After 6 weeks of swollen joints and terrible stiffness and pain, I'm seeing a rheumatologist tomorrow (Thursday) at 3:00.
This question is for anyone who can give me some insight. I'm bringing a list of my meds and supplements. Are there any questions I need to ask him? Anything about medications he may prescribe? Anything about tests to run... blood work or otherwise? I'm scared its RA. If it looks, walks, and acts like a duck, I guess there's no sense in hoping it's a swan.
Still, anyone with experience in this area would be helpful.
Thanks,
Stella
Dx PBC 10/10/16 early stage
Me and Joel (My sweet husband for 28 years. ❤)
Written by
Ktltel
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41 Replies
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Good luck to you. I'm praying for you. I wish that I could help
Also suffer from sore joints mainly in wrists fingers, ankles and shoulders. Had a test for RA which proved negative so told it was osteo -arthritis and nothing they could do to help it. So now just take paracetamol to ease the pain. Good luck with your visit - hopefully you will post the result.
You could ask your doctor for some Capsaicin Cream. Rheumatology prescribed it for me, I was sceptical at first but really helps with osteo and builds up long term pain reduction.
Sorry you're in pain, and that's the first thing maybe; ask about some safe pain relief in the short term. Needn't always be pills, sometimes topical gel, heat or cold - whatever helps. No doubt your rheumatologist will do a complete autoimmune assay on your blood, but you probably won't get results till your 2nd visit, or on the phone, so in some ways the 2nd consultation may be more significant. If possible, organise that appt. 10-14 days after.
If this is an acute flair-up of something, don't be scared; often these acute problems can be quietened down or knocked back altogether with some of the wonderful medicines that are available, like Prednisolone (Prednisone in the US?). Whilst no-one likes taking strong drugs, a short course of something which is then gradually reduced can make all the difference, and I speak from experience.
I love your duck/swan analogy! RA is only one of several AI profiles which have similar symptoms - I didn't have the RA marker but other signs of inflammation showed up in my acute phase of joint and tissue problems. These conditions can often be reduced to a background 'grumbling' level, and in that case, whatever type of water fowl it is, you'll take it in your stride. Maybe it'll go altogether - anything's possible!
Hi Stella. So grateful for your reply as you have reminded me i already have a shelf full if those meds you mention in varying strengths. My joints too are incredibly painful and swollen esp in my hands.
It's terrible. I move around so slow. Yea, he put me on 15mg of prednisone to be tapered down over the next 3 weeks. After that we will see. Do you drink coffee? I miss coffee but I'm feeling sorry for myself and really want some. I heard coffee is bad for arthritis. Maybe PBC too. Anyway I'm waiting for results to see what it is.
Hi Stella. Actually coffee is excellent for pbc. But sadly i can only have one organic decaf before i get the worst cramping. I love it too. Yess sick of feeling 80 at 59. My mother in law 86yo nearly moves better than me. Well up to a year ago she could run rings around me stamina wise. But this inflamation in my hands and wrists has not bothered me since i was first diagnosed. Every thing else aches but my hands had improved. Not impressed as i love to knit and crochet as well as sew and do embroidery and crpss stitch. Getting old fast is no fun.
Any way i am going to try my stuff when i get home and see how it goes.
Have you ever been diagnosed with what kind of arthritis you have? Or did you say and I missed it? It seems the meds are the same no matter what kind you have I guess.
Me too ButterflyEi. I will be in touch. Thank you.
Hi...just wanted to wish you good luck with your appointment today.
I'm under a Rheumatologist. Was referred to him after years of joint pain (wrists, fingers, elbows which my GP always attributed to RSI type issues due to many years of typing at work). The Rheumatologist prescribed Hydroxychloroquine for the joint pain and it has helped. It's actually my Rheumatologist who discovered I had PBC following many different blood tests so I'm now under both.
