what a roundabout

[Alley27]

Hi everyone...I posted a while ago about me being put on a new medication called mycophenolate..it's not new to AIH/PBC, but it is new to me. I have been on this for around two and a half months now. In the beginning lots of side effects which seem to have settled down. I was mid flare the last time I posted on here and that was the second flare within 4 months. I was feeling ok until today...i have headache, nausea, I am tired, I ache, my pee has gone back to a very dark colour and I have absolutely no appetite and I can feel my liver is enlarged yet again. Is it possible that I am in yet another flare...it's similar to the last time, and the one before...it's a very fast roundabout that I can't seem to get off of. Despite the change to new meds, plus Prednisolone, which is now down to 5mg per day, I keep getting these flares...

My consultant said he wants to change me to budesonide steroids, I agreed in principle but I am still waiting for the switch to happen. I was told by the consultant secretary that there was a 21 week waiting list for appointments. Today I had to ring her for a prescritption because you cant get mycophenolate from gp, and I need some blood forms..she rang me back and they have finally given me an appointment for 10th October, which is good seeing as they said 21 weeks.

What should I do, should I increase the steroid by 2.5 mg to see if this helps until I get to see the consultant in person. I hate the damn steroids but agreed to take them this time for a longer period...or should I ask them to review the new medication because it's not doing what it supposed to do...

Any suggestions welcomed. I know you are not consultants or doctors but experience counts very much in my mind.

Thanks guys very much

xxAllie.

[Hidden]

Hi

Maybe ask them to review new meds as they aren't be doing what they should be doing. Take care of yourself Lynne

[Jillsky]

Hi Alley27. I am a woman in her 60’s living in New York, and was diagnosed with AH 5 years ago. I have been on Mycophenolate for the past 3 years. I take 1 gram twice a day. I am lucky that it seems to work fine for me. I have only had one flare in 3 years, and my doctor put me on a heavy course of prednisone for a few weeks until my numbers came down. I despise prednisone and all it’s side effects so I am happy to just be on Mycophenolate mofetil and nothing else. I am being monitored by taking monthly blood tests to make sure my liver numbers remain down. Please feel free to contact me any time since I know there are not too many people with this condition and somethings it’s hard to get any feedback.

Best regards... Jill

[Alley27 in reply to Jillsky]

Hi jillsky thank you for your help...I was diagnosed with AIH PBC overlap in 2012, so 7 years ago. I was on mercaptopurin for 7 years and all of a sudden in July of this year, they switched me to mycophenolate, which is equivalent to 2000mg per day.

I have had several flares over the last 18 months, but I hold my life style at the time responsible. I work event security so a lot of travel up and down the UK, staying in places that have no cooking facilities, and sharing rooms with others. Not good considering the lowered immune system.

I am struggling with the side effects of the mycophenolate. My main issues are nausea, weight gain bloating....

My abdomen keeps swelling and I look around 8 months pregnant some days and how its made me look, makes me feel low.

I guess the prednisolone doesn't help, but I am now on 5mg per day and going to drop it to 2.5 if my latest blood results are normal.

Any suggestions as to how I can manage the side effects please. The weight gain is my first to address. I am supposed to be getting married next may, bit not if I still look like this.

Thanks in advance

Alley x

[Alley27 in reply to Alley27]

Update...I rang my Gp and I have my first normal blood result in 12 months x

[ThreeSmiles in reply to Alley27]

Coolio 👍👍👍

[Jb1111 in reply to Jillsky]

Hi Jill

Just read your post - I’m on Mycophenolate. Having various issues . related or not ? I’m unsure -

It’s just nice to find other people with Aih

Like you say it’s rare - but nice to know that We are not alone - keep safe

[Jillsky in reply to Jb1111]

Hi. Just read your post. Nice to hear from you and hope you’re well. Hopefully you will get used to the mycophenolate. It really seems to be working for me. May be a little weight gain at first, but that’s probably due to the fact that I love to cook and go out to dinner ha ha. I go every month to get my blood tested, see the doctor every three months, and go for an MRI every six months. I was due for an appointment on March 24, but had to cancel the MRI because labs were closed in Manhattan due to coronavirus pandemic. I was able to have a video appointment with my doctor though.. .. shortly after that I contacted coronavirus, luckily a mild case. Spoke to doctor on the phone and was not severe enough to go to the hospital. I am feeling great now just got tested and I have the COVID-19 antibody although I’m not sure what good that is going to do me but I feel a little reassured. Being stuck in the house for such a long time I read everything online and also confirmed with my doctor that’s taking immunosuppressive actually helped me through my bout with COVID-19. It seems the immune system goes crazy and overreacts in a lot of patience with coronavirus, and immunosuppressive seem to calm it down. Whatever the reason I am lucky, because there were so many fatalities in the New York area especially New York City… Horrible. Be well and stay safe. AIH is usually manageable once you find the right meds.

[Jb1111 in reply to Jillsky]

Hi Jillsky

Thanks for your reply - much appreciated - hope your okay

J

[Alley27 in reply to Jillsky]

Hi jillsky it's so very nice to hear from you. Yes I tried the mycophenolate and unfortunately it didn't work. I started it in June last year along with prednisolone. But 6 months in and December last year I had to stop the mycophenolate, I could not function. I had a very odd reaction in September. Where in 4 days I went up a whole dress size. I had a dress which I had bought on the Monday and it fit beautifully. It was for an annual British legion function and dinner.

The Friday morning I tried the dress on again and it wouldn't fit. I felt lik a beached whale. Everything was swollen, my engagement ring had to be cut off but the week before it fit. Everything got bigger and I mean everything. I had to go spend more money and buy another dress. I was so embarrassed and hated having my photo taken. I will show you what happened in photos .

In October, they put me on budesonide steroids. I absolutely despise pred so they decided to try me on budesonide.

They said not as many side effects, that bud stays in the liver, no moon face or weight gain, nothing....well I beg to differ. I put on another 2 stone with budesonide plus I have been told that the steroid use has caused osteoporosis.

Currently I am only on 3 mg budesonide and urso. I have to wait until I get my bloods done next week before we can decide our next move. I am willing to try something else even azathioprine if necessary. I also feel unwell ar the moment. I have vitamin d deficiency I cant walk too far because of fatigue. My friend gave me her old mobility scooter to help. But I am currently shielding because we have to.

I'm just so fed up and need help....can I ask how long it took your body to adjust to mycophenolate...I would try this drug again if I knew my body would adjust. I was really unwell this time last year...so anything is possible.

I think had covid but the milder form. I think because of my immune suppressant medication. Not sure but have asked for an antibody test. I have to wait though. Doctors with not enough information.

Please look after yourself and stay safe. Hopefully this will all be over soon because it's a nightmare.

Love xx Alley x

No idea how to post pictures on a reply I will just post separate x