Has anyone else tried every RA drug with little or now relief? I'm at the end of my rope and even my doctor does not know what to do next.The only thing that gets me out of bed is prednisone. My bones are getting weaker so I need to get off of it.Let me hear from you.
Thanks,Julie
I'm so sorry to hear you're having such a rough time and I will do my best to help. Unfortunately, I don't have a magic wand that I can wave at you that will solve everything, but I have a couple of questions, a few suggestions and virtual hug.
In order to be of better use to you, I need to know a bit more details about what you've tried, etc. You may want to consider filling out those types of questions on your profile, as it can help others answer your questions. On to the questions....have you tried every medication currently on the market? There are currently about 16, including nine Biologics. Sometimes if one medication doesn't work by itself, it can work in combination with another medication - have you and your doctor tried different combinations? It sounds as if you trust your doctor but you may want to consider getting a second opinion - sometimes, a new pair of eyes might be able to see other options. If you do explore a second opinion, try to see someone who is associated with a teaching hospital. Sometimes, teaching hospitals are more at the forefront of new treatment approaches and might have more sources of information about possible clinical trials you might take part in.
For most of my life, nothing I took worked for my RA or I developed side effects to what did work that meant I couldn't take them. Then the Biologics came along and I found a medication that works for me. Earlier this year, I interviewed Christine Schwab, author of Take Me Home from the Oscars and for many years, she was in a similar situation - her treatment kept her going (and not terrifically well) until her doctor managed to get her into a clinical trial for Enbrel. You may be in the same boat as she and I were. It may be that there's nothing that really does the trick right now, but that a new medication is being developed that will do it for you. Sometimes, it's about hanging on and going on hope. There are two or three Biologics coming down the pipeline in a year or two, so the good news is that more drugs are being developed much faster than in the past. This means there's more tangible reasons to hope.
How badly is prednisone affecting you? If it is the only thing that works, talk to your doctor about what you can do to mitigate the side effects so you can continue to have at least some control of your symptoms. You may want to check out our Osteoporosis site - talk to the Community Leader Pam Flores and tell her I sent you. She knows a lot about osteoporosis and treatments for it and may be able to give you some tips on medication that can counteract the side effects so you can continue prednisone until you find another type of treatment.
Hang in there. And please keep coming back. We are here to help you through.
Julie,
I have just started Methotrexae injectible after pills made me nausea along with other side effects. I'm posting my saga via post and last nite it just started 1st dose. Please see:
Just to let you know I have a serious RA problem effecting not ony my body but this highly educated desease multiple PHDs decided at one point attack my eyes screlitis and now have large cavities in both eyes.""excrutiating pain during flare ups"". Hope this helps as far as Methotrexate inj. This site is wonderful very very helpful and brings me peace of mind in an otherwise life full of dismay.
I do hope that MTX works for you. I do hear that inj is much better as it bypasses your gut. Let us know how you are doing.
By the way, RA sucks !!!!!!
I wish you good health.
Julie
I do hope that MTX works for you. I do hear that inj is much better as it bypasses your gut. Let us know how you are doing.
By the way, RA sucks !!!!!!
I wish you good health.
Julie
Hi Julie,
I started injectable MTX a about 6 weeks ago, I have had no issues with it so far. I have read that the injectible is much easier on your system than the oral pills. I also take Arava and Orencia. MTX is supposed to help a lot of us with RA, hope it helps you! The shot is painless and, knock on wood, you will have no reaction to it either.
My first question when I read this was "holy crap, you only take Aleve for the pain?" Are you seriously only on over-the-counter painkillers? If so, please talk to your doctor about better pain management! If your rheumatologist is one of those strange individuals who doesn't treat pain, but only inflammation, ask for a referral to a pain specialist. A lot of people also rely on their family doctors for pain management. A prescription anti-inflammatory may be a valuable tool for you and there are also other, stronger pain meds. You having had ulcers does complicate your pain management treatment, however, you may be able to balance out the potential impact on your stomach by taking medications, such as Nexium, Pantoloc, etc. It's quite common for people who have RA to have to also take a stomach medication because the RA meds are so hard on the gastrointestinal system. as well, finding a pain management specialist two uses a multidisciplinary approach (i.e., other treatments than just medication) may also help you cope better.
