Does anyone know if it is possible to have normal bloods and be in remission but still feel really tired and have aching legs after walking up the stairs??
In remission but don’t feel like it?! - Vasculitis UK
In remission but don’t feel like it?!
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Webbyj
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I had four weeks of Rituxan last fall and now, like you, all my labs came back normal. And, also like you, I am tired and my legs get fatigued easily. I went to the gym yesterday, for the first time in many many months. I got on the elliptical machine, and it was awful. My legs burned and I was huffing and puffing. I thought I'd not get past five minutes, but managed 15 minutes. Everything is harder now. It doesn't help that I'm 30lbs heavier 
OMG- I could have said almost the exact words! I'm in drug-induced remission. The prednisone based human-to-cave-troll transformation is nearly complete. The journey thus far has been brutal; my home laid waste.
My labs are currently all within acceptable ranges, had 4 weeks of Rituxan last June and just had a maintenance dose today. Steroid dose down to 10mg *gasp! My rheumy is all happy. everything is Awesome....except I feel like trash. Wiped out much of the time. Can't keep to a regular schedule, can't even make conference calls sometimes. I had bought a stationary bike for rehab, and I was able to do 12-15miles a couple times a week. Now, when I'm motivated to hit that bike (which isn't often) I can barely do a mile. Riding a bike outside on flats is easier somehow. Riding better than walking, walking and sitting better than standing (hate standing in queues, very uncomfortable). I can walk a couple miles when feeling well, but legs always burn and ache. That extra 25lbs I added in last 2 yrs is NOT pulling its own weight! If I say anything to rheumy about the persistent pain, the crushing fatigue, the dizziness...yadayada yah... she says, "but your bloods are all fine, so your disease is well-controlled" (in other words," you can't be having these symptoms, b/c bloods are fine")...."...take it up with your PCP/GP" (neatly shunting responsibility to other doc for difficult symptoms). In fact, I've been watching my labs closely for last few draws, I was sure that there must be some evidence for why I am feeling so crappy... but no, it's all fine. Right.
Exactly! I blame the meds. I too have an excercise bike. Haven’t used it for 6 months but went on it last week and managed 20 mins! I guess it’s a case of getting back to fit and losing a stone in weight. As long as the bloods are all good then I guess all is well!
Fortunately your sense of humour is in tip top condition! I don't have any experience of Rituxan, and am still trying to get off Methotrexate after 4 years, but I do remember missing the steroid 'buzz' when I came off them 3 years ago. Good luck with the return to feeling human, I've come to the conclusion that the recovery from this disease is more of a journey than a destination.
When I tried to talk to my rheumatologist about my pain after rituximab, she referred me to a psychologist for “phantom pain.” She said that psychologically, my mind couldn’t remember a world without pain, so it was faking pain.
I don’t believe her at all because it feels so awful and most nights the pain keeps me awake and I sob all night long.
However, my doctors stopped ordering labs because my MPO and ANCA have never been in normal range, and they think that it might be too discouraging for me to know the numbers. This Sucks!
Yes I do think it’s the added weight causing this. I will try and do more excersise!
Hi all, my thoughts...
Of course we must all remember remission isn't the same as restored to previous state of health, it just means the disease isn't active. We know this, but living it is different, and frustrating.
I'm sure we all have bits of, or lots of, leftover damage somewhere in our bodies. Damage that we're stuck with. Steroids can make us weak too. Exercise and weight loss are great, and I don't dismiss them. But I strongly feel we have to guard against using the punitive blaming gym language we ourselves used to use, and still hear all around us. It makes me sad when i hear it on here. My neuro physio says an increase of 5% a week in either time or distance is what I should be aiming for, that's a fraction of what I was trying to achieve. I used to have uprisings in willpower, push on, wear myself out then do nothing for 3 days!! For me the challenge is learning to live in my new parameters, it helped me when I heard it described as a narrow bandwidth. I only arrange one thing a day, then I do what else I can manage on the day, and I've got to a stage where I'm happy with that, but boy, it took some doing! My life is all in slow motion, and I'm learning to listen better to my body and work with it, instead of pushing through. Sort of like the horse whisperer but for my own body. That's helped.
