My wife recently developed what is believed to be Polymyalgia Rheumatica, although this is not confirmed by ESR tests and steroid treatment failed to have any effect over a period of 7 days.
With the doctors scratching their heads we are wondering about herbal treatment; you can't stay on opiate pain killers for ever. There's a treatment called Rheumeton available from New Zealand. Any one tried it?
Well Kentish Man
I just came in to post on this site about New Zealand and lo and behold you have already found it.
This is the website. http://www.rheumeton.com/research.html
What is interesting is that it states that the New Zealand Health Service has approved it.
I know you should not believe everything you find on the web - but it could be worth a look and you could always check the veracity of that statement with the NZ Health Service.
mrs K
Kentish Man
If your wife has not been diagnosed with PMR is she having test for other illnesses?
Also is she taking statins by any chance. If so read the side effects.
Visit www.pmr-gca-northeast.org.uk and look at the 28 page document written by Professor Dasgupta on PMR and GCA it may help you in your quest.
If the GP have tried steroids and there was no relief, it is most likely that they are correct in saying its not PMR. Whilst you can have normal readings and have PMR if the symptoms are not relieved with steroids - it is unlikely it is PMR.
I have just been looking at the website you suggest about Rheumeton - with a great deal of scepticism I must admit - it all sounded too good to be true. I read through the 'testimonials' and my scepticism increased - they all sound as though they are written by the people who write the scam e-mails that come telling you your bank account details need confirming. I continued looking and did a google search for 'gordon's herbal research centre'. There was an entry for it in connection with a condition called 'Chostocondritis' (no - I hadn't heard of it either!). Anyway if you follow that link it takes you to a similar site to the Rheumeton one but for a herbal treatment for this condition called Chondreton. This is where it gets really interesting - if you read the testimonials on this site they are identical to the ones on the polymyalgia site - as is the description of how the drug was created!!
I guess it just proves that if it sounds too good to be true it probably is. Maybe one day they will find a cure but until then I suggest you save your money - DON'T BUY IT!!!
Barbara
Yes, I too was interested to follow this one up, and eventually came up with similar thoughts to Barbara.
When checking the list of ingredients, they all appear to have so-called anti-inflammatory and/or diuretic benefits, and as such would be recommended for us sufferers of PMR/GCA.
However, a lot of these ingredients are found naturally in our foods, for instance asparagus is a diuretic, cinnamon is anti-inflammatory, turmeric, although not mentioned in the list, is also a known highly anti-inflammatory spice. So to include these in our daily diets, plus celery (another diuretic) and beetroot (anti-inflammatory) can, I feel, be of enormous help in fighting conditions such as ours.
I was once advised not to take any alternative medicines alongside steroids, as the interraction would be unknown, so, although Rheumaten could be tried out by anyone suffering the first symptoms of PMR to see if they found it of any benefit, once on steroids for any length of time it probably would not be a good idea to take Rheumaton without checking with the rheumatologist first.
EVERYTHING is worth looking at though, because it's possible that one day someone out there is going to hit on a miracle treatment for us and I'm so grateful for having someone like Mrs K around who is so exhaustive in her search for knowledge on this subject and her unstinting help and advice to so many.
So, in the meantime, stick with the most natural and pesticide-free vegetables and fruit that you can afford and eat plenty of it every day, (steaming all your veggies to get the most from the vitamins/minerals) and good luck to all of you.
MrsO
I agree with Mrs O's comments about trying to eat healthily and trying foods with anti-inflamatory properties, and I think that anything is worth a try - but I think these Rheumaton tablets are a scam - has anyone actually received any?? I looked further on the site and found them recommended for a number of different conditions - the same research evidence is quoted for each condition and identical testimonials. This cannot be real - I don't think Gordon's Herbal research centre exists! In fact if you do a search for it on google then go to page 2 of the results there is a list of conditions that they recommend their herbal treatment for ranging from peyreton for peyronies disease to polpeton for post polio syndrome - all with the same research, background story and testimonials (which cleverly don't mention anyone's actual condition) though there is no listing for the actual research centre which is odd! It all makes quite entertaining reading but it is disturbing that people are paying out good money for a product that doesn't seem to exist!
Yes I totally agree.
I Googled \"Gordon's Herbal Research Center New Zealand\"
What came up is that the man in Auckland has every illness going.
