terms with Pred! Thanks for this interesting article. I can't seem to get past 5mg!!!! Good luck with your hopefully final taper!

[Charlie1boy]

Thank you for this post - it makes for very interesting reading.

Are you actually at zero yet, or still just getting very close to it?

Good luck

Paddy

[HeronNS in reply to Charlie1boy]

Today I took no pred. Tomorrow I will take half a mg. Starting a long taper to zero pred because I don't want to mess things up.

[Charlie1boy in reply to HeronNS]

Hi,

You've done well. I think my pattern of tapering has fairly closely followed yours. Started in 2014 and got to 5 in two and a half years. After not far short of a further three years I am finally down at one, and feel it's about time I tried a half!just waiting for the weather to get a bit warmer first.

I wish you luck on the final straight!

Best wishes

Paddt

[HeronNS in reply to Charlie1boy]

Update four months later, have been at zero pred since early June, three weeks ago as of this writing. Fingers crossed will continue to feel okay!

[Grammy80 in reply to HeronNS]

You know you are surrounded by good vibes and wishes, don't you? xo

[HeronNS in reply to Grammy80]

💗

[Charlie1boy in reply to HeronNS]

Well, that's really promising. Hopefully, you are in remission now.

I got to a half every other day, then decided I could feel PMR symptoms a bit ( probably psychosomatic), so took 2mg for a week. Now back to 1 mg. At least it's all going in the right direction!

Good luck

Paddy

[HeronNS in reply to Charlie1boy]

Pretty much how things were for me for a couple of years, although I didn't get to the zero pred alternating days at that time. You probably do need a very small dose for a while longer. Best wishes!

[Grammy80 in reply to Charlie1boy]

I have a friend in NH...she was PMR and got GCA....she has been taking 1 mg for 12 years now. If she doesn't take it she can tell...she is 85 and going strong! Feels good.

[Charlie1boy in reply to Grammy80]

Yes, that's what I mean by patience! I would always say that I could very easily tell what a difference a half mg made.

[Grammy80 in reply to Charlie1boy]

Her husband is an orthodontist but there are three physicians in the family and she is an RN. She was one of those folks that wanted off steroids...but she had to accept the simple truth....stay on 1 mg and feel good! It has not harmed her...and she enjoys her life. xo

[Longtimer]

Thank you for that, very interesting reading, I cook everything from scratch, we are always told we get enough salt in our food so not to add it....maybe I should then....

[Constance13 in reply to Longtimer]

I used 'lo salt' for years. When I went into hospital 3 years ago they stated "low sodium" and put me on salt tablets. I had to use them for a few months. I went back to using normal salt and have never looked back - and potatoes, chips, never tasted as good without salt.😂

[Longtimer in reply to Constance13]

Thank you and agree about chips!!👍

[HeronNS in reply to Longtimer]

I think people who eat a lot of prepared foods get more salt. Also I'm a vegetarian and there is likely more sodium in meat, which again I'd be missing. When I started pred we cut out the remainder of the prepared foods we used to eat and that is likely what caused the deficiency. I actually sat down and calculated how much salt I was taking in, overestimating rather, and determined it was about 900 mg per day. Even the conservative low salt advocates say 2000 mg is about right!

[Longtimer in reply to HeronNS]

Oh dear, surprising isn't it....will sprinkle in "normal" salt when cooking in future, OH will be pleased...

Thanks for that....

[HeronNS in reply to Longtimer]

There are some salt calculators on line. Can't remember which I used, but I believe I double checked with things which come in packets, like rice and so on, which have nutrition labels, and numbers matched up.

[Smokygirl]

Such a good and very informative post dear Heron, as always, with great advice.

In the past Magnesium supplements have always affected my tum so I have avoided them. Does anyone know of one that is gentle on the stomach?

Every good wish with your reduction! Hugs & love xxx

[PMRpro Ambassador in reply to Smokygirl]

There are a lot of different magesium salts used in supplements so it is really a case of trying them to find which suits you best. I use one called magnesium pidolate and it has absolutely no unwanted effects!

