Functional medicine

Hi All, my second post in 24hrs - sorry - but lots of questions as just recently diagnosed with Sjorgen's and likely PMR. I've been on steroids about 5 weeks and finding them quite tricky - a rollercoaster ride with no easy exit! Just reading about Functional Medicine and testing for root cause of inflammation - viral/ bacterial infections; food sensitivities; toxicity etc. & wondered if anyone had any experience of this? Would be grateful for any feedback. Thank you.

[PMRpro Ambassador]

Hi - no limit on questions here!!!

I may be classed a sceptic but most of these so-called testing regimes are a way to transfer money from the patient's bank account to that of the provider.

The inflammation in PMR/GCA, like all autoimmune disorders, is due to a malfunction of the immune system whereby it us unable to recognise body as self and so attacks it in error. No-one knows what it is that triggers the immune system to go haywire. It is accepted that it is an accumulation of insults to the immune system over life and finally something is the straw that break the camel's back but there is no single entity to be blamed. Some say it happened after a vaccination, others after an illness, yet others after prolonged stress which can be physical or mental. Covid is known to cause a PMR-like condition - but so can statins and other drugs. Any of them must be in association with a genetic predilection for this to happen. There is no simple answer. And anyway, once the triggering has occured, the only cure is time,

[Gimme in reply to PMRpro]

Coming from a professional background that involved a fair bit of work with functional foods/medicines, I share Pro's cynicism. There is very little in the way of hard evidence to support the effectiveness of the products that those kind of companies are trying to sell. There are one or two exceptions, e.g. the margarine that claims to lower cholesterol is supported by clinical trials, pred brain has made me forget the product name.

Some of us do dabble with an anti inflammatory diet. Again, I view that aspect with a degree of cynicism, since there are plenty of unscrupulous companies who are happy to relieve vulnerable sick people of the hard earned cash, knowing full well that many of us would like to give up the medicines and seek a more natural cure. Personally, I do think that some foods can worsen your symptoms if you happen to have a sensitivity to certain foods, but as Pro says, I very much doubt that it has any effect on the underlying autoimmune illness that is causing the inflammation and the PMR symptoms.

As I have said before on here, there is nothing wrong with eating for good health to help you to recover from this horrible illness and exercise, within your capabilities and without overdoing it, is known to have an anti inflammatory effect. I find swimming helpful and I feel the benefits if I can keep moving. Be wary of some anti inflammatory diets as there are a lot of cranky diets out there and online companies who want to part you with your cash. It works for me to avoid added sugar, limit alcohol, white starchy carbs and saturated fats, avoid processed foods, especially processed meats containing additives, include plenty of green leafy veg, and some other foods that are known to have an anti inflammatory effect, such as walnuts, oily fish, olive oil and the like. Also, vitamin D is considered to have some anti inflammatory effects, which you should be taking anyway, if you are on pred. Many PMR patients are anaemic, so your diet should include healthy levels of iron, the B vitamins (especially folate and B6) and Vitamin C for absorption of iron.

Overall, there is nothing special about my diet, it is just a balanced healthy diet, so I know it is not doing me any harm, at least. I have identified a couple of things that make me worse, I certainly suffer next day if I binge on sugar and/or salty high carb snacks, and I suspect the additives in the latter. But I do have some dietary issues, for example wheat does give me PMR like symptoms in addition to the GI symptoms. So, although I seem to be quite sensitive to those things, it might be something else for someone else. You can probably work it out for yourself by keeping a food diary for a few weeks, if that applies.

[Hidden in reply to Gimme]

Thank you. I was really interested to read your message. I am taking vitamin D3 but this predates prednisolone and no one mentioned that I should be taking it with prednisolone. I wonder what dosage is good? I am on 2000iu daily. I follow a fairly healthy diet. I've given up alcohol because it didn't agree with me and I don't feel good if I overdo the salt - say tortilla chips etc. I do keep reading about 'leaky gut' in relation to PMR though - hence my question about Functional medicine.

[PMRpro Ambassador in reply to Hidden]

I take 4000 IU because with less my blood vit D level slowly creeps down/

[Hidden in reply to PMRpro]

I think I will ask to have mine checked again as I originally started D3 because it came back as low.

[PMRpro Ambassador in reply to Hidden]

Did you start with a loading course of high dose vit D? That is what GPs should do ...

[Hidden in reply to PMRpro]

No, the nurse at my GP practice just said I should take a supplement (nothing prescribed) but when I asked to have it rechecked, after being on a supplement for a few months, I was told that they wouldn't routinely check it. This was prior to PMR diagnosis so will push again for test.

[PMRpro Ambassador in reply to Hidden]

Tut tut! If it was low enough for them to say something, high dose vit D should have been prescribed for 8 weeks and rechecked to see if it has resolved. No point otherwise.