Hi Ktltel. Yes I think Planquenil is another name for it. I've been on it since Nov 2014 and it really has helped with the joint pains although occasionally I have a 'flare up' for a few days but they are few and far between. (experiencing one at the moment)
I understand Hydroxychloroquine can affect eyesight so I have annual tests to check all is ok. However recently I've noticed my eyesight has deteriorated and I struggle to focus so I'll mention it at my Rheumatologist appointment next week. I'm not sure if it's an affect of the medication or just old age catching up with me!
That how i was diagnosed too. Same pains . Saw Rheumatologist. Was refered to liver specialist. Put on urso and voilà my pain mostly went away until recently. Also thinking i might go back to Rheumatologist for my recent flair up.
Generally I'm pain free but I'm going through a flare up at the moment - my wrists feel like they will shatter and break with every movement. I'm due to see my Rheumatologist next week so will see what he says...
Please can you tell me why your rheumy referred you to liver specialist. Did you have abnormal blood liver results or did the rhumy find AMA-M2 antibodies when profiling or both thank you
Hi Daisy. Yes i showed all the blood results that were indicative to PBC. I was sent for final diagnosis and for a biopsy of the liver. It was a long time ago but i presented with terrible pain everywhere . Liver area Hips knees feet hands wrists fingers back neck. Had terrible fatigue and itch and was having biliary spasms when i took pain relief that contained codene. High blood pressure and weighed about130 kg. I have since developed allergies to many pain meds. I was also having blisters on my hands and feet that would itch intensely and then dry up and my hands and feet would peel.
After going on urso many of my symptoms resolved themselves
Thank you for the reply. I was wondering because because it is my Rheumatologist that has referred me to gastroenterologist because he has found AMA-M2 antibodies when doing my autoimmune profiling blood tests.
I had all the symptoms you listed above when all this first started, that is the pains etc. The thing is i haven't yet had any abnormal liver blood tests, or the itch. I have had fatique at times but that could be due to any autoimmune condition, he thinks i my have sjorgrens aswell. Since i have been on hydroxychloroquine my symptoms have all calmed down.
I think i will just have to wait and see what the gastroenterologist has to say.
Another thing I keep forgetting to mention is during each of my pregnancies I suffered an insane itch and as early as my late 20ies I developed an allergy toperfumed soaps and shampoo and conditioner.
I too think it's possible I may have sjorgrens and when I see my holistic Dr I am going to ask her to test for it.
I don't know much about RA but a couple of friends have it.
One has swollen joints and throbbing pains. His blood test for RA is negative but the doctor gave him some small dose RA medicine and it helped.
Another one had severe RA and she had to quit her job. Medicine did not help her. She found stress and non-organic chicken cause the flare up. She now manages RA by eating organic food, mild exercise and sauna.
I have the same symptoms along with others. My Rheumatologist thinks the arthropathy is due to PBC. I have not been diagnosed with PBC at present, i am asymptomatic, no abnormal liver reading etc. I am negative for RA but my rheumy says i have some sort of inflammatory arthritis.
I have been under the Rheumatologist for 4.5 years, had problems for 5.5 years. I was on steroids when my problems first started, prescribed by my GP. I continued on them from Jan 12 to Dec 15. Also on arcoxia (anti inflammatory) as and went from sept 14.
I was on arcoxia only from Dec 15, i found it not enough to control all my symptoms. I have since been put on hydroxychloroquine and now doing well apart from mild flares.
I think i would ask for a full antibody profile at the very least.
an antibody profile is a full test to check for different autoimmune diseases.
Yes the medication is mostly the same for aches and pains. I get Jain pain in my knees, elbows, ankles, and fingers. I also get stiffness in them along with stiffness and aching in my shoulders hips and lower back.
I am not on any special diet i believe you should carry on as normal as possible. I haven't yet got a diagnosis of PBC so i have not adjusted my diet to help that.
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Urso and rapid weight gain
Seeing dr for possible diagnosis today... stressed
Feeling a little frustrated
