Went to Rheumy today, for 6 month routine appt.... I have had 3 flares in 4 months. ☹️ She specifically said she was not "recommending" a Chinese herb or supplement, called "Donlingcowpan" or Danghangcar... HOWEVER, several of her patients have had good luck, tapering off steroids using it and I may want to research it.
It's a natural product that works like Leflunomide, Azathioprine, and Methhotrexate, but does not negatively impact your immune system.
I cant find it, no matter how I try to spell it! Is anyone familiar with it?
Call her and get her to spell it. Otherwise do nothing until you have found out exactly what is in it.
I notice you have GCA and PMR since November 2017, which is not long in the great scheme of both.
Can I ask if you have been 'yo-yoing your dose' consistently, I ask because I noticed in a previous post you had come down to 17mg and then posted......................
Or are you following one of the plans please and also what other meds are you taking.
I cannot tell a lie... I do become a little over excited when tapering and probably haven't stayed on one dose long enough, before reducing again. 🤷🏻♀️
I have been... I admit it. I did so very well going from 20 to 15 in preparation for my knee replacement surgery and then 15 to 9 was a piece of cake! 9 didn't last too long before the "truck hit me," and I was up to 10, 11, 12, etc. etc. etc.
So you have never followed the no more than 10% at a time? Just did what you wanted, when you wanted?
I understand that, but you would be a whole heap better off sticking with a plan. There are quite a few on here, Dorset Lady's plan and DSNS by PMRpro.
I would also like to tell you a tale, yes it happened to me. I took glucosamine and chondinitron for many years. However a lady I knew told me she had joined Costco and she could get them much cheaper.............so I did. Then the FDA in the USA issued a statement, they were made in China and they could not guarantee the quality at all.
I learned a lesson and went back to buying European...........I had wondered why there were not helping my osteo as much as they had.
Now I am not saying it happens to all things made in China, it can and does happen with other countries. Just be absolutely sure if you decide to follow a route, ensure that route you are taking is safe.
All meds come with side effects, but pred is one of the oldest and we know all official 83 side effects. The 1 more we know, is 'Treacle Brain' or 'Steroid Brain Fog'. Named by patients who have discussed this over the past years.
I had GCA only and it took 5 years, with two major flares in the first two years.
Even in those days, the top guys always said, no more than 10% at a time.
Perhaps if we had met Ragnar earlier I would have not had those two flares and they would not have occurred. Yes, he was the first to try out a plan and passed it on when we met. So"Dead, Slow, Nearly Stop" and "Tortoise and Hare" where the first ones. Others have followed. The best thing is they can all be tweaked to suit the patient.
Sorry if I have upset you in anyway by this reply. I just worry when people with GCA start out on unknown tracks..............our sight is so precious.
No, no... I followed a plan! I did strictly follow the 10% rule, and I did very very well from 20mg down to 10mg... but I think I got a little cocky when I went to 9mg and I had a flare (July 2019). Then, I didn't stay on 12 mg (where I felt good again) long enough, before trying to go down again.
So the months of August and September I yo yo'd, up and down... Now I'm back on 18mg and will be here for awhile, before I reduce again. And I will be following the 10% rule again.
Thank you for sharing your story and you did not upset me in any way!!!! 👍🏻
...also my plan is to THROUGHLY investigate and research this herb/product before I ever start using. I will also go to a reputable, well known, Chinese herbalist in London.
The one thing I personally would be looking for at the very least is some research - 'scientific' contemporary info - that this not only 'works' at least as well if not 'better' (with no new additional 'side effects') than our much derided Pred. XX
It's in addition to our much derided Pred; it supposedly assists with tapering, like Leflunomide, Azathioprine, and Methhotrexate, but not to be used in place of.
But all most of us are saying is that there is absolutely no reliable evidence. Just a single anecdotal report - which really isn't a particularly scientific way of assessing something,
Donglingcao Pian - and a letter to the Editor from a group in Brighton. Sounds a reasonable answer to where the rheumy heard it.
But it says it has been identified to have anti-TNF properties - and the anti-TNFs are not recommended for PMR. Not sure of their potential role in GCA.
And to say it works like DMARDs and doesn't negatively impact the immune system seems something of a leap of faith to me.
The herb has about 6/7 different names which adds to the confusion of trying to work out what is actually being claimed. The woman who went against her doctors advice to up her pred and took the herb instead wouldnt be enough proof for me to take it instead. I wouldnt risk eye sight on a herb with so little evidence that it could achieve at least the same as pred can. Even if it comes from a reputable supplier doesnt mean it does the job you think it will.
A return of symptoms. It may be due to an increase in the underlying disease activity while you remained at the same dose of pred or it may be because you were reducing the dose and overshot the end point you are looking for: the lowest dose that manages the symptoms as well as the starting dose did. Either way, it is because you aren't taking enough pred.
You kind of have to judge your self yes. I know if things are not going as planned when my thigh pain kicks in or the heavy leg symptom comes back. It doesnt always mean a flare in me because skmetimes i get it when the pred seems so run out in my body a little before the next dose is due to kick in so i dont automatically start taking more pred.
Me too. I also think of the other constant ailments I have to see if one of those could be affecting me. Perhaps a couple of Tylenol will be the remedy.
Yes, I was down to 3.5mg for almost 2 weeks, and felt I was gradually adjusting to dose. Then I had 2 days and one night of high stress. I have tried to continue without increase in dosage, although great fatigue, but finally gave up this morning after calf cramping in both legs last night. I took 5mg. this morning and will see how it goes. I have a busy afternoon and early evening.
