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Alternative medicine

Hi, after 4 years of prednisolone, and two flares when reducing the doses, I am now looking into alternative solution.

Been to see a Chinese Dr. (?) yesterday. Was adviced to start accuptantre, cupping, massage and some herbal pills. Might be good to try, but...... The Chinese Dr. told me I need to stop taking the prednisolone all together and straight away ( I am currently on 9/10mg) otherwise his treatment will not work. Anyone here had tried Chinese medicine / treatment with any success? Is it not dangerous to stop prednisolone from one day to the next? Thanks in advance for any advice.

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Everything I have read says not to stop suddenly. I take it that you would be paying him for the cupping and the rest . I think fair enough try anything that might help ease the pain but to stop pred could be a huge mistake.

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Thank you. This is my real worry. Don't think I will stop.

Of course it costs a bomb....but really fed up feeling unwell

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I know , I t gets me down sometimes. Take care .

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Thank you

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Absolutely DO NOT stop steroids straight away, my doctor even recently told me this, said it was dangerous, and must be lowered slowly, well the fastest 1mg per month, I am on same as you 9mg....and doing it at this rate is giving me lots of pain, try things like acupuncture etc, but alongside the steroids until you are free of them..........good luck.....

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Thank you.

Might need to look for some1 else that agrees to do accuptantre etc. along side with Prednisolone.

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I just made an appointment with a intergrative medicine doctor. I hate being onnthese poisons given to us for PMR. At this facility they use accupuncture, reiki and supplements. I’m taking my bag of drugs with me to see what I need to remove. I really believe my statin drug triggered my PMR. I also wound just stop prednisone...gradually taper. I personally believe all these regular docs just push drugs. Big pharma and the fda have been in bed together for years only for $$...not your well-being. Best of luck to you!

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The one thing you cannot accuse Big Pharma of is pushing pred for PMR! It was developed over 60 years ago - which, if nothing else, means there really isn't much to learn about its side effects - so is years out of patent and cheap as chips. The main part of the cost is the actual manufacturing process and why a 1mg tablet costs as much as or more than a 5mg one.

The reason they use pred for PMR and GCA is that, until very recently, there was nothing else that worked. Now the new drug could be classified under your complaint as including hospital costs I believe it is IRO $30,000.

Good luck trying alternative options but the vast majority of people who come on the forums insisting they won't take pred end up doing so sooner or later when nothing else relieves the pain and stiffness. And if you develop any signs of GCA - please put your pride in your pocket and accept pred (or tocilizumab, the expensive stuff, if you are offered it) because the alternative is risking irreversible loss of vision if you leave it too long. As a few people on the forum can tell you from personal experience - because their doctor didn't recognise what was going on in time. Once vision is gone in one eye there is no guarantee that any dose of pred will save your vision in the other.

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Thank you

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True. You can't fool around with any of them especially GCA.

You can lose your sight.

PMRPro has it here, pred, Medrol or Toc ... (never sure of the name).

But pred is specifically proven to stop GCA and deal with the inflammation.

I know toc .... has been approved but the side effects may be major, including more autoimmunity and potential for infection.

And dealing w this can be enough.

I have GCA, was diagnosed 4 long months after the first symptoms and pred has been the med that dealt w it and still does.

I use Medrol which is easier on the body than Prednisone.

Some of the autoimmune can be very serious.

I use herbals, but nothing to interfere w the low dose maintenance of pred (3 mgs) that I currently take.

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Could you/anyone tell me your symptoms of GCA? I have slight neck pain/stiffness, but don't know if it's from PMR or just daily life.(63 yr) How often do you have an ophthalmologist check your eyes? Thanks for your time/help.

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Thank you

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Dear Mepoly, you might want to consider reporting this “dr” to the association of acupuncturists that is if this person is connected since he or she gives a very risky advice. Good you come to this forum with this event. Good luck and get Well in your own time, aletta

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Thank you. I am now re-assured not to stop

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Thank you

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I have had massage and acupuncture whilst on 10 mgs pred... no side effects at all. You may want to reconsider going to this "doctor " and saving what sounds like quite a few pennies.

