Hi, I'm new to this group. I was recently diagnosed with RA a few weeks ago. I've had symptoms for a year and a half but now it's all confirmed. The pain used to just come in flare up's every few months, then it was every few weeks; now I'm in pain daily. I just got a new job at a hosptial and I had to do a drug screen and 'failed' due to having to take Norco and Soma for pain. They had to send it off to figure out 'what' the drugs are, but I already told them what they will be. If I don't take half a Norco in the morning, it is really hard with the pain. My Rheumatologist wants to put me on Leflunomide and I refuse to go on that stuff. It's so harsh on your liver that they want to check my panel once a month if I go on it. Plus all the reveiws I've read say that it makes people sick with diarrhea, nausea, and hair loss. Those are worse than having pain in my opinon. My fear is that I won't get this job because I take pain meds that are prescribed to me to help with the pain of RA. I'm already feeling my life change and it's really getting me down. Can someone tell me if they've had a similar situtaion with a bright outcome? I could use some good news right now. Thanks.
I am going to be blunt. No sugar coating. You need to educate yourself on this serious disease and treatment You need DMARDS. The side effects of the drug are nothing compared to the loss of the use of your limbs.
Do your homework.
Hi Lynn,
I have done my homework, believe me. I research constantly. There is nothing that will make me want to get on a drug that destroys my liver while trying to protect my immune system. It makes zero sense to me. But thank you for the reply.
Welcome. I have been in the medical profession for nearly 30 years. I was just diagnosed this past April with a lot of pain. Although I dont tolerate narcotics well so I dont take them but everyone's journey is different. I have been on methotrexate which I got an infection from. Then was put on arava with little improvement if any. I am now on humira injections every other week. It seems to b helping some. You say you are worried about medications affecting your liver and I think we all share those fears. For me I fear the affects of the disease. ..call it vanity or whatever but I also dont want twisted fingers that go off in different directions. I would rather not end up in a wheelchair or have to have joints replaced because of dsmage. So those are only a few reasons I choose to at least try some of these medications because the disease itself scares me just as much if not more. Good luck with your decision. We all have our own journey.
Thank you Tammierick. I appreacite your input. It's a new diagnosis for me (just 3 weeks ago) so I'm not going to say 'never' to the RA drugs, but everything I've looked up so far has so many awful side effects, that I just don't see the advantage of trying them yet. I'm also uninsured, so that plays a part as well. I have the vanity too. I don't want to look all twisted up either. Right now, I just don't want to feel like I can't get a job due to my illness. It really is manageable for me at the moment on the pain meds. They don't make me high or loopy. They just take the edge off the pain so I can live a somewhat normal life. I still work, volunteer and live like anyone else. I want to keep it that way.
Hi there, well I really should think that your employers should look after you. My employers have done everything they can for me since I became ill. Honesty is best, tell them exactly what is going on and they should make reasonable adjustments and maybe do a risk assessment so that you don't have to carry out certain tasks. I have struggled through work will this (or similar) illness for many years but have been unable to in the last year as it just got to the point i could not get through the day, even though it was part time. It has been very stressful but I have tried to turn it around to positive where possible. I loved my job and definitely miss the income! But I try to think about things in a different way now. I can enjoy my home, more time with my pets, relax when i need to and on good days get out somewhere beautiful and peaceful. Sometimes it is difficult to see it in a positive way but I am a very spiritual person so I will sit and look at my cards and angel therapy books. It really helps if worst hapoens, however i really don't imagine that will happen to you. My employers want me to go back and i would in a shot if I could, so trying to keep it open for as long as possible, thing is though I am used to my new life now! Lol
take care and hope all goes well x
The biologics are an alternative range of drugs (Humira is one, I believe) that work differently and may affect the liver less.
But on the NHS my guess is they'll insist you try the DMARDS first because they're a lot cheaper.
If you are loaded you could try going private with the infusions/injections.
I have been using Leflunomide for 8 years now. 20mg a day. I haven't had any of the issues you mention. They warn you of the possibilities, but not everyone gets all of the side effects. Try the drug. You might be surprised. Good luck
I would listen to CA-Lynn if I were you. She knows more about RA than any of us. She has had it a long time and knows what needs to be done to continue living a somewhat normal life. You have to take DMARDS. I tried not to for the same reasons and couldn't do it. I couldn't stand the pain either and I can take a lot of pain. When it becomes full blown, you will be begging for drugs!
Thank you so very much for your insight and reply, shazzy. I wish you all the best! I just got hired and don't formally start my job for a few weeks, and my concern is since I'm not official yet they won't be as motivated to bring someone on with RA. I sincerely hope that is not the case.
