What is going on?

[Bloom]

Dear all,

I hope someone has had a similar experience. I had Rituximab in December and over the last two months my symptoms seem to have returned. My consultant said I needed more Rituximab but it might take a few weeks because of funding issues.
I have had cyclo, methotrexate, and have been on prednisolone for nearly two years, when I was told to increase the dosage in May to 20mg having been on 10mg, I became very irritable (pred usually makes me more cheerful!) and very hyper. According to one Dr I saw last week, this is quite common in older peops. I was told not to go over 12.5mg if possible.

I can't manage on that, I'm tired achy and quite breathless at times, so I've been taking 13.5 or 14mg, which helps a bit but not much. I am not on anything else.

A couple of days ago, I began to have more severe pain in my head, muscles and joints and during the night, it became very painful indeed. My temp was 39. I increased the pred to 20mg , but didn't take an antibiotic because I wasn't sure I had an infection. I have gunky stuff coming from my lungs but this has been happening since I got three viral infections one after the other in April. I've had quite a few antibiotics this year, one as recently as a month ago. I had aspergillosis which I had Ambisome for in December.
I started taking doxycycline, I had some as a rescue plan. I felt a bit better today and have been doing stuff, this evening though, I became very shivery and cold and my temp went up to 38.7. I've had similar episodes before but not really since I started treatment. I had forgotten how much it hurts! You can tell me I'm just being a wimp, that's OK!

I used to cough up a lot of blood before but I seldom do now.

Best Wishes

Bloom

[Pete]

From what you' eve described, I would guess (note--I'm not a doctor) that you have some sort of infection going on. The fevers and the phlegm should be explained to a doctor. Good luck!!

[Bloom]

Thanks Pete. I guess it must be infection. In the past when I've had these episodes, I've usually always had a cold before, but I didn't this time. I did read recently that Rituximab is associated with a greater incidence of infection than cyclo, which is surprising, but has been the case for me.

[Alysia]

I dont know what's going on. I think you need to contact your dr. and ask him. Sending prayers.

[BenHornsby]

Hi Bloom

Can you let us know what RTX amounts your on an how often?

I am having 2 infusions every 4 months 2 weeks apart, the infusion is normaly 6-8 hours long and around a 1L of it I think, need to check that... I was every 6 months, but start to suffer in month 5 so they gave me more.

On the pred I have to hit 40mg + to help me, we are all different and react differently and i am using 50mg a day at the moment as in a flair. But have not used it for 18 months, i got told to go in fast and hard with it and then a very slow decrease pending how long you have been on it for. Again please ask your doctor about amounts and use of pred...

Ben

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[seied]

I'm not a doctor, but it seems to me that they are not doing a good job at managing your illness and flare ups.

Each flare up causes symptoms that represent the organ undergoing damage by the immune system.

That's why it's important to tackle it immediately and avoid doctors that are guessing and misdiagnosing because they are probably not protecting you from the main risk of GPA, again which is, organ damage.

You don't want to get to the point where you're coughing blood, need dialysis, kidney transplant, joint and tendon atrophies, punctured lungs, etc. This happens because the immune system was allowed to attack these organs and tissues for far too long. And, it doesn't take more than a couple of days for tissue to die. GPA kills tissue by interfering with the blood circulation in the small capillarities, thus starving your organs of oxygen and nutrients.

Don't expect the doctors to look after you and your wellbeing, unfortunately it's on us to make sure that they do.

I'm new here and only 3 months into this GPA thing, so everyone please correct me if I'm wrong.

Best of luck.

Ed.

[MikeG-2012]

I'm not a doctor, but it seems to me that they are not doing a good job at managing your illness and flare ups.

Each flare up causes symptoms that represent the organ undergoing damage by the immune system.

That's why it's important to tackle it immediately and avoid doctors that are guessing and misdiagnosing because they are probably not protecting you from the main risk of GPA, again which is, organ damage.

You don't want to get to the point where you're coughing blood, need dialysis, kidney transplant, joint and tendon atrophies, punctured lungs, etc. This happens because the immune system was allowed to attack these organs and tissues for far too long. And, it doesn't take more than a couple of days for tissue to die. GPA kills tissue by interfering with the blood circulation in the small capillarities, thus starving your organs of oxygen and nutrients.

Don't expect the doctors to look after you and your wellbeing, unfortunately it's on us to make sure that they do.

I'm new here and only 3 months into this GPA thing, so everyone please correct me if I'm wrong.

Best of luck.

Ed.


I could not have said it better myself Ed!!!! Thanks for the post!!!

[Bloom]

Hi Ben,

Sorry for the long delay. I had to come over to Australia for a family emergency, I live in the UK.
I last had Rituximab in December 2016. I had two doses a fortnight apart, I think I had about 1.5G, but I'm not sure. I had a lot of viral infections after and I think I developed a chronic infection. I had pneumonia in early September and had to have IV antibiotics. Afterwards I was given Septrin three times a week, although starting off a with a normal week's dose.
I was supposed to be having more Rituximab in September but because of the pneumonia this was put on hold. I am only on pred and struggling to keep it below 12mg. I am a bit scared to have more Rituximab because of the frequency of viral infections. I also had a constantly runny nose, which most of the time was muco-purulent, same for my lungs (coughing up stuff) although because there was no blood I thought it might be a side effect of Rituximab! I had about 4 courses of antibiotics during this time but none made any difference to these symptoms. After I had the IV antibiotics and Septrin it all stopped!
Maybe the Septrin will help if I have more.

Best Wishes

Bloom