Wegners granulomatosis

Hi To All

Been in remission for 2yrs but unfortunately im having the nose bleeds and very aching body. All was good untill

I was told to stop prednisolone 5mg to 2.5mg then stopped 6 weeks ago thats when everything went pear shaped , started at 80mg pred 2 yrs ago and now today im acheing all over. I would be interested in hearing from anyone and anyone who has had Retuximab treatment would be helpfull.

More cures, and less treatment i say☺

34 Replies

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  • And in the meantime a more realistic use of pred! Telling anyone to reduce their pred like that after 2 years is a bit steep and very likely to end in tears! I was at a rheumatology conference a couple of weeks ago - a VERY lively discussion was had about the use of corticosteroids from the point of view of the patient. I've been on pred for nearly 7 years, there is no option for me. Luckily I have realistic medics.

    Good luck with the next step.

  • Yeah thanks for your reply

  • It seems to me that a lot of people stay on the 5mg per day but obviously some do get off them all together. I would have thought you should have tapered off more slowly.

  • Yes i appears to be the general opinion of most that a more gradual lowered dose of pred is the way to find a happy medium for each individual.

  • Hi sorefeetsoldier,

    What other medications are you taking for the GPA, are you on Rituximab?

  • No not yet anyway although it has been suggested that i do. To be honest im not that keen on the idea .....lost confidence in the Health system.. i could write a book about things i have witnessed.

  • Hi, I think we all could!

    if you have only ever been treated with Prednislone for GPA then that's very unusual and against the current guidelines/ protocols. Do you see a Consultant who has good experience of managing and treating Vasculitis? Normally you would be treated with another immunospressant ( eg Methotrexate, Azathioprine, Mycophenolate etc ) before being taken off Prednislone.

    Rituximab has made a great difference to many patients with GPA, inducing remission and allowing them to come off all other meds, I wouldn't rule it out.

    You can always phone or e mail the VUK helpline for advice, I will post the link.

  • I am not on Rtx but I think you tapered your prednisolone away too fast. In your next attempt try to go down 1mg every 4-6 weeks, give your body time to adjust.

  • Yes that sounds about right . Why do they want people off pred altogether if it maintains remission...are thet additional health risks far greater than proven remission of an individuals condition????

  • I m on methyl prednisolone since last 6 months dose was started with 36 mg & now tapered to 12 mg. It takes time for body to adjust for lower dose.

  • Hi. Snap! I am going through almost identical problems as you. Mine too was diagnosed 2 years ago but was initially treated with cyclophosomide and 70mg of pred. I tapered down to 7.5 mg of pred without too many problems but from then on started developing frequent nose bleeds. My specialist nurse thought it might be caused by long term use of pred so has now precribed 5mg on alternate days only. Although the nose bleeds have become less frequent my body aches have become so bad I worry how I will cope with daily tasks if things get much worse (the muscles in my back, thighs and shoulders seem so weak and stiff its getting difficult to get out of chairs and get up and down stairs without suffering a lot of pain). I have been wondering if it could be caused by the reduction of pred. or if it was just an 'age' thing as I have recently had my 68th birthday. I am going to see my GP next week for a second opinion and if he feels it necessary I will try and expedite another appointment with my rheumatologist.

    Please let me know how you get on, and hope things get easier for you.

  • Hi Thank you for your reply.

    Funny how coincidental that like a lot of us after the pred reduction or cessation symptoms re occur and they blame something else !!!!!

  • Hi i received a phone call today from Doc and was told to start taking 40mg .i really dont want to but i suppose i must start the long journey again quite depressing and im an upbeat person but i feel its wearing me down. Sorry to hive you my woes . Im new here and i realise only the people on here really know what i mean as we are in the same proverbial ...boat. i took remission for granted and i thought i was a lucky one but alas...i too have succumbed to WG. I want to thank you for your consideration and hope you are feeling a wee bit better.

