Hi everyone, sorry I haven't been on much lately....had a lot of life changes to sort out...back on track now but feel so low today and have no idea why...perhaps it's the effect of isolation.
I haven't felt well for a couple of days. Consultant halved my budesonide to 3 mg and I kind of feel like I did this time last year...
I have noticed something else while in lockdown. It's happened a few times in the past 2 months. My left leg feels heavy and swells a little then within 48 hou6, my abdomen bloats/swells and then my breathing gets worse with wheezing..I mentioned it to my consultant on my phone appointment and he said not to worry....
I will be fine though, it goes down in a few days.
Please look after yourselves xxx
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Alley27
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Hi, sorry you are feeling low, it’s awful when it takes hold. I don’t have any answers but stay positive, there is always tomorrow and who knows what that will bring. Take care.
Hi thank you for your reply and yes I do feel a little more positive today. I am going out for a walk today. I have an allotment and I have not been out all lockdown. I expect there will be weeds,but theres beauty in those too, just as there is beauty in us....take care xx
Hello,
These are strange, challenging times for everyone and it is good to reach out for support , and I am sure you will find it here.
I have also included a link to the British Liver Trust information about managing anxiety in self isolation - it may offer a few tips.
I hope you managed your walk, I often find just wandering around the garden helps when I'm feeling low. Just remember, we're in it together and it's ok to not be ok. Feel better soon honey 💗
I felt a bit ghastly for about five days on cutting Budesonide from 6 mg to 3 mg, but perked up after that and been fine since. Being on long term meds and the condition it is treating is a concern and like you any weird symptoms are more of a concern than would have been the case pre-meds/medical condition. Seems consultant not concerned, just maybe cutting back the Budesonide is having some part in this, hope in a few more days you will be reaping the benefits of a cut to your steroid. I did feel more my old self once on 3 mg (manic and on the go the whole time on 6 mg and off the wall on full 9 mg).
Hi, sorry to gatecrash. your conversation but I note that you are taking budesonide and wondered if I could run something past you. I have been taking this medication (9mg per day) for a week now for autoimmune hepatitis but have developed a strange feeling over the last 4 days. I started with tenderness around my jaw line and down my neck and onto my shoulders. It felt like swollen glands or pulled muscles but the feeling has now spread round my back and along my collarbone and chest. The skin/muscles feel very tender and I have a burning sensation a bit like sunburn. I am beginning to worry about this and despite an internet trawl, I can't really find any reference to this type of feeling. As you are also on this medication, I wonder if you have experienced this or know anyone who has? I don't just want to stop taking the medication as I know you are not supposed to do that. Thank you for any advice you may be able to give.
Are you also taking azathioprine or another immunosuppressant as well as budesonide? I only ask because I did too have a similar reaction but it was five months after starting on azathioprine and budesonide, and this problem was about three months after I had cut back to 3 mg of budesonide whilst still on usual 100 mg azathioprine. So, if meds causing the problem, didn't think it was the budesonide. It was as if I had sore muscles in my neck and almost like I had a mild cramp in the entire neck the whole time, but it did not extend further like you are reporting. My white blood count at the time (had been in steep descent since starting meds) was very low and for the first time since starting medications, felt generally unwell, tired and depressed, Discussed with liver nurse in between waiting for next hep appointment and made a very slight downward adjustment to my azathioprine dose. Whether related to neck thing or not I will never really know, but problem resolved after a few weeks but during that time it morphed a bit and I ended up with a feeling of something stuck in my throat. I hope you can raise with your hepatologist or liver nurse quickly, because I fully understand you are very worried and need some reassurance. Find out what your blood results are ... you too might have a very low white blood count. (None of the medical people suggested my neck issue and meds were related by the waym nor to do with low white blood count ...and could be coincidence that slight cut to azathioprine eventually resolved problem. Hope it sorts for you.
Hi, thanks for your reply. I am currently not on any other immune suppressant medication. I was diagnosed 2011 with AIH and PBC. At first I was on prednisolone steroids with Azathioprine. I had a bad reaction to aza and so they switched me to mercaptopurin. This worked well for me until last year. I had several flares bad enough for hospital stay. I think my lifestyle or rather job, which meant I was never home, was to do with my decline.
I also came off steroids completely after 3.5 years. In June last year, because of another flare, they put me back on prednisolone. I did tell them that I did not like that medication because what it did to me as a person and the massive check list of side effects....
In june they swapped my mercaptopurin to mycophenolate and prednisolone. The mycophenolate just sid not agree with me, I couldn't function at all on them. I tried until October and they just didn't help me at all. In October last year, they finally took me off prednisolone and put me on budesonide...much better for me than prednisolone.