So , doing some intensive research , including Indian and Chinese sites , I can still only find the one case mentioned ,back in 2008 , of a patient putting down their decrease in ESR and CRP and Disease Activity to this herbal treatment by an expert Chinese Medicine Practitioner.
The study did note that they could not substantiate if there was any other steroid involved in the remedy used or the exact ingredients apart from Dongling CP.
They also noted that the Patient had been recommended to increase their dose but had been reluctant to do so preferring other routes.
They could not confirm wether the improvement was because of the medication , the continued use of steroids , something else, or the natural progression of the Disease itself.
No other evidence has been recognised for the use of this herbal drug and no other trials have been done or considered as far as I can see.
The remedy itself is more recognised for use in treating Tonsillitis , Bronchitis and in combination with other ingredients in the treatments of certain types of tumours and cancers eg Prostate . Although , again the efficacy of this treatment is also still under investigation .
I'm surprised that the Rheumy would suggest it on so little evidence , even if they have had patients of their own whom have had positive experiences of this remedy before offering more conventional support to you if you are struggling with tapering , like MTX or Leflunomide , or some CBT to help you cope with pacing your activities and tapering .
A.) My rheumatologist only suggested that I DO SOME RESEARCH, IF I was interested in learning more about it. She also handed me 3 brochures related to Leflunomide, Azathioprine, and Methhotrexate and said we'd talk more about these at my next visit, if I am unable to taper to 10 mg by that time.
B.) She said that she had a few patients who had tried it, and that they were experiencing very good results.
C.) She did not say or imply that there were ANY medical/scientific studies or trials to support the use of this product...
I happen to like the fact that my Rheumatologist is progressive and open to alternative treatments. I also like that she treats me like an intelligent adult and allows me to collaboratively take part in my treatment plan; as opposed to dictating to me what I must and must not do. She knows me well enough by now, to KNOW that (if I were interested in this ) I would research and investigate this to the nth degree... before doing anything.
I'm sorry, but I asked only if anyone knew how to spell it or was familiar with it. I did not mean to cause célèbre, and I am now concerned I'll be reprimanded for creating too much natter on the site.
Maybe you should have made it clear that you didn't want it discussed then. I think it has been a very interesting discussion - particularly since the guidelines DO mention Chinese herbal medicine at one point and they will have done due dilligence there first.
I'm sure nobody will think you have caused any " celebre" , a lot happens on the site every day and discussion is part of the healthy environment on this forum.
I'm sorry that you have taken my effort to investigate this and give you ,and others that may be following your post , some information on the herbal remedy you were posting about in quite a negative way , I was genuinely trying to be helpful.
You did not mention that your Rheumatologist had discussed more conventional treatments in your post , only the discussion about Chinese medicine , which is probably why I ,and others , have answered you as swiftly as we could in the hope that our research could be helpful to you. As we had read the research available on this item it clearly made us concerned and I personally wanted to help build awareness.
I'm glad you have such a collaborative relationship with your Rheumatologist , many people are not so lucky , and after you have done your own research I'm sure you can make your own decisions and the Rheumy will be happy to see your findings as well.
I am sorry if my response has caused you any upset and will refrain from commenting on your posts in the future.
The original post did not at any stage say that no discussion was to follow on this herb. Nor was it mentioned that other treatments were suggested. Your response along with every other reply on this post is perfectly reasonable and not something we as mods would consider as excessive "natter". It has been an interesting topic and i like you have been investigating this herbs use in pmr/gca so if nothing else it has given us a bit more knowledge to take forward.
Please dont stop responding to any topics you feel.able to help on because you have a lot of knowledge to give to others on the forum even if on this occasion no ones help.was required other than for a spelling query.
Hi Blearyeyed, You did cause me any upset at all.... nor did I take your comment in a negative way... I just wanted to be clear (to everyone) as to what my Rheumy did and did not suggest/recommend to me. I should have not put my comment under your comment, as it was not specifically meant as a reply to you... apologies.
' I'm sorry but....' The beginning of your reply does imply that it was meant for me rather than a general comment.
I would actually prefer that to be the case as I wouldn't want anyone else to feel as bad as I do now just for trying to pass on some helpful information.
Thank you for the apology , I don't think there is anything further to say really.
Ok... well, I have tried to explain and I apologised to you personally... I guess you're going to think/feel what you want, regardless of what I say. I have tried to clarify....
No not too much natter but like pmrpro has said you should have made it clear to everyone that you didnt require any help deciding whether to use this herb. I am.quite happy to stop.replies to this post as you dont require any futher help. Let me know.YBB
I have enjoyed this discussion. It always help others to live and learn. As far as I am concerned, none of the replies where obnoxious and they were all well meaning.
We found they were as well. We didnt realise that it was upsetting anyone by others giving their thoughts on herbs. We have all learnt things about herbs from this post.
Sorry probably should have put worried about the amount of natter on the subject rather than upset but we have all enjoyed the chance to discuss this subject and like i have said already we have learnt from it. YBB
I have just said you were NOT upset and that you were worried/concerned about the amount of natter and again i have already said we were not concerned with the amount of "natter". YBB
Hi Idyllic, our Rheumatology Pharmacist who came to talk to our support group on Monday specifically mentioned Chinese Herbs & said they should be avoided at all costs.
This post reminds me of a info in a newspaper with words to the effect, that someone who had GCA and lost their sight - it had been reversed'. We could not believe what we were reading and asked our Rheumatologists to check it all out. The news came from China. They checked it out and the person had never had GCA at all. They had some other problem.
Then later on, someone posted on another forum, that NZ had found a cure for PMR. We got in touch with the NZ health service and they were astounded, made many enquiries and it was just not true.
This all happened about 10 years ago..............so I am always wary.
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