Hi everyone

[Reggie999]

My name is Dave and I was diagnosed with MPA Vasculitis around the end of September. I had been having fevers and night sweats that would come and go most days for approx 6 months. Also aching legs and tingly feet. GP had no luck finding the cause for about 3 or 4 months. Then my wife insisted I should go to hospital. Was there for 12 days then discharged, still no diagnosis, just more tests. Finally a Renal specialist diagnosed MPA Vasculitis. On Prednisolone 45mg currently. Had 3 Rituximab infusions. Has damaged my Lungs and Kidneys. Waiting to find out the extent of damage. On Co-Trimoxacole 3 x a week.

[Investigator1]

Hi Reggie, please don’t look at the time I sent this (I am in Cyprus on holiday) we’ll mate at least they have found out what it is, don’t despair it’s a journey and I was a good three months before I was diagnosed (GPA) I live an almost normal life, you adjust. I like you am under a renal consultant and for me it’s been the best thing since sliced bread so please take some positivity from that. If I may offer a few kind words of advice and I appreciate we are all different but the 3 main things I have learnt in the 4 years since diagnosis.

1/ While on Prednisolone watch the Carb intake, they can be a swine and increase weight gain. I stuck (and still do) to a low carb plan max 50 a day and only put on about 5k, some patients put on 20-25k and this leads to further issues.

2/ As your recovery progresses try not to become paranoid, unfortunately I did. Every little ache and niggle as my body changed under treatment I googled - fatal! I wish I hadn’t 99% of the time it’s worth noting but nothing serious. I made a diary so when I woke up with something I was able to say “been there, got the T-shirt it really helped.

3/ Listen to what people say on this forum, they have been invaluable to me and aided my recovery, you can ask almost anything advice wise.

Take care and good luck.

Nick.

[Reggie999 in reply to Investigator1]

Cheers NickThanks for your advice. I have started to put the weight on, although I had lost a lot of weight. I will stay looking out for posts.

Enjoy your holiday

Thanks again

Dave

[Diamister in reply to Investigator1]

Great advice Nick. My only thought would be to take control of your treatment, become an expert, ask the questions and don’t assume that someone is watching your progress every minute of every day. Only you can do that, you are your best advocate and you know what feels right or doesn’t. Taking control is not for everyone, I admit, but it has worked for me and I feel as though I’m not being overwhelmed by this crappy diseases. Good luck Dave. Great group of people on here, but make sure you’ve got a good relationship with your consultant and nursing team. Best wishes. Steve

[Investigator1 in reply to Diamister]

Yes again really good advice, you have to try and take control. It’s true it’s not for everybody but sometimes letting people know you are on their case moves things along. Unfortunately otherwise for some in the medical profession no noise is no concern. Nick.

[2534]

I am so sorry you have taken such a hit from this vasculitis. It sounds as though you are in good hands now. Here is something for later that may be useful. I have MPA but without anca involvement. If your blood tests reveal anca involvement, then you qualify at some point, depending on your consultant’s advice, for avacopan (research name Tavneos) which is devised to be an adjunct to Rituximab. I gather it is very effective. It is a new drug, designed for anca related MPA. There are other comments on it in these chats. The beauty of it is that it is not immuno-suppressive as I understand.

I am not knowledgeable about this but you could ask your consultant. According to a vasculitis consultant at Addenbrooke’s it will eventually be rolled out to people like me and others not fitting so neatly into the target group.

Good luck. It is a shock at the beginning but many of us have found it all settles down a bit into a steadier state and an appropriate regime.

Take care

A

[Mooka]

You’ve come to the right place for help and advice. Have you looked at the vasculitis U.K. website- it’s a mine of information. There’s a great helpline e too if you’re struggling. I had the night sweats they do go with treatment. Don’t expect too much from your GP it’s likely he’s never seen vasculitis before. It’s a bit overwhelming to start with you will learn what’s right for you. Also be kind to yourself and pace yourself if you have fatigue. Pushing through it will make you feel worse. Hopefully you will be tapering those steroids soon and be free of the side effects. Good luck once you get this under control you’ll feel much better.

[oldtimer2]

I'm just behind you in terms of diagnosis, so I'll be very interested to hear your progress, what medication you receive and how you get on with it all. The rash started in late August and I think everyone just hoped that it would clear up and disappear and they wouldn't have do any 'thinking'. I've had Rheumatoid Disease for many years, so I'm very familiar with the 'Patient Initiated Follow-up' (PIFU) problems.

From what I've read so far mine looks as if it might be MPA, but the only diagnosis so far is vasculitis with positive anca. It's settled considerably on 20mg prednisolone, but what next?

I seem to be the one testing my urine, keeping records, asking questions, suggesting medication. The medical staff just get excited, take photos, look things up and then go quiet!

[Main1234]

hi

Welcome to the group nobody wants to join! You have had some great advice and this site is informative and friendly, no question is “ silly” please ask away.

Can I put in a word for partners . Supporting a partner with a chronic rare condition is not easy, I personally found it difficult despite being a health professional.

There is a good FB page as well as the helpline.

Take care and good luck.

[Hidden]

Hi Rggie999, I'm in the US. I have to say that your post is an almost exact mirror of what I went through. I had 4 months of pain, agony, swollen feet, headaches, fever, and severe joint pain. I saw 4 different doctors over that time and none could figure it out. I finally went to the ER. During my first week in the hospital, the hospitalist doctors thought I had metastatic cancer. When this really good Nephrologist came off of holiday, he DX me with the GPA. By that time, my kidneys were stage 5 total failure. It took about a year of drug treatment and dialysis to get me back to a halfway decent way of life. Hang in there mate, you'll be okay.

[Reggie999]

Thanks to everyone. Great advice and support. I have spent a lot of time researching about mpa and hopefully I will know what to expect. I have changed my lifestyle to incorporate a healthier diet and some gentle exercise. Also I have gone back to wearing a mask in shops and crowded places which is a little bit annoying but it needs to be done I suppose because of the Rituximab and steroids. Once again thanks for all the advice and I will pop back and let you know how I'm getting on and maybe one day we'll be able to pass on some bits of advice to others. Take care everyone

[michichgo]

Hi Reggie999.

I live across the pond in the States, near Chicago. I was diagnosed with MPA in 2013 -- yep, I just marked my 10 year anniversary. I initially suffered significant kidney damage but have recovered enough function to live reasonably well. I experienced some systemic damage but it is all controlled with medication and/or monitoring by medical specialists.

You're in a rough patch, as that first year can seem overwhelming. You'll find that there are many differences in individual responses to the disease and its treatment. Time will tell your own individual path but do your best to recognize you're in the early stage of your diagnosis.

You've found a good group of helpful folks, here. Welcome to the club nobody wishes to join.

Wishing you improved health and a full recovery.

Cheers,

Michele

[Reggie999 in reply to michichgo]

Thanks MicheleI appreciate your reply and support. Feeling OK at the moment, the worst part is having to avoid social gatherings because of the drugs suppressing my immune system. Seeing the Kidney specialist on Thursday so hopefully get some positive news.

Take care and thanks

Dave