  • I'm experiencing exactly the same with regard to severe joint pain & recognise the problems you've had getting about. In fact currently my right arm/ shoulder are so painful that I've taken to painkillers & hot water bottles as I'm allergic to Ibuphofren. My Vasculitis was diagnosed 3 years ago & I've recently further reduction my Prednisolone to 2mg per day - In fact I hadn't experienced any undue problems whilst in remission.

    The joint pain which has spread across various parts of my body was such that I contacted my Consultant who saw me immediately as he felt the symptoms suggested a possible re-attack of the Vascilitis although he recently re-assured me that blood/ urine tests didn't indicate this to be the case & to visit my GP should my pain persist as he felt they were unrelated.

    Time will tell however currently I don't see any point in having a right arm as it's just to painful to move!

  • Hi Sorefeetsoldier

    I have Churg Strauss vasculitis and have been on 10mg of prednisolone for 12 years. New Rhemy has now suggested that I reduce dosage but at 0.5mg at a time over a period of 4-6 weeks. Even at this rate the pains from my muscles, joints and feet have increased dramatically. It looks like a longer period of time between reductions may help to alleviate some of your problems or at least slow them down. Best of luck.

  • Cheers yeah i got call from Doc today and i have to start pred at 40mg the joys.

    Wish you all the best.

  • I was diagnosed 3 years ago with wg. After chemo and high steroid dose I settled at 5mg of pred per day. This time last year I was keen to come off the pred and the clinic said to try to reduce by 1mg per month to zero. just as I reduced to 2mg per day I felt really unwell with aches and pains in my joints. At clinic my bloods showed that wg had re emerged and was advised to increase my pred dose gradually until I felt better. I settled at 4mg and have been fine for the last 9 months or so. The consultant is now talking about trying again to take me off them but I have insisted on leaving it alone until the autumn so I can enjoy the summer! I will take the reduction much more slowly next time. Good luck.

  • Hi you think the same as me enjoy summer and get out and about instead of being miserable. They want to start me on rituximab but i fear side effects may immobilise me more, its a gamble isnt it?

  • I hurt all over too. The most pain is in my fingers and balls of my feet. Left foot is the worst. I was diagnoised in 2014 with Vasculitis and tried the herbal treatment for two years. Then it got worse so I went back to the Specialist. He had me on 40 mg of prednisone a day 4 months ago when I started going back to him. He lowered me down to 30 mg a day last month. Now. I'm on 20 mg a day and hurting really bad, especially when the weather changes or it is going to rain. Oh I forgot to mention I have Rhumatoid Arthritis too. My Arthritis Dr. Started me on Cyclophosimied for them both. I have had two treatments and can't tell that it's helped any. My insurance wouldn't pay for the Retuximab. I hope this helps you some.

    deebeau

  • I take it you are in America? when i had cyclophomide 2 yrs ago it seemed to work for me no adverse effects but i have doubts about retuximab . Im sorry you feel sore too i can sympathise with you .im not too bad today but was woken at 5am with right shoulder blade pain .Geez what a life eh lol

  • Hi i am wonering why you have doubts about Rituximab.To me it seems a more targeted drug and ive heard some horror storied about cyclophosamide,including bladder cancer.

  • I have been on prednisolone since 07. I was diagnosed with ulcerative colitis and put on 40mg and then azathioprine until that stopped working. I was then put on methotrexate, tacrolimus, cyclosporine, mercaptopurine AKA 6MP. It seemed that I suffered side effects from each one but the truth is that being so new to prednisolone, I really didn't know the difference between the affects of the prednisolone and the various immunosuppressive drugs.

    To cut a very long story short, I have only had very brief periods without prednisolone and I have suffered from rashes and boils all over my body and many times I've had awful folliculitis where it feels that my entire body, where there is hair, itches so badly. It would seem that high dose steroids will bring in these abscesses but, conversely, taking no step is at all, will make me come out in this awful rash.

    I would ask your GP or rheumatologist to give you some 1mg prednisolone and to cut back much more slowly. I've been informed that the best way to cut is to take the dose you take but on alternate days as this, apparently, is the best way to get your own body to produce its own natural steroid. For example, if you get down to 10mg then take that every other day and you are actually taking around 7 mg over the 3 days. I hope this makes sense !

