I'm in the throes of my second heavy cold/cough since Christmas and feel very low-spirited as a result. A friend has advised me to take Sambucol, which is made from black elderberries, to give my immune system support. She says she hasn't succumbed to any virus since she started taking it. It was her daughter who teaches Year 2 who recommended it to her. As we know, teachers of young children are exposed to every bug going, but she has also been bug-free since starting it. I'm tempted to give it a try as I'm completely fed up of feeling so weak, achy and ill. However I wonder if it's wise given that my immune system is skewed and I'm taking prednisolone and methotrexate (though I'm skipping the MTX while unwell) According to the FAQs on the Sambucol website, ''No interactions between Black Elderberry and other medications were identified from the published worldwide literature'', but this isn't necessarily reassuring. I'd be grateful for any useful comments about this product.
Anybody tried Sambucol?: I'm in the throes of my... - PMRGCAuk
Anybody tried Sambucol?
I used to take it (the pastilles rather than the liquid) pre PMR but assumed I shouldn’t take it now with an immune system that has gone seriously awry. I’ll be interested to hear what the experts have to say about it.
I found that this time last year (on 8mg) I picked up colds and viruses constantly but this year (on 5mg) it’s been much better. That may just be chance I guess. I also work in a place where there are all sorts of bugs going around.
I suspect the lowering of pred may have a small effect afteralll it's. Not suppressing the immune system quite so. But I am not fully cognisant. I know that if I get a cold or flu I have to stop the steroid sparer so my immune system is allowed out to play for a little while and get those little bugs sorted.
Yes that’s what I thought, but equally I guess it could depend on just how many people happen to have snottered over me at work! 🤧😳😂
🤣😂🤣
Other people eh? ... Well, with all the news about coronavirus, we're learning what a liability they can be. The fact is I don't go to work and avoid the Tube (although I am a frequent bus traveller) On the whole, I don't experience situations where many people are gathered, so maybe it was the woman in front of me in the Tesco queue, one of the other two people in the cinema audience last Monday afternoon or the man who fetched my reserved book in the library. Who knows? We can't isolate ourselves completely.
Indeed we can't. Sometimes it's just bad luck I think, for example if someone happens to sneeze right at you there's not a lot you can do. I was in Edinburgh last week for work and the hotel had a notice in the bedroom saying they'd stepped up their hygiene awareness and level of cleaning in all the bedrooms because of the coronavirus and that masks were available at reception if you wanted one. I did wonder what they hadn’t been doing before!
I suppose it's always possible to do that little bit extra cleaning but, however hygienic the surroundings, people have to breathe! According to news reports, masks aren't necessarily that effective anyway. I've just remembered that last Monday morning, I went to hospital for my routine blood tests and the waiting room was very crowded - an ideal spot for picking up bugs.
You have a condition where the immune system is already over active. I am never totally convinced that such remedies work but just in case they do "improve" or "stenghten" immune system I don't touch them with a barge pole. I take pred and another immune suppressor so trying to build immune system up seems contradictory. Whatever you decide I hope you feel better soon. 🌻🤞
This was my first reaction, but I don't understand why, with an ''overactive'' immune system, rather than a sluggish one, I should be so prone to picking up viruses. The logic to me suggests that I should be less likely to do so. It's hard to get my head round all this when I'm so hopeless at science subjects - I remember once getting 4% in a Chemistry exam!
I wouldn’t blame your lack of science talent - I just think it’s a very hard condition to get your head around!
The overactive bit is directed at the wrong place - your body tissues rather than the real invaders.
Thank you PMRpro - it seems so obvious now. I certainly don't want to take anything that would do that...
Better than my 0% in physics... After 80% in Mocks.
My simple mind....
I just think my immune system is a pride of lions. They should feed on a cold or other bug. then rest until required, being essentially a bit lazy. . If my IS is overactive, they turn into bouncing set of tiggers and has no focus thatnthe environment gets out of control and they just keep bouncing. Until the immune system gives in. I take pred to wake up the lions and subdue the tiggers to try and balance it out.
It might not be strictly right but I like complex ideas rendered simple.
Excellent metaphor. I shall think of it like that in future.
0%? Not even one mark for spelling your name right?
No. The teacher was mad as I was always in the high 80s. I can't remember what happened.
webmd.com/cold-and-flu/news...
but
webmd.com/vitamins/ai/ingre...
has a warning under interactions.
Thank you. These are very useful. It does seem as if elderberry might be useful for relieving symptoms when they already exist, but probably not as a preventative. Having read that final comment on WebMD, I think I'll give it a miss:
"Autoimmune diseases such as multiple sclerosis (MS), lupus (systemic lupus erythematosus, SLE), rheumatoid arthritis (RA), or other conditions: Elderberry might cause the immune system to become more active, and this could increase the symptoms of autoimmune diseases. If you have one of these conditions, it's best to avoid using elderberry.''
I wonder if the same would apply to Echinacea?
It does - I meant to comment about that earlier.
Well wouldn’t eating a well balanced diet of fruits, veggies, etc, which is what the Dr’s want us to eat, providing us with vitamins and minerals which in turn boost up our immune systems.. our immune systems are out of order they need to be strengthened is what some believe...
