I have pbc and also arthritis. The two are probably linked, but my recommended treatment for the arthritis includes sulfasalazine pills.

[mm11]

Sulfasalazine is not good for the liver, although I'm told it is the least detrimental of the effective medications available for the arthritis, combined with intermittent steriod injections to the affected area. The arthritis is affecting my feet badly and making it increasingly difficult to walk so I'm thinking of having to accept the sulfasalazine. I wonder if anyone else has a similar dilemma, and in particular how they might have faired if taking sulfasalazine. Thanks.

[mumofthree]

I too have arthritis as well as PBC. I know exactly what you are going through but sometimes you will do anything for some pain relief. I have been diagnosed with osteoporosis of the spine and osteoarthritis in my hands and feet and was told by the rheumatologist just to take paracetamol or co-codamol for the pain but they do not help much at all. I get what I call flare-ups when nothing seems to relieve the pain so the GP prescribed Naproxen tablets - a non-steroidal anti-inflammatory - to take when the pain is really bad but was told to only take them if I really have to as they could affect my kidneys - as if problems with my liver was not enough!

I try and use heat treatment instead if at all possible - a warm bath, a heat patch depending on where the pain is, a hot water bottle or warm wheat bag is easier because you can wrap it around the area, and/or rub in Ibuleve or Ibruprofen pain relief gel - but you've got to be careful with that too because of the ibruprofen!. There are similar pain relief gels that have only natural ingredients in them which you can get from health food shops etc. its worth a try. Soaking in a bath containing Epsom salts is also meant to help too by removing toxins. But when I am absolutely desperate....if all else fails and needs must....I will take the Naproxen.

I am in a certain amount of pain all the time but over the years I have learned to live with it, it just seems to become the norm until I get a flare-up that is!!!. I have pain all over my body, in my joints, bones and muscles. My lower back, hips, knees, ankles, feet and hands cause me most problems. My wrists and ankles are very weak. My fingers feel stiff, sometimes numb, they throb with pain especially when a new nodule is developing, my hands feel as if they are hot, I have difficulty opening packages, gripping and frequently drop things. My feet are the worst though, I get shooting pains in my toes, they feel stiff and I have difficulty bending them, I have this burning sensation in the soles of my feet and I feel as if I am walking on pebbles. The pain is excruciating and make walking very difficult!! Getting comfortable footwear is almost impossible. I have to make sure that the insole has no stitching or little holes in them because however small they may be I can still feel them, its like the nursery rhyme about the princess and the pea, lol!! I have nodules on some of my toes so have to make sure that the material does not press or rub on them because the pain just shoots into my feet. If I wear sandals I have to get the ones that either come far up on the instep or with straps or otherwise I walk out of them because I cannot grip with my toes.

I am so sorry but this has somewhat turned into one big moan.....yawn! But basically what I am trying to say is, if the pain is too much to bare and I am really desperate I am prepared to take the risk once and a while and take the medication if all else has failed.

At the end of the day only you know how much you can cope with without intervention and only you can make the decision as to what you think is best to do in your circumstances.

Best wishes, you'll be in my thoughts.

[sillybilly]

Hi mm11

I have PCB/AIH and Ulcertive Colitis, I have been reducing my steriods for the last few weeks ,and I have had terrible joint pain but my feet have been really bad , and I have had trouble walking, if I sit for to long , I can hardly get going when I stand up . I have not heard of sulfasalazine but have been taking co-codamol , but it's not much help really . I just try to keep going , but there are times when I am get so fed up because everyone says oh you look so well , I don't bloody feel well is what I want to shout , sorry for the rant . Hope you feel better soon xx

[teddybear7]

I have both & fibromyalgia. Cocodomol & Naproxin when flareing up but not all the time. They don't relieve but make manageable. I seem to be doing OK on them. X

[Val02]

If the arthritis is inflammatory you can try hydroxychloroquine which is fine for the liver,. My rheumy asked gastro their preference between hydroxychloroquine and Sulfasalazine, and gastro choose hydroxychloroquine. It has made a huge difference to the pain but it does takes months to work. Incidentally my liver results haven't changed.

Whatever you try, you will have regular monitoring so they will soon know if there is a negative effect.

[annabritton]

I have found hydroxychloroquine to be very helpful as well. I've taking it about 6 months and it took two months to start working. It cut my symptoms in half. My liver function has been fine. I have been told to never ever take naproxen, but I should point out that I am post transplant.

Good luck.

[mm11]

Hi,

Thanks everyone for your helpful words. It's good to know there are other options. I feel better prepared for my rheumy appointment now. The list of side effects for the Sulfasalazine worried me a lot. Regarding the hydroxychloroquine -Val02 and Annabritton - I wonder if you found that when you started taking it you felt pretty poorly, but then recovered from the early ill effects? They said that would happen in the case of the Sulfasalazine, but I was left wondering about it. If I do take either of them I'd obviously like to think that eventually I'll feel a lot better all round. I was encouraged by everyone's support and good wishes.

[2006]

Hi! I have Arthritis in my shoulder and I went for a cortisone shot. It really helped! If or when the pain comes back I would do it again. I wish you luck!

[mm11 in reply to 2006]

Thanks for your good wishes.