The norm lol

[Vespa27]

Well woke up this morning...and its another normal day in tbe world of AIH PBC. My joints hurt especially my hip and hands, and I still have this bloody headache that I have had since October...I am also really tired today..but hey....it's just the norm lol..

My second day steroid free, is it possible that my symptoms are to do with withdrawal from steroids. I have dropped them slowly so its been done tne right way

I feel like i did about 4 weeks before my flare....so I am hoping that it's not that..

But like I said just the norm lol xx

[claygi]

I’m sorry that is happening to you.

[Hidden]

morning vespa... im awake also... cant sleep due to stomach pain... i was very unlucky to end up with Pancreaititis after a proceedure...

i had a transplant in 2017 which went pretty well... but i have had some complications... hence the procedure... I'm now stuck with a large pancreatic cyst... review with consultant today... but am now a tricky customer....

can cope most of the time but struggle with the severe pain bouts... especially at 5am!!!!

at least we have this site.

best wishes cazer

[butterflyEi]

Sorry to read you are feeling poorly Vespa27

Headaches are so miserable and debilitating. To have one so long is to say the least unusual! Has the doctor any explanation for the headaches or has there been any investigation? Or perhaps hopefully it has been to do with the medication and you will lose the headaches once you are completely free of the steroid in your system. Hope you have woken this morning feeling a tad better.

[Vespa27 in reply to butterflyEi]

Hi got up aching and tired this morning, I find myself falling to sleep in the afternoon, something that didn't happen before. I asked the consultant if my condition was worsening, he said he was sure everything was alright, but this time I feel worse than when diagnosed. However, these headaches started just as I started feeling unwell in October. Followed by nausea and jaundice. Had fever at night as well just like the last two nights here. I believe they are to do with the AIH PBC. Actually the flare afected my handwriting and spelling. I am only just getting back to normal with my spelling. I tried to explain it to my consultant on the 10th but he didn't answer or rather he seemed in a hurry...NHS for you....I am better than 6 weeks ago but its a slow progress. Thank you x

[Hidden]

Hi Vespa,

I'm sorry you have a lot to put up with. I had a headache that went on a bit and got my eyes tested thinking maybe needed new specs. Is this possible for you? Does your head ache on waking then clear thro day? One of many causes of headache can be not getting enough oxygen while sleeping. (my sister had this). Could this happen to you? Did you ask GP about headache? It isn't always easy to tell all your concerns to gp's (especially if there's a note in waiting room telling us ONLY MENTION ONE PROBLEM PER VISIT)

I get a really sore left hip sometimes. This is side I sleep on mostly. I sleep that side to give my stomach best chance of not leaking anything upwards and making that sore! This all isn't nice but I am retired so no pressure on me as such.

It may be no comfort, but I think you are totally amazing to have all the discomforts and pains that you have and somehow find the strength to get to work in difficult circumstances. I'm sure everyone here sends you love and strength and is with you in spirit,

[ninjagirlwebb in reply to Hidden]

Hidden wow...it boogles my mind. One issue only???! That is not doctoring. Many of the issues are related & only helps to find a common cause. Hope you can bypass that rule. Where are you?

[Hidden in reply to ninjagirlwebb]

The NHS is free at the point of delivery. It has survived 70+ yrs and is wonderful. I'm thankful for it and it has met my needs. I've had cancer and I am not in one penny of debt for the huge amount of treatment I had, nor for any PBC issues/treatment. It's not a limitless resource tho' so there must be rationing, even if it isn't talked about. It's ok, but not easy. But where is anything easy?

[ninjagirlwebb in reply to Hidden]

Yes...healthcare is so important & knowing that it is taken care of makes life less stressful. This is certainly not the case in the US. Hope all these healthcare models evolve to take care of us better. For now we can only appreciate what we have. Take Care!

[Vespa27 in reply to ninjagirlwebb]

I often say, when I try to get an appointment, have 3 autoimmune conditions all serious do you think I might need to ask questions about all of them...usually my gp is good though x

[Vespa27 in reply to Hidden]

Thankyou x

[Vespa27 in reply to Hidden]

Thank you...actually considering leaving my job because my body cant cope...

Did 2 shifts new year, and suffered for a week, still not right lol...but rent needs to be paid. Cant claim pip I have tried and gave it up as a bad job plus, I don't want hassle of ESA. I find in Yorkshire they don't know enough about the conditions I have. X

[Hidden in reply to Vespa27]

Collette (PBCFoundation CEO) on her ?2nd? vlog speaks a bit about benefit claims. It may help you to ask her about it. It's hard to make a self-assesment. We think we can just keep 'managing' to do all the things we did when we were'nt ill.

[KimRenee in reply to Vespa27]

Vespa, I live in the US and I had to stop working. I applied for disability for PBC/AIH, hepatic encephalopathy, and osteoarthritis. They granted me 💯 percent disability due to my arthritis! Unbelievable. It’s actually my PBC/AIH that made it hard to continue working. So, you never know unless you try.

I wish you all the best.

[kimphoebe]

Hi there

I had my 3 monthly checkup yesterday and asked hep bout the constant headache and aching and he said it all to do with the fatigue caused by pbc. He also said that the muscle pain I get is due to acids not been cleared from my body.

But as you say Vespa just a normal day.

[Janicemr]

Hi Vespa

i like you have AIH/PBC I am coming of steroids and feel more tried and have pains in s lot of my joints and bones I have come down from 10 to 2

going down one a month it seems to be getting worse the lower I go

[JaneAnderson1966 in reply to Janicemr]

I came off steroids last May and as soon as I stopped taking them I noticed a significant increase in joint/muscle pain. It was fairly debilitating. I did however manage to lose a fairly significant amount of weight (much of it gained after 5 months on steroids). I have been taking a good quality turmeric capsule since September and have noticed a significant improvement in joint pain. It is still nowhere near normal but it is not restricting my life too much. I also find keeping mobile is helpful.

Hope you can get some relief

[Vespa27 in reply to JaneAnderson1966]

Thank you Jane, I was on steroids for 3.5 years from diagnosis in 2012, finally off of them 2015, but I must admit that last time was not half as bad as this time. I expect it will settle, unless its how things are gping to be. My job choice probably needs to change bit I am addressing that. Also considering retiring on ill health, but how do you claim pip with AIH PBC I tried and can't get it. Thats something else to look into. Take care hun x

[Vespa27]

Hi janicemr, I come down from 80 to zero so yes I am feeling it lol...I also am feverish and headache....and very thirsty. Came off the steroids gradually though as supposed to, bit all my joints ache and the AIH is playing up. I hope ir settles. I am going to try and get some sleep if I can. Take care.