Herbal Supplements

[Maudy1]

I am struggling from nausea, upset stomach, fatigue etc I think from general toxicity of vasculitis treatment. I am keen to try some natural remedies and was just wandering if anybody had tried any herbal supplements, selenium, oregano oil and turmeric has been suggested to me?

[HiveMind]

Hi, I tried herbal treatment under the care of a very competent herbalist. Unfortunately my kidneys could not cope with it and were struggling quite a bit. Whether this was because, like you, I'd previously had to have all the usual meds (and some others!) for my Vasculitis and my kidneys just couldn't deal with any more "stuff" or the herbal treatment was just too strong. Personally I try to eat "cleanly" (generally non processed and in it's natural form) as much as I can and I've gone gluten free, which for me, was a turning point in how well I felt/feel. I also take Omega3 - which is the only "supplement" I do take. Because of all the toxic stuff we have to take I feel the less you stress your body/kidneys out, the better. Hope this helps and good luck.

[Maudy1 in reply to HiveMind]

Thanks, that's why I am wandering whether to load more things into my body and might try it by diet. I have just gone gluton free. Do you have kidney involvement with your vasculitis? Have all the drugs made you feel unwell some of the time? I feel particularly rubbish in the mornings.

[PatriciaAnn]

Hi Maudy1

Depending on which drug regime you are on I'd steer clear of tumeric. I don't remember where it was that I saw this advice or the reasons for it being said although it was in particular reference to cyclophosphamide (it was over 10 years ago) but better to be safe than sorry.

I do know that those who like curry put tumeric in their food and maybe it is only a matter of degree. I am not a curry lover so it hasn't ever been something I have put to the test.

As some of these supplements etc might react with your vasculitis medicines I'd at least have a word with your pharmacist before you consider adding other things to your intake.

PatriciaAnn

[Maudy1]

Good advice thank you. I think I am so desperate to feel better that I am grasping at straws! I will hold off for now and I think ask my consultants advice before I embark on any further remedies.

[PMRpro]

I see someone has already mentioned this - but I can't emphasise enough how important it is to ask a pharmacist (preferably) or doctor about using ANY supplements when you are taking any prescription medication of any sort. Just because they are "natural" does not mean they are totally safe and even more so when you are taking heavy-duty medications for anything. Even grapefruit can cause trouble with certain medications!

If you are suffering from nausea as a result of chemotherapy for anything (the word just means using chemicals or drugs instead of radiation or surgery or physical therapies) then discuss with your doctors whether an anti-sickness medication might not be useful. If they give you one - use it BEFORE you start to feel ill because then it works far better than waiting until you already feel awful: prevention is better than cure! My husband wouldn't take his until he felt ill ("I've got enough stuff to take" and he wouldn't listen to me ) and then of course it didn't work so well. Then the hospital started giving it to him hours before the medication - and it was like a miracle. There are several, if one doesn't work ask to try another.

Have you tried any of the tried and tested things they used to tell us to try for morning sickness in pregnancy? You know, the dry toast and stuff. I find ginger tea good - but ask the pharmacist first.

[Maudy1]

Thanks good advice. I think I am going to hold off for now. I am currently on Rituximab, Prednisolone and Omeprazole so not sure why I feel so off colour all the time. I generally feel unwell, but think its probably a combination of drugs over a period of time ( I've had cychophosphamide, methotrexate and azathioprine) I have tried ginger and have just started gluton free so will see if that helps. Thanks again.

[pinney]

Hi,

I'm on the same regime as you and feel your frustrations.

Like has been said before if you find something suitable a pharmacist or your consultant can help. I found copying and pasting the pill info to my consultant (or their office) the way to go, that way they were able to look and advise when they had time.

This is just a thought, have you had your B12, folate and vitamin D checked of late ? The combination of drugs may be perhaps making these a little low at the moment.

Good luck with your ongoing treatment

Xx

[Maudy1 in reply to pinney]

Thank you, had folate checked but not the others. Can has Rituximab worked for you, I am 12 weeks in and my symptoms are no better. Do you feel unwell a lot of the time?

[pinney]

My first Rituximab took about 3 - 6 months to start working and then lasted 3.5 years... My symptoms were worse to start but the long run was worth it.

