My wife was recently diagnosed with Vasculitis, she has been taking 80 mg of Prednisolone for 6 weeks and that was a great improvement, she has recently had an Methylprednisolone infusion along with starting Mycophenolate Mofetil, so far her only main side effects have been tiredness, has any one out there had similar treatment and do they know roughly how long it takes for the tiredness to go,
Many thanks and good luck all
Dear Laines,
What type of vasculitis does your wife have? 80 mg as a start dose seems exceedingly high unless there are factors not disclosed here such as risk of losing sight, or kidney. or lung malfunction. Fatigue lasts indefinitely I am afraid. It somewhat depends on exact diagnosis and many other factors."Vasculits" is an umbrella term for many different diseases affecting the vascular system. I would ask for clarification from her doctor which type of vasculitis? 60 mg is the highest dose I have seen mentioned on this forum. You need more information.
Your wife's fatigue is likely to last years I am sorry to say unless the diagnosis is not correct.
Also wondering what preceded the start of very aggressive treatment?
Hi, and thanks for replying, stupid me got mistook between 8 tablets and 80mg, the dose she is having is 40mg, we think the vasculitis is GPA, and the tablets have to be reduced next week, a week after the infusion.
Ok; now I understand; not 80 mg. , but rather 8 mg; I imagine( 2 ) 4mg. tablets per day. That makes much more sense. GPA stands for granulomatomis polyangetitis. (also called Wegener's granulomatomis). Granulomas are growths; I had one on my knuckle of R hand, but no internal ones found anywhere else; it becomes serious when Granulomas grow in the lungs and kidneys; ie vital organs.
So 16mg/day is a typical starting dose. That is how I was started. For awhile, in my case, the prednisone worked like magic to remove all pain in less than 36 hours. It initially gives most patients quick pain relief. For that particular diagnosis , your wife must have reacted positively to a C-ANCA test. Do you know what her titre was? Mine being under only 1.6 . There are more types of tests; I believe that the best test of the blood is by immunoflourence or the ELISA test. But results are not always accurate.
I saw a specialist at Johns Hopkins University here in US for a 2nd opinion. She spent a full 2 hours and a half with me after my diagnosis in 9/16. I had to be approved to have the consultation, and did not get the 2nd opinion until April, 2017. She did not believe I had GPA, but gave more thought to polymyositis rheumatica, probably less serious than GPA. Be aware that blood tests and scans are not always accurate, and when in doubt, the test should be repeated.
Has your wife felt dramatically better since starting prednisone?
Pain is one thing; fatigue is another. We, on this forum. for the most part, all experience fatigue, even "deathly fatigue." The fatigue she is feeling is real so I hope you both have to understand this is not malingering. Some days are better than others. But it's likely if she has a good day, she will try to overdo and be wasted the next day. This is an area you must both be patient with. All vasculitis cases come with fatigue. And it will get worse before it gets better.
It's necessary to set a new normal in your expectations. The prednisone essentially stops the adrenal glands which secrete adrenalin, from functioning. The medicine is an angel and a devil in the same pill. Because prednisone weakens the bones and has some other undesireabe effects,(skin lesions, clarity of vision) doctors start to rush patients off the drug too quickly causing relapse. But to the patient, it is a god-send. There are additional drugs to add or substitute for the prednisone, but don't let the doctor rush her off prematurely; it will likely cause a relapse. There are a few protocols for prednisone withdrawals, but it should be VERY SLOW.
PMR Pro and Sheffield Jane have posted tapering schedulers which you can find by searching for these two members in this forum.
Are you asking about fatigue because you wish she was pulling more weight in daily life? Which of you is the impatient one? Do believe her; and give her all the help and support you can. This fatigue is often worse for the patient than the pain. If you have time, browse through posts as much as you can and you will understand. It is a day to day thing without any predictability.
I am into my 3rd year with polymyositis rheumatica; I can accomplish things, but then suffer the consequences. Give your wife a vacation at home. Enlist neighbors, friends and family to pick up some of the slack. Some of us can't get out of bed in the mornings. Believe that the fatigue is real. Good luck to you both and feel free to post on the site because there are so many twists and turns and continual change in how we feel on any given day. I am afraid It will be a long haul out of fatigue.
Do keep us informed on how you are getting along.
Hi,
I have GPA myself although my treatment was different. I started with 60mg of prednisolone and had 6 cyclophosphamide infusions before they put me on a maintenance immunosuppressant (azathioprine).
I must say that I was surprised to read that your wife didn't have cyclophosphamide or Rituximab infusions.
Fatigue...
I still have episodes from time to time, but nothing like the first 6 months of diagnosis. I think it is a way for our body to force us to listen to it and rest.
For advice and to talk to someone that can explain the illness very well, you can contact the helpline:
I took ill suddenly in late November & got worse whilst in hospital,diagnosed with GPA & started on 60mg Prednisone plus i have had 6 Cyclophosphamide infusions & an Aclasta infusion,my Prednisone dosage was tapered slowly but then i started flaring & also have Scleritis quite bad in my eyes so i am presently still on 60mg Prednisone,had my first Rituximab infusion yesterday with another 1 to follow in 2 weeks then another 2 in 3 months then rheumatologist will sort another plan out,i will be starting Methotrexate maintenance medication in 3 weeks time.I am based in NZ & hardly any cases here at all so i am getting a lot of information from this website which is fantastic,so much information.
Nb make sure that your wife is seen by a specialist vasculitis team. See the vasculitis uk helpline they will guide you. Once treated fatigue should improve although it takes time.
I have been on deaths door step. From before Christmas to 14 april due to no immune system from the treatment for churg Strauss . I caught a bad case of pneumonia in Dec then the kidneys failed and all my cognitive actions of my brain shut down and septic poisoning of the blood got out of control 3 times this happened I was virtually a vegable could not but 2 words together and the head of ICU told my wife I had 4 hours to live unless the antibiotic kick in very quickly.
I had no knowledge of anything for 2 months. My wife driving me to our top hospital was stressed as every kilometre I tried to jump from the car travelling at 80km .our local hospital could not deal with the condition and the ambulance would only go to our regional hospital.all my medical records were and specialists were 2 hours away by car .that is now the 10th on the edge situation now I am going to have every 30days a thermal fusion what ever that is (has anyone experienced this) as it is for life. Be careful everyone all this massive pneumonia in the lungs etc was from community acquired flu .i was up the street and someone from overseas coughed on me
Central nervous system vasculitus
Microscopic Polyangiitis
tocilizumab for gpa?
Advice please!