Yes, go on the exercise bike... yes, eat well, but also be as kind to yourself as you would be to someone else.
I think we should all take more easy options, spend some of our daily energy making pleasures wherever we can, buy some nice clothes for our bigger selves, and allocate some fun!!
I think you gave hit the nail firmly on the head.
I don’t think anyone should underestimate the bodies reaction to the reduction of steroids.
Most days I feel tired, lazy, fat and old which I didn’t 2 years ago. Perhaps I should now concentrate on what I can do and not put my body under too much pressure and aggravate this disease.
Thank you for this reply. You are so right about changing your mindset about your capabilities; however, this is perhaps the hardest to accept. I like most had a busy life as a working mum, but then I was struck down with GPA in 2016; although l had been presenting with symptoms for two years before, so by the time I was diagnosed I was in a pretty bad way, the only bonus was I didn’t have any kidney damage. My recent bloods show my markers as nearly in remission, yea it’s taken nearly 3 years to get here! My life has been greatly reduced, I’m unable to walk far, stand for long, sit, drive, because of peripheral neuropathy in my feet and thigh, so I have had to adapt my expectation on myself hugely, which I confess has been very difficult and I cope with to varying degrees.
I do think the understanding and the general narrative in the wider world that you should be able to battle, being sick is not an option is something you can beat! Yea well sometimes getting out of bed is an achievement, having a shower feels like too much effort! Having a chronic disease, let alone a rare one, is hugely complicated with many facets to how you feel, not just physically, but emotionally too. This is where not enough is done/ understood by the medical profession; rightly it’s a first saving your life, then getting you to clinical remission, but it’s all the left over, unsexy bits which get forgotten about. I have come a long way from where I was, but it’s been very very slow and difficult. I like you try to have a goal a day, and when really rough a goal a week, often little, but then I feel better if been able to achieve more; but this acceptance is not easy and most of us are our harshest critics. I may never return to how I used to feel, as you say the parameters maybe narrower now and try to be okay with that. Also as you say eating well and exercise is all good, and I try to do something each day, but it is a negative language which has filtered from government policies, media agendas, social media and the superhuman narrative, which actually is not helpful. If climbing a mountain, or training for a marathon is your thing to help you get over this disease, then crack on, but some of us are not there, may never be there and do you know what that’s okay too. So again as you said be kind to yourself. Thanks again for your wonderful refreshing reply.
Couldn't agree more with what you say about markers and the reality of living with how you are now.
I have never been 'right' since it all started 3 years ago. The effects of the treatments at times worse than the symptoms which are many and varied.
I could go on about my own blah blah surfice to say the parts affected for me are ears, nose, clicking jaw, crackling head and neck due to blocked ears, lungs,kidneys. Just recovering from a recent 'flare up'. Plan is for Rituximab every 6 months. On tapering dose of Pred and no immune suppressants.
It's seems every one has a different cocktail of medications.
I get the life in slow motion bit. Time takes on a different meaning. I don't do the gym. Walking is enough and hopefully getting out on the electric bike when weather is warmer.
I'm coming to the realisation that there is no restored self only a changed one. One that emerges out of the shadows of life in slow motion.......
Best wishes
Interesting read thank you. Before vasculitis I was unstoppable. Now I'm pretty much floored. I'm in remission and good blood work but real tired. I only take rituxan and stopped all other mods over a yr ago. I'm at 8month intervals with the rituxan. But this tiredness is really bothersome
Hi there Webbyj.
I identify with you a lot.
My Prof told me it's more than just about the blood tests. You may well be in remission per say with regard to the inflammatory markers etc.
However, bloods aren't everything.
The thigh muscle thing I really get.