I have just finished an interview with a doctor about remission and that will be posted tomorrow. There may be some information in there you and your doctor can discuss. One of the statements was that sometimes, when people don't respond to medication, it may be an issue of not having been on it long enough or not having taking it in the right combination with other drugs. You have been through the wringer and it sounds as if your rheumatologist is pretty on the ball, so you may be in the small group of people who don't respond at all to current medication. In addition to the two or three new medications that are on their way, there is promising ideas in research for other types of medications currently being discussed. As I said earlier, it may be that you just have to find a way to manage until other medication comes on the market.
I told Pam Flores that you'll be contacting her and she's put her thinking cap on already.
Hang in there.
Thanks for responding again.
I need to let you know that it is my choice not to be on any other pain meds but Aleve at this time. I actually may try Ultram again. I haven't tried this in many yrs and can't remember what, if any, side effects that I had. My dr has offered many different choices and even mentioned seeing a pain specialist. . I've tried enough narcotics to know that I'd rather try to deal with the pain than be nauseous and loopy. He has even offered psych drugs. I know that they are marketed also for pain. (I'm not depressed) and the side effects sound worse than the pain. If the swelling would go away then their would be no pain. I just need to find a medication that will take away the swelling. I've taken Omeprizole for a bit for the ulcers but a side effect is Osteoperosis and Neuopathy; which I already have. I've given most of the RA meds 1yr each to see if they'ld work and even went back to Remicade to give it another try. No luck. I even was so desperate as to pay over $6000 in out of pocket insurance expences to try Ratuxin with no luck after 1 yr.
You are so nice and I appreciate your help. I am just complicated.
I'm looking forward to hearing what the dr has to say about remisson.
Can you please give me the e-mail address or web address for Pam Flores?
Thanks again,
Julie
Hi Julie,
I have also been on all the meds you mentioned and have had no luck. I told him I wanted a break from biologics so now I'm taking 20mg of Arava and my 5 mg of prednisone (a day like you for 4 yrs now, going up to 10 mg for flare). AND YOUR RIGHT, RA SUCKS! But this seems to be working for me although it has only been two weeks. But my feet, wrists, knees and ankles don't hurt as bad but still having problems with my right shoulder. I have orders for an MRI but haven't gone yet. For inflamation I take otc ibuprophin. 400 to 800 mg depending on how bad it is. That's the only thing that doesn't upset my stomach but I take prilosec too. I take Vicoden for pain. I was worried about getting addicted but that has not been an issue. Somedays I may take 8 others I may take none. We have a cold front coming through Thursday and that has me worried already. Cold and rain cause flares for me. Another thing my Rheumy mentioned was 1500 mg of Tumeric daily. Also, if you don't take calcium I would start taking 1200 mg daily immediately.
Best wishes to you. Let us know how your doing.
T
Hi T,
I'm so sorry for you too. Don't take this the wrong way but, I'm glad to hear that their is someone like me and has gone thru the same journey with RA. It seens like we are cousins from different mothers.
One thing is that I did participate in a research study thru my Rhumey. They took my blood. I hope that this helps find a new drug or a cure. Being that I, like you, are not responding well my blood may show something different that they can use to develop a new drug or cure. Wouldn't that be nice.
I'd like to keep in touch. If you find something new that works, please let me know.
Best of health to you.
