Hi There I am new and live in Australia, can't seem to find any support groups like this here.
They aren't really sure if it is RA or Lupus or combo but they are talking methatrexate for treatment. I am a little freaked as this is a chemo drug and as I had a child that died of cancer I am intimately aware of the side effects of chemo. But first things first I have to have a liver biopsy as my LFT levels have been consistently high for a year now. I work full time and wonder what the usual side effects are, not the bs they tell you in the blurbs but the real side effects and if I will be able to work full time while taking it. I also have multiple chemical sensitivities and have allergies to most antibiotics so I am not keen on taking anything that may cause infection as I have very very limited options for antibiotics.feeling a bit freaked out here! Can I just take nothing?
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Someonesmother
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Try not to worry. Methotrexate is I think the gold standard treatment for RA these days, sometimes with a biologic anti-tnf. The doses are quite different to the uses for cancer treatment - much lower. There are side-effects sometimes. These are well documented and you should find them on either the NRAS or the Arthritis Research UK websites. But not everyone suffers on it. You point to problems with your liver and with antibiotics, so obviously you need to consult your medics about your reservations.
Methotrexate can put people back on their feet.
I'd follow what the doctors say. Taking nothing could mean that you suffer joint and other organ damage, whereas the meds available these days can help so much.
Good luck! And incidentally - welcome to this forum
Thanks for that. Yes they are a little freaked as am I because I have allergies to so many medications and won't know until I actually take it. Not looking forward to feeling sicker than I do now though. It has been a year of hell trying to get listened to and now the meds will just make me feel worse. I am barely able to get to work now hate to think how much harder it is going to be.
Sounds horribly complicated, it cant be easy to unscramble allergies and things. Do you have an understanding employer? I used to work in a university, teaching and doing research. The most supportive people were my students, colleagues were just concerned that I didnt add to their workload. But I was lucky enough to be nearing retirement, so decided to go before I was pushed.
If your employer / work generally is flexible - I found that being able to work from home was good. I'd go in to work around 8 and be home by about 2. Have a sleep then I'd start again.
I think that when I started methotrexate I was on the very smallest dose, then gradually increased it - to minimise reactions I suppose. I think that should apply to all.
I work for the govt and while they say they are tolerant etc in reality not as it is an individual thing.Only people in managerial positions get to work from home not plebs like me.I am 53 but cannot retire as I would have no income and how would I afford all these expensive drugs and supplements and dr visits I now have to do..
I also have hiatus hernia and am on PPIs for acid reflux - GERD so am a little concerned about how that is going to work. Chances are I won't be able to take it as my LFTs have been so high and I have no idea what else will be offered.I have seen rheumy once when he told me I had an autoimmune disease and they weren't quite sure what it was and come back in 6 months. It has all been phone calls and letters so I have no opportunities to ask questions of them as they are in their ivory castle and no patient ever gets through to them. Very frustrating.
I can imagine how frustrating things must be. Are there any patients organisations you can call on? I know the health system is very different in Australia...
hi there, I'm sorry to hear of your problems, and the lack of support which makes it 10 times worse. I have acid reflux and take PPIs alongside methotrexate(MTX) and that doesn't cause me any problems. And I don't have problems with taking MTX either now. The leaflet is scary and if you have experience of chemotherapy I really understand how frightening it must sound to you, but for most people the low doses we take don't cause problems. I had some side effects for the first couple of months, but they wore off and the drug has basically given me life back. I was nearly bedridden by the time I got diagnosed and now I'm just about normal again, and out and about with no problem. And I haven't had so much as a cold in the three/four years I've been on it - and I take other immunosuppressant drugs as well.
But if your liver means you can't take MTX there are other drugs that can be tried. And really the drugs are better than damaged joints... Good luck. Polly
Hi Someonesmother, As Cathy said welcome to the forum I'm sure by the end of the day you will have received good support and advice from all who reply to you and put your mind at ease, just don't be afraid to ask we are all here to help you and I mean 24/7.Good Luck mattcass
Thank heavens for sites like this as it has been a year of utter frustration. At one stage one specialist told me I was anxious and depressed because he had no other explanation for my symptoms and it wasn't until I argued with him and insisted I wasn't depressed or anxious and pushed to be sent to a rhuemy that I even got on the right track. So I rationally know it is a very slow process but now I am getting so frustrated that as the symptoms are getting progressively worse and all I have is panadol osteo I am barely functioning and almost unable to work. I have been given low dose prednisone but my GP doesn't want me to take it until after I have the liver biopsy, which I can understand but in my hands I have something that may make me feel slightly better! aghhhhhhh BTW does anyone else have high calcium levels as well?
