Methylprednisolone - PBC

[RishiMaini]

Is anyone using steroids to relieve some of the symptoms of PBC , specifically low-grade fever , fatigue, and muscle ache ?

Hi, my dad was diagnosed with PBC about 5 years back. Slowly and gradually his Fatigue, low-grade fever and muscle ache are getting worse day by day. It’s getting debilitating for him.

Recently he started self-medicating himself with steroid “Methylprednisolone” 4 Mg / day. As per him , he is seeing considerable relief with it. Worrying about this consumption, we got him checked for PBC + AIH overlap syndrome, but AIH is negative for him.

I am bit worried and want to know if anyone else has used steroids for PBC ? If yes can you please share the name and dosage for the same. Also, since how long you are using it and if any major side effects noticed so far?

I know weekend bones , high probability of catching other infections and high glucose levels is something to worry about. But unfortunately, as per my dad , this is only thing that is getting him going right now. Without steroids , passing each day is getting hard for him. I am just worried about this and want to have some better understanding if same approach has been used in past by anyone and what the overall results are. Appreciate your time and suggestions !!!

[Nellies47]

Hi.

I dont know about steroids and pbc specifically. However as a nurse, long term use of steroids are not recommended, also could his dr. not prescribe them if he needs them so that his bloods and possibly side effects of steroids can be monitored.

I understood that he is getting relief and thats great, but they are always used for short term treatments.

I know you want whats best for your Dad, so going through medical advice would be safer.

[RishiMaini in reply to Nellies47]

Thanks Nellies. As per his Doctor if he has AIH overlap syndrome, then use of steroids is justified. So we got him checked for AIH , blood sample were collected for hepatic autoimmune profile but AIH came negative. So per his doctor , he should be tapering down the steroid usage and stop it. But due to his daily suffering, my dad is not ready to do that. And yes we understand the long term impact of steroids but I guess dad is ready to take that risk ☹ Thanks for your suggestion and time!

[Nellies47 in reply to RishiMaini]

hi, i know and i completely understand to get relief is so difficult and to stop whats helping him, i know id probably be reluctant too😬.

Sorry to have gone all nursey on you....just felt i should.

However, coming from the fellow suffering side, i am trying, with rheumatologist to find immunosuppression meds to treat my autoimmune arthritis and so fare havent tolerated any of the meds. But if i did find one to give me relief id say id find it hard to let someone tell me to stop taking it.

I really do hope he gets sorted and stays comfortable.

Nelly

[RishiMaini in reply to Nellies47]

Hey Nelly,

No need to be sorry at all around being nursey 😊 , you are doing the right thing. I welcome all suggestions and your thoughts are much appreciated! You never know what will click!

I wish you get some relief and hopefully you will get the right medication soon! Take care and get well soon!

[Nellies47 in reply to RishiMaini]

oh, thank you, hope your Dad gets sorted too. Take care

[Candy12]

I maybe completely on the wrong track here, I have never had or heard of low grade fever as a symptom of PBC. Has he had his vitamin D checked, quite often those of us with PBC are deficient, I know in my case once this was in the normal range my pain improved measurably.

[RishiMaini in reply to Candy12]

Thanks Candy. That’s interesting and this has been bothering me for a while now i.e., is low grade fever really one of the symptoms of PBC ?

Can others in the community please share their experience as well ? Is anyone of you going through low grade fever as part of PBC ?

Getting an answer to above will really help me and I will know if further diagnosis is required for other possible autoimmune conditions (along with PBC) that can explain the fever. AIH is already ruled out and his RH factor is also fine. It’s odd that for him the low-grade fever episodes are very unpredictable and can happen at any time of the day. It stays sometimes for hours/days and sometimes for just few minutes . This has really baffled me. Its like out of blue he will have this episode of fever and then it will go away on its own. As per him , during the fever episode, he feels heat coming out of his body but when you check from outside by a touch , its not that bad but for him he is like burning from inside. Temp during this episode is measured at around 99.8 to 100.1 Fahrenheit.

Complete Vitamins deficiency test is still on plate. I will get this done ASAP. Thanks again for your suggestion around Vitamin D.

[Michi1 in reply to RishiMaini]

Fever is not a symptom of PBC. Fever + fatigue makes me wonder if maybe he has some kind of infection. If that’s the case, steroids knock down your immune system and would not be what he needs. I’d follow the doctor’s instructions and taper off the steroids, then check to see if there’s an infection they should be treating. There are ways he can address inflammation with diet that will make him feel better without the negative side effects of steroids.

[RishiMaini in reply to Michi1]

Thanks for the confirmation. His ESR definitely stays high and it has been like that for years now. Definitely something else is going on which the doctors are unable to trace yet . All the comments are helpful , I am getting an impression that others are not going through same symptoms that my dad is. It does justify further investigation. Others please feel free to share your thoughts , anything and everything is useful for me at this point. May be a fresh whole body MRI is required again. It was done 5 years back when they diagnosed the liver size to be small. Nothing else came up apart from reduced liver size in the MRI. This was followed by ANA M2 +tive confirming PBC but no other findings apart from this.

[tamarjaybird]

May have nothing to do with it but has he been tested for COVID? I 've just had it and had a high fever and my fatigue and muscle aches were a lot worse.

[RishiMaini in reply to tamarjaybird]

Thanks, Covid negative. Symptoms are there for past few years now. Its something chronic along with PBC.

[Chris21]

I get low grade fever on occasion, mine is usually when I’ve overdone things and I’m very tired. I dont take steroids.

I do also have lupus SLE/sjogrens as well as PBC and think it’s a combination of all the autoimmune disease that causes the problem. I’ve had to learn to pace myself. Usually I get a sign of feeling ‘unwell’ which is in keeping with my low grade fever.

Could taking steroids be masking what really is the main problem and why the doctors can’t find any other problem? I hope you find a solution.

[RishiMaini]

Thanks Chris . I am planning an ANA Bolt test for him which should tell if there are other autoimmune diseases involved apart from PBC. I agree that taking steroid is like masking what you are not aware of , but AFAIK, majority of autoimmune diseases don't have specific treatment apart from steroids to dampen the symptoms (if symptoms are beyond tolerance for the patient) . So even if we diagnose another autoimmune disease playing a part here, I guess the treatment options are limited! But yes, its good to have an accurate diagnosis.

So far what I am hearing from Doctors is , low grade fever can be directly mapped to PBC thus I thought of reaching to this community and check if others are also going through the same (which so far does not seem to the case with PBC alone).

[CeeCee101]

I was recently diagnosed with overlap RA and I am taking a low dose steroid, 5 mg. Probably for life. That dose is OK per my doc. Just Dexas, keep up with calcium and vitamin D3/K2, weight bearing exercise. The reason is many of the more traditional medications are contraindicated for those with liver disease. I’m not ready or able to start on much else right now. Anyway fever doesn’t seem common for PBC, has he been tested for MS? Ask doc about?