[Smokygirl in reply to PMRpro]

Thank you again! xxx

[PMRpro Ambassador in reply to Smokygirl]

Some are used for the laxative effect - they are the ones to avoid.

[tangocharlie in reply to Smokygirl]

I take MetaRelax brand which I first bought in a pharmacy in Holland last summer but now get on the internet, not cheap but works great for me. I never get leg cramps now unless I forget to take them for more than one day. It has a number of things in including magnesium glycerophosphate which it says in the instructions has excellent gastro-intestinal tolerance. It also has Vit D3 and various B vits. It claims it is also good for fatigue, optimal functioning of muscles and the nervous system and maintentance of bones and teeth. That's possibly true as my fatigue is better nowadays, or less worse I mean.

[nuigini]

I totally share your philosophies Heron. If I had taken every medication recommended I'd have been on bone sparing medication, sleeping pills, antidepressants, methotrexate and goodness knows what else for the past 5-6 years! And these were recommended by many physicians, I lived in a small town where locum physicians kept our clinic running so you rarely saw the same physician for very long. Bone medications and prednisone sparing medications were also recommended by the Endocrinologist and Rheumatologist I started seeing a couple of years ago.

The only correct supplements recommended from day one were Calcium and Vitamin D. I had already been taking these along with magnesium (and other supplements) for years before PMR. Thanks to your recommendation I started K2 a few years ago. The only prescribed medications for me are prednisone and BP medication.

I worry about people who for whatever reason, don't advocate for themselves or do the necessary research into their medical condition or recommended medications. In many cases it's simply because they don't know the importance of doing so, but it's also amazing how many people still think doctors speak the gospel and walk on water.

[tangocharlie]

Totally agree with your post. Over the years I've been prescribed so many things that I really don't think are helpful or even wrong eg omneprazole (and variations eg pantoprazole), nortryptaline, anti-depressants etc. The only thing, apart from steroids, that has made a big difference is changing my diet to low histamine and low carb. I'm sure my doctor thinks I'm bonkers as they have no idea what I'm talking about when I mention various food reactions or even that low carb lowers blood sugar. It depresses me that they know so little about nutrition. Until a few years ago they used to say vitamin supplements were unnecessary and now they give practically everyone Vit D supplements.

[SheffieldJane]

This is the wisdom and confidence I want. I believe in all you say. I was braver once. I would dearly love to reduce my own raised blood pressure without life long drugs. It rests at around 150/86. I take Atenolol with no problems. I dread all the other complex sounding drugs.

[Hidden in reply to SheffieldJane]

Hi Jane, think the best think is deep relaxation twice a day. Lay on the bed, curtains closed, quiet or very relaxing music on very low... But not irritatingly low!.... Deep breaths and internally slowly count back from 300.

At one point a few years ago my BP hit 200+/150+.... I was on a diuretic then. I would be more accurate but I accidentally erased my machine memory and lost data. It came down but was 150+/120+ for a couple if weeks at least). I went to the Dr's and they put me on linsoprisil, still too high.... Amlopidine... Body threw a hissy fit. So left on linosprsil.

9months or so later, a baby popped out,,... No sorry couldn't resist... Pmr dx. I have noticed that during flares it rises. I don't think pmr causes it so to speak... But i do think excessive pain etc does. Hence deep relaxation is good for BP as it allows us to breathe through the pain, fatigue and yukkiness. I don't do yoga or anything similar.... But my first thought for pain, stress or BP is breathe.....

P. S. Reminding myself as much as you. 👍🌻

[SheffieldJane in reply to Hidden]

Thanks for this! 🌷

I am going through a deep fatigue stage, so this is no problem at all. It happens through sheer necessity.

[Constance13 in reply to Hidden]

It's really strange, Pred has helped to 'reduce' my BP - at it's highest 230/160!!

Now it's much lower - 140/85. I believe Dorset Lady had the same happen to her.

