I'm posting this because it addresses something that has been discussed before - patients believing they have found a miracle supplement that is "steroid-free" and relieves their pain.
Supplements do not have to conform to the strict monitoring and declarations that medications do. If they did declare the ingredients some of them would be subject to the stricter controls. Sometimes that magic potion your friend recommended or you found on holiday or you sourced online is simply downright dangerous because you don't really know what is in it and how it could react with your medication. Be careful!
I'm home - but have developed an aversion to Frankfurt airport, all due to one very nasty bit stuff, Luckily everyone else did their job well. And it has rained for the last 24 hours, not the snow that was forecast but the temp has dropped now so it can all freeze!
I used to go through Frankfurt airport quite a bit on business. Very thorough search staff!! Sorry you didn’t have an easy journey. It’s snow here in Northumberland & Durham area, friends tell me. But not snow ‘proper’, just British couple of inches! Watch out for ice, please!! Here, along the coast from DL…frost & mist, but foggy from 9am, & that thickened after lunch instead of giving way to sun as was forecast!! Lots of rain (eg 1 inch due on Monday night) next week! Glad you’re safely home, S x
They were lovely - I'd transferred a bag of medication from my checked bag to my handluggage without noticing there was a small scissors in it and they found it at Manchester! They said it was OK and left it in but at Frankfurt I told them in advance and they approved it too but they laughed at me! It was the LH creature who was supposed to rebook my flight since it was Lufthansa's fault. She practically accused me of not being in need of assistance and occupying a seat I shouldn't. She actually shouted at me in a really nasty tone that I'd been called ages before - I hadn't been called as such like all the others, the number had appeared on a screen which could only be seen from the ordinary queue, was several yards away and I couldn't see the screen at the angle I was at. I'd only done as I was told - so she blamed them as well. It really upset me so I said something I shouldn't have and she threatened to bump me from the flight. I was taken to the gate and left there alone for 2 hours - no toilet close, a cafe with leftovers for the day, dinner was a large piece of very nice cheesecake but that was all I'd had all day. And by the time I got to the hotel they were long closed and had left a key taped to the door. I wasn't a happy bunny at Frankfurt ...
We had got up in Whitby to snow and 2 of 4 roads out closed with ice and jackknifed lorries.It was decidedly hairy as far as Guisborough in the dark. Then it improved slowly.
Oh, that’s truly appalling. Hope you will be informing those who run the service. I’m so sorry you had this awful experience. I asked about scissors at Heathrow, & it seemed to ge OK, but only a certain (small) length. Can’t believe she threatened to bump you from the flight, I’ve never heard of that happening ‘for real’! Two miserable hours. Plus a closed hotel. And timed just wrong for Yorkshire, too…oh dear, not the sort of trip I wished for you at all. I have a lanyard that said ‘verified disability’. I had to pay small amount & produce documentation. But because I look well (so people say!) they shoved David in the wheelchair on our way home from Italy & I was left trying to catch up! I was quite well after two weeks in Italy, but then sick for 3 days back in the UK, after trying to run behind a 6ft guy pushing David, & telling him off for trying to get out of the wheelchair!! Ah well, settle back home now. I assume you’re staying there for Christmas & New Year! They’ve had huge snow dumps in Switzerland, season starting early! That’s just horrible. I’m so sorry, sending you a big hug! S x
The rest were fine but it was a bit chaotic even by their standards because the morning delays were catching up. She was LH staff and the assistance people say they have had trouble with her. They also said normally I could have complained to the supervisor. Guess who was supervisor! I think though that she'd gone off duty before I left that corner - and it was a man, I was so upset it didn't register.
The dumps this weekend have introduced a new problem - avalanche risk! Our season started last week. Lord knows why anyone wanted to be up there today in the rain! And tomorrow it will be sheet ice after the rain and already below -12C up there!!
