This POST is in response to Jacob Barie MD.....79yo male with PMR..on Prednisone - which doesn't seem to want to load when I press the REPLY button - never happened before. Anyway YES - I am taking Astragalus as I have used this herbal supplement before, when I had cancer 12 years ago. It worked then and I'm expecting it to work again.
I'm a recent member on this site as I was only diagnosed with GCA 3 months ago (May 4th to be exact). Started on 60 mg Prednisonole; a dose which I took for 6 weeks before starting to reduce, I am now down to 22.5 mg daily. After 40 mg I started to control my own reduction but will be talking with my Doctor this week - I've had the same Doctor for 15 years and he has always been very supportive.
So far the only problems I've had with pain on withdrawal - and boy was it painful - was when I read somewhere (on this site) that one shouldn't be taking any herbal supplements with steroids; and so I stupidly stopped taking the Astragalus !! Bad move - as I then suffered with debilitating backache until just 3 days ago when I started taking the Astragalus again, and am happy to report that I'm now feeling fairly 'normal'. Almost pain free and certainly as near to 'normal' as I have been since starting on these steroids. It's been over a month since my last blood results and my infection level then was down from 95 to 7.5. I am due to get more results this week - hopefully by Thursday. Actually it's very frustrating having to wait 2 weeks for the results each time as, to keep on top of this thing safely, I need blood results faster than that. The last tests were done at the Hospital and, in fairness, they do come back a bit faster when done at the Surgery.
In view of the fact that 60 years is mentioned as to how long ago the treatment has been the same for PMRF and GCA GCA it surprises me that there isn't any mention - either on the site, or in the book, of any research into possible common denominators amongst the sufferers, but maybe I missed it ? As it's claimed they still don't know what is the trigger for the immune system turning on itself - maybe some research should be on the cards.
I can't recall anyone on this site saying that "one shouldn't be taking any herbal supplements with steroids". What has been said is that people on Prednisolone should not take any herbal supplements, or, in fact, any other medicines or over-the-counter preparations without first checking with their pharmacist for any possible interactions.
With regard to astragalus, you should definitely check this out with your pharmacist, and you might like to look at the following link:
where you will see that it says taking astragalus has the potential to offset the immunosuppressive effects of steroids.
You mentioned in your previous post that you had been gardening to the point where you said you'd "had it", and we replied that you had probably overdone it and aggravated your back.
Two weeks is a long time to wait for your blood test results. Mine were usually carried out a week before each appointment and each planned reduction depended on the results.
With regard to research, there is, in fact, a considerable amount of research going on by different groups around the country. Go to the PMRGCAuk website, pmrgcauk.com, and click on 'Research' in the left hand column on the home page.
This site, the book, and pmrgcauk.com have been my main points of reference, in the 3 months since being diagnosed with GCA. When I now look at the link you have given for Astragalus I recognise that I have seen it before - this time I note the word 'may'.
As it says, on the site, - so much is unknown and I'm using the Astragalus to (hopefully) achieve a balancing act which will leave me with at least an effective immune system for when I get down to the critical low dosage numbers. When I had my cancer I turned down the Chemo. and just had the radiotherapy - but used the Astragalus as an immune system builder. Whether it worked or it was just a co-incidence I can't say but it left me with a belief in it and these past 3 days have gone a long way to reinforcing that belief. I won't be checking with my Pharmacist as I intend to continue taking it anyway and time will tell.
On Thursday I will request a regular blood test at the surgery on a weekly basis as I now feel so well, and the reversal has come so fast, that I'm a bit concerned about my infection level - how's that for daft !! Reason tells me that if it was up again I would have symptoms and, currently, there are none.
Meanwhile I am not now taking any other medication - just the Prednisolone and the Astragalus - as none of the pain-killers previously worked (for me) anyway. I'm aware that it can still come and bite me on the bum but I am an eternal optimist.
I have done a tremendous amount of reading in the past 3 months, and did previously see the 'research' page; but still don't note any reference to research for common denominators - in the form of lifestyle prior to PMR or GCA showing up. Not how to treat after the event, but what happened to cause it.
Go to this site pmr-gca-northeast.org.uk and then click on Research and then International Survey.
Research has been undertaken for many years into cause and cure and is still on going. Auto-immune illnesses are notorious for being complicated as to why the body turns on itself.