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Hi,

Definitely do not stop Pred just like that. It’s okay if you’ve only been on for a week or two for some illnesses - asthma etc, but once you been on for 3weeks your own body stops producing cortisol, so you could end up with adrenal failure.

It specifically says on the drug paperwork, and also the steroid card you should be carrying DO NOT STOP SUDDENLY!

Your so called “dr” obviously does not understand Pred. You can have acupuncture and massage treatment quite safely with Pred.

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Thank you. Been on Prednisolone for nearly 4 years.... Will have to look for some1 who agrees to do accuptantre along side with Prednisolone.

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That shouldn’t be a problem. Sure there are many on here who have it. Just a word of warning if you go for massage, make sure the therapist knows and understands PMR and it’s effects on muscles.

Hope you find something that helps,

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Or Bowen Therapy helps some people, if you can find someone who does it in your area....

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Thank you. Just found someone in London who does Bowen Therapy. Going to find out more about it on Monday.

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I attended a demo of Bowen therapy at chiropractor's office and would like to know more but I think it is pretty expensive .

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It is a similar price most places to a massage or other similar therapy - but if it is going to make a difference to YOU then you will see within 3 sessions. If nothing has happened then it is usually suggested it isn't going to. It shouldn't be like with some chiropractors who tell you you need a weekly treatment until kingdom come to manage your problem.

I find a session of Bowen therapy leaves me as relaxed as a massage - and it is far gentler and less likely to leave you with sore muscles. To me it is worth it for that alone.

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I am going to find out more about it on Mondat

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Monday

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I would not do that mepoly. It may be that the herbal preparation contains a type of steroid. If you suddenly stop Pred it will be those symptoms that the Chinese practioner will have to treat. You could become very ill indeed within a UK medical system that does not understand Chinese medicine and how to get you back from the effects if it goes wrong for you. I can understand your frustration after 4 years of Pred and still at a significant dose. It is however the devil we know and perhaps not as harmful as was first supposed. PMRPro posted a very interesting link about the lack of long term damage on moderate to low doses long term. Have a look for it under her posts.

I think Koala has had some success going down this path. You may want to talk to her.

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Thank you. I was concerned, but wanted to hear other opinion. I think I will give the herbal medication a miss

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I use massage and cranial-sacral therapy along with my prednisone. I was careful to choose someone very knowledgeable about myofacial pain and willing to listen about the PMR. I found the cranial helped in the beginning with the "malaise " and depression. The massage helps with the aches and pains of muscles being out of condition. I also exercise in a warm therapy pool. I feel like the combination has allowed me to be more active while on this journey. I wish there was a Bowen therapist nearby as it might help more than the cranial work as the malaise has passed.

I think it's important to have folks in addition to the doctor to help you - whether it's an alternative medicine, a counselor or good friend to listen, a spiritual person, or even a housekeeper to help with life's messes. It's a hard road to go alone.

Be careful with these latest recommendations and good luck in finding help to feel better. Thinking of you

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Thank you

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If you want to make yourself seriously ill - you can try doing what he says. If you are currently on IRO 10mg of pred you MUST NOT STOP IT SUDDENLY. You must taper the dose to allow normal adrenal function to return and that will take some time. Otherwise you could have an Addisonian crisis - which is potentially fatal if it isn't identified in time.

Just another voice to add to the chorus - and I know you have heard.

Someone has suggested reporting him - and I do think it is a good idea. The advice to stop pred suddenly is totally irresponsible and potentially dangerous. I don't know what his "herbal" remedies are but at least one Chinese medication has been tested and found to contain large and potentially dangerous amounts of steroids - despite claiming it was a non-steroid way to manage RA pain. These products are not subject to monitoring and checks during manufacture and can contain anything.