Yes…I can see the avalanche problem. Strange weather. Can’t believe it’s raining where you are. Bizarre. Awful skiing conditions. And that ‘flat white’ look when you can’t see the ground in front of your skis! Remember that well! And skiing in slush…but that was spring! Can’t believe she was a supervisor! That’s the word my brain fog was searching for earlier. Rest easy…& hope there’s no flare, S xx
Hi from sunny (hot) Florida. At least they let you keep your scissor. Here in the US, it would have been taken away immediately. I must say you were treated very poorly by the airlines. But your flight was not canceled, again here in the US your flight would have been canceled and getting on next flight would be a problem as well. Do hope you enjoyed your vacation. It’s been a little difficult here. My significant other of 20 years has developed C HF as well as Afib. I am his primary caretaker with steroid myopathy neuropathy and the ever present GCA. . have a wonderful Christmas and New Year. ❤️
Wasn't that bothered - it's a rubbish scissors anyway though it does do what I need it to!!! I said that to them. European law about responsibility for onward journeys is quite good. I wasn't too bothered - but the woman was just horrible and I have no idea why she was like it at the start or when accusing me of being in a seat I shouldn't have been. Had I been diabetic or coeliac it would have been a whole other story about food though.
You have my sympathy re your SO - being a carer is hard enough anyway.
Had the UK weather been a bit less British it would have been quite a fun break!!!!
😒😬🤨. Sorry to hear about your lousy experience at Frankfurt. I learned to be very po faced at airports in Germany when I did a project over there for work. They seemed to view a smile with huge suspicion. I'm just back from a visit to my daughter in the US and got pulled over for a security check. The staff at Heathrow were lovely and the 'pat down' the best massage I've had for a long time 😀
The border control are like that - security are often nice and helpful if you are nice to them. Speaking German does help though and so does turning up in a wheelchair ...
In fact, all airport staff were fine, it was the Luftwaffe woman who wasn't
Earlier in my working life, yes I'm still at it-sort of, I did a lot of international travel. I only "lost" my luggage 5 times but each time it ended up in Frankfurt, regardless of where I was traveling to/from an to this day I've never been there.
In terms of the airport you didn't miss anything at all! To be fair to them - it was a short connection really both ways but in the way to Manchester both I and my luggage made it, much to my surprise! And coming back, my suitcase got to Innsbruck the same time I did. I did notice that it had a priority label on it!
Lost our stuff once - it didn't even make it from the tarmac to the plane leaving Newcastle for Heathrow. It arrived in HongKong just as we were checking out of the hotel to continue to Australia so we picked it up in passing. It was a rather WARM weekend in jeans ...
I will be doing any future trips to the UK in the camper - can take food or stop to buy some at a supermarket/restaurant, make a cup of tea when I want it, no suitcase to lug around and if I am held up can stop and sleep in my own bed.
Flying is fine from B to C - every extra stage doubles the agony! We wanted to come back using the direct train from York to save my daughter driving me over to Manchester but couldn't get info as to how to get across the bridge from the station to the airport since the moving walkways haven't worked for over 4 years! One idiot told me I'd have to come to the airport to find that out!! I now know but I walked a fair way having been dropped at the drop-off point, She couldn't come with me, couldn't leave the car and I didn't have a blue badge to use the special area. Once I found the assistance point it was fine and Manchester is well organised - there is a central waiting area airside which is manned all the time, if he had to leave even for a few minutes he told us. So if you needed to go to the loo or to get food, someone took you if that was required. Frankfurt I was just dumped for 2 hours at the far end gate of a terminal area. No airport staff of any sort to be seen. And when anyone was asked if they did appear - "not me mate".
I notice on the jars that you’re advised to consult the GP before taking any. I’m a bit random with them, but think I must be lacking vitamins/ minerals in some areas. Haven’t felt too well and everything seems an effort. I still feel unsure about latest bp medication and no longer know if I have the side effects from them or if it’s my general condition!
Anyone notice how it can take weeks to get a doctor appointment? Anyone notice how we get prompt answers on this site? Way-y more supportive than most doctors. Forum members, who are actually living the experiences of their condition, often have more to offer. (I know...we do need doctors; they have the power of the prescription pad.)
This site, all the members, the contributors and even those who prefer to just read are worth more than a whole hospital of rheumatologists in my humble lay opinion. Here’s the question, we know a gaggle of geese, a herd of cows, a flock of sheep ….. what is a group of rheumatologists known as…., keep it clean please 😉
Appreciate your comments DL. Yes I think I will do so whilst my other health conditions are hopefully sorted. A bit worrying, but many are in the same boat!
