Happy New Year to everybody hope you all stay well this year now I need some advice. So I had my bloods done 6 weeks ago, my ANCA marker was really low and consistent with previous readings, 5 weeks ago I had my last infusion of Rituximab. Since I have been on Rituximab I havnt had a flare of any kind. But 2 days ago I started getting Head/Neck ache that just won’t go away, these were the symptoms I started with, firstly on top of shortage of breath (not this time) blood from my nose (not this time) tender scalp (not this time) and the pain seems to be moving around more than last time. My questions are is it likely that my GPA has come back bearing in mind I’ve not long had my results and treatment. I have consumed quite a lot of alcohol over Christmas but stopped now. Could it be the Rituximab that may cause the headaches and neck ache, I’ve had joint pain about 5-6 weeks after treatment and neck pain but some time back and I have had pain in my sides, it all goes away after 3-4 days. Any thoughts folks.
Headaches - is ANCA Coming Back: Happy New... - Vasculitis UK
Headaches - is ANCA Coming Back
Hi Nick,
Happy New Year to you. I would say it is very unlikely that your GPA has returned so soon after your Rituximab infusion. I would guess that your symptoms are just related to a combination of post Rituximab and the season. We all become lethargic over Xmas, eating and drinking too much, and not exercising as we normally do so our new normal routine has changed.
I have had quite a few aches & pains over the past few days so I am forcing myself to go out and play golf today to get some fresh air and exercise.
How many Rituximab infusions have you had now? I have had 4 infusions over the the last 2 years and am due to see my Rheumatologist on Monday to find out the next move for my treatments. I’ve read online that you normally only have 4 infusions and then possibly switch to another form of drug treatment?
Hi Dazler99 I think you’re right I feel a bit better today after starting to detox myself the pains are abating. I have had 9 infusions over 4 years. I can get my marker really low but can’t get into negative. After I had 5 that was going to be it but in May 23 my Renal Consultant said let’s do another year, then May this year she said the same but that’s definitely it now (I think) as far as I am aware there are no plans to put me onto maintenance therapy but what she did say was I will having blood tests regularly and if there is any significant change there will be some treatment along with the fact that I won’t be discharged for several years which makes me feel a bit more confident. On the fitness front you right about this time of year, I managed to get on my new pushbike on Christmas Day and went out for a power walk on Saturday but that’s about it. Nick.
Glad to hear you are on the mend.
When you say get to negative do you mean your ANCA reading or the PR3 reading?
I’ve had negative ANCA readings for quite a while now but the PR3 reading has been about 2 which apparently shows the disease is still active.
Yes sorry Dazler99 my PR3 is about 2.5, Nick
Hi Nick
Happy new year to you too. I agree with Dazler99 I think it’s highly unlikely you’re flaring so soon after your last infusion. From memory they take a while to kick in. I also think I had headaches when I was having infusions. Headaches can also be caused by neck pain. I hope you feel better soon.
Hi Mooka nice to hear from you again, hope you’ve had a good year, a bit up and down with me, Covid and the odd virus but did Movember and surpassed my target of walking 100km and managed 164km with treatment in the middle. Yes thanks for the reassurance, I think Rituximab may have something to do with it, it seems to get me in a different place every time. Another theory is one of my old Railway Chums bought me a bottle of Single Malt Whiskey for Christmas 2023 but I never opened it. On Monday I had a couple or four and that’s when started with the headaches. I have had something similar before with red wine that was aged in a cask, it doesn't seem to like me very much if it’s been aged in a barrel. Still feeling better and off to Malaga on Monday for 3 weeks to try and get some sun. Take care. Nick.
Hi Nick
I’m glad to hear that you’re feeling better. Getting away from this gloomy weather for three weeks sounds good. I’m of to Mexico at the end of the month. My first long haul since lock down. I’m still a bit nervous about COVID as I’ve yet to succumb. Congratulations on your walking. I had back surgery at the start of the year. It’s lessoned the pain but getting my legs working as they should is a work in progress. Nerves take longer to heal with the immunosuppression. Have a great time in Malaga and keep well.
Thanks Mooka, I’ll do my best. I’ve done a few long hauls since things improved, as you know I have had Covid 3 times, and all three have been caught I am 99% sure on public transport in the UK. We love Mexico, we were last there in 2019, we started in Mexico City and then went to Acapulco. Please enjoy! Nick.
A few thoughts to consider based on my experience (over 15 years):-
1. Symptoms of a flare are not always the same. I recently had a flare where the symptoms were completely different to the many flares I had had before. I had to jump through a lot of hoops to convince my consultant that it was a flare but was finally vindicated (I have had the same consultant over all the years so he knows me well)! Blood markers are one of the guides used.
2. I only get prescribed Rituximab as the result of a flare - it is never used on me as a maintenance drug. My consultant worries that using it regularly may cause it to become ineffective - which would then give me problems as, to date, it is the only thing that truly seems to work for me.
3. Even though RTX takes time to be effective I would certainly get your bloods done to see what the critical markers are - if higher than before your infusion it may be worth investigating?
I hope these thoughts are useful.
Really useful points pwc51. It’s a good idea
Unfortunately alcohol (and all the other Xmas comestibles) have inflammatory affects. Hopefully the anti-inflammatory Mediterranean diet whilst enjoying the beaches of Malaga will calm things down.
As someone in remission, my consultant checks me every six months with the proviso that I call sooner if I think things aren't right (joints, sinuses etc). I keep an eye on my resting heart rate and urine colour as they "knew" before I did that something was wrong.
Thanks eh66, I like you check my resting heart rate, BP and Oxygen levels at least twice a week. My resting heart rate is 60-65, BP is around 125/75, and oxygen levels 97-99% and they haven't changed during this spell, as I sit watching telly this afternoon I feel like I did yesterday but today not taking any paracetamol and I am confident it’ll improve again tomorrow but Christmas for me is now over with and I am not taking any alcohol and back on the low carb lifestyle and although it’s blooming freezing I managed to get a 4 mile walk in today which helped to get that circulation going. Thanks for your help again.
hi Nick
Nothing to add except to wish you Happy New Year.
We are recovering from flu which definitely put a stop to festivities!
Interestingly from another site found you can buy Tamiflu from Superdrug after answering a few questions.
Hi Main1234 long time no hear. Hope you improve. I am nearly there now. What is Tamiflu)
It’s given to shorted the effects of flu I believe.
We are both recovering but left us tired.
Enjoy your holiday
Thanks Main1234, it’s going to be cold up here in North Yorkshire just trying to decide to whether leave the Central Heating on low constant or giving it a blast in the morning and at night on timer
upset stomach 
ANCA-positive and MPO - OR???
ANCA Antibodies
How high is high with an ANCA result?
