Since the beginning of my IPF diagnosis, various consultants have been tying to find a link with my disease and my auto immune system. My blood always shows high levels of inflammation, which point to Vasculitis. I had a year seeing a Rheumatologist who did all sorts of tests including a PET scan The conclusion was that there was no real evidence of Vasculitis. I have frequent routine blood tests and over last year my kidney function took quite a dip. I had a kidney scan, which my GP wasn’t overly concerned with but referred me to a Renal Specialist. I saw him last Monday.
I had a blood test, which again shows Vasculitis markers; seemingly this can attack both the lungs and the kidneys. The only treatment is autoimmune suppressant drugs. This would only hopefully halt any more damage not cure it.
He wants to do a kidney biopsy on Tuesday to get a definite diagnosis
To say I’m terrified is an understatement! With Dee and my other problems I feel like I just can’t worry any more. I just want to curl up into a little ball till it all goes away!!
I don’t take medication and have what amounts to be a phobia about it. If there[s a side effect to be had I have it! I’ve also had bad reactions to Antibiotics.
He said it wouldn’t be ideal as to reduce my immune system especially now with Covid but he doesn’t want my kidney function to go down further.
I just feel between a rock and a hard place and added to lockdown Im not coping well. Has anybody had problems like this?
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Aingeful
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I am so sorry. What with everything you have going on already this is not the best time to be faced with these issues. But illness does not kindly choose when to rear it's ugly head unfortunately. 😥
Yes, I know exactly what you mean. For me it is Rheumatoid Arthritis. I was diagnosed with it fifteen years ago, and was quickly put on autoimmune suppressive drugs, Predisone, Methotrexate and Enbrel. I was scared of all these drugs because of the potential side effects. But I also knew that without these my joints would deteriorate over time and perhaps the disease would attack my organs. So, I diligently did all I was supposed to. Unfortunately, it attacked my lungs anyway, but I know it could have been a lot worse without the drugs. So, yes the choice is awfully difficult, but as your doctor says further damage to your kidneys is a huge risk. Renal failure is horrible and I would at all costs try to avoid it. My kidney function dipped into the low forties due to the drugs used post transplant from 68% before my transplant. I have since regained just over ten percent of my kidney function, but it will likely never go back to what it was. I know it's a hard decision to make. Weigh all the pros and the cons. And if you start treatment, just take even more precautions. I will be glad to share what I do on a daily basis to keep safe due to my low immune system, so just let me know if you need tips.
Did you ask him if it was really necessary to have a kidney biopsy?perhaps you could contact his secretary tomorrow.i know what you mean about lockdown.
I, classed as highly vulnerable.
Letters say to stop in for at least 12 weeks.
I am on immunosuppressants.
When they were first suggested,I was reluctant to think about taking them.
By the time I they were actually prescribed. I was glad to take them.
Same with my lung disease. They wanted to to do a biopsy, but my lungs were too weak to withstand it. So they ended up going by data and tests. After transplant they dissected my diseased lung and found their diagnosis was spot on. xx
Aingeful,are your respiratiry consultant and your rhemuatologist talking to each other.?bog standard pulmonary fibrosis isn't normaly associated with vasculitis but you can get pulmonary vasculitis which i belive is entirely different,it all sounds very complex and as you say not the best time for somebody to be sticking needles in your kidneys,is there no alternative medication you can take in the short term,as much as you hate taking meds that will safeguard your kidney function until such time as this virus is either under better control and or you have access to one of the covid free hubs currently being set up.not the perfect answer but it may relieve your anxiety a little?
Sorry not much use as a reply but feeling for you whilst you have to go through all this.
Thanks Skis,None of them seem to be talking to each other at the moment!
My Rheumatologist discharged me last year after just coming to an Osteo Arthritis diagnosis!
As far as I can see,this Renal specialist is going off all the info in my notes and blood tests. The markers are still showing up and he needs a reason. Much as I hate all this hes only doing his job! He cant really prescribe anything until he knows what it is.
The hospital is a half hour drive away,on the positive side its a drive out!!
