Ever Elusive Remission: Everyone is so... - Vasculitis UK

Vasculitis UK

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Ever Elusive Remission

irishponies profile image
39 Replies

Everyone is so supportive in this group! Thanks!

I admit to being jealous every time I read "I am in remission". I myself, am NOT in remission.

Meds: Prednisone 5 mg daily (20 mg in Aug 2021 through March 2022 - almost no taper just reduced to 5 due to side effects) Methotrexate 20 mg since Dec 2021; Rituximab infusions - 2 - June 2022

No improvement in labs since August 2021. NO IMPROVEMENT NO REMISSION with 1 year of treatment.

Seeing rheumatologist Monday. I am beyond discouraged. The ANCA vasculitis does not respond to treatment. But, I do have lovely side effects from said treatment. More importantly, the disease is wreaking havoc. I am at a loss as to what to try. The pain level reached a 12 two weeks ago. I can barely walk to the bathroom, it feels like little rocks are in my legs, calves, thighs, knees, hip, elbows, wrists. I remember 2 months ago I walked 4.5 miles every day. Now it is agony just sitting or laying down, forget about walking! The lowest the pain has gotten is a 7. I am afraid that if I go for a walk and collapse, I'll end up at a hospital full of doctors that have NO IDEA what they are doing. I am terrified of this thought and stay isolated.

This is NOT the same pain as the periphery neuropathy (controlled by gabapentin 400 3x day).

Note: ultrasound last week - kidneys appear good

Yes, I have had second and third opinions, biopsies, MRIs, etc. It is multiple types of ANCA vasculitis, symptoms: skin, ear, lungs, cardiac, nasal crust, digestive, eye, neuropathy, Raynaud's, etc..

Bonus to ANCA, I have Schamberg's Disease: I have 100s of blood capillaries that spontaneously burst on my arms, legs, and torso and blood leaks under the skin in pools the size of an American nickel. They are BRIGHT RED and there are a few new ones daily. People comment on them. Several have now burst on my neck. The hematological oncologist said there is nothing they can do about them and if I can achieve remission with the ANCA the bursting sports may or may not slow down. The spots may or may not get reabsorbed in 3 to 5 years but every day there are more. It is horrifying to me, grotesque. I feel like I am dissolving before my eyes as the blood spreads under my skin.

Anyone have a different idea? Anyone try medical marijuana for the pain? I am getting desperate.

Thank you for reading this mess. I really didn't want to ruin anyone's day. Sorry.

39 Replies
Grizzly-bear profile image
Grizzly-bear

Really sorry to hear this. Sounds like a horrible experience and sounds like you should have had your meds changed quicker if you weren’t responding.

Rituximab is immediate in your bloodstream but takes months to work it’s way into your tissue, so it is potentially too soon to say whether it’s working or not yet.

Cyclophosphamide works for most but has more risk of malignancy than rituximab. When I had my induction therapy a year ago I was on IV methylprednisolone (100mg for 3 days), then was on 60mg Prednisolone and reduced down over months, I had a round of cyclophosphamide and then 2 lots of rituximab, the rituximab every 6 months. For me the high dose prednisone helped with my joints (I couldn’t move before I got it in high doses), and the cyclophosphamide initially helped, but it took months for rituximab to stabilise me.

Everyone has a different experience and I hope you find something that works for you, but there are still other treatment options that haven’t been tried yet, and hopefully your consultant will look at all avenues for you.

This forum is all about sharing and complaining as much as it is sharing breakthroughs and high points. I don’t think any of us need to apologise to each other for sharing the lows and complaining, it’s a horrible illness.

Maybe someone else can comment with better advice than me. I just think if something isn’t working for you, they need to keep trying, but I’ve still got hope for you that rituximab is just a bit slow to get into the tissue where the vasculitis settles in and is reluctant to move!

irishponies profile image
irishponies in reply to Grizzly-bear

Thanks Grizz - I want to have another rituximab 4 months from the 1st, not the scheduled 6 months. I understand how it takes a long time but right now, I cannot walk...I'm in BIG PAIN, constantly, with no relief. It has been 2 years of symptoms and 1 year since the diagnosis. Please - doctors, help. I'll let you know how the appt. goes...Thanks again.

