thank you so much for all your advice on my potential implant, your knowlege has helped me inform my choice and to inform the dentist too.
A second question if I may. Last week i went to doctor who is a IFM certified Functional Medicine Practitioner. Has anyone had experience of taking folic acid every day for hair loss? I was doing so (after coming of Methotrexate) and this FM doctor said it inhibits the bodies ability to metholate? I am 12 months into GCA and down to 12 mg of pred (but experiencing temple pain at this level but trying to persevere).
The FM practitioner highlighted inflammatory food groups - soy, deadly night shade - as a vegan its a bit tricky - and I had full blood tests including thyroid (I have had thyroid issues in the past). She looked at my families past history of inflammatory disease and my whole health history. I felt happy that she really listened.
She also recommended B12 injection and I had one then but I think I had a reaction with hives on tummy, feeling nauseous, anxious and palpitations when I eat or drink.
I am making slow progress with bilateral tendinopithy and when I told her that is started in Dec when I was tappering down the steroids she said that the time of reduction is often a trigger for something like tendinitis to start.
Any shared experiences would be lovely. A year into GCA and I have had up and down times as we all do but staying positive and the support and help on here really helps.
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Fieldofdreams
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Nope! Not familiar with Functional Medical Practitioners. I had home made tomato soup last night and felt really good afterwards - tomatoes are a deadly nightshade aren’t they?
I only posted to say - please don’t persevere with a taper when you are experiencing original symptoms. In my experience, the symptoms worsen, and you risk a full blown flare. There is no merit in rushing off the very necessary Prednisalone. You won’t be in the clear for another year at the very least. Kind regards Jane.
Thank you so much Jane. I had an apt with my rheumy in Sept and he seems to think as my bloods are nearly normal that the GCA is not 'active' any more.... I was quite upset when I read this in the report he sent to my doctor.
My ESR goes from 6 to 12 at regular intervals and when I was diagnosed it was 19 (not so high).
But I have not been fully clear of temporal pain since diagnosis esp on one side. I get jaw claudation but he is trying to attribute it also to TMJ joint pain but I have had that for a very long time and know the difference. I was referred to the dental hospital to have TMJ checked again and they reported no change but def different symptoms/pain from GCA. I also had a CT scan and have degeneration of C4/5 (it was noted 5 years ago) where occasionally I have a bit of neck pain from an old dancers injury - again a very different symptom.
I read on this forum that we have to listen to our symptoms not just rely on bloods.
When I was first being diagnosed as my ESR wasnt too bad they did a temporal ultra sound and saw quite a lot of halloing on both sides and in arm pit. So given confidence by the forum I rang his secretary and asked if I could have a repeat of the ultra sound to see if there is still inflammation. I am not confident to keep tapering (he wanted me to get to 10 or below by Dec) if it is still active, which I think it most def is.
thank you so much for your kind help. Warm wishes FOD
I think you need a second opinion. If you are recognising all these GCA symptoms in yourself, it must be a real worry. Of course your bloods won’t show much inflammation when you are taking Pred.
I hope he agrees to a repeat temporal ultra- sound. Nobody wants to have GCA but it is desperately worrying to have these horrible symptoms and no firm diagnosis.
My rheumy diagnosed GCA last year but now you have said what you have I wonder what I understand by 'active'?. Does it mean I am free of GCA or its just being managed by Pred? So sorry for my confusion. All best wishes
If you are still experiencing GCA symptoms, and it is GCA, then the chances are that you are under dosing on Pred and Symptoms are breaking through. As you know, Pred deals with the, pain and stiffness and most importantly the dangerous inflammation . The disease rumbles on underneath. If you reduce Pred in these circumstances the inflammation will increase. Our main guide is the symptoms. GCA does tend to last 2 years or more but can hopefully be managed on lower doses, if symptoms begin to return, you have to stop tapering. The aim is to find the lowest possible dose to manage this. Going down too fast can miss this point and often leads to a flare up of the disease. I hope this makes sense.
Hi Jane, many thanks for this. Yes this all makes sense and I have PMRpro's tapering link. I did notice a difference when I went from 13 to 12... I hope i get an appointment this week for ultrasound again. I asked my GP if I could get a second opinion but she said it would only be the same!
I am on my second Rheumatologist, she could not be more different. The first one wanted to dismiss me with Fibromyalgia. Have you got enough to return to 13 mgs.? Do not allow yourself to be dismissed. Good luck!
Not deadly nightshade! That's specifically belladonna and was used to make your eyes look lustrous, by dilating the pupils l believe, hence "beautiful woman" (the things women do). Nowadays it's still used as a medicine for certain conditions. Sorry, I guess that's a bit nerdy, but I couldn't resist.
I was interested just now to learn that as well as tomato, pepper, eggplant and potato, tobacco and petunias are also members of the nightshade family, as well as things I don't know at all (Jimson weed?). Around here there is a not unattractive weed, common nightshade, which we mistakenly called deadly nightshade when I was growing up.
Further research and even common nightshade is the wrong name for our local (although introduced) weed. It must actually be something called bittersweet nightshade as it has purple flowers.
Gosh, thank you so much HeronNS. All my favourite foods - I eat tomatoes daily, aubergine (egg plant) is my ultimate binge, peppers I eat like an apple but thank fully can leave potatoes although I was having a couple of jacket potatoes a week.- thank goodness avocado is okay otherwise I would seriously whither away
I have tried omitting a lot of things at one time or another - including the nightshade vegetables. It didn't make the slightest difference except to make my diet very very boring! I eat above-ground vegetables like there's no tomorrow - and the nightshades provide a lot of the colour!
