Hi guys, I’m on a prednisone taper while I wait for my rituximab (date tbc). The issue here is previously every time I lower my steroids I end up in hospital. I been 4 times in the last 9 weeks 3 operations spent a total of 5 weeks there. My case is rare as it affects my prostate. Urulogy do a short term fix, they can’t administer the rituximab.
Rheumatology aren’t on site to do it, even my drip I will have to travel to a different hospital. My question is did anyone else stay on the high dose until they had rituximab. I don’t want to end up back in hospital. My consultant is happy for me to control my own dose of steroids. Thanks
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What dose are you on and a) how long have you been at that dose, b) how far can you reduce before disaster strikes and c) how long will it be before you can have the infusion?
I’m on 60mg, I dropped it by 5mg after 2 weeks and ended up in hospital with urethera irregularities and massive blood clots coming out. That was my most recent trip. I reduced it again by 5mg and now nothing can touch that area. Urulogy and rheumatology agree it vasculitis related. However it doesn’t make sense to be reducing when the only thing keeping it calm is the steriods. Infusions will be confirmed this Thursday. It’s my first conversation with the administrating nurse. I don’t know how it works.
Sounds as if you don't have much choice! And if they want you off pred, they will have to pull their fingers out with the infusion!
Patients with GCA (giant cell arteritis) are often started at 60mg or even higher and are often on that dose for a couple of months if the symptoms aren't improving. One approach used with GCA is a 3-day pulsed infusion of up to 1000mg each time then reducing to 60mg for a month then reducing by 10mg per month. So you sticking at 60mg for 2 or 3 months isn't going to take you above that sort of total dose. Obviously it isn't ideal but needs must.
Nothing I can’t deal with, reduction in hearing. Some aura in the eyes, but the extreme side affects of the reduction is worse.
Initially had a abscess(biopsy done, confirmed the vasculitis) in my prostate. I was catheterised from April until July. TURP operation came home things were good reduced steroids. Abscess in the mucus gland in the rectum 10 days later. In theatre again cleared. 7 days later back in with puss coming out of the urethra. In the theatre, double catheterised. Found a connection fistula so hoping the catheter would help this heal (it has based on the MRI) 2 weeks later while on 55mg was on 60mg for 2 weeks. Non top bleeding from the urthera, two blood clots come out. Still bleeding and MRI now shows irregularities in the urethra. Currently on 50mg and no longer able to touch the penis. The tapering is clearly making things worse. My question now, is 60mg too low.
Ah well - that's something to discuss with them. That sounds horrendous - and my daughter is complaining about 3 weeks of a catheter! I wouldn't be asking if I could go back up the dose.
If you find you are gaining weight - cut carbs, drastically. In fact, cutting carbs is probably a good idea to reduce the risk of steroid-induced diabetes. It can happen quite quickly at those sort of doses and you've enough problems already.
I’m not putting on weight. I’m losing weight even though I eat more and can’t move much. So food isn’t an issue. I think going back up and sticking at 60mg is key then. If I go up by 5mg and feel the difference then coming down is not the way
Who is controlling the Prednisone? Is it your Rheumatologist or urologist? If it isn't the Rheumatologist I would consult with them. They may be more incline to keep you at the higher dose until you can start the Rituximab. Even starting the Rituximab it may take time for it to start working and you may have to stay on the higher doses of the Prednisone. Some doctors immediately want you to taper because they don't like people on higher doses but a Rheumatologist may keep you there. If every time you taper you end up in the hospital it is obvious you need to stay on the higher dose. With my Behcet's Vasculitis it would cause lesions and aneurysms in my mesenteric arteries. I would have to be hospitalized and bombarded with intense steroids and then come out and stay on 60mg of Prednisone. Only after I did 6 months of cytoxin chemo was I able to come down on the dose of Prednisone and then finally able to start Remicade. I am telling you this because my Rheumatologist regulated all of this and the doctors in the hospital couldn't get it right until he finally stepped in. If your Rheumatologist is already the one telling you to taper then advocate for yourself to stay on the higher dose. That's just what I would do. I am so sorry you are going through this.
Thank you so much it is the rheumatologist who is asking me to taper but Is allowing me to control it too. I’m increasing my dose and speaking to them today.
Make sure you are being seen at a centre that specialises in Vasculitis. With all these admissions etc getting your Ritiximab asap is v important. Be very aware high dose steroids over a long time can cause serious problems. Your rheumatologist needs to get things sorted out for the ritiximab asap
Thank you, I’m based in wales which means it’s not easy to get transferred. My consultant has agreed the rituximab. I’m waiting for the confirmation date of when my first infusion. Ideally you want it to start straight away but I’m not sure it works like that?
North or south? Apparently there is a very good vasculitis person in the renal unit in one of the northern hospitals - can't remember the name off-hand though.
Unfortunately South Wales, my nearest hospital is Gwent and that’s where my rheumatologist is based just not on hospital site which makes it extremely difficult
No - I live in northern Italy! I have a friend in SW with lupus and she has been waging a campaign to get rheumatology care - I started to write better but she, as a complex lupus patient, was put under a "GP with a special interest" as adequate care. He promptly moved but no-one told her. I don't call that rheumatology care in the first place! She has been travelling to London and paying privately ...
You need to push for yourself. Are you being treated at the main hospital in Cardiff?? Call the vasculitis uk helpline. Early good care is essential to prevent irreversible organ damage. Ritiximab takes a while to work so the sooner you start the better etc
I’m in the newport hospital. Agreed the rituximab just waiting for confirmation on when I start the infusion. I’m not sure how I can get them to work any quicker unless I end up back in hospital and refuse to leave.
Phone vasculitis uk helpline urgently. It is really important to get the treatment asap. I doubt that it has a vasculitis centre. Most rheumatologist are NOT vasculitis specialists. Ask the Drs can they document that you requested that they speed this up you can ask them to confirm in writing that the delay will not lead to permanent organ damage and if not can they speed up your treatment.
I agree PMRpro. My new rheumy arrogantly told me I had seen two rheumatologists (same hospital) who are experts in vasculitis. I am having severe symptons and because the steroids have caused my bloods to change to only mildly positive anca they have both told me I can be reassured everything is ok. I know its not. This is at a specialist hospital too.
I’m sorry to hear that, it’s clear that we have to learn quickly about our own disease and really push for the best. Although I been through it and we all have. I’m happy my consultant although not specialist is open to me controlling my own medicine and taper. I spoke to her today and she said it’s ok to go to 60mg and you can stay on this until we have the first 2 infusions. Which have been confirmed for next week and 2 weeks later. It seems like things are falling in place. Then it’s just waiting for remission and start the taper. Hoping there isn’t any organ damage.
Seems to me that you are really new to all this to be expecting you to have so much input into reducing your steroids. When I have been on steroids and have some problems the dose would be increased or kept at a high level to help the body deal with all that’s going. I agree with AmyS1 give the helpline a call. I know they have helped people in SW before that aren’t getting the treatment they need. Good luck I hope the rituximab helps you soon.
Thank you, I’m staying positive in the sense the treatment has been agreed and it’s just the date. But my main concern is permanent organ damage. Fingers crossed I get the date soon
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