He took me off mycophenolate because of the fact I couldn't function...I mean I couldn't even spell when texting or writing. We agreed to keep me on budesonide 6mg for a year then drop it down to 3 which is what I am on now. I have had to wait until after I had a bo e density scan, which I had in January to discuss my next steps and hoping my bones would be ok. Unfortunately I have osteoporosis caused by long term use of steroids.
Then welcome in lockdown. I still have no agreed treatment plan for the osteoporosis and refuse to take the bisphosphates. I have been given HRT, and stronger calci d. I take ursodioxychloric acid as well for the PBC.
I have no idea what he will suggest next but I am willing to try something else, and of course I have to come off steroids because of the osteoporosis...such a whirl wind for all of us.
I currently feel unwell. The swelling keeps happening, but I think its water retention, I feel so unwell and very uncomfortable at times when I can't breathe or get my jogging bottoms over my swollen abdomen.
I am so tired so easily it's not normal even for our condition...and sometimes my head feels really Foggy and speech slurs..its bad but I keep on keeping on..live is valuable and precious and if you have to pop a few pills to keep you going then so be it.
It doesn't get any easier, but our bodies adjust and life changes help.
Don't get too disheartened hun it's all trial and error with us. I don't think anyone really knows what we go through.
Thanks for sharing your experience. I have not been given any other immunosuppressant - just on URSO (partial responder) for PBC and now budesonide. The symptoms I described have now stopped (fortunately) and I am being really careful with taking the meds half an hour before food. I am due for blood tests on Friday and then will discuss with my Hep when he has had time to review the results from those tests. Hope you are well and managing to keep sane if you, like me, are 'shielding'.
Hi Jane...I have never experienced anything like you described but recently, I have no strength in my upper arms, discomfort along my shoulders, back, waist. My legs feel weak and I just want to sleep all the time...I think they affect us all in different ways. If you have concerns then I would contact your doctors or consultant..obviously this is not right.
Thanks for taking the time to reply. Fortunately my situation seems to have resolved itself but will discuss with my Hep once I have had blood tests on Friday. It really does seem like everyone has their own experiences with these meds. I hope your discomfort resolves itself. One thing I have found really brilliant for aches and pains is taking turmeric. I have never taken supplements in the past but tried this and it cleared up all the constant aches that developed two years ago when I was taken off prednisolone. The fatigue can be absolutely crushing and I don't think 'normal' people really get how debilitating it is for liver patients.
I hope you feeling better soon.
Kind regards
Jane
Hi what is budesonide ? Hope you feel better real soon
Hi budesonide is a steroid but its actions are different. My consultant said that budesonide stays in the liver, so there are fewer side effects for those of us who have a terrible reaction to prednisolone.
The main side effects for me with budesonide are weight gain and feeling hungry all the time...my face is a bit fuller but not moonface...I feel better in budesonide than prednisolone.
Thanks Alley, you too.. hope this problem gets sorted or just fades away, I was concerned when I had this permanent weird neck, so know how you feel. Yes my bones have already suffered I fear. I find calcium carbonate not good for my digestion, so am buying in my own calcium citrate carefully investigated to make sure am getting right net amount of pure calcium. Has helped me feel a lot better making this switch..can't imagine it had anything to do with weird sore/stiff neck muscles, but that was another change I made around that time. Digestive issues also mostly gone with this change too.
Hi actually I wonder if my aches and pains are to do with the bone osteoporosis...calcium citrate..might be an option for me..need a high dose suitable for osteoporosis though if you have any suggestions as to what brand I might consider it ...
Calcium carbonate is actually the most effective and low cost way to get calcium supplements, but I have read that you need to have some stomach acid to absorb it and that certain foods taken near the time of the supplement can interfere with absorption too. I was working on that basis but the carbonate is very alkaline and think maybe have low stomach acid which was made worse by carbonate ... and then the omeprazole on top was a bit of a disaster. I am using Solgar Calcium citrate (4 a day for 1000 mg). I checked that this was net calcium intake from Solgar, but worth double-checking exactly as you have osteoporosis (I have osteopenia... sort of pre porosis). I do wonder at the timing of the corticosteroid when also taking calcium supplements - am going for one lot of calcium an hour after steroid in morning and then the second lot in the middle of the afternoon. Do also check the dose of Vit D you are getting now with anything you replace it with. I actually take a small extra dose (there is Vit D with the product I mention) because it is quite a low dose which is I think same with the usual prescribed Cal+ D3 supplements, I have to cover up against the sun being on azathioprine, and lots of information out there about the benefits of Vit D being a good level in body - even for fending off Covid19.
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