Thanks 3Light! I am not insured which is why I was prescribed the Leflunomide, as it's the only RA drug in Generic form at this point. I'm just real leery of a drug that needs to have me do a blood panel every month to check my liver . Yikes!
Whereabouts are you? Cos here in UK employers have to be seen to take on a percentage of employees with disabilities so it can actually go in your favour. Let me know how it goes
3poems, thank you SO very much for replying & letting me know how long you've been on the Leflunomide and especially that you have not had any side effects. That is great to hear! Can you tell me how well it has worked for you? Has it actually supressed the disease as it claims to do?
Originally I was having 25ml Methotrexate injections, but had 10mg Leflunomide to 'top it up'. When I needed to have chemotherapy I had to stop the Methotrexate and just took Leflunomide. After chemo I spent two years on 10mg Leflunomide alone, but eventually my symptoms came back. My consultant then increased it to 20mg. Which along with Prednisolone is keeping things under control. I will sortly be going back onto Methotrexate injections. It can keep the disease under control by itself if the symptoms are mild, but is usually given with another DMARD - in my case Methotrexate, but can also be used with Sulfasalazine or perhaps a biologic. But it's worth trying it alone first if that's what your consultant is suggesting, and if you need additional drugs they can be factored in as needed. But the fact that it hasn't given me any side effects is a bonus really.
Incidentally, ALL drugs for RA need regular blood tests to monitor any side effects such as liver function. At least the DMARDS and biologics don't cause stomach damage and possible internal bleeding as the old NSAIDs do.
Yes it is your decision to go on meds or not go on meds. I really haven't had any side effects from these meds. And like I said before I am not all about taking these medications and the possible rare side effects but I also dont want the horrible pain and joint damage. There is damage happening even when there is little pain or swelling. As research says damage will happen within the first two years of being diagnosed. That scares the heck out of me as like u I was in bad pain for a year before being diagnosed. Read all you can on RA and medications but also keep it in perspective. Most horrible side effects dont happen or happen rarely but we know what RA will do. It is your decision but make am informed decision. When my doc wanted me to go on injectable humira I wasn't all that pleased with it or her. She asked me to trust her and I decided I neef to trust her. She knows more about the wrath of RA than I did. She has seen years of damage. My choice is meds but your choice may not be. For your job be up front. I used yo do drug testing and they would write down the meds they were on by the docs then it eas up front and no surprise. There r many people on norco who take it responsibly and are employed. GOOD LUCK
Thank you ALL so very much for the replies! You have calmed me down and I really do appreaciate it. It's also great to hear that there are people out there who don't deal with the side effects of the drugs. When I was researching online, it seemed like maybe 2 or 3 out of several hundred were the only people who didn't have a side effect that was, to me, even worse than the pain itself.
I will definitely do more research on the Leflunomide and possibly give it a try. There is apparently a Chinese herb called TWhg I think that is really doing well for RA in China. The US hasn't approved it yet, but from what I read, it's really helpful, especially when used in conjunction with a DMARD. I wish we'd get more natural meidcations for these auto immune diseases. Thanks again to everyone!! xx
Hi Sue, I've been taking an alternative drug called Low Dose Naltrexone because I felt like you about the strong drugs. I'm having good success combining LDN with various supplements and I was really bad (couldn't walk or hold a pen etc...) Where in the world are you? I'm in the UK but if you google LDN you can find out about it and how to get a prescription if you decide to try it. I haven't been taking any pain relief apart from a corticosteroid injection a few months ago which was when I got desperate (it worked!) Let me know if you want more info and good luck.
Hi Rarelady,
Yes, I saw your post and was excited to look up that med you are taking. I am in the USA and will definitely ask my doctor about it. I'm starting a new job in a hospital so an immune suppressant doesn't excite me at all. Our immune system is already shooting friendly fire, so I don't need to suppress it and have my body even more susceptible to illness. Thanks for the info!!
Who said it destroys your liver? I've had this disease and been on these drugs for over 20+ years. Every 3 months I get liver function tests and NEVER ONCE IN ALL THESE YEARS HAS ANY TEST BEEN ABNORMAL.
Now, granted, SOME people may not have the same success, but a majority of them do.
HOnestly? If you really did your homework you'd know that when you're on these drugs your bloodwork occurs every 3 months......which is plenty enough time to see if your liver isn't handling it well. No, it does NOT destroy your liver. What happens IF your liver function tests come back with abnormal values is that you're taken off the drugs and the liver recovers.
Reconsider.