Depends what they are - the article is actually referring to the magical mixes sold to relieve rheumatological problems - which turn out to contain steroids without declaring them. If you read the article, it does say that reputable brands bought via a pharmacy are likely to be safe.
I’m not taking steroids now, but blood pressure tablets. I still have all the body aches and pains which could be due to the other conditions I have of course. I bought Vitamin D &K2NIK-7, which I take when I remember, Vit B6, selenium, zinc citrate, calcium citrate. Haven’t tried them but know I should wait until I get an opportunity to speak to a pharmacist. I worry as I’m vegetarian/vegan, and wonder if it accounts for my lack of energy?
It is possible to check the blood levels of most of them. Why B6 and not B12? Vegans and vegetarians are often deficient in B12 - wonderful stuff Marmite!
Marmite is the go-to source of B12 for vegans - a friend was beside herself when Brexit loomed and manufacture of Marmite was moved to The Netherlands!
I started taking Vitamin B6 years ago as it's supposed to help with osteoarthritis. I stopped taking it for a while as an experiment and did notice a difference. Think this was long before PMR diagnosis though. Now I take a balanced B supplement. My husband needs to take B12 and I make sure he also takes the balanced B every second day.
There aren't too many vitamins and essential minerals which are contraindicated. The only one I can think of is Vitamin K1 and warfarin (with caution advised for K2) although no doubt rarely there may be others.
I too am vegetarian but I don't think my current lack of energy can be caused by that as I was vegetarian for many years before PMR struck and it's really only been lately that I've suffered ongoing fatigue (apart from brief stint around 4 mg pred several years ago). I'm blaming it on age and also a "tired heart" as my doctor put it.
We’ve been vegetarian for nearly 40 years and recently started taking B12 prompted by my tiredness and lack of energy. Not seen any result yet and two days of 60mg pred has me zinging anyway
Yes, that pred would have an effect! I should ask my husband if he thinks he notices any difference taking the B12. He's been on it for several years. His D also runs low.
My B12 has been checked a couple of times since PMR struck and it's normal. Ran a somewhat high D level for a while, due probably to non-symptomatic sarcoidosis, so reduced my supplement amount and seems okay now. I think my iron is usually low, and that might explain what's going on now, but as I last took some when I was in the midst of a gum graft and recovery from couldn't brush my teeth adequately, my teeth got badly stained and I really don't wan't to make it worse before next professional cleaning and final dental work related to the implant I also had this past summer. It's embarrassing enough! Thank goodness for masks
I'm in Nova Scotia. My doctor orders them. The only ones I've ever asked for are Vitamin D and iron, but my current GP has checked B12, sodium and calcium and maybe others, presumably because he thought the information could be useful. 🤷
If you are taking medications like steroids , PPIs. Antacids, thyroid medication and various other medications you should have you vitamin and minerals checked and can request to have these done every 6 months ideally ( 12 months for Vitamin D ) by your GP according to NICE guidelines. If you haven't had these checked in over a year after beginning steroids you should definitely request them because you do need a baseline of results to help you make healthy food choices , or see if a supplement is required. Many medications are vital but can affect how well we absorb nutrients from our food , particularly B vitamins and iron and Vitamin D.If you also have digestive , liver or kidney conditions it is also important to have these checks done , just as they should check your full blood count and liver function because these types of conditions also affect how well you absorb nutrients from your food .
If you are aged over 60 , or Over 50 with a family history of Vitamin B 12 or Anaemia issues it is also important to have these tests done even if you are not on medications or currently have a long term health issue.
It's an important preventative step in your health care because if your levels of nutrients , particularly Vitamin B12 and Folates ,become too low or deficient they can cause a lot of additional symptoms including Fatigue, Neurological Pain and Anaemia and can begin to affect how well we absorb our medications and other nutrients like Iron, Vitamin D and Vitamin C.