The following places are where you can look to see the work that is being done.
The European Commission Public Health Rare Diseases.
OMERACT
EULAR
You wrote 'my infection level', my understanding is that infection means
contaminate (an organism, wound, etc) with pathogenic microorganisms. 2. to affect or become affected with a communicable disease. 3. to taint, pollute, or contaminate.
I did actually try to complete this survey 2 days ago, only to find that most of the questions and answer choices referred to PMR - and I have GCA. I 'submitted' my form but, again, pointing out why I had not been able to complete parts of it - to date I have not received any reply.
I refer to the results of my temporal biopsy and blood test as 'infection levels' as that is how my Doctor gave the results to me. I will question him on this when he rings tomorrow. I'm new to this so haven't cottoned onto the correct terminologies yet.,
Just to rule out any misunderstanding, the ESR and CRP blood tests reveal inflammation levels, NOT "infection" levels. I'm sure your Dr is aware of the terminology - is it possible you could have misheard him?
You mention you "now feel so well, and the reversal has come so fast". That is great news, as it means that your inflammation is responding really well to the steroids. Tapering in small decrements between each new dose will, hopefully, enable your route to remission to continue to go smoothly, always bearing in mind that the lower you get, the higher the percentage drop, and the less likely you are to encounter flaring inflammation.
I'm sure that I must have misremembered what he said, rather than misheard. Thank you for clearing that up, as he rings tomorrow and I need to be clear about where I am up to, and ask about inflammation levels. I could be feeling much better while this thing is silently creeping back up on me.
I had my first proper night's sleep last night - 6 straight hours.
Well bit of a mishap in that the Doctor failed to ring me on Thursday. However, while up at the hospital with my Husband today I got my ESR and CRP readings from the blood tests I had done there on 23rd July. My ESR was 10 and my CRP 1.8 - both, I was assured, well within the normal range. My local GP Practice has now expanded, and merged, to become a specialist Health Centre over 6 sites and, at one of them, they are operating walk-in blood tests (without appointment) between 8am and 8pm daily - so monitoring has suddenly got easier. I'll now be able to keep on top of my results.
I also have an appointment with the Doctor on Tuesday at which stage I'll be asking for my infection level reading from the 23rd July. While it's great news that the inflammation is down I don't know which result gives me the measure of the GCA infection level, and I forgot to ask at the hospital.
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I was at the Vasculitis Patient Symposium in London at Easter and had the privilege of listening to some of the top Vasculitis " experts " from around the world.
Much research has been done over the years and is still going on into the causes of Vasculitis. The problem is it's complicated and multi factorial. No one gene is responsible ( unlike Huntingdons disease ), multiple genes are involved. Ethnicity plays a part for certain types, but interestingly emigration seems to alter the risk. We know that stress can trigger the illness but not whether you have to be genetically susceptible in the first place. Environmental factors, previous bacterial, viral or fungal infections are in the mix as well.
We all want an answer for " why " but unfortunately it's proving a difficult/ unanswerable question.
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It really is a puzzle to me as there has never been - certainly two generations back - any cases of Vasculitis in my family on either side. Not even any cases of Arthritis or Rheumatism. Neither have I ever suffered from Viral or Fungal infections - not even a slight one. I've never even had cold sores - so no herpes virus.
I always like to know 'Why' - Mum claimed it was the first word I ever said !!! That way I avoid taking the same 'route' twice.
GCA is a vasculitis and the Vasculitis organisation have carried out much research into possible causes, so far revealing that it appears to affect those who are genetically predisposed, ruling out many causes, including Streptococcus, Parvo Virus, Hepatitis. No clear infectious agent has been found as a trigger.
One research team has been exploring the possibility of neutrophils playing a part which you may find interesting:
There hasn't ever been - in my memory - any cases of Vasculitis in my family on either side. Not even any cases of Arthritis or Rheumatism. Neither have I ever suffered from Viral or Fungal infections - not even a slight one. I've never even had cold sores - so no herpes virus.
I did have 3 conditions 50 years ago but none caused by a viral infection, but from living in a very damp flat for 3 years. These were Sciatica, Lumbago and Pleurisy, none of which returned when my environment changed - and that was in 1959-1961 incl..
Other than that, and a few broken bones - most since retiring (just clumsy and all healed within 6 weeks) - I've been very healthy.
