Hi, I’ve been attempting to counteract the PSC-induced osteoporosis in my spine by doing strength training every other day on a two day split routine. I have been feeling generally a lot better for it and I’m eager to see if I’ve improved my dexa scan results when the next one comes up (enough to avoid bisphosphonates). The thing is…In yesterday’s clinic the only comment they had was that my ALT had started to rise again after gradually normalising post-hospitalisation and diagnosis last year. They have tested again and say they may prescribe antibiotics if it continues to rise. Then I noticed some online information which suggests ALT can be elevated by weight bearing exercise and the muscle breakdown it involves. Wondered if anyone else had experienced similar with their LFT’s being affected by exercise? I don’t intend to stop strength training if it’s helping with the osteoporosis.
After races or when I’ve really cooked my muscles my ALT will temporarily bump up along with a smaller rise of AST. They go back to their usual amounts when I resume my normal level of activity.
Here’s a study: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC2291230/. Interestingly, we probably notice ALT more than AST because it has a longer half life.
Thanks jtb, this is interesting.
I never have been concerned about how exercise affects my blood levels. It is better to have the positive effects, I think, on the body than to worry if it is causing some blood levels to go up or down.
But then I do not exercise nearly as much as I used to.
I’ve read in some nutritional information on fighting autoimmune disease that intense exercise might be linked to exacerbating conditions and I’ve often wondered (mainly because of a few of the ‘famous’ cases of PSC being sports people) whether there’s any link between this. I’ve also noticed on here that people that seem to be having an easier time of it seem also to be more regularly active. I certainly feel better for the exercise I’ve been doing to combat the osteoporosis.
For years I was told my high liver numbers were because I was extremely active. Then they discovered PSC…
I try to stay as active as my body will allow, liver numbers aside… I figure the benefits outweigh any concerns. I feel there are also mental benefits to staying as fit as possible.
I love to read the post on this site. It makes me feel less alone in this disease. I just had a cholangitis attack this week and have lost 10ish pounds (130 to 118). I have osteopenia and my doctor recommended to walk 30 minutes a day with ankle weights and then to also use weightlifting machines at the gym. What kind of exercises are you doing? As soo. As I am off the Cipro and healed up I plan on hitting the gym again. But I was worried about exercising and putting weight on at the same time. I struggle to gain weight and I am also lactose intolerant. However, When I ran a half marathon or year ago I did not see any changes in my blood work.
Hi Hikingbo, I hope you’re feeling better soon. Apparently even though PSC makes it difficult for us to fight osteo problems, the rate at which it reduces bone density is quite slow, I read something like -.1 per year. I have read on NHS sites that elderly non-psc females have been known to increase density through Calcium/Vit D supplementation and light exercise by something like 1.4 over 2 years…so it seems do-able. I don’t know what your hip/spine scores are but I have a normal hip and a -2.6 lumbar spine osteoporosis. The normal hip part apparently makes spinal damage even more likely for some reason. I have read that bi-lateral, compound standing resistance exercises with weights/resistance machines is the most effective as the skeleton reacts under the overall pressure by ‘thickening’ the points of stress where it’s needed. Standing dumbbell press, squats and deadlifts with as much weight that means you can only complete 6 repetitions for 3-6 sets is what’s recommended to stimulate the bones (too light a weight means the muscles will feel it but the bones not so much). I may work up to that sort of weight but at the moment I’m doing 6 sets of 8 repetitions with a reasonable heavy weight for each exercise. Obviously the form of each exercise has to be perfect, balanced and bi-lateral with no twisting or flexing of the spine involved. If the form isn’t able to be maintained, the weight is too heavy. I’m sure it must be helping, I wish they could test me now after 6 months, but I understand they usually test only every two years.
And then I found this study, which links increased intra-abdominal pressures brought on by heavy exertion with cholangitis and pancreatitis…Maybe it’s a balancing act between heavy enough to combat osteoporosis but not enough to bump the pressure (seems like that would be tricky)…or indeed is the malabsorption that created osteoporosis linked to intra-hepatic/biliary pressures aggravated by exercise…Wow, this ridiculous disease is so interesting hey, at least you know where you are with PSC (that was sarcasm)…
I think the study is specific to those who have had Roux en Y type procedures connecting the biliary tract to the jejunum and the results may be less relevant for those who are pre-transplant.
I’ve always lifted weights and after 12 years of PSC I was diagnosed with osteoporosis in my lower lumbar (-3 z-score). X-rays revealed that the front of my lumbar vertebrae were visibly compressed despite, and perhaps because of, my lifting. Two years of vitamin D and calcium brought my z to -2.5, but this has slowed down as the subsequent 4 years has only seen improvement to -2.3 (basically everyone else is catching up).
