I'm so grateful for this site b/c I have so many questions about this disease. My fiance was diagnosed about 18 months ago, so we're still learning about this. And I don't feel comfortable calling the doctors to ask general questions. It seems any symptom could be a sign of a flare and it makes it super confusing, whether to be concerned or not. He gets regular blood test, (actually) just had one last week. and (I think) the doctors are okay with it b/c we didn't get a call otherwise.
I'm curious how many of you feel tired (off and on) to the point where you have a hard time keeping your eyes open? Is this fairly common? And when/if you feel this way, are you (still) considered in remission?
Also, do you find a pattern where you feel fine one day and the next day you feel ill? How often does this happen? And how often do you get headaches? Are your fingertips white? Do any of you have the following symptoms while tapering off the prednisone? Mild joint soreness/stiffness? headache? night sweats? Anything you could ad (in addition) would be so helpful.
Are you on Azathioprine? Does it make you tired? Is your white blood count in normal range or is it below. (his fluctuates-but doctors don't seem concerned)-I'm curious what your experience is. What are your side effects...if any to this medication? What other medications are you on for this disease besides the Azathioprine? (for example, he is on Azathioprine and prednisone)
As you can tell, I'm loaded with questions. Thank you so much for your reply! I really appreciate any input you have.
Thanks!
Christina
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Christina1960
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Ive had mpa 8 years. Ive been on azathioprine and pred for most of that time. The amounts have reduced but still taking the tablets. Fatigue is always an issue. If I do something one day then I need to rest the next.
I would suggest he keeps a diary ofhis days of how he feels that way you may see a pattern, it is also helpful for the consultant. Bloods can be fine but you can still feel the symptoms thats why a diary is useful.
Vasculitis effects everyone differently so he will need to listen to his own body and learn what is normal for him, dont be afraid to question doctors. The more informed you are the more in control of your own treatment you become. I usually take a list of recent problems and questions with me every trip to hospital and gp. That way I dont forget things. They've got used to now.
Vasculitis UK also have some new booklets to explain the diseases and how to live with it. Look on vasculitis.org.uk
Thank you metalback. I do keep a journal of his symptoms. Usually when he's tired he has some other stuff going on too. For example he's had a cold with cough for 2 weeks now. We saw the Dr on sat and was told he probably has a sinus infection. Gave him antibiotics. He felt better then this morning his ear felt slightly clogged again. Not knowing whats wrong is so fustrating. And it doesn't help that I'm a worry wort and he doesn't like to talk/think about it.
Anyway, he was tired most of the day, and tomorrow he may be fine....then 3 days later he may be tired again. And the cycle starts over. Right now he's fully awake singing around the house. Lol
Mine is a similar story to Metalback - MPA diagnosed 9 years ago and a 'controlled' remission for the last 6-7 years (though with the occasional setback which hasn't lasted too long). Still on a low dose of pred (5mg) and Imuran (100mgs). Main complaint is tiredness and lack of stamina, particularly when walking up any sort of incline...generally pretty good on level ground and can walk for a few kms. Joints do ache most of the time, and night sweats can be fairly regular - one or two a week. Main thing is to listen to your body - if it tells you to rest and take it easy, then just do it! I used to feel guilty about it but don't anymore!
Its good that he has support from you. Any infection is a problem our bodies just cant fight things off. I had a cold in August it took 3 lots of antibiotics to clear it off my chest. Maybe the first ones didnt do the job. So keep a note of what was given and if it worked.
I'm on 5mg of prednisolone and 50mg azathioprine but when I have any infection I increase to 10 or 15 pred. You would need tocheck with consultant. It helps the body fighting infection.
Have you looked to see if you are near any support group because they can be a great help talking face to face and comparing treatments and conditions.
I don't have mpa (another vasculitis) but just a few comments that are general to all autoimmune disorders: fatigue is a given with autoimmune illnesses and you have to learn to pace yourself and adjust to a new normal. I'm not sure about mpa but for many things the medication is mainly managing the symptoms and the underlying illness is still there in the background.
What often happens is you feel good one day and do a bit too much - so the next you feel tired as your body tries to stop you doing too much again. When you are tapering off pred, some people are very sensitive to the change in dose and suffer withdrawal symptoms - which are all too often the same as the illness for which you are taking it and those symptoms you mention are all actually listed as side effects of pred (even though you might be taking it for an illness that has those symptoms as I am!). The smaller the step-down the less likely it is that you will have that problem - doctors aren't always so aware of it though. However in my area (PMR and GCA) they are beginning to see that slower reductions make a big difference - which is important because all we can use to manage them is pred.
If it helps you to understand and explain to yourself or to your fiancee two good things to read about autoimmune disorders and what it is like living with them are a blog called Despite Lupus by Sara Gorman and The Spoon Theory by Christina Miseriando
They aren't people with mpa - but living with chronic autoimmune illness has many common aspects and these two women have discussed them pretty well I think, especially the fatigue bit. Sara plans a nap every afternoon whether she feels she needs it or not - which gives her back her evenings and if she doesn't have her nap on a couple of consecutive days she will have a flare - and Christine allocates her spoons. Either way - it is an adjustment to a new normal.
I have Wegeners, now called GPA (granulomatosis with polyangiitis) and yes, fatigue is the biggest problem for me. I am 50 and had to retire from being a GP aged 47. my condition showed itself back in 2007 as a purple rash but I had suffered chronic sinus problems and fatigue for years prior to this.
I may also have a form of vasculitis called CNS vasculitis and this is currently being investigated via a neurologist - very difficult to prove as MRI scans often negative, as mine are so far. The next move is a functional MRI and then brain biopsy. Your fiancé's headaches may be a sign of CNS vasculitis and I would suggest he see a neurologist, preferably one with special interest in vasculitis, to discuss further investigations.