I was very interested in reading about the lady who managed to be 'cured' in 6 months by changing her diet and walking a lot - I think I've got that right. Person after my own heart - a true Optimist. Ironically I also changed my diet immediately on diagnosis. It wasn't too bad at that point - I avoid ready meals anyway, as I can cook and like baking, but confess to a sweet tooth. I have a book called FOODS THAT HARM AND FOODS THAT HEAL which is a guide to foods that will replace those nutrients stripped out by the steroids. I've never been fan of salad - figured that if I'd been meant to eat lettuce leaves I'd have been born a rabbit ! Now I consume lettuce (Potassium) every day and am actually getting to like it; also walnuts and almonds, plain Yoghurt, Blueberries, Salmon, Tuna, Vegetables (roasted not fried) etc. you get the picture. Not a biscuit or cake has passed my lips recently, and that is a first.
I don't drink or smoke anyway so no problems there.
I have read the link you sent me and printed it out to show my Doctor - I need to ask him about this as well. I was surprised tpo read that, even after Steroid treatment, one can still go blind if the condition hasn't really gone - or that is what is implied. How is one to know if it's still lurking. I note the article was written in April 2014 and will look on Google later tonight to see if there has been an update.
It is suggested that Astragulus reduces the effectiveness of pred, as pred is suppressing your immune system, as the immune system has turned terrorist and is fighting your body. It is said that it is not a good idea to take supplements etc that improve the immune system for this reason.
I've done research (off this site) and so was aware of that when I chose to do it. I understand the apparent logic of it. However, reading so very many posts where people have been on Preds. for years and can't get off them, it occurred to me that there is a huge difference between supressing a very strong immune system, that has turned on itself, to the point where (hopefully) it will behave normally again; and flattening it completely. I don't want a body without an effective (albeit it weakened) immune system. No wonder it's just about impossible to get off the Prednisolone. Currently I'm carefully walking a tightrope and taking each day as it comes.
I'm only 3 months in, so a long way to go - 'though I'm not planning on it being years.
I did read that there had been research into auto immune diseases, I think it was MS, where they killed off the immune system completely using chemo and then let it become reborn so that you started off with a new immune system. I am not sure how far they have got with it, I am not trying it though until others have tried it and say it is OK.
Piglette, you may be referring to a drug called Campath which was developed at Addenbrookes Hospital. It has been used to treat severe cases of Behcets Syndrome ( another type of Vasculitis ) and they are doing a clinical trial at the moment with Churg Strauss syndrome.
It's not for the faint hearted and tends to be used when all other treatments ( including Biologics ) have failed.
This is not a drug as such. The research is being done by the University of Southern California. It involves fasting for several days off and on over a period of six months or so. I am sure it is more complex than that, but basically the aim is to kill off the immune system so it regenerates itself. I think the result of a study was announced in June this year.
Campath (Alemtuzamab) is a biological and has been going for quite a while and I believe is being renamed to something beginning with Lem?? so they can charge more as far as I can see. I may be being cynical.
Piglet, the research article that you are referring to is really directed at cancer.
In the absence of a known/proven cause for PMR/GCA, I'm inclined to believe the cause really lies somewhere in the area of adrenal insufficiency with steroid hormones being disrupted. No doubt there will be many ongoing theories for a long time to come yet.
Is the following the research article you are referring to:
Chemo irreversibly destroys so many good cells in the body, which is why I refused it when I had Cancer. Still, I expect there are cases where there isn't any other option.
It sounds drastic, The mind boggles - how do they get to give you a new immune system from scratch - cells from healthy people ?!
I think they hope your own body will create a new immune system. Aghhhh!
You might be interested in Alessio Fasano's research lecture on the root cause of autoimmunity. Google it on you tube: It's not like Las Vegas.
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Thank you for replying - OK - I've had a look. No idea what my Zonulin levels are but I am not gluten intolerant; don't have problems with indigestion and never get tummy ache or any indication/s of digestive problems of any kind. My inner 'factory' is in good working order. Maybe because my only liquid is boiled water 24/7 - ever since I had Cancer 12 years ago.
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Me too. I have no digestive symptoms either, but my understanding is that inflammation is behind autoimmunity and digestive intolerances/gut biome imbalances are often silent but still active contributors to inflammation, as are bad oils, processed foods etc which you already avoid.
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