Prednisolone seems to have stopped the war in my body but still very fatigued not tired just worn out can anybody tell me how long till thes

[Alan55]

E symptons go any advice would be appreciated thanks alan

[Lupylass]

Hi Alan

Have you been put in any other drugs? I was put on hydroxychloriquine when first diagnosed, and prednisilone helped until the hydroxychloriquine took effect (for me 6-12 months).

The fatigue is the symptom that I think can vary from person to person, although hydroxychloriquine should help. I remember asking my rheumatologist if it would ever improve and she informed me I'd have to get used to living with a chronic condition. It was difficult to accept at the time but I needed the truth. These days I have a relatively full life. This weekend I've been for long walks, a cycle, a meal out, shopping with a friend and so on. I'm now on the sofa with a blanket on me, fighting to stay awake, but I've crammed a lot in!

Give it time. Learn to pace yourself. Don't do too much on the days you feel well. You'll find the right balance, and may find a gradual improvement. Allow for setbacks too.

[overnighthearingloss]

Many consultants these days try to keep their patients away from steroids or at least only to prescribe a maintenance dose along with some other sort of immune suppressant.

Steroids, for me, are the only drug that has halted a flare quickly. But when they try to taper my dose I often get flare symptoms again. I am being told to increase my intake of mycophenelate mofentil to lessen the need for steroids. Time will tell if this works for me.

When I have had a flare halted I generally feel really washed out. This can continue for a long time if any steroid reductions are attempted too quickly. I cant seem to get off them completely no matter what they are taken in combination with.

I have read that some peoples adrenals stop working properly when on steroids and thats why some people cant leave them behind entirely.

If i catch a flare early and manage to get it halted early there have been some instances where i have felt better within 24 hours. But its probably wise not to plan to climb Everest for a while at least.

[Hidden]

Hi Alan, as lupy lass has said, other drugs need to go into the mix, and they can take a while, if you have only recently started them. Now you have been diagnosed with lupus, you should have had other tests, (bloods), to see how else the lupus is affecting your body. Anaemia is a big problem and although fatigue is an even bigger symptom, your iron count,( ferritin), can be low even if your blood count is normal. I had this recently, when my Dr argued that I wasn't anaemic. I said to check my ferritin which she very patronisingly did. My ferritin was 6 . Had to have iron transfusion for 6 weeks. The reason I knew this was because I have had this happen 3 times previous but I lived under a different health authority. My count is now a healthy 256. Fatigue may be your biggest issue, I hope not for your sake. I have more joint issues than other sufferers, we are all different. Glad that preds have helped most of your symptoms. They are a necessary evil.

[Alan55]

Thank u all for the prompt replies all are helpful not sure what or how many autoimmune diseases I have steroids stop the war now waiting for rheumatologist to get in touch also autoimmune hepatitis has come up (kidney scan this week) also been to eye hospital this week with very dry eyes given eye drops bloody confusing the immune system

[misty14]

Hi Alan55

I find the fatigue is one of the hardest symptoms to live with, usually steroids do help with this but it does take time to improve. Also your like me having other auto-immune illnesses that can cause fatigue just adds more and more tiredness. Good luck with your tests coming up! Misty.

[tremarel]

Hi Alan steroids are such a God send they've kept me alive for 35 years but the fatigue is always there. It is the worst thing. A nights sleep never cures it does it. Everything is such an effort. Just take it easy & do what your body tells you, never push yourself. It is hard to explain to someone who doesn't take steroids how it feels. All the best Alan

[Alan55]

Thanks tremarel reduced dose of steroids 2 days ago but feel muscle pains are quite severe this morning so have upped my dosage again c if this fixes it bloody hope so does this have a strain on your mental health as well ? Alan

[Hidden]

It can stress you out mentally Alan. It is a very difficult disease to deal. Because it strikes, anywhere and anytime, you can never be assured of any decent relief. You are finding out for yourself it seems, how brilliant, steroids can be. I cannot do without them now, but hopefully another immunosuppressant can be introduced to help. Until your AIH query is sorted, the Drs are limited with what to prescribe. I am in the same boat at the mo. I was referred to gastro 11th February. Still have not got appt, despite phone calls.

[Alan55]

Thanks 6161 really stressful when just to bend to put on a sock is hard work and painful hoping putting myself back on higher dose of steroids will help oh well back to drs again tomorrow with latest report I suppose hope u get your app soon and thanks for your input again Alan

[Herb]

Hi Alan,

Hopefully soon you will notice some improvement, I agree with what the others have said.

However steroids are a very strong drug and I don't think its a good idea to change the dose yourself without talking to the doctors first, steroids can actually be quite physically addictive as well as having a load of side effects.

Usually we will be on some other drug as well such as azathioprine, methotrxate, hydroxiquine also the blood tests should be done regularly until things settle down.

[Alan55]

Thanks herb dr was ok about me upping my dose to30mg a day and has decided to keep me there until Friday when they r going to try to reduce the dose again

[madmagz]

Hi Alan

I have been on Prednisolone on various doses for quite some time, I have had lupus in total for almost twenty years started with discoid and went systemic. I find that most of my symptoms can be well managed but the fatigue can still be a problem I have come to terms with the fact that if I need to nap I do and if I have to go to bed early then so be it. My friends and family have come to accept it as part of being me. I have coping strategies for when I am travelling to and from work like standing up three stops before the one I need on the train to avoid being woken up by the train driver when the train terminates! That stops me getting to comfortable in my seat so I can't nod off! I preserve energy and if I can do two things in one go then I do to save myself going to one place - especially up the stairs twice. I have gradually taught myself energy saving techniques for my body over the years.

Also as mentioned by somebody else I found things did improve when I started taking another drug too, I am on Methotrexate and find that it has made a big difference to me, I used to be on Azothiaprine.

All the best and I hope that you manage to cope with it

Madmagz x

[Alan55]

Hi madmagz still waiting to c rheumatologist but drs have told me autoimmune issues have lots of flares seems to be muscles also hands have been affected on this latest flare had to go to eye hospital last week been given drops to put in my eyes 4 times a day now AIH has been added due to smooth muscle test showing irregular having scan of liver 2morrow don't know how many immune disorders u can have

[Hidden]

Just read your AIH diagnosis Alan. Another buggar on the list !!! I rarely read a post on here, where a member just has fatigue,joint pain, and maybe the odd rash. I know these people exist, but maybe they can manage to have a life and have good control of their lupus. Lupus is the worst autoimmune disease as we can get a bit of everything else. I only found out the other day that autoimmune diabetes exists too. If I wanted to be specific, I could say I have at least 5 Auto conditions, but lupus is the ringleader. Get control of that, and the others are controlled too. Sadly we can't control it ourselves and sometimes the Drs struggle too. IMO, until they find the proper treatment for us, ( most of these meds are for other conditions), we cannot hope for a cure. Wonder what you will be prescribed now, re AIH. As I said previously, am waiting myself for liver to be sorted. Good luck with scan.

[Alan55]

Thanks 6161 we all seem to be in the same boat with this