It looked like a con to me so I emailed NZ and Yes its not been cleared.
What made me pleased, was to read that you had all checked it out.
Next time, I will check beforehand - mind that does not stop me looking.
You got there before me, Mrs. K. I had asked my daughter who lives in NZ to check and she informed me that their Department of Health had never heard of it and certainly hadn't approved it in any way.
Nefret
Thank you so much folks for your replies - they are very much appreciated. I'll try to answer some of the questions raised in the hope that some further light might be shed on this dibilitating condition.
Mrs K: There has been no firm diagnosis. The first doctor to take my wife's illness seriously at NDDH was brilliant, taking X-Rays and blood tests. Because the ESR test was negative he put a question mark against his own diagnosis and prescibed 15mg/day Prednisolone for a week. That failed to have any effect so our GP stopped the steroid treatment, prescribed an opiate pain killer, arranged further blood tests (all negative) and arranged an MRI scan, suspecting nerve entrapment. The MRI scan revealed no serious problem, so further blood tests were done and the opiates continued. A different doctor in our practice thinks it may be PMR. He puts little trust in the ESR test. My wife is seeing yet another doctor for review next week. She has never taken statins and remains off steroids.
I have spoken to four people who have been diagnosed with PMR and the symptoms are all very much the same. However my brother in Australia was treated for Ross River fever for 3 months until he was correctly diagnosed, the symptoms being almost identical!
Mrs O: My wife has always eaten a most careful diet with much fruit and veg and our Tesco steamer has been well used! We are not herbal \"freaks\", but have a deep respect for natural remedies where applicable and use many herbs in our cooking. I may be wrong, but it seems doctors are as keen to splash steroids around now days as they were with antibiotics at one time, and that's given us many problems.
BJM, Mrs K and Nefret: Thank you so much for your input. If you are right, and it seems you are, this web site should remove the advertisement for Rheumeton as it is a cruel hoax. I have seen within a few weeks a healthy, active and sparkling lady reduced to a struggling invalid in almost unbearable pain, and when our generally brilliant medical professional are struggling to diagnose one looks for any solution.
But I guess quacks have for ever been around.
Once again many thanks to all for your help, so much appreciated at a difficult time.
Kentish Man
I posted this on another query on this site and it may just be helpful to you as well.
Two things:
The BSR (British Society of Rheumatology) have just formally adopted guidelines for the treatment of PMR. It would be worth you looking them up either on the BSR site, or on www.pmr-gca-northeast.org.uk
The other is that there are Support Groups in some parts of the UK and we do have contacts in Kent. Details are also on the above site.
Keep on coming to this site - it is so informative and a help to us all.
mrs K
Hello Kentish Man
Your mention of Ross River Disease brought to mind another experience posted on this site a long time ago. The lady had been diagnosed initially with PMR and was treated with steroids to no avail. She was eventually discovered by accident to have Lyme Disease which you may know is caused by a tick bite and requires antibiotic treatment. She was unaware of the tick bite but was being treated with antibiotics for a different problem and recovered from her painful symptoms.
Just a thought, but I do so hope your wife gets a correct diagnosis soon.
MrsO
Good morning everyone
BJM, Mrs K and Nefret: Thank you so much for your input. If you are right, and it seems you are, this web site should remove the advertisement for Rheumeton as it is a cruel hoax.
The ads are served by Google and as you can appreciate, there are most probably millions of them - some good and some not so good.
Here at Patient UK we do have the facility to ban inappropriate ads from our site, after reading your comments above I have therefore banned the Rheumeton ad, although it can take up to 24 hours for it to stop showing.
Unfortunately, certain conditions seem to attract more than their fair share of bogus claims and I think PMR is one of them. If you see anymore that you consider inappropriate, please PM me the URL and I will add it to the banned list for you. Don't worry about how many you send through, it doesn't take more than a couple of minutes to add them.
If you send through any over the next week, please don't take offence if you don't hear from me, as I am on annual leave.
Regards
Lin
Lin - just wanted to say thanks and happy holidays and I'm sure that's on behalf of all us PMR/GCA sufferers!
MrsO
Yes, thanks Lin, much appreciated.
