Fatigue even if in remission?

[Sybennett]

Hi all,

I was diagnosed with MPA in October 2015 and am fortunate to be in remission after 2 courses of Rituxan given at 6 month intervals. Other than coming out of this with stage 2 kidney disease I am basically well.

But I have noticed that the fatigue I experiencd while the disease was active returns if I exercise--particularly with strength training. Last week I did one set of basic lifts with light weights (10 lbs or so) and felt very tired for the next several days.

I did lose fitness while ill and really want to get fit and strong again. I walk about 30:00 every day, but really want to be able to do more-maybe even run again. I am a 62 year old woman, but don't think that is too old to be active and exercise vigorously unless this induced fatigue just goes with vasculitis.

Is the return of fatigue with exercise an issue for anyone else?

Thanks for your help!

Sharon

[anthony01]

Yes! Fatigue is my worst bit of any illness and is a disability by itself! I have Anca which was positive & cerebral vasculitis? I was on Rutiximab Treatment which has failed and still on Methotrexate. If I increase my exercise within days I am bleeding and shattered. I am now down to walking and doing a fast walk for about 15 minutes daily and after 3-4 of these, a week, I am shattered (I did start off with a bit of a longer walk and slowly increased the speed). Still have problems with Consultants accepting this is Vasculitis!? and say it is all the other medication I am on BUT I know it is inside me!?( it is like taking away a battery and needing a re-charge) at about 12:00 - 13:00 I hit a brick wall and have to stop and sleep about 20minutes - 90minutes! I was always strong and never slept during the day but it is winning the game..... wish Consultants would understand, I do mention it every time I see them! and have said "the Tidiness will get me before the Vasculitis??" I hate it as I was a sportsman and rowed for my Country, to now being controlled on what I can do.

As I can no longer work, I started up painting and became an Abstract/Copy Master paintings and now there are periods I do not paint for weeks, as I can not think or want to paint due to tiredness.

Just keep doing what you can, I think fighting it will not help, you may feel a little bit better letting "IT" share your life and having a rest or try PACE your daily lifestyle out to get a more enjoyable lifestyle? (may be the answer?)

[PCAD in reply to anthony01]

Hi Anthony, I found your reply really interesting and not just in relation to the fatigue. Fatigue is my biggest problem and has been so since all this started 5 years ago. I had a brief period of a few months in 2015 when things were much improved when on Methotrexate injections, but then my body turned against Methotrexate and I had to stop. It's been down hill since then. I agree with others, you need to pace yourself and listen to your body (if you need a nap in the day take it).

I'm now in a position where virtually all people in the health system agree I have GPA including consultants at the regional hospital (who told me 'don't let anyone take you off your immune suppressors'). However, the one who does not is my local lead Rheumatologist (and as such my primary prescribing consultant) who won't accept the diagnosis solely based on blood test results. He is not interested in any discussion about a diagnosis route map for Vasculitis, to him if my bloods are fine I must be fine (end of). It's sad that such thinking still exists. Anyway, yesterday at my consultation he went further (and before I could even speak). He went into a speach about my bloods are fine and as such he wants me to stop ALL my medication (immune suppressors, anti bleeding, Pred, pain relief, etc) as that is the cause of all my symptoms (yes the symptoms he won't even discuss even though they were all the symptoms which were in place before I started any medication). When my wife queried how this would be safely managed, he suggested I go to A&E if anything happened! As you would expect I'm far from happy with all this and will discuss with my GP later today. I'm certainly not going to stop meds without a second opinion.

Anyway, it was so interesting to see your update on the morning after this happened.

[anthony01 in reply to PCAD]

Hi to everyone on this subject. I really would suggest you get a second Opinion. My first consultant did a biopsy (1998) and found I had leukocastic (sorry about spelling) Vasculitis, My Neurologist (Degenrative Spinal Disease) thought I needed to see a Rheumatologist incase it was linked as my 'cervical neck' has had to have fusion of all the discs apart from 1&2 which are too dangerous to touch.

So this new Rheumatologist took me on and had a biopsy done and it was a weak P-anca. He (Doctor P Kiely) has done everything possible for me and said "all you bloods are fine!" but have photographed all the occurrences of external Blood Blisters and then a diary of internal bleeding - he firstly suggest sending me to Cambridge for a Second Opinion and then said first we will try Immunegobldin Infusions ( which start on the 3/1/2017 for 5 days x 8 hours! so really our bloods to the Rheumatologists can look good BUT he is quizzing the "bloods" as I had photographic evidence, that something is wrong in the body?! and he has kept me on Methotrexate! Strangely he feels that tiredness is not linked?? although Vasculitis UK have had research done on this subject and it shows people with Vasculitis suffer with tiredness.

