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Vasculitis UK
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Question about nausea and Vasculitis

Hey everyone! so my dad was diagnosed with ANCA Vasculitis in 2018 and has been struggling with it on and off ever since. He seems to be nauseous A LOT of the time and says he ends up actually throwing up sometimes. He’s had many different kinds of medications so far to see if perhaps the nausea can be scaled back a bit but it seems like nothing works. The doctor said he doesn’t know why my dad is so darn nauseous all the time. They eventually prescribed him zofran for that but apparently that doesn’t work for him either.. my question is, does this type of Vasculitis cause nausea all the time? Do any of you deal with constant nausea all the time and how do you deal with it? Do all of the meds they prescribe for Vasculitis give you nausea?

Up until his diagnosis, I had never heard of this illness before and so I’m trying to understand it more because it seems like a complicated disease. Anyways, I’m glad I was able to find this community. Most people I feel have never heard of this disease.

Thanks in advance!

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Hi, I have ANCA associated vasculitis (MPA) but I have never experienced nausea because of the disease. It's not something I've heard of. However I suppose many of the drugs we take can have side effects of nausea. Cyclophosphamide certainly did with me. Chris

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Hi sweettea5,

I also have ANCA vasculitis and struggle with nausea and vomiting when I’m flaring but otherwise not a lot. There are a few anti-emetic (anti vomiting and nausea) medications that the doctor can prescribe but it can be a bit of trial and error finding the one that works for you so if Zofran isn’t working for him, perhaps the doctor can offer an alternative? It is also important to note that quite a lot of the medication used to treat ANCA vasculitis can make you feel sick as well such as steroids, methotrexate and cyclophosphamide, so sometimes it can be hard to find tell if you are feeling sick because of illness or because of a side effect of the medication. There are some things that you can try to reduce those side effects though - your Dad’s doctor and / or pharmacist should be able to help advise there. Have you noticed any particular triggers for your Dad? What medication is your Dad being treated with?

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Dear sweettea5,

I'm sorry, that your Dad is suffering so. You are right about Vasculitis, it is VERY Complicated indeed! Our 'Sister' Organisation, Vasculitis UK, has a 'Roadmap of Vasculitis'- it is aimed mainly at Professionals…...It 'runs' to several Hundred Pages!

To answer your question, as best I can. Vasculitis can, and does, affect the Gastro Intestinal Tract- all of your 'Gut', mouth to bum, in other words. This can cause, variously and by degree, Sickness, Upset Stomach, Heartburn/ Indigestion, Flatulence (Wind), Constipation, Diarrhoea, Cramps/ Pains and Feelings that you have been 'Gutted'.....to name but a few! I assume that your Dad, is 'On', several Medications. Probably Prednisolone and/ or Azathioprine, Rituximab, Mycophenolate Mofetil (MPM) or Cyclophosphamide- quite likely Others too. All of these Drugs have Contra-indications, and Side Effects lists, that go up to the Moon! If you actually Read, them all, you wouldn't take them, no really! On the 'Pluss Side' because there are so many Drugs, these days, if a Person REALY doesn't Get On With/ can't Tolerate a particular Drug, then another can be tried. It will, in any case, take time for a suitable Drug Regime, to be 'Found'- don't worry this IS quite normal.

OK so now that I've 'Frightened You Half To Death' the good News. I'm quite certain that, your Dad will Respond, to Treatment, and that the Sickness/ Nausea will improve. Is your own Doctor 'Approachable'? If so then (s)he could well be worth a visit, otherwise, I'm sure a Hospital Consultant can be approached. Dr David Jane, who works at Addenbrooke's Hospital Cambridge, is the Leading Expert- on ALL 'things' Autoimmune. Dr Jane is also a Consultant to Vasculitis UK- do look at their Website sweettea, you can 'Look Up' a great deal of information there.

Once again, sorry to hear, that you Dad is so unwell. Our Love, and Prayers, are with you both.

Warmest Wishes

AndrewT

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Apologies for jumping in on this chat but as a font of all knowledge vasculitis I thought you might be able to help!

I have TA and tapering Prednisolone now on 3 mg and 15 mg Methotrexate. Reduced to 3mg 1 April and since them my stomach has been difficult and last couple of days completely constipated - in pain and not sure what to do! Sorry to lower the tone of this communication but any ideas?

Thank in anticipation

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Dear PaddyPop,

I didn't mention Constipation specifically....but YES that too! Along with 'Wind/Gas' cramps/ griping and so on. What to 'Do' about it? A difficult one- rather like the 'Poo' actually. The Standard Advice is....More Fruit and Vegetables, more Water (seemingly Gallons, if some are to be believed). Reduce your Tea, and Coffee (especially this) consumption, and so forth. You can also speak to your own GP/ Pharmacist, about 'Laxatives/ Stool Softeners', and the like. (Don't 'Overlook' the local Pharmacist, often a Good Source of information- and 'Sympathy', if you are REALLY Struggling!)

In the end You are in the same 'Boat', as a lot of us....Type 'Constipation' into the HU 'Search Bar', top right, and you will see 'Loads' of entries- some by me!

I'm sending you, my best wishes, and hope that you find Relief soon PaddyPop.