Hi, Try not to worry too much as that will make the r/a lupus worse. if you start on a small dose of mtx you should be having regular blood tests and it will show any problems with the liver before any severe side effects occur. If you find that mtx is unsuitable for you then there are other drugs. I am on a combination of drugs. Hydroxychloroquine (plaquenil) is another that can be used and doesn't have the same side effects but not sure if it would be as effective. Take care x
Meant to say, if you are on mtx then you will need to take folic acid, usually three days after the mtx although some people take it more often to lessen the side effects.
I just don't know if I want to take anything that is going to make me that sick and make working harder than it is already. I have been doing this for year now and no one seemed to care so i am not sure about jumping in and taking this toxic stuff. I already have liver problems so adding to them may not be the way to go.
It sounds to me as if you need some detailed in-put from a specialist rheumatologist.
Once you have had the liver biopsy, things will be clearer to the rheumy on the way ahead.
All of the Disease Modifying Anti-arthritis Drugs (DMARDs) have side effects, but most of us manage better on them than without. It does take time to sort out which one(s) are best for you as an individual.
I presume that you are looking after your liver - no toxic alternative medicines and no alcohol??
You will find that you need to be persistent and determined to get the best treatment. Think "dripping water wearing away the stone..." techniques.
Hi old timer yes I have pretty much given up alcohol and I have had such bad reactions to antibiotics, the latest one about a month ago and nearly died, and other things that I would never even consider alternative medicines as I would be too worried what is in them. The only reason I have gotten this far is that I wouldn't believe the specialist that told me it was all in my head. I had a child with cancer so I know how specialists behave - I am so much smarter than you attitude and no communication so I am ready to keep chipping away but I am getting mighty tired of it all.
Hi, If you have liver problems then i think it would be unlikely that they would give you mtx. If you have ra/lupus then it is important that you see a rheumatologist and follow their advice. There are many newer drugs around now that can help. If your liver biopsy is alright and they give you mtx i wouldn't worry too much, as others have said it is a much smaller dose than people with cancer get so the side effects are much less and folic acid helps to lessen the side effects. Good luck.
Re the pain at present, have you got a wax bath for your hands? And ice packs and heat packs really help as well. And also do try to make sure you do some stretching and range of movement exercises daily if you can. I know the thought of exercise when you're in pain sounds daft, but very gentle stretching does help. But don't rule out trying the drugs, as could well be the thing that works brilliantly for you. Polly
Hi, I also freaked out about taking a chemo drug, as I have also lost a child to cancer. I contacted my daughter's doc about the mtx and he said at the levels we are given, it is a pretty benign drug. The first three weeks were bad, then everything settled down, and now it is no problem at all. My biggest complaint is some hair loss, and my hair no longer holds the color like it did before. Ahhhhhh, vanity. My best to you as you move forward.
Linde
Hey there fellow Aussie, where in AU are you? At present I'm in Tassie but I lived at NSW till 2000 and since my hubby is nearing retirement, we may end up going back.
Sounds like you have been going through some unsettling times and not knowing which way to turn. 6 mths ago when I had to add mtx to my other meds - I had the same apprehension about taking it as you did. I didnt want to have more to deal with especially when they talked about possibility of nausea and diarrhea.... it didnt sound to enticing to me. In the end I decided to take it because the joint pain got too much. I was already on Nexium for GERD so I hoped maybe it would help with the belly probs and I think it did. At first I had a few small bouts of feeling sick for a couple of hours but I wouldnt even call it nausea and that soon disappeared.
Luck must have been with me because the only adverse thing I've found till now is how susceptible you are to infection, I've had much more than the usual since being on it.
I do agree with Mille though, I wouldn't think they would put you on MTX particularly since the LFT's are raised enough to have a biopsy. There are lots of other medications available, your doc should be able to find out which wont be worrisome to your individual case.
It was sad to read you lost a child, my heart goes out to you. And now you have this disease which can be scary. In my research i found that the reason the medications are given are because they hope to defer the effects of the RA which it does in a lot of people, some even go into remission for years but some dont respond as well as others and sometimes they need additional or different meds. Deciding not to take medication means the disease will progress and the joints will deteriorate but once again its individual as to how quickly that would happen.
There will be lots of decisions to make over the coming months for you and I know it is hard not knowing what your body is doing or going to do, however I am sure the people here are more than willing to help you get through - I havent been here long but there seem to be a lot of veterans who are very experienced in RA here.
Hi Gail I am in Canberra. Just been to GP who was trying to get me in for a biopsy before starting prednisone but they just don't answer or return calls. I am on pantaprazole for the reflux and I also have a hiatus hernia just to make life even more fun. The reason I am also freaked is because of the infection thing and I am allergic to nearly every antibitoic so if I get anything I have the potential to just die from the infection not a happy thought to look forward to.I almost carked it about a month ago from an antibiotic reaction so I am just quietly freaking out
With all the 'polies' there you should have some good Dr's in Canberra.