    I now am down to 7mg but take it every other day. Coming off of prednisolone is very difficult and had to be taken slowly and especially if you've been on it for years, as I have. I wish you all the best.

    Oh, there is also a test that can find out if your body is still able to produce the natural steroid. It's an injection and you wait at the hospital or surgery, so they can see if there is a reaction or not. I forget it's name but I had it done. The adrenal gland can stop making natural steroid and so it's best to know BEFORE you cut down

  • Many thanks for your reply it is appreciated. I can imagine the torment of being itchy all over it must be barly tolerable i have a nephew who has exzema and that torture. When you mentiond hair folicles i remembered when i was first suffering from wg i was told i had flu ,sinusitis,general fatigue etc. Until the penny dropped with a real Doc. I told Docs i even had sor hair (scalp) and one foc just laughed and shook his head...hard to beleive eh.

  • One, simple question-Who told you to stop the Prednisolone? This is the one of the drugs, I was told, NEVER to stop! (even if the world explodes-well almost).

    AndrewT

  • Andrew, most patients with Vasculitis manage to get off pred, obviously you need to taper and not stop suddenly.

  • Maybe my condition is different.

  • My consultant told me to stop now iv to start again 40mg crp is 24 dont know if thats alamingly high ?????

  • Could I ask a couple of questions?

    Have you only been given prednisolone for the WG?

    If you were given Cyclophosphamide IV initially , were you not given Immunosuppressant medication along with the prednisolone? The objective of the immunosuppressant medication is so that you can eventually take the minimum amount of prednisolone or reduce completely.

    My husband John was diagnosed with WG 15 years ago, was given Cyclophosphamide IV initially, followed by immunosuppressing medication ( Mycophenolate Mofetil ) plus the prednisolone. He eventually reduced the prednisolone to zero 4 years ago but it took about 18 months to get from 10mg to zero. Some sadly are not able to reduce lower than 7.5 mg or 5 mg.

    There are NICE guidelines for treating WG ( GPA ) and NICE guidelines for the use of Rituximab for treating some types of Vasculitis.

    Research is ongoing, here in the UK and world wide for finding, both, better treatments to treat Vasculitis and also to find out why some people have a predisposition to actually be diagnosed with Vasculitis.

    Many patients have found Rituximab to be very successful but other immunosuppressant medication has also been very successful.

    Have you talked to your Consultant about all the options open to you?

  • Hi yes im taking azathriopine and today i was told to again start pred at 40mg .browned off is an understatement.

    Thank you for your reply.

  • When I was diagnosed I initially had cyclophosphamide Iv along with the pred then they tried azanthropine although it did not agree with me so I was on just the pred but it seemed Ok as I was in remission for over 18 months then had a flare up and was then given a dose of rituximab - 2 IV's over a 4 week period then high dose of pred tapering off - I have now been pred free for 6 months and touch wood all seems Ok the vasculitis is back in remission but unfortunately the kidney damage which it caused when first diagnosed has now got worse so looks like I will be back on dialysis within next 6 months. It seems we are all different and what works for one does not apply to all.

  • Its ben suggested for me to commence retux.....how was it . I mean how did it go what do they do? What kind of reactions are they looking for?

  • ive been on 5mg of pred for most of my 23yrs of wg tried twice to come off pred but became ill so on pred for life it seems. jerry.

  • Hi Sorefeetsoldier,

    My Vasculitis started in my eyes in 2013, when l lost 80% of all sight in my left eye over a period of 3days. Under hospital advice l started to reduce my pred' from 60mg to 5mg over a period of 11mths in 2013; unfortunately, just as l reached 5mg, l then lost a lot of sight in my right eye overnight and l was in hospital at the time!

    Anyway since then, l've had 5 sessions of chemo' and started at 1gm (IV) of pred'. At my last visit to my Opthamologist - he's the one l trust when it comes to reducing pred' - he suggested that l reduce from 7mg to 6mg for 3mths - which l'm doing at the moment -and then 5 for 3mths but then have a test to see if my body can produce it's own steroid. So please don't reduce the pred' to quickly.

    Sally

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