I haven’t edited it to teach myself a lesson. 🤦♀️
Hi Fieldofdreams
Like Jane l don’t know anything about Functional Medicine but it has been discussed on here before.....
I can answer you about the Folic Acid, l lost my hair through Chemo & it has never grown back properly, l too have been & am again on Methotrexate but it was stopped last year due to Liver Issues but l carried on with the Folic Acid l had left, it was the biggest improvement in 3’n’half years....
Let us know how you get on & l’ll see if l can find a link to the Functional Medicine.
Thank you so much Mrs Nails, i will let you know how I get on. I am so sorry that your hair hasn't grown back properly and that you have had such a lot to go through. Wishing you a lovely evening and huge thanks. FOD
Hi FOD, first I hope you don't have another b12 injection... That's a proper allergic reaction and it may be worse if it happens again. I don't think that's a good start, especially if it wasn't established if you needed b12.
I have read a few, largely negative, overviews of FM. But i think there's something to be said for having someone who listens to you. I would however expect Dr's and nurses (and indeed this forum) to discuss diet and nutrition and exercise and basic health issues. It is not something I would try so I hope you get some replies that are more specific. I don't want to make anyone feel less than positive so have chosen not to link to the article I last read. Just bear in mind you can get all blood tests from your dr. Mine do a full panel for me 4 times a year because of dmard, 3 times a year for diabetes, and once a year for pmr/pred and hypothyroidism. I have blood pressure, weight etc done several times a year too. I don't know where you are so the system may be different.
If it makes you feel better to discuss your health with a FM then you should, but at least ensure you need any treatments they prescribe. Good luck. 🌻🤞
yes. they were low (I am vegan) and I had been taking B12 supplements. But reluctant to have any more. I heard that they are some kind of 'pick me up' and was told good for 'foggy brain' and my memory since being on Pred is shocking, but it made me feel dreadful with an allergic reaction. ...
Have you taken sublingual b12? I was vegan for 8yrs and veggie for last 22, who ate eggs periodically. I have been on metformin for 18yrs which can deplete b12 and have a family history of pernicious anemia so I keep a check on it. I make sure I take yeast extract most days with the view that some might get processed. It is seen as a vitamin that might be hard to take up from food as you know but it seems to be okay so far.
I would find it scary to have a reaction like that too. My sister has mastocytosis and has had 2 or 3 anaphalatic shocks from Bee stings having had little or no reaction previously. I hope its all settled now.
I haven't taken sublingual vitb12 I used to take it in tablet form.
Gosh, taking metaformin ( I just looked it up) is not a picnic is it - thats tough poopadoop. I am going to leave the b12 injections alone and stick to tablets. The injection was a much higher does but it made me feel unwell for a couple of days. Not anaphalatic but enough to know it was a definite reaction. I became allergic to orange juice about 8 years ago for no apparent reason and each time I had a reaction - until I identified what it was - it got worse so once bitten twice shy.
My mum became sensitive to nuts after decades of eating them with no problems. I can never understand why our bodies feel the need to suddenly throw a wobbly after years of no allergies!!
I bet. Its not nice. I have allergies to elastoplast and nickel which are very common.... Of course once a/I system goes wacky you never know what's going wrong next.
Years ago when I was vegan I researched b12... Without the Internet so books were involved(!) I found out somewhere that sublingual vegan b12 pills were supposed to be the closest to having injections. I used to literally pop it under my tongue and it dispersed no problems at all. When I went veggie I stopped and it was quite expensive then. The evidence for it working was pretty murky and still is.
Hello FoD - I've never heard of functional medicine before, which surprised me as I have a keen interest in complementary medicine. I don't have anything constructive to comment on your post, except to say as a fellow vegan, perhaps try eliminating deadly nightshade from your diet first and see how it goes, before eliminating soy as well. Oh, and Engevita Yeast Flakes with B12 are amazing! Add them to sauces and dressings - anything that calls for a 'cheesy' flavour.
It sounds as though you should stop reducing pred if you're experiencing temple pain again - persevering doesn't work with this PMR/GCA mallarkey! You have to go with the flow - and if you're experiencing pain again, maybe look into increasing your pred until the pain subsides.
All the best. x
Moderator Note - NOT "deadly" nightshade, nightshades: i.e. vegetables such as white potatoes, tomatoes, eggplant (aubergine), bell peppers, cayenne pepper, paprika.
thank you MhairiP, I got it wrong with the deadly nightshade... think they are poisonous Thank you for your advice. Yes, I used to have Engevita and enjoyed its cheesy taste and will be going out to buy some today! Yes reduction will be moderated. I have never been completely temple pain free and think I need more than 12 mg that I am on at the moment... I have contacted the specialist nurse who is sending a note to my rheumy to ask for ultra sound to show haloing or not - it was how rheumy confirmed on diagnosis as well as physical symptoms, pain, jaw claudation, enlarged arteries, identified last time. FOD x
Hello, just wanted to add from my experience that may be useful to you that my vit B levels were very low despite taking high spectrum vit b regularly for years. After a bit of research I now use methyfolate which seems to work better for me. Some people have absorption issues and need a different form of B it explains it on thus link here: dietvsdisease.org/l-methylf...
Im also vegetarian and have a problem with night shades and gluten due to the histamine levels but its all trial and practice!
Hi Kellthebell, thank you so much. The Functional Medicine practitioner said exactly the same thing to me that methyfolate may be better for me and she is checking my hisgtamine levels re gluten. Thank you for sharing this as it makes a bit more sense now. All best. FOD
It's my constant battle to remember this, as histamine issues make everything just a little more complicated for me and not many people know it and it could hold back thier progress too. Im glad you are finding answers!
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