Diagnosed with WG in feb 2007,i am 45. Given Rituximab in jan 2013 and have been reducing my steroids down since then until finally finishing pred use approx 3 weeks ago. My problem is (aside from fatigue which seems to be improving slightly) painful feet, from rising in the morning all through the day and waking me in the night, the degree of discomfort seems to increase the more tired i am. Have also been experiencing periods (2-3 weeks) where i have felt almost normal again only to relapse after spending a day or two trying to do normal physical activity typically long walks/bike rides.
Life is becoming rather repetitive with one relapse after another and each time i convince myself and others (wife/friends and family) that i am finally on the mend.
Is this typical of WG sufferers and am i fooling myself that i will ever return to a "normal" level of fitness/activity?
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Wilba
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Hi there, I fully understand what you are saying. I too suffer from painful ankles and cramps in my hands, I sometimes feel as you say normal, on my good days, only to return with fatigue and unable to do what I call normal things. I am still on 5mg prednisalone plus a load of other medication. My consultant is happy with me & says my WG has now gone into remission.
Hi, I also suffer from aching feet and aching legs. I have been taking cyclo for 18 months and have managed to get my preds down to 2mg. I don't know whether it's the illness or the reduction of preds!! Seems a common problem though!
The cycle of good and then tired days also happens to me! I hope it won't always be like this, but then it could be so much worse! So that's not really helped at all lol!
John also suffers with painful feet. There is a poll about painful feet Wilba I will try and find the link it makes interesting reading. It really does show that painful feet do come with the Vasculitis.
Thanks for all the replies sounds very selfish but its good to know that others with WG are experiencing similar.
Painful feet was my very 1st symptom that I presented to my GP, found that I was rising in the morning and hobbling about for about half an hour before my feet stopped aching, this went on for months before my other symptoms appeared. Once starting on prednisolone this symptom was pretty much cured except during periods of extreme fatigue or a "flare". Since stopping all prednisolone it has now really come to the fore again. Suppose it is something I will have to learn to live with as I will be very reluctant to restart prednisolone use again as "steroid withdrawal" has been the excuse for all my pains/fatigue for the last 2 years.
I don't just think it's a WG thing. Ischemic damage to the nerves caused by vasculitic inflammation and scarring of the small and medium sized arteries is common among many types. Certainly WG, MPA and PAN. In more severe cases this will lead to demyelination of the nerve or even the loss of axons, which can then lead to more severe symptoms such as motor loss and paralysis. The nerves affected are primarily all peripheral nerves, and more often than not the legs are impacted before the arms.
In my experience, some of the most severe damage can be reversed by chemotherapy treatment but not all and this will very much depend on how advanced the vascular damage is, and how far the effected nerve died back. Damage to the sensory and motor aspects of the nerves can be measured by a neurologist or neurophysiologist through some tests called NVC (nerve velocity conduction) studies and EMG (electro myocardiography). These will reveal the extent of the nerve damage. In certain types of vasculitis, a damaged nerve may be biopsied, and in my case, 9cm was completely transected, leading to permanent paralyis beyond the incision. Nerve biopsies reveal the the level of damage to the nerve and the level of necrotic tissue and axon death. This usually provides pathological evidence of vascular disease. The nerves biopsied are only ever superficial sensory nerves, so preserving the limb's function.
If your feet or hands do hurt/tingle/burn or you get pins and needles, ask your rheumatologist for a referral to neurology to investigate. They may be able to prescribe some medication such as gabapentin, pregabalin or amitriptyline to help dampen down these feelings, as well as pick up on the early signs of damage to the motor nerves. Sadly, too many vasculitis patients lose their mobility too quickly because this important area is often playing second fiddle to the more important work of preserving kidney function.
I too have painful feet after 3 years. It was one of my first symptoms (MPA). Originally I lost the use of 2 feet and one hand, but that has improved immensely. It will depend just how much damage has been done to the tiny blood vessels and nerves. I have read that nerves can find new pathways but take a very long time. So I am banking on that happening! I am lucky enough to be in remmission and have come off the steroids.
Things I find work are gel innersoles.
Well fitting shoes/trainers that bind the feet.
For the cramps, the microwave warm bags wrapped around my feet.
I have had x rays and the good news is no sign of RA and it has stayed constant and not got worse so I can only assume it is the residual nerve damage.
I have accepted I will have to work round it and just hope it will go completely one day. At least I can live with it and it isn't stopping me now.
I take paracetamol morning and evening and 2 tramadol in the morning to take the edge off and to get me going. I did try amitriptyline twice but it made mine worse although it suits a lot of people.
I also try to keep moving as if I have been sitting for a long time it is worse.
I suppose you will have tried all these things but that is all I have come up with so far, that and building up core strength and relaxation.
Hi I've had WG since 2003 had 3 lots of ritrix chyclophosomide over the years when I've had flare ups I've also had nerve damage in m legs I get numbness in my feet and pins and needle had all the meds going I think I'm actually on chemo now had a flare up after 6 years since the nerve damage was doing ok till now. I'm back on steroids had 18 mths break off them in 10 yrs got the old side effects back but what your experiencing I've had and I can say I'm feeling not too bad compared to how I Used to feel. The other problem I'm get g allot of lately is my muscles in my calf when I'm in bed now is really bad cramp where my feet used to wake me up its no so much them now but campsite my calfs and they are painful. I have other problem beside the feet my sinuses, ears, eye, mines more in the facial area as its in my nose I lost my sight in one eye it's hard but as long as you keep positive which sometimes is hard I know I can say when I look back to when I was admitted into hospital with this disease 2005 and didn't know if I was coming out I always rewind think how I was back in 2005 to how I am now and know it gets better I'm 49 yrs old now was 39 when was diagnosed. I did loose 6 stone recently on lighter life but unfortunately my disease kicked off the same time as over the years my weight ballooned from 9 to 14 stone I needed to loose weight for my health and I do feel the benefit from It I can do more physical things now did it so I could go to my daughters wedding in Australia next month to help me god know how I will be but I have to go and that when my illness decided it wants to kick start again 4 mths ago so I know how down you can get you're not alone what you're saying I've experienced too but it can get better don't be to dismayed hope this helps you.
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