Most meds contraindicated—Pred OK
Hi I’m newly Dx. Because of another autoimmune disease and a separate health history most of the medications are contraindicated for me. I’m also allergic to sulpha. NSAIDS give me gastritis, severe enough to go to ER. The one the rheumatologist had hope for (Plaquenil) I also had a negative response to. Note I am blind in one eye anyway and was not going to risk my other eye, had terrible halos, etc. So now on low dose Prednisone. It has helped but not 100%. Am on 5mg. See rheumy again in another few weeks. But it def helps.
Can I go up to a slightly higher dose? Should I ask her for this? Note I have a major trip coming in June (major anniversary) that has been planned for 3 years to a remote area. I’m disinclined to start any new medication (even if I could take it) before that trip. What should I ask her about? Also the trip is for 3 weeks. How do you develop a flare action plan? Again the Pred is helping, some days fabulous and fine, some days not so much (like today when I cleaned whole house). But the island we go to is 35 minutes by seaplane away from major hospital. I should say I am over 65 and my RA so far is only in my hands and right big toe. I’m so new to this could use any thoughts. I also got some compression gloves and using CBD/THC cream on the hands with the gloves. I’m sorry, feels a bit weird since so many of you are much worse off than I am, but thought I would ask. TIA
Wow thought I would get some response. 😢
Apologies for the delay in replying,
!
You have a lot of things to consider and first off, if you haven't done so already, I would make sure you have adequate health insurance and that it covers out-of-country or remote locations, too. I know that seems like a weird place to start, but I hate for you to cancel this planned trip. If you are able to go through with the trip, I think it's best to hope for the best, but plan for possible health issues.
Ok. Onto some of your other questions. First, we cannot provide medical advice for your safety. I would definitely have a discussion with your rheumatologist about your concerns. Prednisone is a great short term solution and your dosage can potentially be increased, if you doctor thinks that's a good option for you. You definitely have room to possibly increase your dose, but again, prednisone is not a great long term solution, due to its side effects.
I don't blame you for not wanting to start medications before your trip, so maybe you and your rheumatologist can see about starting them afterwards? I always recommend writing down your questions and concerns before any appointment. I think I am going to remember my questions when I go to my own doctor and I inevitably forget some. So, I would suggest writing down all of your questions, especially in relation to your upcoming trip.
I thought you would appreciate this article on travel tips when you have RA -- https://rheumatoidarthritis.net/living/tips-successful-trip. And, here's another one -- https://rheumatoidarthritis.net/living/travel-tips. It sounds like you have been pretty proactive already with your RA (compression gloves, CBD, etc), so you are on the right track as you plan for this upcoming trip.
Also, you mentioned having a flare action plan. Well, one of our contributors wrote on this very topic and things you can do to be as prepared as possible for a flare (keeping in mind that sometimes a flare will sneak up on you, no matter how much you try to be prepared for them) -- https://rheumatoidarthritis.net/living/flare-action-plan. I think you are doing the right thing in thinking ahead and I hope your preparation pays off and you are able to enjoy a fabulous, flare free time!
Best, Erin, RheumatoidArthritis.net Team Member.Thanks much. Why isn’t Prednisone Ok to take in low dose long term? I thought many people did this. It may end up being my ONLY option. Yes will discuss more with rheumatologist but Plaquenil was a no go, can’t take methotrexate, can’t take sulpha, can’t take NSAIDS and the biological may be out too for another medical reason. My regular doctor thinks as long as I am doing my weight bearing, on my calcium, getting my Dexa, etc. and am under 7.5 per day it can be ok. But need to discuss with rheumatologist next month. I’m in good shape physically so far, swim laps every day, walk, etc. Not overweight. I’m also nearing 70 so I think issues at that age are far different than if I was nearing 30. We only have two more big trips on our travel bucket list, both will be concluded by January. Love where I live. A little perspective for someone my age is warranted I think, rather than the same advice given to someone younger. Do I really need to go through highly risky (for me) chemo like treatment if my lifespan is likely within 10 years anyway? Realize these are more questions for my doctor and myself. But feel like I never got the questions answered: don’t many people take low dose prednisone long term? I was never given a high dose. Just started on low dose right after the Plaquenil failed me. So far it works fine, some days better. My only problems are my hands and right toe. Nothing else. If there are links, would love them. Thanks.
, so prednisone is great and at low doses, is probably ok. Quite a few of our members have been on low doses of prednisone for years, and sometimes decades. Long term useage can affect bone density, so that's something to keep an eye on (a Dexa scan will help with that). It can also cause increased appetite and unwanted weight gain. So, at your age, your doctor and you may decide the benefits outweigh any risks. And, as your body may begin to develop a tolerance to prednisone, you may have to bump up your dosage, though not every person has to bump up their dose.
Here's a conversation from our forums that may offer some peace of mind about using prednisone (and my apologies if my first post made long term usage sound a bit dire) -- https://rheumatoidarthritis.net/forums/long-term-low-dose-prednisone.
And, even though I don't think almost 70 is especially old, I think you ask a really smart question about the necessity of stronger drugs to mimimize your RA symptoms. It's definitely something to consider. RA can be a progressive disease and can cause joint damage, even when you feel just fine. But, on the other hand, many of the medications used to treat RA come with some pretty hefty possible side effects. So, it will come down to what you think is best for you. And I always say to our members that YOU get to decide how to treat your RA. After all, it's your body and it's your life. We can all have opinions on what we think it best, but you are the one living in your body and you should have the final say.
I would try to have a frank discussion with your doctor, and keep in mind that doctors are trained to 'fix' and 'cure' everything, so he/she may not agree with your treatment choices in the end, but that's okay.
I hope your RA symptoms continue to stay relatively mild and manageable and I hope you are able to enjoy those last two bucket list trips to the fullest! You're showing that while it may not always be easy, you can keep doing the things you love and living your life, even with RA. I have no doubt that you'll be able to handle this. You ask good questions and don't expect easy answers 😉 .
Best, Erin, RheumatoidArthritis.net Team Member.Thanks so much. This is what I was looking for as a start. QOL is important and in that vein, someone my age and only recently diagnosed with far fewer years left needs perspective on chemo type drugs vs. QOL. For me, even getting through one year and finishing off our bucket list travel without these heavy chemo drugs will make a huge difference. Thanks for the info.
Thanks much. Appreciate the links. I find it hard on some of these forums because people are always saying Oh you have to get on X or Y drug and off Pred. But I think it’s different for someone older who is in early stage with mild disease and has QOL to think about, plus the fact so many options are completely contradicted for me. Will discuss further with rheumy next month including if I can go a little up (7.5) and back down to 5 now and then. Thanks for the links.
Thanks so much. Methotrexate was the first drug ruled out for me because of another autoimmune disease that adversely impacts my liver. As a result many other drugs contraindicated as well. And, due to another medical condition many biologics ruled out. So Pred it is for now at least. Appreciate the links and comments. 
Hi
. Totally get why the methotrexate would be ruled out in your case. Has anyone ever discussed the JAK inhibitors (like Rinvoq and Xeljanz)? Honestly don't know if they might be o.k. - just throwing the question out there. I have seen a study that found 10 mg and under for prednisone to be o.k., but it does seem to be a bit of an outlier (sorry, I don't have the link right now). Please feel free, if you like, to keep us posted on how things go. Best, Richard (RheumatoidArthritis.net Team)