[PCAD in reply to anthony01]

Now that's exactly how you would expect a rheumatologist to act. Mine just flatly refused to discuss symptoms, even with evidence. My GP and I are working on an alternative consultant. Especially given his 'stop all medicine' line means my GP can't prescribe any more immune suppressors. Priceless given my GP thinks it's a flare! Things we have to deal with. 😀

[Chris-Bromsgrove]

Hi. Yes, fatigue seems to be something we have to live with, although probably not everybody is affected in the same way. I was diagnosed with MPA in 2012 and for me at least there has been some improvement in fatigue levels over the years. My consultant has always said keep pushing yourself to do more but don't get carried away. As Anthony01 says don't fight it, you have to learn to live with it. I still find that frustrating, as mine comes and goes. Being told you are well and have no signs of active vasculitis is little consolation.

The drugs you are on can sometime be responsible which is something I discovered recently. I April 2015 I was put on Ramipril for slightly raised blood pressure. About 4-5 weeks later I started to get significantly increased fatigue and it is something I complained about at every clinic appointment since. Back in October my consultant decided to stop the Ramipril see if it made any difference. It certainly did and my fatigue levels have been much improved since. There has been a slight increase in my blood pressure but I will have to see when I go back i January whether I am given an alternative medication.

[Sybennett]

Thanks to eveyone for sharing your experiences. I never expected to continue to have symptoms once the disease abated and it is reassuring to know that this is not atypical.

[karens62 in reply to Sybennett]

Hi all, I have EGPA but I think the issue is the same. Although I've had no major issues with my blood work nor flares, I do have chronic fatigue and fibromyalgia. The aches and pains are most in my legs and feet. The fatigue is always there but in different intensities. Now after 11 years of relative stability, my rheum is considering reducing slightly my does of mycophenalate [cellcept]. So, yes, I think your symptoms are typical.

[BronteM]

When I asked about fatigue at an Addenbrookes clinic visit last year, I was told that it was the one symptom that they could do very little to relieve. They recognise that it is a significant problem for everyone and some research is going on, but there is a long way to go. I asked because I'd just been away for a few days with some university friends and was horrified at the difference between what I could do each day, and what they could. At home I'd adjusted to my limitations, and didn't notice it so much.

[gibson100]

I have had MPA for six years.During that time fatigue has be more or less continuous but varying in intensity.

THe most important thing you can do is Practice pacing methods.Rest when you need to and don't over exert yourself.Forcing yourself to exercise in order to get stronger is counterproductive I think.I tried that and simply found myself getting more and more frustrated and angry.Relaxation techniques also work well for me.

MY consultant (a leading Vascultis specialist) refers to this tiredness as ANca Related Fatigue Syndrome..It is a very useful term when dealing with other medical folks or others in officialdom.It certainly sounds more concise that just saying I am knackered all the time.

[Sybennett in reply to gibson100]

Thanks so much for sharing the name anca related vasculitis syndrome. I found a host of research articles that shed light on this condition and I better understand what seems to going on here. Now i just need to figure out how to keep exercise a part of my life without making myself feel worse.

Thanks again!

[Hidden]

I was diagnosed with MPA in February this year, and fortunately achieved remission very quickly. I've found I get very tired, and have struggled a bit with this, as to all around me I'm now "better". I was interested to read above that it might be connected to Ramipril as I've been on 10mg since the Spring, and have just reduced last week to 5mg - it will be interesting to see if that has any effect on my energy levels.

[SkinHorse]

I brought up fatigue with my consultant the other day at (reg) clinic appt. My MPA/ANCA all stable/"quiet" & I'm on 250bd MMF but the fatigue is kind of a facer. Consultant said that fatigue is THE single most common issue with MPA/Vasc patients 'in remission'. Trying to get money for a study on this to see if stimulating vagus nerve might help but I think we're a long ways from it. I told him, 'I'm in..' if they want any volunteers. I'm only 64 & this is a nuisance! Not my style at all. But pleased they caught it early, that's for sure! A late Vasculitis diagnosis because they weren't looking for it, killed my daughter-in-law'd Mother in 2 mos last Christmas. Very random particularly since she was a Philipino woman living in LA & I am American, currently living in the UK.