EGPA Fatigue

[vivavida]

Hello everyone,

I’m hoping someone can advise me! My prevailing symptoms are great tiredness and joint pain- Does anyone know of any other pref non drug treatments to help? I’be just finished a pulmonary rehab course (asthma/bronchiectasis) which was great. Now I drag myself around and it’s hard. Consultant says they’re the hardest symptoms to treat. Not recommending pred.

Grateful for any ideas! Many thanks ks

[guineapignot]

Good morning vivavida , I understand completely your post and concerns. I was diagnosed with cryoglobulemic vasculitis almost a year ago which has caused great difficulty with kidneys , lungs, joint pains , muscle weakness and more. I am in a daily dosage of mycophenolate ( 7 x 500 tabs) and a reducing steroid dosage which was up

At 60 and now down to 15 mgdaily... the overwhelming exhaustion I find the hardest thing to deal with as at 66 years of age was extremely active and fit. I have listened and experimented to find ways to help me. First food!! Which I love !! Almost eliminated red meat as it seems most difficult to digest and makes me more sluggish !! Eating several small

Meals per day . Chicken , fish plenty fruit and veg, noodles . All seem best for me... loads of water with a hint of lemon orange or cranberry for flavour .....but most important was to adjust my routine to allow me to “ nap “ each day for about 30 mins . Also NOT to push too hard. Fresh air is essential and take every opportunity to take time ( even to a cup of tea and seat ) outdoors . I found a laptop screen drains me faster than anything !! So limit my time on that to evenings which sets me up for “crashing “ into bed at night !!! I started off from a very low energy level and it is building well. My key is to stop before I hit the buffers and take that nap.... I also take magnesium supplement daily... I do hope you find your solution and feel better ... keep experimenting gently will get you there !! Kind regards

[Cherishe77]

Hoi Vivavida,

I i’m diagnosed by a docter who deals with egpa ( i was anca negative) a lot but other medics still battle to accept his diagnose but: I’m on co-trimaxazol forte 2x a day (i’m from the netherlands so maybe overthere it’s named bactrim?) and i found it helps me a lot with the terrible joint pains and incredible fatigue. Maybe it will help you too?

Kind regards

[Budapest in reply to Cherishe77]

Have you had a Synachen test to find out your body's steroid level?

I had the test & it showed I have adrenal deficiency as my body isn't producing enough steroid on its own. My steroid level (prednisolone) was increased, from 5 to 7 mgs daily, as a trial to see if this helped the fatique.

Thankfully the increase has made a big, positive difference & I feel much less fatigued.

At my next hospital visit, I am going to ask if I may stay at this raised steroid level.

The other thing that has helped me is getting out of the house daily for exercise to raise my fitness level & stamina.

[vascy_errol]

Hi vivavida

I have HSP or IGA vasculitis and as soon as I reduced below about 20mgs of pred I started getting more joint pain and fatigue. I am now pred free and pains still prevalent, mostly knees.

I also have chronic psoriasis so the pains could have been psoriatic arthritis, but a referral to rheumy has discounted that. As part of the tests from the rheumy I had X-rays and an MRI but both didn’t show any real degradation of my joints beyond small amounts of wear and tear. The only options I had were to go back on pred or try physio. Physio didn’t really provide much help.

I do try and remain active through daily short jogs (1.5 miles with the dogs in the morning) and also try to cycle to work (2.5 miles with big hills each way!), but live with the pains.

Hope you find some help. Regards

Andy