There are two reasons for having a flare of PMR. The primary one is reducing too far or too fast and landing below the dose you currently need. If the reduction steps are too big you can easily miss the dose you are looking for: the lowest dose that gives the same relief the starting dose did. With small steps you reduce to the dose that starts to allow niggles and go straight back to the previous dose. Wait a bit and try again - but when it happens at the same place 2 or 3 times, accept that is where you are meant to be. By reducing in small steps and waiting a month between drops you rarely overshoot, rarely allow a flare and so don't have to return to a higher dose and start again. Keeping at a fairly stable dose is essential to living well with PMR - and it can be done.

For half of patients PMR lasts between 4 and 6 years or so so you really are typical. For a small number of us it lasts a log time - I'm heading for 14 years now and counting. But I live well. I take the dose I need and have no side effects worth mentioning. I gained a lot of weight - and lost it all again. Most side effects can be managed when you know how - just ask for other people's techniques. But a recent study has shown that, in fact, being on PMR-level doses of pred do not cause much that you might experience anyway:

practicalpainmanagement.com...

Remember we are aging - and age does not come alone! I had PMR for 5 years without pred and many of the things that are often blamed on pred happened to me because of having PMR. I was immobile because of pain, that led to depression, weight gain, is a major risk factor for osteoporosis.

Someone suggested using the money you were considering on spending on alternative medicine on a cleaning lady - that helps so much with the pain of PMR! Use it to have other therapies that you enjoy. I used Bowen therapy very successfully to manage the add-ons as I call them. It doesn't cure the PMR - but it does help and is very gentle. I also use therapeutic massage for myofascial pain syndrome - there you have to be careful, for some people it feels as if it has caused a flare because it can release the inflammatory substances that are trapped in muscle in MPS but are all through the system in PMR. But once that has subsided it often helps a lot. Tell us on another thread what your main problems are - and someone will almost certainly have found something that helps.

If you find a good physiotherapy practice you may find Bowen and acupuncture being offered too - without having to accept the dictates of an alternative practitioner

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Thank you for your very helpful reply.

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Your first hint that this guy may be a quack is that he told you to get of pred immediately. Doing that could, quite possibly, kill you. If he doesn't know that, then he is not the person from whom you should seek treatment.

Let me also point out that "herbs" are also medicines. One needs to know what is actually in whatever concoction that's being recommended. Just because it's not a pharmaceutical pill or shot or IV doesn't mean it doesn't have powerful effects and negative side effects.

If you really want to explore this route, look for someone qualified, perhaps someone who actually is a board certified doctor, but is also well educated in alternative medicines.

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Thank you for the lengthy reply, it was extremely helpful.

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I do tend to be rather direct, so I hope my tone was OK.

I feel very strongly on this subject because someone near and dear to me made the choice to go to a Chinese herbalist to treat what was originally a minor infection, and is now no longer with us.

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Sorry to hear that.

I was looking for a direct reply and your tone was just right. Don't worry about it.

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There is someone on this forum who is using CTM to manage her PMR (and maybe even GCA?) somewhat successfully, and you will find her post within the last week or two.

I have great respect for CTM, BUT...for all the reasons discussed by others already, I would never drop off the long term prednisone use suddenly and without a careful weaning process. And, I'd be suspicious of the education level of any Practioner or Physic an who told me to do so, even if I trusted their good intent. (Also, personally, I would not do the cupping process with PMR.) I wish there were more" integration" or...at the very least education among physicians from both traditions about the other. Lacking that, it's up to the patients to educate ourselves and to be pragmatic.

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Sorry for my ignorance, but what's the meaning of CTM?

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Chinese Traditional Medicine

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Correct abbreviation is TCM. the traditional word comes first.

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Thank you.....

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I have had acupuncture and cupping and found it a complete waste of time, although it may work for some people. I must admit your Chinese doctor does sound somewhat dangerous telling you to stop taking pred suddenly unless he is replacing it with Chinese herbs that contain steroids. Even then I do not think I would go down that path personally. You could have serious problems with your adrenal glands.