Tests to ask for , at a minimum on an annual basis on the NHS are Full Blood Count, Liver Function. Kidney function ( electrolytes ), Vitamin B 12 , Ferritin/ Iron, Folate and Vitamin D , you can request Magnesium but some GPs will refuse this unless an electrolyte problem is seen in the initial tests.
If a GP refuses you these tests while you are on medications , or have certain health issues , you can request to know the medical reason why and it's worth reminding them of the Nice guidelines when you initially request the tests.
Thank you that’s really helpful. I had blood count kidney and liver ones done a couple of weeks ago. I will ask for the actual results and also see if they did anything else. I like to keep my own records but I think many doctors don’t want to push actual results on everyone. I will certainly get the vitamin ones checked once I’m passed this initial priority.
GP should be able to check them in line with Blearyeyed's reply. They should be doing them anyway when on pred but needless to say they don't. Just give them a poke - depends on how your practice regards blood tests ...
I’m having blood tests on Friday and hopefully the snow will have gone, asI live on top of a hill and cars are skidding down the road! I hope when I get the results back I can question them further about my vitamins. I feel so tired all the time, headaches and my upper back is achy and painful. Am having a one to one exercise class for balance as it probably played a part in my falls.
Good idea to work on improving balance. If you feel up to it at some point you could consider learning a bit of Tai Chi. I think it has really helped me and as you probably know it's promoted as a safe and effective movement for seniors. Lots of good instructional material on YouTube if no classes convenient for you. If interested I can sent you some links through Chat.
Heron, I just realised that Ihadn’t seen your reply to me! Don’t know whether I’m coming or going at the moment. I would appreciate the you tube material if you could send me some links when you got chance. Thankyou!
First one is a view which is easier to follow because you just copy what the person is doing, rather than dealing with having to pay attention to left and right:
Now, how to learn? Apart from classes, I learned mostly from a pirated version of YouTube videos with Chris Pei. I believe shorter, genuine videos are now more available. At the time I would have had to buy a DVD via Amazon! However there are also videos by Ian Sinclair, who has a video for each move of 24-form Tai Chi. I used a few of these when I was getting back into Tai Chi after a longish gap when I was moving followed by the first year of pandemic when I hurt my knees.
and you should be able to find his individual videos quite easily.
The secret, like with yoga, is to do the moves as accurately as you can but NEVER force yourself into a position which hurts or is difficult. For example, when I restarted (a couple of years ago now) there is a move where you "kick" and I was only able to raise my foot a little bit off the floor. Now I can actually raise my foot quite far, leg just about horizontal to the ground, which for me is rather good!
One other tip, after you learn the moves and as you learn to move from one position to the next is is good to go as slowly and smoothly as you can, spending very little time without being in motion. It should take about six minutes, more or less, to do the whole set once you've mastered the moves. I do three sets a day, using the three first videos I link to above, and it takes me a little under 18 minutes. I think the first one has the most authentic timing, but I like the middle one because they do some of the harder exercises a little faster
Take your time learning. I was literally all left feet for ages, and then it clicked!
Thankyou Heron for taking the time to send these. I will report on my efforts as have never tried it. Have hospital procedure this week, GP consultations and a trip to the solicitors, so it is one of those weeks! Will let you know how I get on and many thanks again.
Just take your time. The instructor didn't do much more than the first two opening moves the first day, and then we had a week to practice at home. He moved slowly all the way through. I took the series of classes several times and had really just begun to master the whole sequence and consider moving to the next level (100 moves!) when the instructor had to have an operation for a benign brain tumour, which affected his balance so much he couldn't go back to teaching right away, and probably about the time he was on the road to recovery the pandemic struck. So it's doubtful I'll go any further in learning, but there is always room for improvement. You may well find that just doing the first move a few times (raising and lowering arms) is relaxing and a good enough beginning until you've recovered from your upcoming medical and other adventures. Look on it as a way to relax, and allow healing energy in, not as a task to master!
From what you have written you don't appear to be taking any supplements that would cause an issue with your blood pressure medication.The one thing you need to be careful with is Magnesium and also over the counter products containing Magnesium like Antacids with blood pressure medications or if you have Hypotension or Bradycardia because of the additional effect this has on heart rate , it can cause you blood pressure to drop to low , especially at night.