Well we saw yet another doctor at our group practice yesterday, an experienced locum who was very thorough. His firm view is that it is not PMR as there was no response to steroids within the week and that the blood tests are all negative, but he can't say what it is. He is of the opinion that Fibromyalgia does not exist as an illnes (!!) and that it could not be Lyme's disease since there was no rash and no inflamation of the joints. However there will be a blood test for this, just in case. Any comments Mrs O? Information I have read says that one in four do not develop a rash, and we do live in rural sheep & deer country.
So that's five doctors my wife has seen to date and there is a 50/50 split on the diagnosis for PMR, with one don't know. Seeing another next week, but in the mean time my wife is feeling a bit better. Today however the burning sensation in her arms has returned, described like an excruciating burn, a syptom just like that of two people I know who have been diagnosed with this disease.
Thanks again everyone for your help. This is a wonderfully helpful web site.
Kentish Man
Hello, everyone!
Was following this thread about bogus herbal treatments for PMR and saw your request about notifying you of ads to be banned.
There's one on the right as I am writing this, with a website called melgical (dot) com. Looks much like the Rheumaton one.
Best regards,
C.
Hello again Kentish Man
Your poor wife - it just seems that the more doctors you are seeing, the more confusing her illness is becoming. You would think that if it is an auto immune illness then a good rheumatologist would be able to put his finger on it. Having said that, I was in bed for 3 months in 2006 unable to move a muscle in my body and the rheumatologist I was then under was unable to diagnose me in spite of putting me through a barrage of tests over 9 months. It was only a year later having seemingly recovered from the previous illness, that Giant Cell Arteritis was diagnosed by a different rheumatologist and GP (that took nearly 4 weeks) and the previous illness (which had also now returned) was diagnosed as PMR, the two conditions having a link. My symptoms had been classic in both illnesses but it seems you have to be lucky to see the right expert at the right time! I hope for both you and your wife's sake that the right expert comes along soon. Meanwhile, I bet your wife is so grateful that she has such a caring husband. Good luck and do let us know how you get on.
MrsO
Dear Mrs O
Thank you so much for your concern and good wishes; much appreciated.
We also have to thank you in a huge way for helping to get a diagnosis of my wife's illness.
You remember your friend who was treated for PMG but had Lyme disease? Well, we asked one of the locum doctors we saw if this was a possiblity. On hearing that there was no observed rash and no particularly painful joints he dismissed this as a possibility, but we insisted on a blood test. This was delayed because of brief hospitalisation, but was finally carried out the week before last. Five days later came a phone call telling us of a positive on Lyme disease. Anti-biotics were immediately prescribed and already there has been an improvement.
So if it had not been for my report of the mis-diagnosis of my brother, this wonderful web-site, your friend's experience of mis-dignosis, and your kind help the diagnosis may never have occurred. From the bottom of our hearts we thank you so much.
We live in deer and sheep country, so the possibility of Lyme disease should be recognised by the medical profession. But not one of the doctors we saw (to date 7) diagnosed this as a possibility. If we had believed the locum we would still not have had a diagnosis. As we were awaiting the blood test results we were seen by a brilliant rheumatologist who did confirm that a Lyme disease test should always be carried out when there is any doubt with muscular pain. There is not always a rash, and joints are not always swollen and sore. We certainly need to make our practice aware of the situation.
So to all who may read this blog the lesson is clear; if there is doubt over the dignosis of PMR get a check done for Lyme disease, especially if you live in deer and sheep country.
And Mrs O, once again, many thanks. We hope you are feeling better now too and wish you well for the future. And many many thanks too to patient.info; without you a diagnosis may not have been made.
Our best regards and thanks to all who have contributed to this blog.
Kentish Man & Wife.
Hi Kentish Man
Well, what a good thing you insisted on that blood test. It's really thanks to whoever contributed to this site a very long time ago with her experience of Lyme Disease that was locked away somewhere at the back of my mind that has proved once again how incredibly valuable this site is. May your wife now quickly make a complete recovery and all good wishes to you both for the future, and I do so appreciate your good wishes to myself.
MrsO
DO NOT ORDER RHUEMETON.......The company is a scam. They will take your money, you will NOT receive the product!!
Hello SLC and thank you for the warning about so-called Rheumaton - a few of us researched it last year and discovered it to be a scam but it's not a bad idea to repeat again for the new people to the forum.
MrsO