All his other symptoms are par for the course in an autoimmune disease like this.
I also have blurred vision and numbness various places on and off as well as chronic low-grade headaches and difficulty concentrating. The fatigue though is the killer.
I was never on AZT but had terrible stomach problems on methotrexate so am now on quite high dose prednisolone until they sort out the next treatment option. I have also had very expensive Rituximab infusions but to no avail.
Frustratingly, my bloods are always normal! Often the case in these diseases.
Feel free to ask me further questions, or even for your fiancé to ask me himself.
I read your post and was interested to know about CNS vasculitis?? I was seen by a neurologist for my ongoing migraine and it seemed to get worse. I had numbness on my right arms up to the tip of my little finger from time to time and very stiff shoulder which can be painful on some days. My eyes felt burning and a bit pink on the white part but surprisingly the blood test never showed raised CRP or ESR only the positive PR3 ANCA which was high(11 of normal value 5)I had 3 blood test 2 months apart. My specialist could not confirm but suspect WG . I was given no treatment only to be monitor every 2 months by blood test. I am so very worry and could not live my normal life because of not knowing what to expect. I found lots of useful information from this group and was very grateful. I am not sure if I have GCA since most of my symptoms are very similar to the symptoms listed for GCA. I never have joint pain only stiff shoulders and neck and headache. I also have night sweat fatigue and weight loss. My vision still fine but my eyes felt heavy and dry.
It is really difficult to understand and to be left untreated because I cannnot stop worry about it even though my specialist told me the symptoms are too mild .
I would not worry too much if your symptoms are mild and if u can function reasonably well day to day.
the drugs cause their own problems and I would stay off them until u find that your daily activities are being impeded, especially your work.
if u are a vasculitis case, suspected or proven, and your headaches/numbness etc persist or worsen, then find a neurologist with a special interest in vasculitis. that is what I intend to do, though my current neurologist is very good and says he will probably refer me on to a specialist neurologist himself anyway as I am complex and he does not have the experience to sort me out. good guy.
Thanks for replying hof-man. He's getting over a cold that he's had for 2 weeks or so. He began taking antibiotics since last Saturday for a possible sinus infection. He still has a cough, but feels better.
Anyway, not sure I understood your comment. Did you say to stop his meds since they may be causing the problem? I don't think that's an option.
The only symptoms at the moment are tiredness (he's been tired off and on for 1 1/2 weeks but this week it's been everyday...where he takes 2 1/2 hour deep naps. (luckily he works from home and can do that) and his joints (mildly) hurt. Which could be coming off the prednisone. Maybe tiredness can be coming off the prednisone also.
I'm just concerned b/c being tired is one of the symptoms of the disease.
sorry for confusion, have read my initial reply and not sure what u mean but no, do not stop drugs without consulting doctor. I have had to stop methotrexate due to severe stomach side effects and am waiting for these to clear up completely before I start something else, possibly AZT or mycophenilate or indeed something else that my consultant may suggest. yes tiredness will be worse coming off prednisone but question is how much his life is affected by the tiredness and how much pred and other drugs are required to keep him functional and happy, but always considering risks of severe longterm side effects from drugs. essentially a balance which is constantly changing! never easy, always a challenge. hof-man
I've had Microscopic Polyangiitis (MPA) since 2007. The first thing to note is that acute fatigue is the norm, & the icing on the cake is, almost every pill you take causes tiredness. you can't win, but you can learn to live with it ,& after a time you begin to find some of the energy you had lost. If you have to take a nap in the afternoon take it.
As for your questions, the specialist will expect them, what you ask will often tell him how you are getting on. My specialist has told me, the chat can often be more revealing than the blood results!
As for the symptoms, most are side effects of the medications you take.
The basic meaning of remission with Vasculitis, is that the activity of the disease is nil, or more likely low , although with an Anca reading of 100 you can still be in remission.
What has helped me understand what is happening, is " Patient View", with this you can see your own blood results, with their meanings. on your computer at home. Over time it can make you feel more in control, Ask your specialist if you can have a password
do make sure you have a bone density check
There is no one way, every patient is different, the symptoms the same, but not the same treatment, or even the other way round. I keep saying "It's a funny world
Best of luck to you both, I promise you life can still be really good
This week is my fifth anniversary of diagnosis for MPA.I have had a couple of relapses early on but have been in "drug induced remission"for about three years now.
Everybody with MPA I (or it seems,my specialist) ever speak to says that fatigue is continuous.It might not be constant but comes along like regular waves.Learning to manage these waves is really useful and can make life with MPA much easier.After a while the stamina will get better
It seems even the best medical brains have been unable to pinpoint the causes of this tiredness.There is an increasing body of research into sub-cellular molecular and even quantum level biology.It years to come I suspect answer will be found there.
It the meantime my specialist gave me the very useful phrase "ANCA Related Fatigue
Syndrome".During the past five years I have used this term many times when dealing with various officials,insurance companies and other medical professionals etc.It is very succinct and concise,avoids going into detail and sound better than saying just saying "I am just knackered all the time"
Contact our 'Sister' organisation-Vasculitis UK-and request a 'Roadmap' they cost about fifteen pounds, I believe. This will answer any, and ALL, of the questions that you have, of this a I am certain. Alternatively contact John & Susan Mills-who run vasculitis UK-direct at jandsmills@btinternet.com. You will find them both very helpful and knowledgeable.
Please do feel free to ask us all any further questions Christina-it is, after all, one of the reasons we are here!
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