I'm on my second dose now, into my 8th week, not feeling my best yet so on a short 5 week course of steroids to see me through to the better days.

Not sure this has helped but my reference on the B12 is that mine was always low and sometimes adding omeprazole can upset the bodies balance further and can cause fatigue et al. I had mine checked prior to adding to my regime again.

My philosophy, I've already plenty of damage to my organs if my consultant allows checks before perhaps I can prevent or at least reduce further issues

[Maudy1 in reply to pinney]

That's really helpful. Sorry one final questions, did you have to stay on steroids for a while after your 1st infusions, I am on 15mg daily and really struggling. I was led to believe it should work in 12 weeks but encouraging to hear it sometimes takes longer. Have you achieved complete remission?

[pinney]

Hey, no worries.

I stayed on steroids for quite some time after the first one (perhaps precautionary) and tapered very slow (seem to be very sensitive to steroid fluctuations). I was on 3mg for a few years (much better than >10)

I was in complete remission.

Sadly this year something kicked those eosinophils off again, not total relapse but enough to give me a small dose of Rituximab to see me through !

[AndrewT]

Dear Maudy1,

Please don't take this the wrong way- I am NOT trying to 'rain on your parade' but.....Some herbal remedies can actually be harmful, to immuno-suppressed people (and I assume you are). Most notably St John Wort and Ecinaisa (may not be spelt right)- both of these 'boost the immune system'- I'm not saying never take them but please do get specialist advice first.

I don't actually know much about 'Rituximab' myself- I'm on MMF, prednisolone and Tacrolimus (following a kidney transplant) along with a few other 'bits and pieces'. Prior to the transplant I was on azathioprine, instead of the tacrolimus- most other things the same, or very similar.

After I was first diagnosed, about seventeen years ago now, I was given Cyclosporine, Cyclophosphamide (I think) along with various other drugs- that I either can't remember, or have long since been discontinued.

I don't know if this has been any help to you, sorry if it hasn't.

I send my best wishes anyway

AndrewT

[Maudy1 in reply to AndrewT]

Thanks Andrew, lots of people have given the same helpful advice so I think I will stay clear. I feel so unwell all of the time, think I am grasping at straws. What is MMF by the way?

[AndrewT]

Dear Maudy1,

How's this for a fast answer. MMF (sometimes MFM) is- and I'm actually reading this-" 'Mycophenolate Mofetil' according to the leaflet, it is, 'Immunosuppressant'- Mycophenolate Mofetil capsules are used to prevent your body rejecting a transplanted kidney, heart or liver." In other words it works, along with prednisolone etal, to stop my body rejecting my new kidney.

I'm sorry that you feel so unwell Maudy- I assume that you have to this to your Doctors/Consultants. which hospital are you under, by the way? Are you anywhere near Cambridge, i.e. Addenbrooke's? Dr David Jane, also an advisor to Vasculitis UK, is based there. I am under his team, probably the best in the country- maybe even the world. Maybe you can get a referral?

Please do let me know.

Very best wishes AndrewT

[Maudy1 in reply to AndrewT]

Hi Andrew, yes I have been to Cambridge and it is them that advised the Rituximab to my local hospital. I am due to see them again in November and may try and actually see him this time rather than one of his team. Thank for your advice. I think sometimes its just a time thing. I would just hope to be feeling better after 12 weeks but many have emailed and said it took them longer. Best wishes to you as well. Sally

[mumu]

are you sure your not suffering from ibs, you benefit from trying the fodmap diet just to see if your symptoms go, i have wg vasculitis and have had the symptoms you have and have finally discovered it was ibs, you have nothing to loose to try it, good luck xx

[Maudy1]

I think it could be, what is the food map diet?

[mumu in reply to Maudy1]

just type in fodmap on your computer, it is a diet devised by doctors at monash university. there is loads of info on the internet and i have bought a couple of books by sue sheppard. it is the only thing that works for treating ibs and it works for most xx

[PMRpro]

Maudy - it has only just clicked with me that you are taking omeprazole - a common side effect of it is upset stomach and bowels. It might be worth asking your doctor to let you try Zantac which works in a different way and see if that helps.

And did you take methotrexate and omeprazole at the same time? There is an interaction, mostly at higher doses but it has been observed in some patients at lower doses too.