Morning Hun, I do sympathise. It took me awhile to understand the link with RA Osteo Pena & Lung Disease. 9 years ago I had a full Hip Replacement due to RA, from that Operation I developed Lung Problems, which over time & many Different Diagnosis from, Asthma, Bronchestis, Ending up with Emphysema Stage 4, so , with all the Meds, and Blood tests for the Kidneys, especially when I was listed for Transplant, the Kidneys have behaved . I have stopped using Ibuprofen Gel prescribed by GP for RA for Knees & Body, as I have found "Turmeric" Capsules work amazingly. I know I have gone off track, but some Good News can give you a Lift to rethink "Other" types of Self Meds. I do Hope Dee is Stable and Like you, she is a Fighter. Sending my Love & Best Wishes. Stay safe. XXX C.
I am so sorry you have such a dilemma but realistically you need to go ahead with the biopsy and get a proper diagnosis so you can be treated. It always seems that it is one d**n thing after another and life becomes a balancing act of risk. With all best wishes as you make your difficult decision xx
The Vasculitis came first for me. I was diagnosed by kidney biopsy. Please don’t worry about the actual procedure it’s just a little uncomfortable. If you do have Vasculitis then it’s important to get treatment to halt its progress ASAP the damage is often permanent. As for the immunosuppressants I would try not to worry about them until you have a diagnosis. Most of us take months or years to get a diagnosis so your renal consultant sounds to be on the ball. Sending you big hugs and wishing you well for next Tuesday. Xx
I don’t think I had to wait too long for results. If you are positive you will need medication but better that than lose your kidney function. I’m happy to point you in the right direction of some excellent Vasculitis support should you need it. I’m keeping 🤞for you. Xxx
Sorry you are going through such an awful time, it’s not an easy thing to deal with at all. I came across a note after getting a lung biopsy and my lungs washed out after a severe lung infection which stated I could have IPV Fibrosis in later life, that was ten years ago and I have some of the symptoms like scarring on the lung, intermittent dry hacking cough, I could wheeze at will, chest discomfort, aching muscles, a feeling I can’t get air into my lungs properly, fatigue and tiredness. I cannot get tests done to confirm IPV because of the virus needs now. It’s very worrying. In reading about the condition I note that Acid Reflux can cause scarring on the lungs. I have a bad case of stomach acid just now and think it could be GERD. I think I may have had this underlying for some time as I’ve had discomfort in my stomach and very bad bloating for some time. Looking into this further I discovered that inhalers can cause acid in the stomach which can then affect the gullet, I have crackling in my throat. If inhalers are not used properly they can cause infection in the mouth and I’d say throat and also thrush. Where does that go I’d have to ask? It’s a bit of a minefield taking drugs because of all the side affects, a balanced we all have to weigh up.
Hope you find a solution soon and find a way back to good health!
Yes,those sound like my IPF symptoms! There isn't a lot can be done till scans etc are taking place. If they thought that there was any urgency they would have had you in by now. I don;t have inhalers but an asthmatic friend of mine seems to have a permanent sore throat!!!
It seems it’s a common side affect. I wish the my would make it clear how the inhalers should be used properly, so there is less likelihood of inhaler users getting this.
What a lot of stress for you Aingeful. Like hacienda I try other more natural products too. I use coconut oil on my food and as a massage oil especially after a hot shower or bath as it seems to soak in better . It seems to help my inflammatory ulcerative colitis which in turn affects my joints Take care. Be strong with what ever you decide to do. x Anita
I have a rare autoimmune disease called IgG4 systemic disease. It is extremely rare...back in 2000 there were only 100 diagnosed cases in the world...more by now,but obviously not loads. It’s affected my pancreas & kidneys but I know can affect different systems.I also have severe asthma.
Anyhow I too had to take immuno suppressant drugs... I used to take azathioprine,but now have Rituximab infusions.
It sounds like you have way more than enough to cope with at the moment,but please don’t be afraid of taking these meds. I’m sure the Dr would have considered it carefully, especially at this time. Of course you need to be extra careful, but my kidney function has stabilised so much over the past 4 years or so because of these drugs!
Just wanted to offer a little hope!
Goodness I could cry for your situation!!! You sound like an amazing woman who’s going thru so much. Please take care of you too!!!
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