[Hidden in reply to Constance13]

Yes mine been lower since pred... Highest at pre dx pmr. It was down to 110/63 when I was waiting for colonoscopy! Funnily I hadnt taken any meds that morning.

[pigeonCl-HU]

Yet another "not to be missed" informative posting.

Thank you Heron,

pigeon

[pugrescue]

Yet another very informative post! The salt issue is relevant, and tonight I will try my calcium just before bed. Cannot hurt, the amount of sleep now varies from none to very little. One question for you, I read in another post of yours a while back that you mentioned "nudging the adrenals". I am finally getting under 10mg, and would really appreciate your thoughts on this. Realize it is not yet applicable, but hoping not too far off. Like to have a strategy in mind before rheumy gives me his opinion.

[HeronNS in reply to pugrescue]

I suppose what I meant (not knowing the context) was that people sometimes want to go right back to a higher dose when they run into the fatigue problem around 5-8 mg, but don't have actual PMR symptoms, and I think it's important to hold your ground and give the adrenals a chance to wake up a little bit. I do believe that when I was sent into a (relatively minor) flare by trying to follow doctor's bright idea for me to taper off pred quickly once I got to 1.5 mg it was much harder for me after managing the flare to get back to even 2 mg, and at the time I thought perhaps the increase in pred to manage the flare had confused my adrenals. I certainly had more difficulty with fatigue than I'd had before and it actually took two years to get back to the level I'd been at before that ill-advised effort to speed up the taper. Another example to show us that slow and steady wins the race!

[pugrescue]

Thanks for the info on that It has taken me 11 months to go from 50mg to 10 (GCA). I have done a few different things along the way. But I know that from here on it is much more difficult. Not a patient person either which is probably not good. I guess I was wondering if going forward alternating dosages may be helpful. After 25mg where I had a major stall, I try not to stay on the same dose for too long. example: moving from 13 to 12....one wk of 12 one day and 13 the next, if that feels ok onward to 12 for few wks and then 12 alternating to 11 etc. Hope that would work???? going forward, maybe for 1/2 mg increments. Read somewhere that it was recommended to stay on 10mg. for a year......sure don't agree with that theory. Hoping to get adrenals at least "nudged" by 19 months, which seemed to be the point in a few studies where if you had been on pred for less time, it was somewhat "easier" to get back to normal. Over the 19 months seemed to be more adverse than a greater cumulative dose. Realize that theories do not usually work out, and also that everyone is different, but need something timewise to shoot for. Really need some optimism right now. Rheumy seems to think that 5-10 yrs is okay to get over GCA. THAT is not in my playbook....at least not yet. Anyway, as always thanks for the replies.

[HeronNS in reply to pugrescue]

Why not make this a separate post? That way you'll hear from people who have used this method of tapering.

[PMRpro Ambassador in reply to pugrescue]

The staying on 10mg for a year was not a theory - it had proven itself over time treating real patients, being part of an approach that resulted in a reduction of flare rates from 3 in 5 in most conventional tapering approaches to 1 in 5. They had an expected tapering period of 29 months using it - there are no official figures for the duration of GCA, it does depend on whether it is purely cranial GCA which never manifests as PMR, but in over 10 years on the forums I would say that our estimate of something in the 4 to 5 year range is a reasonable expectation. I know one person who was off pred for GCA in 2 years but 4 years later she developed PMR.

But you can do what you like - it is not adrenals that rule the roost, it is the symptoms that may return as you reduce. If you are one of about half of patients whose GCA also encompasses PMR you will reduce relatively easily to the dose that manages your version of PMR - beyond that it is anyone's guess how it will go.

[HeronNS in reply to PMRpro]

Interesting. If one did go into remission within 29 months, doesn't that imply that prednisone in sufficient quantities is a cure?

On the other hand, one year of 10 mg per day is equivalent to more than three years at 3 mg per year, so total pred intake could be significantly higher.