I'm not sure strengthened is the right word - it suggests more activity. Moderated maybe? Regulated? There's another word I'm grasping for - it escapes me ...
the more healthy we are shouldn't it be a stronger immune system....I rarely catch colds or the flu, exercise regularly, eat well, yet this is the second time I've had PMR, I'm thinking thyroid induced...first time I was put on thyroid meds been on them ever since and now a second bout of Pmr 10 years apart..first time no one including a rheumy came up with PMR but it was exactly the same...every physical I've had Dr says I'm very healthy for my age (70 now)....something is causing it..this time it seemed to start with bursitis in a shoulder at least my first indication...over use...who knows...no one...heres an interesting link...
health.harvard.edu/staying-...
They point out it is a case of balance - some parts of the immune system work best on watchful waiting but then go wrong and dive in where they shouldn't and make you ill. It's semantics I suppose.
My younger grandson wants to go into medical research. I keep telling him to work at unlocking the secrets of the immune system for a guaranteed Nobel Prize.
Sambucol is lovely stuff and well worth a try in my opinion. I also sniff Boots Cold and flu defence to try and ward off colds. I respectfull ask friends and rellies not to visit until their colds are gone or until 10 days after the onset. It sounds mean, but it works.
As I've experienced colds every winter since starting pred, and so far three this season, I respectfully submit to those who say don't take things which stimulate the immune system that my immune system is far from overactive. I never or hardly ever got colds; years would go by, and I worked in a children's library! My immune system might have been deranged, not overactive, when I was in the throes of active PMR. Now I feel I could safely use a product which really can improve the immune system. If I get another cold this winter I will be doing so. It probably would not have been a good idea the first couple of years of PMR.
I can’t remember a year with no colds and always a sinus infection. Every year. This year not one. Could be the elderberry who knows. I also just had my vitamin D tested and it is 90 ng/ml. 4 years ago when I was first diagnosed it was in the teens. Could be vit D. I’m just thankful!!
I've recently upped my vitamin D intake though this is a shot in the dark as I've never had my level tested.
My rheumatologist has been testing it 2x a year. It is good for calcium absorption but I not sure about a definitive connection with autoimmune disease, I have not searched out reliable studies, maybe this week. There are many articles saying you need it but the level needed is up for debate.
Low vit D is closely associated with autoimmune disorders but it isn't clear if it is cause or effect. Some disorders are more common the further away from the equator you go - less vit D is common.
A study in Finland giving vit D supplements to newborns found that those supplemented has a far lower incidence of Type 1 diabetes as teenagers - which really does suggest some form of protective effect.
I've increased my daily supplement to 4000 iu in view of your post last week ''Vitamin D: why you probably need rather more than you are taking!'' and the subsequent discussion. I can't say I've noticed any improvement so far but early days...
I'm of the opinion that something like low vit D is likely to take some months to rectify - though I do know people who felt better in a few weeks.
My main interest in vitamin D is concern about my bones rather than the effect on the immune system. I have osteoporosis and don't want to take Allendronic Acid or similar.
Mmmm - but that will take even longer to have a significant effect.
I'm patient and being very careful about not falling. When I did fall on 30th August, I got a nasty flesh wound but no broken bone, which was in a way reassuring.
Though the link between low bone density and broken bones is a bit tenuous - most fractures occur in people with normal BMD!!!
Good to know. if the rheumy ever does try to scare me again, I'll quote you.
I use it through the winter months and have not had any GCA flares recently. Keep in mind I am down to 4 mg prednisone. I also have dried elderberries and make tea occasionally. f/m
I'm in two minds now. Well, I've emailed the manufacturers for their advice and will see how they respond.
I don’t really know. We are suppressing our immune system because it is attacking itself and then taking tonics and live yoghurts to build it up again. If you find out let us know.
I stopped using it as Elderberry could make a difference to Immunity triggers in Autoimmune conditions and in illnesses like RA , MS and more according to my research.
I wasn't sure how much doseage there was in Sambucol.
Elderberry can also reduce the efficiency of various drugs and Azathioprine, Prednisone and Methotrexate were on the list as far as I remember.
I did think about checking with the GP , but there are so many more things to ask about when I get there I always forget , so I just stuck to my multivitamin and mineral supplement and extra vitamin C .
Try Echinacea for a month. Meant to help colds and built immune system for when out and about. I always think of supermarket trollies which must be breeding grounds. And I shop every day!
Echinacea isn’t recommended with Pred healthline.com/health-news/...
‘Echinacea. Be cautious if you take this while on prednisone. Echinacea stimulates the immune system, while the steroid prednisone decreases the immune system, so they interfere with each other, Lakatos and Lakatos Shames said.’
Besides GCA and PMR I have Asthma which is well controlled. About 5 years ago I got speaking to an asthma nurse at the hospital and when I asked if there was one thing she does that is not a drug that helps. She said a Vitamin C and Zinc lozenge dissolved in a pint of water each day would help. Honestly this past five years has been the best for me and I never seem to get a serious cold or flu. If I get a tickle in my throat I put a teaspoon of Ginger purée from Tesco in my mouth and I’m back to normal.
Worth a try?
David xxxxx
Thanks David. I'll look out for the lozenges. I happen to have a jar of ginger purée in my fridge, so I'll put that to the test straightaway. I have a permanent throat tickle at present...
I got this response from Customer Services at Pharmacare Europe:
''Many thanks for your email regarding Sambucol.
We advised customers if you have an underlying medical conditions, always consult with your Doctor or Specialist as we are not medically trained before taking any Sambucol product.
Hope this has helped. Kindest regards.''
So very non-committal and some dodgy sentence construction. The balance of advice on the forum seems to be that it's best avoided and I think that's as trustworthy as anything my doctor or specialist is likely to say.
Yes - loved the sentence building!
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