Grizzly-bear profile image
Grizzly-bear in reply to irishponies

Sorry to hear this. Another dose of rituximab but also cyclophosphamide really does bring people into remission, especially for those who are rituximab non-responsive. It also works a lot quicker than rituximab.

irishponies profile image
irishponies in reply to Grizzly-bear

No other treatment was offered. Referred to pain management specialist. Thanks.

irishponies profile image
irishponies in reply to Grizzly-bear

Hi Grizz, The Pain Management Specialist said, "Sorry. I can't work with you because you have ANCA-vasculitis and too many other vascular diseases. Talk to your rheumatologist." The rheumatologist sent me to the pain doctor! Shortest appointment ever, maybe 2 minutes...never discussed anything. Rheumatologist has now ordered new labs in 1 month. Thanks Grizz

Grizzly-bear profile image
Grizzly-bear in reply to irishponies

Ugh I’m sorry, it’s so frustrating. I hoped that after diagnosis we’d be listened to but apparently not. I only saw one rheumatologist and he misdiagnosed and dismissed me. Odd thing to say but going into kidney failure actually worked out for me because the nephrologists I’ve met all seem to be better to talk to about vasculitis and seem to actually care.

ElaineRH profile image
ElaineRH in reply to irishponies

Hi, I too am not yet into remission. I am on the mycophenolate 1500mg twice a day, benralizumab every two months and still needing high dose steroids. ( it was noted the oral steroids in tablet form are not very effective for me to have to have either IV or betamethasone solution) The pain without the steroids is so bad I can barely function and my whole body is inflamed with lots of fluid retention. I had one attempt at a biosimilar to rituxumab a couple of weeks ago but had an anaphylactic type reaction to it. Next plan to try the genuine rituxumab as may be better tolerated. And then if no luck cyclophosphamide I think as others has said you really do need to be seen by a specialist who knows about EGPA specifically. Like you each day is a constant battle BUT I have always kept myself fit for my lungs and have been told often that’s why I am still alive. Lung function off steroids is down to 27% now and 35% on steroids. I still work ( I run two businesses- one is exercise rehabilitation) and would urge you to try to exercise often if you can. Is doesn’t have to be continuous exercise to have an effect… can be done in bite size sessions. Good luck and hope you get sorted soon

irishponies profile image
irishponies in reply to ElaineRH

I was a professional athlete and have maintained an extreme fitness regimen for over 35 years. I can barely walk across the room now (since June). I swim 30 laps EVERY single night but cannot walk. Thank you.

Grizzly-bear profile image
Grizzly-bear in reply to irishponies

If you’re still this bad in a months time when rituximab should have done something (even just small signs of improvement) then I’d suggest asking for cyclophosphamide. It’s not a pleasant drug (it’s chemo), but you’re closely monitored.

irishponies profile image
irishponies in reply to Grizzly-bear

Hi Grizz, it was not offered, NOTHING was offered but a referral to Pain Management 9/22 and more labs in 1 month.

zoe69 profile image
zoe69Administrator

It seems that your vasculitis wasn't treated properly from the begging, making your journey much harder.Rituximab needs at least 2 months to fully work, so depending on when in June you had your second infusion results will be seen in the next few weeks. Usually though it is given in combination with higher dose of steroids.

If Rituximab doesn't work, your other option is cyclophosphamide. Six infusions over 3 months plus high dose of steroids (or if you are eligible Avacopan).

irishponies profile image
irishponies in reply to zoe69

The last infusion was 10+ weeks. Rheumatologist said the disease is not responding to any treatment. No response and increasing in symptoms. No treatment offered but pain management specialist referral, I went from a 3 in pain level to a 10. Thank you for responding.

irishponies profile image
irishponies in reply to zoe69

Hi, I didn't do so well with the pain doctor. The Pain Management Specialist said, "Sorry. I can't work with you because you have ANCA-vasculitis and too many other vascular diseases. Please talk with your rheumatologist." The rheumatologist sent me to the Pain doctor! Shortest appointment ever, maybe 2 minutes...never discussed anything. Rheumatologist has now scheduled labs for 1 month.

Corcaigh profile image
Corcaigh

I have Wegeners/GPA since 2010, lungs and sinuses initially, very slight trace in kidneys. I was induced for 18 days due to severity in lungs, received 6 X cyclophosphamide over 6 months with high dose of prednisilone and the rest. Flared in my kidneys in 2019 from a Prolia injection. Again received cyclophosamide tablets while waiting for rituximab. If nothing is working I would've thought that cyclo would be used as Zoe69 referred to above. I live in Ireland. Hope things work out.

irishponies profile image
irishponies in reply to Corcaigh

Thanks for responding.

Nadine99 profile image
Nadine99

This is a long term disease and you seem to be at the early stages of your journey. You need to find a specialist in Vasculitis to help you map out a plan. As an example, my husband has had GPA since 2010 and has only recently found he's in remission. He still has horrendous pain and can't walk, so yes it's hard but you need to find someone better to treat you.

irishponies profile image
irishponies in reply to Nadine99

There are NO other specialists within 350 miles. I have seen the 3 within 65 miles that treat this. Two have retired. There is NO one else. I have had vasculitis at least 3 years and still not in remission, quite active. Thanks for responding.

