Watch and wait: I finally got the... - British Liver Trust

British Liver Trust
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Watch and wait

I finally got the diagnosis of autoimmune hepatitis a few weeks ago after numerous tests, scans and liver biopsy. The liver consultant was keen to start me on steroids and immunosupprants but as I've previously had issues with steroids I wasn't keen. He arranged for me to see a specialist pharmacist who would prescribe the meds and oversee my blood results. I saw her last week and asked her if I had to take the steroids as my bloods are almost normal. She arranged a meeting with the liver consultant and my hepatologist and explained my concerns. The hepatologist said that as my bloods were almost normal they wouldn't be able to tell if the steroids and immunosupprants were actually working. He said that as there was very little inflammation they were happy to watch and wait. I will have bloods done in 3 weeks to see if anything has changed.

Although I'm pleased that I don't have to take aza which is a scary drug I'm also in sooo much pain. I have black circles under my eyes and my thigh muscles and shoulders are really weak and sore. Katie....I know you are very clued up about AIH so I'm hoping you can give me some suggestions. Apololgies for the lengthy post. Deb

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Your post is not too long, Deb. It helps us get the full picture. Where does it hurt, and why? Will steroids possibly resolve the pain? Pain is difficult; I hope someone here will be able to provide help. Thinking of you and hoping for better days ahead.

xxxxxxxxxxx

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My muscles and joints are really painful. Standing up from sitting is painful and slow! And the first 20 steps or so really hurt my hips and thighs. I have fibromyalgia which causes fatigue and muscle pain but this is ten times worse. Apparently aih causes joint pain and fatigue so I'm getting a double whammy. Deb

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Hi, Deb:

I've been thinking ... is there any possibility that physical therapy could help with the pain in your joints and muscles? I'm sure it would have already been suggested to you if that were the case, but I just thought I'd check. My thought is that typically, strengthening the muscles in your legs and core helps prevent joint pain, especially in the hips. However, since your joint pain is due to aih, I don't know if physical therapy would be effective. Sending good thoughts your way for some pain relief.

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Hi Deb,

Sorry to hear you are in pain, but good to hear you won't need the meds that worry you. Would it be possible to ask that pharmacist if he/she can think of something to help with the pain that could be discussed with your other doctors?

Best wishes,

Mary

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Hi Debs, I know you are already getting better advice than mine over on the AIH facebook page. My hubby (as I said over there) has never been put on Aza or any other immune suppressant and it was 2 years from diagnosis before he was even put on prednisolone (initially at 20mg) but quickly brought down to a maintenance dose of 5mg a day - his biopsies have never shown any active AIH inflammation and his is deemed burned out though it has left the cirrhosis behind. His 5mg is just to reduce any inflammation if they occur (as he never ever had symptoms from AIH his flares must have been masked by other things).

Can't really help with the black circles under your eyes or aching muscles as it's not something i've seen with hubby.

Katie

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So sorry you are in pain. I agree with Mary, ask your pharmacist and then discuss with your Dr. Katie is very knowledgeable. Love and hugs to you all Lynne xxxx

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Its a good job your on the ball, steroids are notorious for weight gain, especially on the tum. This is the worst place. It is possible the muscle pain is not related to your other ills? I am on buprenorphine patches. I have fibromyalgia and psoriaitic arthritis. Obviously it would need to be okayed for you , but it does take off the top notes, without it I would be well and truly done for. Chronic pain causes fatigue, this could be why you have dark shadows. I got a heated throw off my granddaughter for Christmas. Fantastic as it warms my joints and muscles. This cold weather is hell for arthritic pain, Vitamin D deficiency also causes muscular pain, worth getting it checked? Statins too can cause the same, I had to come off them for this reason. It is great though that your being seen by the right specialists and they are working together. Hazelx

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Hi Hazel, do the patches make you drowsy? Can you drive whilst on them. I used to take dihydracodein but I could only take them at bedtime as they made me so sleepy...I fell asleep at the wheel once, only for a second but I couldn't risk it again. When I was on steroids a few years ago for query polymyalgia and it was a revelation...I could walk like a normal person! I have refused to take statins, I'm in pain enough without statin pain. Even though I've had fatigue for 16 years with the fibro I've never had black under my eyes. I will ask for a test for my vitamin D level. I'm a big fan of my hotwater bottle for my back and have turned into a proper old lady and bought brushed cotton bedding! It's so cozy. I am also feeling the cold more than I used to. The main reason I'm loath to take steroids is because last time I had to take them I became insulin dependant. So the steroids and insulin means weight gain and it's impossible to lose weight while you're taking both together. Deb x