[Gimme in reply to Hidden]

Like Pro, I also take 4000 IU Vit D. I do remember seeing some small studies in women with PMR suggesting that Vit D supplementation could reduce the duration of needing pred, with the recommendation that it is explored in more depth. i.e. larger clinical studies. Certainly Vit D has an important role in the immune system and has a role in inflammation. I'm not aware that that recommendation has been followed up, however.

[Hidden in reply to PMRpro]

Thank you for your reply. Most interesting. I don't wish to waste time and money on false hopes but I do keep reading about a link between 'leaky gut' and PMR hence my interest in food sensitivities and Functional medicine. However, I believe that, apart from an elimination diet, only lactose intolerance can be effectively tested for using a hydrogen breath test.

[PMRpro Ambassador in reply to Hidden]

There probably is a link - the local gut specialist 20 years ago when mine started along with a sensitivity to commercial wheat was of the opinion it was linked to autoimmune disease but he was years ahead of his time. However - bit late now, the leaky gut link is sprung, the immune system is triggered and doing its thing. And I don't think diet is likely to reverse that,

However, sorting out one's diet should help a lot of things - but you don't need to waste money on testing of dubious origin for something they don't really know what they are looking for! Either choose various things, preferably one at a time, and see if omitting them makes you feel better or, even better but possibly hard work, do an exclusion diet and then reintroduce items one at a time and see how you tolerate them. The trouble with just adjusting diet without any proof is that you tend to throw the baby out with the bathwater and end up with an unnecessarily restricted diet. One "expert" will assert nightshades are poison - others will tell you tomatoes are anti-inflammatory. Most of it is woo - try your own empirical testing and see what agrees or disagrees with you!

[Hidden in reply to PMRpro]

Totally agree with you about the confusion out there - I have read eggs are both inflammatory and anti-inflammatory! I have introduced a probiotic supplement and for the moment will just cut down on the obvious... not too much sugar, caffeine etc.

[Gimme in reply to PMRpro]

And the problem with dabbling with your diet and eliminating certain foods is that you have to be careful not to substitute them with something else that upsets you. I think this kind of thing can be quite difficult to navigate your way through for most people without professional support, unless you happen to be clued up on what is in foods.

[PMRpro Ambassador in reply to Gimme]

Possibly - I have a mental filing cabinet that shoots open at the right place for almost all food! Signs of a misspent youth perhaps ... But there are professionals and professionals - after all, it just means being paid for what you do!

[Gimme in reply to Hidden]

I'm inclined to think that my food sensitivities and gastro issues are linked to the autoimmune activity that has triggered my PMR. I was originally told that I had IBS, after I had all the tests on my digestive system; the usual cameras up and down etc. I've come to associate the label IBS as a medical euphemism for, well, we can't find anything wrong with you, so we have no idea what is going on. I managed to work out that I could manage the gastro symptoms with diet myself, but then I do have a pretty sound nutritional background already from my work. My musculoskeletal, gastro and skin problems all kicked off round about the same time, so I am convinced that it is all linked. I couldn't help noting during the course of my work, how many of these chronic illnesses feature musculoskeletal, skin and digestive issues as a triad, so there must be some related inflammatory process linking them.

[PMRpro Ambassador in reply to Gimme]

Certainly it isn't uncommon for people to have gut problems, especially later in PMR> Several have been diagnosed coeliac, I'm not coeliac, but commercial wheat really posed a problem back them. Far less of a problem now so I assume the medication has clamed down on the symtoms. I itch more from strawberries now!

[Gimme in reply to PMRpro]

Well, as we have discussed before, I am probably an undiagnosed celiac and we know that one AI illness means that you may have a tendency towards acquiring others. Anyway, I will never find out if I am celiac, I had the endoscopy after I had already stopped eating wheat and declared negative for celiac disease. I will never eat it again to be re-tested as I know what the issue is and I avoid, which is the only treatment anyway. The thing that makes me think that I am celiac is that I react to all gluten containing cereals, rye makes me dreadfully ill which has the highest level of gluten. I am OK with some brands of oats, and suspect that the ones that I react to are cross contaminated. Barley is very iffy and anything on the gluten league table above and including wheat, are a definite no-no for me. Though, I suspect that the wheat thing is also an actual allergy, since my skin breaks out if I accidentally have a small amount of wheat and my face and fingers puff up.

[PMRpro Ambassador in reply to Gimme]

I was definitely only commercial wheat - and my symptoms were similar to those of dermatitis herpetiformis which is a skin reaction. A very nasty dermy refused to do a biopsy as I wasn't eating wheat (no-one said I needed to) and the local GI coeliac specialist agreed since I was managing the symptoms well with diet, it wasn't worth the agony of testing unless I wanted prescribed g/f things. Since at the time they were really awful, it wasn't on my list of essentials. I was able to eat pure rye and barley so it wasn't gluten.