Mooka profile image
Mooka

I’m sorry to hear you are still suffering so badly. Did the pain get worse when you reduced the prednisone? Steroids do tend to cover over pain and a sudden drop wouldn’t help. As Zoe69 said Avacopan has been approved here as a replacement for steroids. I don’t know if that would be available to you.

irishponies profile image
irishponies in reply to Mooka

No, avacopan has not. No other meds were offered., I have been referred to a pain management specialist Thursday for painkillers. Prednisone was reduced in March 20 to 5 mg. Pain got worse then leveled off. Now its crazy. Thanks.

Mooka profile image
Mooka in reply to irishponies

I hope pain management can help you. I would mention the drop in steroids to them though.

irishponies profile image
irishponies in reply to Mooka

Hi Mooka, The Pain Management Specialist said, "Sorry. I can't work with you because you have ANCA-vasculitis and too many other vascular diseases. Talk to your rheumatologist." The rheumatologist sent me to the Pain doctor! Shortest appointment ever, maybe 2 minutes...never discussed anything.

Mooka profile image
Mooka in reply to irishponies

That is awful. I hope your rheumatologist can step up or find someone who can help. I see a pain management doctor for my back. She does often mention that it’s hard to know whether it’s my stenosis or vasculitis causing the ancillary pain but she still treats me.

irishponies profile image
irishponies in reply to Mooka

Hey Mooka, The search continues! I may whine but I keep on going! There is definitely a which disease is causing pain conundrum because they respond to different pain meds. I'll keep you posted, please stay in touch!

irishponies profile image
irishponies in reply to Mooka

Hi Mooka, I sent a comment to Grizz but I wanted to share it with you (and everyone that is interested/curious). Grizz posted a chart, check it out below.

I wrote to Grizz about the chart:

I studied it, it is EXCELLENT. I am having it tattooed to my forehead for future reference, mine and the doctors. I noticed the chart did not discussed overlapping/simultaneously occurring diseases but it is from the Lupus Foundation (?) so it focuses on that one disease. It remains an excellent tool. I printed one out to bring with me to appointments.

The chart does cement something I was thinking (there's a correlation for you: cement and thinking). With my multiple diagnoses, I think there is a disease lurking they we have not found yet, as I am "not responding to any standard treatment protocol" to quote my doctor's note. When I reread the 19 page note (10 pages of labs, tests, redundant stuff) from the last appointment, the doctor also thinks there is something else going on, too. The doctor suggests a referral to a large facility such as the Mayo Clinic.

As I say, "This sh*t is getting real," I am strongly considering the referral to a BIG hospital, such as the Mayo Clinic or Cleveland Clinic or Johns Hopkins for clinical research in the vascular/neuromuscular departments. I downloaded the application to the Cleveland Clinic yesterday and I'm sure my rheumatologist will fill their portions out... A change of scenery would be nice...

I'll keep thinking and hope the cement in my head (haha) doesn't cloud my judgement too much.

Stay in touch, thanks.

Mooka profile image
Mooka in reply to irishponies

Sounds like a great choice to be referred to a big hospital. They should have much more expertise that your current rheumatologist. A great chart too from Grizzly-bear. Never hurts to step back and look at the whole picture. I’ve been guilty of not doing this myself. My immunologist is great at doing so but I’ve not seen him since before the pandemic. I hope you get your referral through quickly and you can start heading in the right direction. Full marks to you for staying so positive after your knock back from pain management.

irishponies profile image
irishponies in reply to Mooka

Thanks Mooka! I'll find another pain doc, have to...

Angels54 profile image
Angels54

Hi , I have just experienced all the pain of not been able to walk , all joints in pain , I went to hospital and had infection which I wouldn’t of known about , also injected which you shouldn’t but how do you know you have infection? - I have been using Mountain blood , you only put a dot in warm milk , check out before you use it , you can get it off Amazon, read upon it , im hoping to inject again on Friday. , listen to your body test when you have to , hope you pickupsoon🤦‍♀️

irishponies profile image
irishponies in reply to Angels54

Thanks!

eh66 profile image
eh66

Sorry to hear about your condition and I probably one of those who mention "I am in remission" though I do mention it as a source of hope. In my case that is how my consultant sees it and in general I lead a pretty normal life though I still have to have six monthly rituximab infusions as my antibodies are still raised. However rolling back to Xmas 2020, I was hospitalised unable to walk. Once diagnosed I was given cyclophosphamide and rituximab together twice in the space about 6 weeks. A knockout blow for Vasculitis. I also took a tapering dose of Prednisone for about 3-4 months. I still have to a statin, blood pressure and co-trimoxavole, and have 6 monthly infusions - a small price to pay.