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Thank you

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Do be careful - it is not advisable to just stop the pred. I see a holistic lady but have kept on with the pred. I did get advice from my dr and he was happy for me to try alternatives but to talk it over with him first. Perhaps it would be advisable for you to do same. Good luck and look forward to hearing how you get on.

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Thank you

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Thank you

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Fire the Quack!

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Been there done that. In addition to being told to stop Prednisone (15mg at the time)my CTM dr told me to increase my thyroid meds. I was so desperate I did what I was told. Made myself 100x sicker. Like PMRPRO suggests, spend the money on other things like a cleaning lady or Bowen Massage. After that awful decision I was determined to find a really good Rheumatologist and I did. She was so angry about my CTM experience. Almost a year later I’m at 4.5mg (Rayos/Prednisone + Actemra and feeling well. I’m able to work full time and resume a somewhat normal life. I’m still limited with exercising and still need to “count my spoons” and watch my carbs. It’s my new normal. From all my pain and misery I experienced these past 2 years I have learned so much about myself and compassion for others who are chronically ill. I’m a better person for this experience. Hugs to all who support me thru this journey and to all I hope I can support.

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Thank you

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Marie1479. I'm curious. Do you have GCA in addition to PMR or PMR alone? What prompted your Rheumy to prescribe Actemra if you have PMR alone? I thought it was only FDA approved of UK approved for GCA, but is prescribed off label under extenuating conditions.

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PMR only. Was unable to wean under 12mg. Had normal glucose and cholesterol levels prior to PMR. 3 months on Steroids my cholesterol shot up 68pts and almost pre-diabetic. I was also so sick.

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There are US rheumies who are using it in PMR - but I'm fairly sure at least some have reclassified their patients as RA. I also get the impression it is being done as a sort of pilot study - there would be a much bigger patient population if they could get it approved for PMR too. The UK is probably about to approve it or GCA - there is a NICE meeting in the near future. At present it is done on an individual basis.

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US??

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In the US it is approved for GCA since last June or July. Supposedly fast tracked for PMR too. Did your adrenals kick in smoothly on the combo of Rayos and Actemra?

Is there any research on the effect of Actemra in combo with Pred on reactivating adrenals? If the Adrenals don't kick in faster on Actemra, even if the PMR is waiting, how do you reduce the Pred more quickly when it gets down to the sixes and sevens?

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Quite Hindags - my question too! In the clinical trials the pred and Actemra were started at the same time and the pred reduced steadily right from the start - so patients probably never spent long enough on pred for the adrenal function to become as compromised.

When it is introduced after some time on pred then the reduction of pred from 7mg or so MUST be slowed.

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I am doing accupunture, massage and hoeopathy along with the prednisone. My Chineese doctor did not tell me to stop prednisone. Her hope is that it will help me not to flare and therefore get the GCAPMR under control more quickly.

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The main reason for flares in PMR/GCA is reducing the dose too far or too fast. The pred does nothing at all to control the disease process, nothing is known that does that, but it mops up the inflammation as it is created. You need enough to do that - just like using a pocket handkerchief is not enough to mop up a flood, you need a bath towel for a better result!

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Thank you

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What I am doing does give me some relief from the side effects of the prednisone. For me, the swelling has been very problematic and the accupunture and massage help wit that! I am grateful for any improvements in how I feel.

The accupuncture helps the tightness in my muscles and most times relieves the headache for a few hours.

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Thank you

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Hi mepoly, yes I am using traditional chinese medicine TCM for my treatment. Rather than repeating it all here you can read about it on my thread I ditched the pred, which is located in the treatment issues section, or click on my profile to find it.

