Biologicals have weakened my immune system and now ha... - NRAS

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Biologicals have weakened my immune system and now have a fungus (aspergillus) growing in my sinuses - now need SURGERY to Scrap it out!

Troygirl profile image
11 Replies

Biologicals have caused me to have a fungus (aspergillus) growing in my sinuses!

I have to have sinus surgery next Tuesday in the hospital under general anesthesia to get it all scraped out!

Lovely!

Been on biologicals for two long years and STILL the Dr cannot find the correct one to stop my endless flaring. (Currently on IV Infusion Acterma 2 months so far and nothing changing)!

Every single day for the past 8 months has been a nightmare with RA flares and now this!

So much Prednisone I now have Cushingoid on top of everything else!

If I cannot take Methotraxe OR even Biologicals what is the next treatment step? Anyone know?

I need some relief!

I am getting ready to jump off the bridge (not really but you know what I mean)!

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Troygirl
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11 Replies
wishbone profile image
wishbone

Tell me where and when and we can hold hands and jump of that bridge together! ;-) I broadcast it enough, so you probably know that I'm also fed up of getting one thing after another over the past couple of months. I can empathise about not being able to take meds too, and think my rheumy is pretty much flummoxed if I can't go back on my current med. :-O That op doesn't sound very nice, but at least you can have a general anaesthetic and it will hopefully sort out those sinuses.

Good luck

I

crashdoll profile image
crashdoll

Another one on the bridge but urging you and wishbone not to jump because we can get through this together. I don’t have any answers but I do know you’re not alone.

I am in a similar position with constant chest infections and sinus infections. They don’t know what to do with me and so, I don’t know what to do with me!

Hopefully after the surgery, it’ll settle and you’ll have a plan to move forward? Hope it goes as well as these things can be.

wishbone profile image
wishbone in reply tocrashdoll

I might back down!...it depends on what my GP has to say in precisely 1 hours time. :-O

helixhelix profile image
helixhelix

Oh yuk! Just what you don't need. Here’s a link to a tweet with image of aspergillis, which is quite pretty so might make you feel better about having it decorating your sinuses?

mobile.twitter.com/csironew...

But people are working on solutions for you, here’s an extract full of tech speak so not for you necessarily to read it but just to see that someone, somewhere is thinking of you......

Don’t go near any bridges!

Despite the efficacy and increased number of biologic therapies available it has been reported that the ACR70 response rate to a second biologic is of 5–15% and the DAS28 remission is reached by 9–15% of these patients, leaving the proposed treatment targets clearly unmet.

Many exciting new biological agents are in development for the treatment of RA. Inclusion of selected patients that became refractory

to all approved biologics in ongoing clinical trials according to clinical judgment can bring potential benefits for disease control. For example new cytokine antagonists, namely blocking IL6, IL17 and GM-CSF are being studied. Other anti-CD20 antibodies including the fully human ofatumumab and the humanized ocrelizumab and veltuzumab are in phase II/III trials [89–91]. Neutralization of the B cell survival and activation cytokines BLyS (or BAFF) and APRIL is an approach that is in development, despite the disappointing results obtained with atacicept (which blocks both BLyS and APRIL and could therefore reversibly suppress B cell function across maturation stages). Sig naling pathways including NF-kB and p38 MAPK pathways are being targeted by small molecules, as is also the case of JAK and Syk kinases [92,93]. Possible complementary approaches arresting the effects of inflammation in bone metabolism such as inhibiting osteoclast differentiation are particularly attractive.

The treatment potential of using stem cell transplantation (SCT) for severe refractory RA patients at risk of high mortality and previously to irreversible damage should not be forgotten. SCT is relatively well tolerated by most of the patients, with transplant related mortality after 100-days of 1% and a general survival of 94%. It is associated with improvement of disease activity and function and inhibition of joint destruction. Peripheral blood is the most commonly used source of stem cells and autologous transplant preferred. High doses of cyclophospha- mide led to superior disease control than lower doses [95]. Relapses are however rather frequent with a progression-free rate of 23% at 3-year and 18% at 5 years and DMARDs such as MTX, cyclosporine and rituximab are required to maintain disease activity controlled [96]. Since the advent and broad use of biologic therapies SCT has indeed become less commonly used for RA treatment as compared to other rheumatic diseases, such as systemic sclerosis, reflecting the increase of treatment options, but it can still be considered as a salvage treatment.

Furthermore, mesenchymal stromal cells (MSC) have showed in vitro and in vivo anti-proliferative and anti-inflammatory properties that support the rational for their use in inflammatory arthritis [95]. MSC effects on collagen induced arthritis models have been contradictory, but their potential immunoregulatory effects might be translated into a valuable therapeutic approach.

nejm.org/doi/full/10.1056/N...

Troygirl profile image
Troygirl in reply tohelixhelix

Thank You!

Troygirl profile image
Troygirl in reply tohelixhelix

OMG. That picture of aspergillis is pretty neat!

AgedCrone profile image
AgedCrone

Don’t worry about that op......before laser surgery fixed my sinus infections I had it regularly....& I hadn’t been anywhere near Biologics back then.

That was was back in the 1980/90’s......it wasn’t too awful then, so I’m sure it’s much better now.

Hope it goes well.

You'll feel loads better after the operation.

Troygirl profile image
Troygirl

Thanks everyone!

charisma profile image
charisma

Hi Troygirl

I am receiving my first Amgevita (Humira biosimilar) today. I told the RA nurse at my pre biologics appointment that I had read about possible nasty internal fungal infections due to taking that kind of drug.

It was not apparently a problem, just told ‘we’ll keep an eye open for that’.

I found a link to natural ways to help the body fight back, might find it helps in conjunction with the right removal treatment:

healthyliving.azcentral.com...

My injections arrive early afternoon. I can’t say I am excited to be about to subject my immune defences to such treatment; like removing the firewall and anti virus and anti malware from a PC!

Good luck with getting free from the fungal infection.

Troygirl profile image
Troygirl

All These RA drugs suppress our immune system. Please don't let them tell you it isn't a problem...because it IS!

I never ever, ever had any sinus issues ever my whole life (59 yrs), let alone fungus growing up in there until I started putting these biologicals into my body!

I was on Humira the longest!! 7 months. Did not even work to combat flares! Also it made my muscles in my whole body feel like wood and had terrible, terrible full leg spasms that lasted way longer than your standard "charlie horse" They were full leg, lasted longer & deeper! But that was me, maybe it will be different for you.

Good Luck!

Just "keep an eye open for that"

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