Hard to say about the allergies whether you would react to mtx or not but often you will be allergic to a "type" of medicine like you are allergic to a group ie Penicillin and anything containing the word "cillin" you will react to it. Of course you can be allergic to a few groups or just single drugs (I'm allergic to heparin and fragmin group and morphine and anything contain morphine including pethidine plus the single drug, buscopan). What are you allergic to? If its penicillin.... have they tried you on the Celphalosporine group (or anything containing ceph/cef), tetracycline group or sulpha group? I know bugs are sensitive and resistant to certain groups so they wont always work but if whatever you have at the time is sensitive then maybe they could try you on one of those.
It certainly is scary having allergies severe enough to cause anaphylaxis and I do understand your worries with it, I stopped breathing on 3 occasions... I guess the only way to test it will be to take a very low dose and see. I am always wary of new meds but any medication can turn into an allergy even after taking it for years so there is always that slight chance of that happening in the back of your mind at all times.
In my reading I haven't seen anyone complaining of being allergic to the mtx, just to having adverse effects to it which is different as you know. I still think they probably wont give it to you tho unless they find a reversible reason for the raised LFT's.
Ive just pulled myself off my prednisone (just about to put up a blog on that) and am feeling the effects of not taking it so yes it can be a great medication. It looks like you've read up on the adverse reactions so be sure to keep an eye out for them as steroids can be a godsend but sometimes its not without problems. I hope that it works for you...
Thanks gail, I would have to say unless you go private here it is very hit and miss with docs. I have allergies and intolerance to nearly every antibiotic group and like you no opioids either make me violently ill or hallucinate. Lat time I had erythramycin it sent my liver into conniptions and that was one of the last options I had. Now if I get UTI I have to a) find a chemist that has gentamicin for injection and b) spend every morning and night waiting around at GP to have said injections. That is what I am reduced to so yoiu can see why I am a little freaked out about getting any type of infection. Had liver US yesterday she said still fatyy wouldn't tell me anything else. Now I am on 10mg of pred for next two weeks and then 7.5 until whenever and have to have lip biopsy at end of May and praying that it doesn't get infected as I have no idea what they will be able to give me. Only effects so far is that I am feeling more tired if that is possible and aching more, hoping that will pass
How's it going on the prednisone? Did you get your liver biopsy yet? Fingers crossed that there are no more infections for you cuz I wouldnt imagine they would give you genta for a small one and it sounds like theres nothing else you can be given.
Hi Netbuddy , I stopped the prednisone after 4 days as I couldn't work and feel like I wanted to vomit on my keyboard all the time. It also made me feel really foggy culminating in a car accident on the weekend thankfully not serious. Strange as I have never had the whole nausea, migraines, stomach cramps etc on pred. I did ring the rhuemys but it is now 5 days and counting waiting for them to get back to me. My poor GP has to keep picking up the pieces and they won't even return his calls. So at this stage no idea what will happen next my GP is pushing to get me in for a liver biopsy as he thinks I may have autoimmune hepatitis now just one more thing to add to the list I guess.
Sorry.. havent been on coz my fingers are sore again as is the rest of my joints right now but wanted to answer coz I didnt want u feeling u were talking to a non responder....
Yes I read Auto-immune hep is a common cause of fatty liver (steatosis). I havent had those symptoms on pred though, I had other things. Hope you get this liver biopsy soon! When the doc said you have an auto-immune disease was that diagnosed from blood tests - did you have ANA, Anti SMA and Anti LKM tests? Also do you have any thyroid probs? All those things are indicative of Auto-immune hep and so can nausea, abdo discomfort and joint pain (which I gather you must have if they think you may have RA).
You poor thing, its one thing after the other for some people. Glad you werent hurt in the accident. Let me know when the doc can contact someone to get that biopsy done.
So sorry you are feeling pain, the cold weather isn't helping I would imagine, hope you are getting some relief. I also have that constantly swollen and painful along with wrists and elbows All I can do is take panadol osteo to try and take the edge off it. Some days it is really hard to go to work and type all day.I have had continuous blood tests for a year now I was sero negative but not sure what the last ones showed as I don't see them again until mid August and so am, flying blind. I am seriously at the point of walking away and doing nothing and just living with it I have managed to do it for over a year so I guess I will just continue. Did blood test yesterday for hep thing so will see what comes back. At least my GP responds I still haven't heard back from Rheumys so I have given up on them. Glad I wasn't on methatrexate and having serious reactions or I would be dead waiting for a response from them which makes me think I want nothing to do with any of that sort of medication. I have a lip biopsy next Thursday. so am hoping that at least goes Ok.
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Let me know when the doc can contact someone to get that biopsy done.
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Feeling awful and fed up! 