I think weightlifting is important for those with osteoporosis, though we do need to be particularly careful and there isn’t a lot of science/guidance about what is okay for younger folk dealing with this problem. I personally can’t do presses with any appreciable weight, standing or sitting, without lower back pain. I do squats without pushing the weight with no issues. I am way too gun shy to attempt deadlifts these days.
From my personal experience, heavy exertion was fine up until the point that it wasn’t. Early on when I was mostly asymptomatic I could get away with doing most anything. Later, when PSC really started to get serious, my symptoms would seem to get a lot worse when I really pushed myself.
Hikingbo - weightlifting is a good way to put on good weight due to gaining muscle mass. I lost a ton of weight myself, something like 25 pounds in a couple months, and I found that supplementing with medium chain triglycerides helped. Basically, as the disease progresses we have a harder time absorbing most dietary fats as these need liver bile to be absorbed. Fats are 2.5 times as calorie dense compared to protein and carbs so we are potentially losing a lot of calories. Medium and short chain fats can be absorbed directly, but the problem is finding these in natural sources. Coconut oil is one option and they also make supplements that are 100% MCT. I would dump a tablespoon of this stuff in each meal or drink to supplement calories and to help the absorption of ADEK vitamins.
It’s very encouraging that you improved to -2.3 without osteo meds.
Thanks James for sharing this article. For those of us who “have” had a transplant and with a Roux-en-Y procedure this is good information to be aware of. My problem is not too much exercise but getting enough period! Not being able to eat well those years with PSC, there’s something about getting that nice new liver that gives you one hungry appetite
Take care all.
Just a little update with regard to this: Last night I worked out, felt fine although a bit tired, felt great afterwards. Ate a small meal and eventually went to bed. Woke in the middle of the night with intense pain from the centre of my ribcage down the centre of my stomach and feeling like my spleen was ‘up’. Working out too late too heavy brought on acute splenomegaly and portal hypertension symptoms? Who knows, but will be mentioning to specialist and lifting a bit lighter I reckon.
You mentioned that you ate a small meal. Could it be that this possibly contributed to the pains you were having last night? I know sometimes living with PSC makes it hard to eat much of anything, but in addition to cutting back some on the intensity of exercise possibly, be sure you are getting enough calories and protein daily as well as good hydration. Hope you can get some good answers soon from your hepatologist.
Thanks Mark, I actually have a large appetite all the time, just don’t like eating a lot that late in the evening. Will look into it as I’ve had these things come and go before. I’d say I get more spleen and central pains with very little and occasional RUQ pain…They were checking my IgG4 levels again so it’ll be interesting to see what that is. I do think internal pressure from exercise is exacerbating what’s going on though, especially things like bodyweight dips, which are incredibly intense as I weigh quite a bit and I’m fairly weak at them, so they’re gone…Not worth rupturing something.
Thank you all for your suggestions I will look into all this. Still not feeling great and had horrible trip to ER last night. Does anyone ever find their ER visits to be less than stellar? The doctors there flat out refused to consult with my liver doctors, even though I was talking to one via text message. I was also told I was urgent and had to wait 8 hours before seeing a doctor. My symptoms were headache hot flashes/ chills with lots of vomiting and I had my muscles cramp up and tingle for a while in my hands, legs, and face. They also told me everything looked “fine” other than my liver enzymes which are trending down right now after my cholangitis attack. However this morning I saw abnormal results for lipase, CBC, and urine.
The way you were treated is inexcusable. If you have a major transplant hospital within driving distance of your home, I’d go to their emergency room next time. They have hepatologists on call all the time and should be able to take care of your needs post-haste.
I’ve had problems with a smaller ER and would recommend larger hospital, particularly one associated with a transplant center.
Hikingbo - talk with your hepatologist about a game plan for when you think you are having an episode of cholangitis. An as needed prescription for antibiotics for when you initially present with symptoms could help things from getting worse and you out of the hospital.
Yes it’s unforgivable that in 2019 they aren’t all clued up on PSC and cholangitis, however rare they might be, it’s a known medical emergency and they shouldn’t ignore symptoms or treat you as non-urgent. I’ve been told that there’s no point discussing the condition with anyone other than the specialists, which is no good when the specialists are over-burdened with workload, a regular GP or hospital doctor should be able to provide advice and act according to your needs.
I think that was the frustrating part. This is a very large hospital and my liver doctors work for the hospital. Also they told me once I was admin they hadn’t even run a liver panel with my blood. We had to wait while they went back and did that. I have filed a formal complaint with the hospital and emailed my liver docs that work there to come up with a plan so this doesn’t happen again. Thanks for the suggestion of MCT I am going to look into getting some of that for weight gain. For my osteopenia I have a z-score in my left neck is -1.5, my left hip -2.1, and my lumber spine -1.4. The dexascan scan report says I have had a significant decrease in bone density in my left hip -3.2% and in my spine -4.2. They put me on 35mg of alendronate along with continuing my calcium.