If you use Magnesium to help with neuropathy it can still be used safely topically as a lotion or spray. Or low doses can be taken a number of hours after BP medications and not too late in the evening.
Vitamin K1 is also better avoided.
It's why it's important to check what vitamins and minerals are included in a combined vitamin supplement and when you should take it if you are on any medications.
B12 and Folates are important, especially for vegetarians and vegans.
If you are experiencing symptoms since starting a new BP medication do go and get it reviewed by the GP , they can do this in a phone appointment.
Thanks for your suggestions and comments. I have had phone appointments regarding blood pressure medication, changing it three times recently. It can be difficult when you speak to a different doctor each time as has been the case. I did have a face to face this week, and after doing tests, I was contacted with results. I now have a hospital referral within the next two weeks, unrelated to what I went in for!
I have recently emptied my medical cupboard of all "magical" supplements and taken them to the pharmacy for disposal. I am am on enough prescribed essential tablets without extras! Sanatogen Complete seems to include the basics, so I'll stick with that. My pharmacist sister has always been sceptical about any "alternative" pills and potions as they aren't necessarily sufficiently tested and could also react unfavourably with prescribed medications.
What do you mean by English pills?All prescribed medications for each different health condition across the world have similar active ingredients , and it is those active ingredients that can interact or aren't absorbed properly when they are taken at the same time as certain supplements and in some cases foods.
The best thing to do is to double check interactions for your prescribed drugs against any supplement or foods before you begin them against the information on a recommended online drug check list , as well as checking with the GP.
Although the article relates to specific supplements from the US , the truth is that all supplements and certain foods , including simple vitamin complexes should be checked for ingredients that can interact with your prescribed medications , not just the miracle solutions.
Kalms , for example , can cause people bad side effects if they take certain BP medications and pain relievers. That can also happen if you take Magnesium. Ginger , Turmeric and Coenzyme Q10 should also be avoided in supplement form if taking blood thinners . Garlic supplements shouldn't be taken with aspirin or anticoagulants either. Even certain blends of Night time tea from good brands like Twinnings need to be checked if you take certain medications because the passion flower can then cause nausea and low heart rate, I was caught out when they changed the blend with this.
Half of the products on the shelves of Holland and Barrett and are regularly recommended in a off hand way as being safer , or better than prescribed medications because they are made from natural ingredients should still be double checked against the medications you take and whether they can cause side effects or flares for your health conditions too.
Just like the humble Grapefruit or caffeine , the supplements are still chemicals even if they are organic ones , and can cause as many side effects or problems for individual patients as any prescribed medication can.
Basically, it's important to check any ingredients in health or herbal supplements, on a recommended drug checker online , as well as checking with a GP or Pharmacist because often they don't realise that certain ingredients can interact with your medications as well.
Bottom line is that if it is claimed to be effective at doing something a drug can also do - there must be SOMETHING causing that effect. After all - deadly nightshade is "natural" too.
Personally I don't know ANY pills relating to this - but I also would never buy any supplement that promised miracles off the internet or other dodgy sources. All supplements and medications should be checked against your prescribed medications - your pharmacist will do that for you, the PHARMACIST not the counter staff.
I thought so. Seems usa orientated but we don’t take anything without checking contents first. My husband takes lots of medication so do google checks or ask pharmacist.
YOU may not - but many do. And even stuff handed out by alternative practitioners can be very dodgy. If you read the article - the problem was the OMISSION on the ingredients lists so you can read the contents but if they have omitted such substances, you are none the wiser.
Yes , omissions , that's also particularly important when people go to a traditional or herbal medicine practitioner when the ingredients often have names that aren't instantly recognisable in the West.It even happens with our prescribed medications when relating to the "packer" used in the pills. I found this problem when the GP began to get the branded version of my HRT but at a cheaper cost by buying in the European version. I can't process the packer so I wasn't getting the medication either.
This happens quite a lot for people with food intolerance or digestive problems.
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or beef stock. 
Information required about PMR
INFORMATION ABOUT ADCAL D3 tablets.
How about some good news~!!!
Rheumy's concern about infection?