[Gimme in reply to PMRpro]

oh, crikey, the herpetiformis is nasty. I'm not 100% certain that my "eczema" couldn't be herpetiformis, but it lacks the classic appearance and pattern.

[PMRpro Ambassador in reply to Gimme]

I just had 2 or 3 tiny patches - but the itch as it erupted was horrendous!

[Gimme in reply to PMRpro]

Interesting. Yes, horrendous itching. Wonder if I get occasionally accidentally glutened. I may be more sensitive to cc than I thought. I am pretty careful and only very rarely eat out, but you can't always be 100% sure.

[PMRpro Ambassador in reply to Gimme]

It is all too easy if you are particularly sensitive - especially when you have been abstaining from it for a long time. My daughter is now both vegan and g/f. Luckily she tolerates crosscontamination well but she decided to have normal pasta when she was here and boy did she suffer next day! No sympathy from me but she was surprised how bad it was.

[Gimme in reply to PMRpro]

ha yes, I think they describe that as a self inflicted injury.

[Stills in reply to PMRpro]

Just read up on DH after following this thread. I’ve long had a rash that matches the images on the web. GP glanced at it once from a distance of 6 feet and said she age spots. I do indeed have some scherrobic keratosis (spelling?) but the DH type rash waxes and wanes. It itches like hell and can be quite sore. I use the detmovate prescribed for LS to keep it at bay. I test negative for coeliac and gastroscopy found nothing. Stills has been present since 1979 but following combined flu and 3rd covid vax November 22 I’ve been in some sort of flare up of something . Symptoms indicated cancer but none found as of Jan 24. I have however been unwell for over a year and although various things have been uncovered and prescribed for I’m dubious they contributed to this long malaise. Your comment , it is known Covid, is exactly what I think has happened to me and your words again, straw that… explains my position well. In short my immune system said enough is enough . I’m currently experimenting with foods and finding dairy fuels the diverticulitis that I believe was caused by the PPI that was unnecessarily prescribed plus my own folly of managing my RA pain with OTC codeine products. Any way I subscribe to the leaky gut theory and reading your posts a source of invaluable information thank you. In the subject of rashes I think I have molluscum contagious (?) under my arm so I’m putting dermovate on that too. I do wonder though if too much steroid cream is a good thing. I’m sparing with it and only use it as a last resort though.

Comments, advice and thoughts much appreciated.

[PMRpro Ambassador in reply to Stills]

seborrheic keratosis ... The dermies do have some strange names!

Mine was due to a wheat starch allergy, not gluten at all. But the likeness was amazing. Too much steroid cream probably isn't a good thing and sparing use is called for. But you do need enough!

I do understand WHY they are so keen to dish out the stuff "just in case" but to me it shows a fundamental misunderstanding of the use of medications. One on one is a very different situation from chucking in half a dozen ingredients

[Stills in reply to PMRpro]

Wise words as always thank you

[Sharitone in reply to Gimme]

Interesting. My gut has got increasingly problematic. I have very little lactose. I've seen the GP, but the wheels grind exceeding slow. I was just wondering whether there are any obvious steps to take while waiting.

[Gimme in reply to Sharitone]

Well, lactose isn't the only kind of intolerance. There are far too many causes to discuss here and maybe off topic, anyway. Plus, it needs to be diagnosed by an HCP and more sinister causes ruled out, at the same time.

Fructose malabsorption is pretty common in the general population to a greater or lesser degree, but you can't diagnose it with an exclusion diet. I found out by accident that I am a fructose malabsorber, but that's one rabbit hole that I wouldn't send anyone down, unless you know what you are doing. One of my concerns is that the move towards the reduction of sugar in foods and sugar free foods, that people are now getting a lot more sorbitol than the gut can tolerate and I wouldn't be surprised if that contributes to the rise in upset tummies. Sorbitol is infamous for causing diarrhoea if you over do it. And that is just for starters.

Anyone with digestive problems, I would always recommend a food diary for 2-3 weeks. Record everything you eat or drink, any digestive symptoms, how you are feeling (stressed, happy etc) and any major events (either positive or negative). A pattern should start to emerge over that time period. In any case, it is useful to show to your doctor. So, you could do that, in the meantime.

[AtopicGuy]

Five years ago, I tried an exclusion diet, before committing to steroids for the first time. It took over six months, but produced no improvement in my symptoms.

[Hidden in reply to AtopicGuy]

I certainly don't notice any obvious food sensitivities in myself apart from alcohol or if (like most people) I overdo the sugar or salt. Brilliant that you tried that though to rule it out.