Good Luck

AndrewT

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Keep in mind that if you are taking opioids for pain management, those and other meds can cause constipation. Stool softeners , prunes, or prune juice and lots of water. If you can walk at all, walk around, or go for a brisk walk, it can help move things around a bit. AndrewT's advice looks good to me-

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Thank you

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Hello Paddy, after going to the A@E last June I was diagnosed with p-Anca Vasculitis..Etc..{my Dr told me I had a Tummy Bug)Getting to the Point after coming out of the hospital 2 weeks later ,I was Severly Constipated..I was giving opening medicine Which worked..I couldent get off the toilet not wanting to have to take the opening medicine too often..Although you can scale it down..I tried A Large Mug of water as soon as I get up, a big bowl of Porridge every Morning with Half a Sliced Banana in it,as I found it boring I started to eat an Apple and an other fruit through out the day not a lot ,and plenty of water through out the day I eat Veg every other day..It works for me about half an hour after the Porridge..I also changed to Brown Bread..Go regularly now No Problem unless I eat Boiled Rice..Hope this helps,

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Funny (not) how GPs get it wrong. Mine said I had a sore throat and a slight cough - diagnosed with Takayasu Arteritis with a can’t remember if it was an ESR or CRP of 117 - should have been around 5 with 0 iron levels. She said she didn’t feel as stupid when she discovered how rare the condition was!

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Thank you so much, that’s very helpful! Yes I believe he’s on all those meds actually. We’re going to see if perhaps the doctor can prescribe something other than zofran since that doesn’t seem to work. It seems like his meds are making him nauseous as well though :(

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Hi Sweettea. Can’t add to what AndrewT said but my experience says the same. Nausea dealt with by an anti-emetic. It was a byproduct of Cyclophosphamide/steroids/Azathiaprine not Rituximab for me. Everything started to get better when I saw Dr Jayne ( I think now Professor Jayne) onNHS at Addenbrooke’s Hospital in Cambridge. Well worth you dad getting to him somehow. I hope he gets relief from this. Blessings to you both. 2534

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Thank you so much! I will look into it. Hope you find relief as well! :-)

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I have EGPA, an ANCA associated vasculitis, in my case I was lucky to not have gut problems. I did not have any nausea. But, several of our drugs can cause nausea. Azathioprine and Cyclophosphamide are common culprits. I just take the aza with meals and it doesn't bother me.

You don't say which specific type of vasculitis, but ANCA associated vasculitis include MPA, GPA, EGPA, which in some cases can involve the gastrointestinal track, that's pretty serious...

Did he have the nausea along with the original symptoms? Before the treatment drugs were started? If so, it's likely the symptom has something to do with his condition and not a med side effect.

I hope your Dad finds alternatives to anti-nausea- Being sick is just awful, so I feel for him. Best of luck.

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Hello! I’m not exactly sure what type of ANCA he has but it affects his kidneys if that helps. To answer your questions, yes, he did have nausea and vomiting before he was diagnosed, but I figured with all the meds he was taking perhaps that would go away but unfortunately I guess not. Since this disease is rare, I don’t know anyone who suffers from this and so that’s why I thought I’d ask here. :-) I suspect that his stomach problems are probably from the disease and also, it doesn’t help that his own meds make him nauseous as well :( but hopefully we’ll find the right combination of meds that will help with that. Thank you for taking the time to reply!

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Before l was diagnosed with vasculitis I had dreadful sickness and nausea along with all the other dreadful symptoms. Since being on medication all symptoms have reduced except the awful constant nausea. I am taking anti sickness tablets but it continues .i am due to go to consultant in a couple of weeks and it will be one of my first questions, although l am so grateful that l am not in as much pain now .

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In the early days of diagnosis my husband suffered terribly with nausea but it subsided as the Vasculitis became under control. He has Granulomatosis with Polyangiitis.

I believe if you have kidney involvement you may suffer from nausea. Occasionally some of the drugs that are used to treat Vasculitis can cause nausea too. These pages on the vuk website may help to explain a little. vasculitis.org.uk/about-vas...

vasculitis.org.uk/about-vas...

It is important your dad is monitored and the problem is investigated.

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Thanks for your reply! Yes, my dad does suffer from his kidneys. When he first got diagnosed he almost went into kidney failure. I suspect that the nausea and vomiting might be from the illness itself unfortunately. I just really hate seeing him so sick like that all the time. Many of the symptoms are awful but being nauseous is one of the worst things! in my opinion, of course. I was just curious if that’s something that a lot of people with Vasculitis suffer from. I don’t know anyone else who has this so I don’t have anyone else to ask. But Thanks for the links!! :-)

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Hi, I too suffer dreadfully with nausea, retching and also being sick. Sometimes I feel so bad that even the slightest movement makes me retch, it’s horrible and very debilitating. I personally have found that it seems to be when I am tapering my steroids, I’m currently on 12mg one day and 10mg the next, but on the 10 days I do suffer from nausea as well as all the other issues of severe joint pain etc. I personally did not get on with the anti sickness meds I had when on the chemo, as this gave me severe stomach cramps etc., but it’s worth a try as everyone is different. As others have said vasculitis is very complicated and affects individuals differently, so definitely worth talking to your specialist. Anyway good luck with it from a fellow nausea sufferer.

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This concoction seems to be working for me the last few days and has brought my appetite back. I should mention I am waiting on being diagnosed for Vasculitis and so not on any medication which may make a difference to the effect on others:-

1/4 tsp Cayenne Pepper

1 heaped teaspoon Molasses (natural unrefined sugar or sub with treacle)

1/2 tsp Apple Cider Vinegar (not supermarket but health store cloudy vinegar with the “mother”)

1 1/2 tsps lemon juice

Stir altogether with warm water from a kettle. I mix up to a 1/4 of a whisky tumbler.

Be warned the magic is in the vinegar and it is important to not overdo the amount otherwise it may cause problems with stomach aches. I have two of these in the evening and small sips during the day and have not experienced the daily nausea tight stomach I have been getting the last few weeks. Hope this may work for someone else.

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