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I dont feel drowsy at all. I was on solpadol for a long time and people wondered how I could even speak! I went cold turkey, full withdrawal, but the patches do a good job at taking the edge off. As time goes on I suppose we become tolerant. It was a trainee at Salford Dermatology who mentioned vit D. Young Indian Dr who had an holistic approach, He was right and they make a difference. I have guided cortisone in my ankle and hip, 2 different surgeons. Ankle affected my walk now hip unevenly worn, bursa inside and out and spinal arthritis. I said but I dont have backache? Lower spine affects hip and groin. I used to be a workaholic. after 15 finally got the hang of the word no lol I suspect you are still torn? Old you and how you are now? Perhaps the hardest ting to master? Hazelx

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I've had guided cortisone into my left hip, cortisone injections into my right knee and right shoulder. Unfortunately none of them had any effect 😒 I was told many years ago by a rheumatologist that I had a bursa in my right hip. I don't know if they go away on their own or I've just lumped all my arthritis/fibro together. πŸ˜‚ I'm due to see my hepatologist in a few weeks and will talk things through with him then. I'll probably ask for a referral to a pain management clinic. Deb

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Were the injections guided? Mine were done by a consultant. Scan shows exactly were the needle is going. The hip one was done in theatre. Along with an arithrogram. I was surprised about this, but the hip surgeon hit the right spot. I have had surgery on my right shoulder for impingement. Knee will need op but to young yet. left elbow also under GA. carpel tunnel both hands. . Relief only temporary but better than zero. Still need yet left shoulder and both thumbs! But I dont look crocked! lol xx

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My hip injection was guided and done in theatre but the others were done by my gp. I've had surgery on both wrists for carpul tunnel, painful but worth it. For several years I had a painful right knee but it would come and go then for about two years I was in agony with my knee. I could barely walk and had to use a crutch and hire a scooter if we went anywhere. I paid privately to see an orthopaedic surgeon as the gp refused to refer me as I was too young at 55. The surgeon was disgusted by this and said if surgery was needed age wasn't important. We were both shocked when an MRI showed very little arthritis. It did however show a torn meniscus. I had surgery to repair the meniscus and he removed quite a lot of debris but the pain still didn't go. He would have replaced my left knee as it has moderate/severe OA but at the time it didn't bother me apart from at night when it was really painful. I declined the op as it's bearable.

In about 2004 I was in a lot of pain with my right shoulder. I had a cortisone injection and I had physio (which was sooo painful) and acupuncture which didn't help. I was then diagnosed with fibromyalgia which is probably why the physio was painful. My hands are really sore and hard to move in the morning but improve as the day goes on.

Wow, I sound like a real moaning Minnie, sorry. Deb

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Sounds like we both got in the queues! I have 5 different consultants , like you. You dont get to be seen with a pain in ur pinny lol. Like you I tried continuously to eliminate my pains, I did es a physio practitioner a few years ago. I was in there 1.5 hours! She then referred me to different consultants . She couldnt diagnose me but she was right on the money with everything. All upperbody and I had already been diagnosed with fibro. I know several people affected with it, My Mum was diagnosed with fibrositis, I was 11. Only discovered 2 years ago this is the old name for fibro. My hairdresser was diagnosed, then her sister and now their Mum. Its a pity people cant experience it just for a day - they would then see first hand . Like you Ive been pro active, now trying to sort my lower limbs. When I had my hands done the surgeon gathered everyone around. He said to me how on earth have you used this hand! Told him I had to consciously think hand open etc. When he cut the tendon I felt it go ping lol. He said job done I will close you up! I share my story on Fibro sites because so many people blame every single pain on fibro. I get messages of thanks back, All of these conditions are linked to inflammation, like our livers. Shoulder injections did nothing btw. surgery was a cure for my right shoulder. I need my left one done but my liver is no 1 priority now. On the plus side I wont have hep b. Due to the people I worked with I was vaccinated. Having a positive mental attitude is what keeps me going. This site too. Caring and sharing is a big plus. Hazelx

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