I don't know where you are living but in the UK we do have some centres of excellence for Vasculitis and I would be tempted to ask for a referral. Outside the UK I would try to find a University/research hospital with an interest in Vasculitis, as your current protocol is not working.

Keep complaining and sharing and we'll keep listening.

irishponies profile image
irishponies in reply to eh66

Please see my post regarding "teaching hospital". Thanks for responding.

eh66 profile image
eh66 in reply to irishponies

I feel your pain, that just so unprofessional, and fortunately not my experience. The Edinburgh University unit from my perspective is research rather than teaching focused. I don't know how that compares with your situation. Last time I was in for an infusion they took extra bloods (an armful 😀) and hitched me up to a small portable blood pressure monitor for 24hrs for the research team.

irishponies profile image
irishponies in reply to eh66

UGH!!!

citygirl1234 profile image
citygirl1234

Sorry to hear this. I can understand how fed up and exasperated you feel.

I was diagnosed in 2019 and have also not made it to remission yet but I’m fortunate to have a less aggressive version of GPA. It is frustrating to be so many years down the line and not be in remission, but I don’t think it’s ever an easy path to remission. When flaring I asked my rheumatologist flat out if this was as good as it gets and he said “I hope not, you’re not in remission but you are improving, so you should get there but not overnight”. It can be a bitter bill to swallow sometimes, especially when you can’t see any immediate improvement, but things will improve. Rituximab works well for most people but you might need cyclophosphamide.

Being diagnosed with ANCA vasculitis is a big thing, so talking to people about it is really important, as it is a lot to come to terms with.

That sounds horrific and the Shamberg’s honestly sounds like the icing on the cake.

Does your specialist work at a hospital with an inpatient unit? I know it’s not ideal, but you may need to be admitted there so your specialist can get to the bottom of this and monitor you or give you a steroid infusion. If I need to go to A&E (ER) I only go to the one at the hospital where my specialist is based, so I know there is at least one person in the hospital who knows how to deal with GPA.

For the pain, it sounds like you really need a referral to a pain clinic. That level of pain isn’t normal and they need to help you find a way to manage that. I don’t know about medical marijuana, never tried it, but if your doctor says it’s fine it may be worth a shot.

I hope you feel better soon, and honestly rant away

irishponies profile image
irishponies in reply to citygirl1234

Hi, Thanks for the support. I've considered the emergency room but I'm TERRIFIED some idiot doctor will "diagnose" me with something...I'll be stuck there. The Pain Management Specialist said, "Sorry. I can't work with you because you have ANCA-vasculitis and too many other vascular diseases. Talk to your rheumatologist." The rheumatologist sent me to the pain doctor! Shortest appointment ever, maybe 2 minutes...never discussed anything.

Grizzly-bear profile image
Grizzly-bear

Saw this on Twitter about when treatment for autoimmune conditions aren’t working and the path that should be followed. This was posted by a medical consultant and sometimes I find when mentioning things other consultants have said when meeting doctors they listen more than if it’s just coming from me.

Description of the process to follow if treatment is not working
irishponies profile image
irishponies in reply to Grizzly-bear

THANKS!

irishponies profile image
irishponies in reply to Grizzly-bear

Hey Grizz, Thanks so much for the chart. I studied it, it is EXCELLENT. I am having it tattooed to my forehead for future reference, mine and the doctors. I noticed the chart did not discussed overlapping/simultaneously occurring diseases but it is from the Lupus Foundation (?) so it focuses on that one disease. It remains an excellent tool. I printed one out to bring with me to appointments.

The chart does cement something I was thinking (there's a correlation for you: cement and thinking). With my multiple diagnoses, I think there is a disease lurking they we have not found yet, as I am "not responding to any standard treatment protocol" to quote my doctor's note. When I reread the 19 page note (10 pages of labs, tests, redundant stuff) from the last appointment, the doctor also thinks there is something else going on, too. The doctor suggests a referral to a large facility such as the Mayo Clinic.

As I say, "This sh*t is getting real," I am strongly considering the referral to a BIG hospital, such as the Mayo Clinic or Cleveland Clinic or Johns Hopkins for clinical research in the vascular/neuromuscular departments. I downloaded the application to the Cleveland Clinic yesterday and I'm sure my rheumatologist will fill their portions out... A change of scenery would be nice...

I'll keep thinking and hope the cement in my head (haha) doesn't cloud my judgement too much.

Stay in touch, thanks.

Vo321 profile image
Vo321

Hey irishponies,

You're not ruining anyone's day... if anything, you're helping many other warriors feel less alone in their health journey! Thank you for sharing your current experience with fellow Vasculitis warriors like myself. Sending you much love and speedy healing!

❤️

Vo321

irishponies profile image
irishponies in reply to Vo321

Thanks Vo!

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