But if like me you put on a lot of weight from the Pred and inactivity therein lies the problem Inthink: Our muscles are pretty atrophied. We used them 90% less. I installed an App called Pedometer Pro on my Android and slowly but surely increased my daily walking routine.It counts out your steps. Within a week I had managed to increase my daily amount by 50%. Added to that I cut out carbs. Not easy. At all. But I boiled up 6 eggs at a time and would eat them as and when I got hunger pangs over 2 days. No fizzy drinks. I'm still working on lowering that one more. That's the toughest for me. I bought a yoga mat. Left on the floor all.day and just did gentle stretches morning and evening.
As your weight begins to go down I hope you experience what I did : Easier to get about without feeling like death warmed up! Also less weight means your daily intake of Pred can be adjusted...by Your Dr...VERY slowly downwards. So less non stop eating. It's kind of a circular thing.
A thoughf: If you are on stations because your cholesterol levels went up because of the Pred, they do cause(in myself included and I had to stop them sharpish) awful cramps. I buy a roast chicken every other day, I take off the skin with a heavy heart, and eat that as well as tinned tuna and salmon also.
Sweet potatoes have much less carbs, put one in the microwave for 5 or 6 mins, use a cholesterol lowering spread like Flora Activ or Benecol, and fill it with say tuna or the above. And gfet a hood set of scales and keep your eye on ypur weight.
All the above I really hope will make a difference.
Good luck and keep us updated.
Jay.
Hi there. I do have high cholesterol too and am down to 1mg of pred per day for 3 weeks. Then off completely. This is because of high pressures behind my eyes. I am hoping I will feel better once I am off them completely. I will make more effort re diet although I have already tried to cut out carbs I will occasionally give in and have some chips!!
Yes I’ve been in remission for 2 years but don’t feel like it.I still get fatigued swollen joints etc etc.
I really identify with all of you , Webbyj and all the replies. I have been on Rituximab for 5 years, now only once a year. Like all of you I am told I am in remission but, like all of you, I have awful trouble with my legs with the burning thighs which turn to jelly and absolute exhaustion after the shortest of walks. I think it is compounded and confused with the fact I also have quite severe arrhythmia so I can't tell how much of the huffing and puffing, fatigue and weakness is my heart or the vasculitis (MPA). I have a pacemaker and am due for an ablation in March.
Your letters are the first I have heard on this site of the leg problems and it seems that several of you suffer as I do. Have your consultants ever given you any indication of the cause? To date I have not received any advice on this. I too am10kgs heavier from the prednisolone. Oh dear, it is wearying!
Mine's neuropathy, and the weakness is even worse on the meds. Both steroids and immunosuppressants have proximal weakness listed as a side effect (proximal meaning closer to the body ie thighs and upper arms).
Yes! You can have normal blood tests and still be in relapse. There are many medical studies out on this now.
Webbyj in reply to
Oh that’s a bit worrying then! How are we supposed to know if we have had a flare? I only knew I have Vasculitis because of the blood tests (especially ANCA which was positive) a kidney biopsy and protein in urine. All of which are currently negative thank goodness.
in reply to
If you have any link(s) on this subject, please kindly share.
Very useful to know that there are studies. Thank you.
ANCA is often positive, especially in the beginning - from what I've read in medical studies. but is unreliable at best in the long term - even if you're ANCA positive.
I have ANCA negative EGPA so despite the fact that an ignorant bunch of rheumatologists kept testing my ANCA levels it wasn't going to tell them anything.
Vasculitis specialists who really know their stuff follow symptoms and not lab tests. Not that the tests can't be helpful but they are not as reliable as knowing one's patients & their symptoms.
The best way to tell if you're having a relapse is to know your own symptom complex indicating a relapse. It may be recommended that you buy dipsticks to test if you are showing any protein - some specialists recommend them.