[PMRpro Ambassador in reply to HeronNS]

That is the basis of their approach but they do emphasise it must be adjusted for the individual patient - you know, the bit the docs tend to not notice!

But no - however you go about it the underlying autoimmune disorder plays to its rules in terms of when it burns out. Obviously, most of us are on pred somewhat longer than it is active - because even if it jumped up and down announcing it was leaving out of the front door you still have to wean off the pred.

[HeronNS in reply to PMRpro]

My personal concern, had that year at 10 mg been suggested to me, would have been the pred side effects. I'm obviously much better at the lowest dose possible, even if it has taken longer over all, because of the effects on my eyes, blood sugar and possibly bones.

[PMRpro Ambassador in reply to HeronNS]

Obviously - but as someone who has spent a lot of time at 10mg and above, you don't necessarily fall to bits

[HeronNS in reply to PMRpro]

True nuff! But I think I would have - as you say, we are all different!

[HeronNS]

I think some people have tried this, perhaps with success, but when I tried it (at a much lower dose) it just made my body confused. I was much better with Dead Slow Nearly Stop taper where there is a gradual introduction of the new dose. You can but try, alternating new dose with old dose, but from my personal experience I would not recommend it. And I don't think any one is recommending we stay at 10 mg for a year. Maybe they did once upon a time. There was something about 5 mg for a year (to give adrenals a chance to recover) but even that is excessive. My sticking point was only around 2-2.5 mg and that was based on my symptoms not someone's formula or theory. I'm sure PMRpro knows more about this as she does mention it from time to time. I think the idea is that there are fewer flares if someone stays at that dose for a long time.

[Mrs-CJ]

After I read the book Your Bones, I reviewed my supplements....both the ingredients (calcium carbonate) and the timing. I switched to calcium citrate. And after dinner I now take calcium citrate and magnesium citrate. This has been a good switch as I have been sleeping better (not excellent....but certainly sleeping better). I have osteopenia.

[CuriousBetsy]

Hi Heron I. have emailed with you a couple of years ago regarding osteoporosis. At the time you helped me with a couple of questions. Since then I have tried all the bone drugs and always ended up with severe hip and leg pain. Now as of 4 weeks ago I have a compression fracture in T 7 vertebrae...really painful but slowly healing. I have taken vitamin D and K2 for a few years. I believe my Dexa # are hips -3.0 and -3.-1 . My spine is - 2.5. These numbers have remained the same for a couple of years. I have been very active with lots of walking and gardening. I believe I fractured because of being too enthusiastic with gardening this spring!!! The doc is pushing Prolia but I cannot talk.myself into it as I am very afraid of the side effects . Sorry for this long story , but I do respect your advice very much. Thanks (Betty from Ontario)

[HeronNS in reply to CuriousBetsy]

Oh dear, I am so sorry to hear this.

As it seems you must have been doing everything you could, do you know if your doctor ever checked you for "secondary causes of osteoporosis"?

americanbonehealth.org/bone...

One which we read about surprisingly often on these forums is problems with the parathyroid glands. These are nothing to do with thyroid itself, they just happen to be located near the thyroid. This issue can cause improper metabolism of calcium and lead to bone thinning.

I really cannot offer advice about medication as I think all bets are off when one suffers fractures. it's just strange to me that you'd fracture if you've been taking a medication and supplements (and exercising!) unless there is another factor at play which is preventing your body from utilising calcium properly to build bone. Anyway, just a suggestion.

Once you are healed enough get a physiotherapist to show you how to protect your back when you're active, if you haven't already.

Hope you are keeping well otherwise in these extraordinary times. Sadly I can't visit my only grandchild who lives with her parents in Ontario, and turns one year old nnext week. Just so thankful we had a chance to meet her as a newborn, and again a little while before Christmas. But so far we've missed three planned family visits back and forth so far this year. Skype helps but not the same of course. I hope the trains do start running again in November as if they don't I have no idea how we'll ever get to Ontario again. Not going to fly and really my husband and I are not fit to drive long distances any more. We know our limits!