PBC and PMR

[Gioielli5]

PBC for past 18 years. Now diagnosed with PMR as well. Very small chance of getting both. Anyone else out here with both conditions?

[DonnaBoll Administrator]

mayoclinic.org/diseases-con... I wasn't familiar with this. Since rheumatoid arthritis is an auto immune disease often people with PBC get, this type of disease seems somewhat in the same category. What do you do the help relieve the symptoms?

[Gioielli5 in reply to DonnaBoll]

Prednisone (steroids). Started on 29mg at beginning of March - pain at that time was almost intolerable- then reduced to 15mg after 2 weeks. Supposed to ‘taper’ by 10% every 2 months so don’t know why it was accelerated so quickly; by June on 9mg - ‘flare up’ and symptoms of steroid withdrawal. Still waiting to see GP but tiredness, pain and also now in liver are making me feel awful. I calculated that the chances of both PBC and PMR are about 1 in 2 million!

[DonnaBoll Administrator in reply to Gioielli5]

and you are the one... I'm so sorry this what's happening to you. So painful... taking steroids makes a lot of people feel badly as well. Keep us posted on how you are.

[Turquoise2075]

Hi, I have known two people who I've lost touch with now who have both PMR and Sjögren's syndrome, one in her 50s and one in her 80s. They both also have fibromyalgia (which I also have). There is a known crossover between PBC and Sjogren's and often shared symptoms such as dry, scratchy eyes. It does make you wonder how it all connects. I'm sorry you are having to deal with both conditions and I hope you can get some good support and symptom relief soon.

I was listening to a podcast earlier where UK doctor Louise Newson was interviewing Dr Felice Gersh, called "Oestrogen, your heart and the menopause". It's quite a technical discussion but one of the things they were discussing was the anti-inflammatory role of estradiol and how as this declines in relation to menopause it can lead to increased inflammatory processes in the body, affecting multiple systems. It does make you wonder about the development of multiple autoimmune conditions in women often from middle age onwards.

Take care and all the best.

[DonnaBoll Administrator in reply to Turquoise2075]

it sure gives you reason to pause about the connection. Sjogrens is one of the most common autoimmune diseases people with PBC have. Osteoporosis is the other one. There is still such a need for research on how it is all connected. Our bodies are incredible machines but when things go wrong...

[RunningRabbit7007]

Hi, Yes I have both. Diagnosed with PMR Aug 2022 then developed severe itching, raised liver enzymes July 2023. Diagnosed PBC in the Oct of that year. I take colestyramine for the itching but I refused Urso as I was worried about weight gain. I am due to see the specialist 31st July and will commence Urso as my ALP is continuing to increase.

I took Prednisolone for PMR for a year then stopped as it was making me feel so ill. I'm due to start methotrexate later this month.

[Gioielli5 in reply to RunningRabbit7007]

Thanks for replying. Think we are both quite rare. I calculate that less than 5 women over 50 in the UK will have both. Have had PBC for 18 years but PMR since beginning of this year. Still coming to grips with medication but hopefully will be back to normal soon. Please keep in touch. X

[RunningRabbit7007 in reply to Gioielli5]

I will! It's great to find someone else with the BOTH conditions. You are just getting going with PMR and I'm starting my journey with PBC! If you haven't already, you must join the PMRGCAuk forum on health unlocked. They are an amazing bunch of people with so much knowledge, I couldn't have got through the last two years without them x

[Gioielli5 in reply to RunningRabbit7007]

Yes already with them. So much good advice so far.

[DonnaBoll Administrator in reply to RunningRabbit7007]

I wish you would reconsider taking the Urso. It has been proven to be the first line of treatment to keep PBC from progressing - keeping the liver enzymes in check. Although there is some weight gain for some, not everyone has it. I think you have to weigh the benefits against a possible side effect. Please reconsider starting it. In the long term, it may so beneficial for you. No one knows how they will react to any medication that's new to them.

[RunningRabbit7007 in reply to DonnaBoll]

Hi Donna, I have reconsidered Urso, I'm seeing my hepatologist 31st July and will tell him I want to start on it. In February when I saw him last, my liver enzymes had reduced to normal range so we decided I would wait until the next blood test. Now my ALP is increasing I know I need to start the medication. I'll risk the side effects, I'm also starting Methotrexate for PMR 24th July so might be hard to work out which one causes any issues!

[DonnaBoll Administrator in reply to RunningRabbit7007]

I am so glad you are willing to take it... just stay positive. We are all scared when starting a new drug like I said before. I imagine you are having liver enzymes checked every 3-6 months. It can take up to a year for Urso to be effective. Try to be patient. Some see decrease in levels right away. Just know that Urso is always based on your weight - never lab results or symptoms. It's so important for you to be on the right dose. Often those who take it need to 'work up' to the full dose over a week or more. The Urso dose is always 13-15mgs/kg of your body weight. Again, I am so glad to hear your decision. Let me know how it goes.

[RunningRabbit7007 in reply to DonnaBoll]

I will, thank you, your support is really appreciated.

[Gioielli5 in reply to RunningRabbit7007]

Now in my 18th year and aged 70. Current weight is about 80kg and on 1200mg/day. Never suffered from the itch and put it down to being a vegetarian for the past 36 years. Occasionally get an aching pain in my liver but other than that I’m fine. Get blood checks every 6 months but since being on Urso and bezofibrates my levels have been normal. PMR is a new awakening but hopefully you both can help me get to a manageable level. Chat soon. Xx

[RunningRabbit7007 in reply to Gioielli5]

Always here whenever you want to chat. 🙂 Will update you once I'm on the Urso. Take care xx

[DonnaBoll Administrator in reply to Gioielli5]

Glad to hear you are doing well on your Urso. Now with the PMR you face many new challenges. Knowing you are not alone can be a real source of comfort. Exchanging what helps - and what doesn't - can make all the difference some days. Please reach out here anytime for support or to vent. Helping each other makes our group even stronger.

[LorraineLouise]

I have PBC , thyroid disease, and rheumatoid Arthritis. It’s not uncommon., if you have one auto immune disease to have another. Sometimes more. Sorry to hear. But with good medical team, things can be managed.

wish you the best of luck

Lorraine Louise

[zinchunter]

I'm not sure of any connections between PBC and PMR but I do know without any doubt that I got PMR within a fortnight of a Covid vaccination (Moderna mRna). This is not unique at all even though cases may be hushed up - after all the Covid vaccine messes with the proteins which is right in there with autoimmune conditions.

Diagnosis is difficult. Where, other than France, can you get a definitive PMR test within 2 weeks of the excruciating pain?

Now to Prednisolone. I started on 20mg (0.3 mg per kg body weight per the French who are much more scientific than UK) but, after dropping by 2.5 every 3 weeks had a reversal at 7.5. So upped to 10 and have been reducing at 1mg every 3 weeks, then by 0.5mg. It stands to reason -- the body cortisone level is around equivalent to 5mg prednisolone so the closer you get to that, the bigger the relative reduction is.

I have to say that after 18 months I'm still on 2.5, a level that I don't think is too worrying. In conclusion, weaning is necessary, but it has to be done at an appropriately slow rate to be effective and not cause problems and despair. Best wishes