Yes good idea re the dipsticks. 👍
Hi there.... absolutely !! My bloods( still checked every 2 weeks) are almost always in “ normal range”.....even when in flare up they can be described as so .... with the exception of the specific test for cryoglobins in my blood. I was on methotrexate and stetoids... but The methotrexate caused further problems so now on 6 x 500 and 20 preds daily... . Most days my exhaustion is overwhelming at times. Legs ache ( at best) with numbness in feet and hands . Pins and needles in feet and cramping in many muscles. Breathless climbing stairs.... . Slow and steady is now my rule . If I try to push it has a counter effect and that is hopeless . I do know FRESH AIR and some sun make me feel best !! Again little and often . I was very fit prior to this and travelled extensively . Regards setting my goals and expectations was / is paramount . That does not mean I just accept this .... anything but !!! I fight but slowly gently continues to be my best tactic !! Good luck to you all. This awful disease affects us in so many different ways . Keep going !!
You are truly aspiring , I hope the cause , cure will be discovered soon !
Thank you. And all good wishes to you too!!
Suzym2uModeratorVasculitis UK
Blood test results alone are only and indicator for no disease activity. A good doctor will take into account any signs and symptoms and how the patient is feeling. You also have to take into account any damage caused before diagnosis and side effects from the disease itself or the drugs to treat it. . Eg: neuropathy or scarring of the lungs
I suggest you sit down with your consultant and have a good chat about yourself.
Unfortunately, it’s a common thing, say my Royal Free consultants. It’s more than annoying, it’s downright depressing at times. I’ve been in remission for months (thank goodness!) but three is a residual fatigue that stays/comes & goes. There are days/weeks, i’m Fine, then wallop, a fatigue wall hits and I can’t tell how long it might last. They don’t know Why & would love to get enough money for a study of this. Can’t be more help except to say, yes.
Hi Webbyj,
I relate to your post pretty well. Of course it's wonderful to hear that you are in remission and your blood results don't show any vasculitis activity but the feeling of being 'unwell' doesn't ever really go away. Granted that you are sleeping well, eating well etc., you may have days in which you feel 'better' or maybe even "normal". Sometimes I find that I have to remind myself that life is somewhat different now. I'm still the same person, just that my body operates a little differently. My energy levels are something that are now rationed wisely, whereas in previous times it felt like I had a limitless amount. Hang in there! 🙄
Webbyj, have you looked at this old thread?
healthunlocked.com/vasculit...
Meanwhile, I'm still on a weird cycle of 3-4 days of "normal" activity, then a complete crash for 18-24 hours. Crash=in bed, semiconscious, shaking and quivering , don't get up for bathroom or meds or anything. My legs ache with any exertion (or just ache), walking up one flight of stairs from lower level . if I say anything to rheumy, she repeats that bloods are good, so everything must be good. Grrrr! any further complaints results in other lab tests or scans and they come back negative. So, now I'm just a complainer (needy) patient.
Last Rituximab infusion was 2 weeks ago. next labs are in 2 weeks. we'll see.
Is this just the way its going to be, remission? I actually felt better and stronger 7 months after diagnosis than I do now, 26 months after diagnosis.
That's exactly me. I'm only been in remission about a year and a half but exhausted. How are you do8ng now?
Hi. I’m doing well. Although still struggle with exercising. Get out of breath quite quickly. Still told bloods are all good so I am happy with that. I just wish I could lose the weight I gained whilst on prednisolone. I could do with losing at least a stone! How are you doing?
Well I'm in remission about 1-1/2yrs off media except rituxan every 8months. I'm still very tired and it's starting to drive me crazy. Before vasculitis I was unstoppable now it's the opposite. So I found this site seeing if it's other people as well. Seems my Dr's are not believing me
My consultant nephrologist and the rheumatologist I was initially under at diagnosis, just said ‘tiredness if one of the main symptoms of Vasculitis’ but were unable to advise me on how to deal with it! My main focus now is keeping blood sugars and weight down as I am pre-diabetic. Caused by the prednisolone !
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