Julie
You know what's funny ... we could be related. My cousin was dx 3 months before me with RA and we're the same age. We believe we got it from our fathers. (both are now deceased) She's having the same problems we are, but she went out on disability. I was on STD for 2 months and came back ... now I'm asking myself why with my shoulder screaming at me this morning. I'm scared to give up the benefits. But when I was on disability and doing aquatics pt I felt so much better. I was able to sleep 10 hours which my body seems to require now days. It's so hard to get up in the morning. After a couple hours I'm ok. I live in Texas and they usually deny disability the first time. If I can hang in there till a couple more yrs I'll be 55 and I hear it's easier to get after 55. I hope I can make it that long.
I'd love to keep in touch. My personal email is HDMysticLady@ymail.com. I only check it about once a week.
Best wishes to you. I hope you find something that works for you.
T
I completely understand and respect your decision about medication. We all have to take a look at the pros and cons of taking a particular medication and making a decision that works for us. You may want to talk to your doctor about anti-inflammatories such as Celebrex, though. It is essential for you to get some control on the swelling so you avoid the RA damaging your joints and given your trouble with finding a medication you respond to other than Prednisone, it may be a case of every little bit helps.
When you have tried the different RA meds, have you done them one at a time or in combination? A high number of people need combination therapy in order to respond, so if you haven't yet, there may still be options for you in terms of treatment. I know people who had to be on three or four different RA drugs at the same time before they responded.
I do want to mention one thing. There are two kinds of pain that comes with RA. The pain that originates in active disease when you joints are swollen and the pain that comes from damage done to joints. People who go into remission may still have pain because the joints got damaged before they got their RA under control. Since you have been having such a lot of trouble with getting your RA suppressed, it is likely that you have damage in your joints that will mean you'll continue to experience pain, even after your disease is well-managed. I strongly recommend that you accept your doctor's offer for a referral to a pain specialist. If you're worried about the kind meds they may recommend, it is up to you whether you want to go that route. However, if the pain specialist treats pain from a multidisciplinary approach, there are lots of things that might be helpful to you.
These are just suggestions. Your case is much more complicated than I know from reading your comments and my ideas are essentially food for thought that you may or may not find relevant and may or may not want to pursue.
In terms of connecting to Pam - I included links to her site and her profile in my first answer to this question. If you click on them, you'll pop right on over to where she is.
I haven't tried every drug but I've tried quite a few and so far am having very little relief. I don't have any answers for you but I did want to let you know that you aren't alone...and that I hope you find something to help you soon,
m
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Lene,
Thank you so much for taking the time write me. You ask great questions. You are very insiteful.
I've had RA since 1991. Every joint in my body but my fingers are affected.
It was so long ago that I can't remember what I took at first. I tried Methotrexate and had to stop due to side effects (I can't remember what they were though). I know that I was on prednisone then too.
I've tried Plaquinal,Embril,Humira,Simponi,Cimzia,Remacade,Orencia,Arava,Actemra,Orencia, and Rituxan. All DMRDS, Biologics and TNF meds. I've only taken Prenisone as a combination with these except for when I tried Arava. Tylenol does not help.
My last infusion was Rituxan was in May. I take 5mg Predisone daily and more if flares. I do take Aleve once and awhile and it helps with some of the pain. I cannot take it often because I've had stomach ulcers. The only side effects that I have with Prednisone is the bone thinning. Otherwise, it is just a miracle. I've been taking Boniva for 1 yr now but the Dexa scan that I just had showed that I've gotten worse. It is funny as the cheepest drug works the best. I had to pay ofer $6000.00 out of pocket this year for the Rituxin.
I have been with my MD for 20 yrs. He is highly regarded in this area. I did get a 2nd opinion a few months ago, at his suggestion, and she said that I was a difficult case and really did not have any new suggestions except trying Methotrexate again, which I may.
I appreciate you giving me a connection regarding osteoporsis. I'll have to write to Pam.
I know tha their has to be something out there someday. I do have hope. I just hate the thought of my joints getting worse as time goes by.
I appreciae the virtual hug. Here is one back.
Julie