Here are my thoughts...as others have stated you cannot just stop cortio steriods. I weaned myself off them after the medical doctor got me down to 12mg. I then cut down myself slowly over about 4 weeks as I started the TCM. I have been solely on TCM for 7 months now. Some accupuncture helps but you do not need all these extras. The 8nly way to get healed is ensure your Chinese medicine doctor is treating you for inflammation and digestion. The healing for PMR must come from the gut. A traditional TCM doctor will gaugue your progressby reading your pulses in wrists, checking tongue coating and asking about you bowel motions, colour etc. If not doing this he is not usuing traditional methods. Ask to see the creditionals from china training. My practioner has them up in waiting room for all to see.

The other c8nsiderations here are the expense. Taking herbal treatments is a long term thing. You wont see results or feel better for a long time, and you will still have some pain. I am on a very strict and limited diet and you need to ask yourself if you can do all this. Otherwise the medicine will not work.

Wishing you well. Thousands of people around the world take TCM for our conditions, but you need to right people who are working in your interests. You also need to understand how TCM works and the ethos behind it. Take care, koala9

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Do I understand you to be saying you reduced from 12mg to zero over 4 weeks? How long had you been on pred?

To reduce at that speed after more than 2 or 3 months on pred, especially at doses above 10mg could be risky so I would counsel care to others thinking of trying it.

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I remember being on 12 when I went away late January, then I started on the TCM and diet in Mid March. Had been on pred since oct or nov previous year. When I stopped I had reduced to 5mg. But I didnt go from that to nothing. I had my new medicine which was doing the work. So not like taking nothing. I am not stupid.

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I'm not talking about the PMR - I am talking about adrenal insufficiency and giving them time to start functioning again after being on higher doses of pred for some months.

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Is there any research saying that thousands of people use TCM for PMR/GCA? I would be surprised.

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Well let me see, there are 14.3 billion people in China. Plenty of people have this. My practioners were doctors in China.

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There can't be that many people in China. The whole planet only has 7.6 billion.

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Koala, there seem to be twice as many people in China as are on planet earth. Is there something they know we don’t know?

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Oops meant to write 1.3. Am on tiny tablet in car in the dark

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My practioner was trained in a hospital in China and Srilanka. Very dedicated practitioner.

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Mepoly, there is a treatment you might consider. Low level light therapy. Specifically the version called Bioflex, which is provided by a few clinics in the UK. I'm in Canada, where it was developed, so quite easy for me to access. I used it for over a year to help me taper my pred dose to a low level, as low as 1.5. I've been tapered off the light treatment and possibly coincidentally have experienced a relatively minor flare, although there were a number of other stressors coincidentally at the same time, including my doctor's careless suggestion that I finish up my tablets and stop and see what happened (I didn't do that). It has not been studied in PMR but in RA has been shown to reduce activity of pain-causing cytokines. From my experience I would recommend that people who have access to a clinic which provides it, and have insurance coverage for the physiotherapists or chiropractors who provide it, should give it a try. Not a speedy treatment, but one that is possibly effective to help reduce the pred dose. It is probably not effective at dosages above 8 mg.

bioflexlaser.com/

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That sounds interesting. I have read a little about light therapy and also using coloured lights for healing. My TCM practitioner has used laser light therapy on my feet where I have bad inflammation.

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TCM looks to be very chancy. No doubt there are careful practitioners using authentic methods, but the risks of adulteration seem too high to be worth taking:

sciencebasedmedicine.org/wh...

theguardian.com/uk/2001/sep...

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I have been taking, toctino, (allitretinoin) ... On it for three x three month prescription .. ok confusing, each three month visit I was given the months meds ... Hugely expensive, as the pharmacist get the need to tell me 🤔🤔🤔, however, I am now clear, risky cheat, and believe me, head to foot blood bath with all the itching, the '48 point allergy tests ... Push for this, it totally REBOOTS, good luck ... Oh, did that Chinese stuff, paid out for acupuncture and then they bring out the,'tea' ... £150 I don't think so, Dave yourself your money honey .. toctino all the way 😀😀😀

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