Thoughts on overall prognosis of RA

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Hi All,

I was diagnosed in September 2014 with RA. I was put on Leflunomide 10mg but it felt that not much other than my foot pain went away. The dosage was increased to 20mg, but just about the same time I increased the dosage, I started seeing a new Rheumy, and she put me on Methotrexate of 15mg in stead of the Leflunomide.

Within a few weeks I could feel old pains come back that I hadn't realized the Leflunomide had taken away. She told me it was due to the change of meds (even though they are both DMARDS) and to give it time. Also, I was in line to get in on a clinical trial for Enbrel and the only way I could get on that trial was to be on MTX for 3 months. 

Still, more pain and the loss of hair was much worse than when on the Leflunomide and the fatigue even felt worse. WhenI told my Rheumy this, this time she said that none of the DMARDS would really work for me because my RA was very involved and only the biologics like Enbrel would do any good for me.

Unfortunately, I found out recently that the trial I was supposed to start on next month closed before I could get on it. Needless to say, I was devastated. I had just kept thinking that all of the pain and fatigue would be taken care of when I got on the Enbrel and now it's not going to happen.

When I saw my Rheumy for my follow up a couple of weeks ago, again I told her that the MTX was doing less for my RA than the Leflunomide. This time she said I needed to give it 3 months. Well, I've been on it for 2 and 1/2 months and it seems that by now, I should be feeling at least a little better; not worse, right?

I work as a medical lab registration clerk and I see RA patients daily who tell me that the Enbrel worked for a short time for them, but stopped and even though they're still on it, along with the MTX, nothing really helps.

My Rheumy is out this week but I decided on my own to start taking my Leflunomide again and stop the MTX, since it wasn't helping and there's no clinical trials to get on at the moment. AND, it appears that Enbrel isn't the 'end-all, be-all' drug my Rheumy says it is. I know that everyone reacts to meds differently, but right now I'm feeling completely hopeless.

It seems like no matter what I end up on, I'm never going to get rid of this awful fatigue along with the daily pain and the bad flare ups. For those of you that have had it for several years, what is the REAL prognosis of RA? Will I ever feel better? Is there a good drug out there? I just feel so depressed and hopeless that I'm not going to find anything to help me. I can't stand living the way I'm living right now. Never knowing if I can work a full day, never knowing if I'll be too tired for events that I plan...I'm 50 years old and I feel 80. Thanks for letting me vent. I'm just feeling really down today. sad

 

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  • Posted

    Hi Sue, I just wanted to tell you how sorry I am and that I really, really empathize.  I was just dignosed but been "coming down" with it over the last 4 yeas, with it becoming debilitating in the last 15 months.  I just went to the eye doctor today... regular ol visit and was soooo exhausted afterward, that I collapsed on the couch and had to cancel dinner with my sister at a local restaurant.  I feel exactly as you do about the work situation!  I was put directly on Humira.  I have heard a lot of great things about it but I have also heard that it can and does stop working for some after a period of time, mostly I heard 5+ years.  I am OK with that.  I am OK living one day at a time and taking relief where I can find it.  I just had my first shot Tuesday so I will let you know if it does anything.  So far, the only side effect was mild dull headache and a tiny bit of a racing heart (totally tolerable).  Did you try Embral or did you just decide based on what you have read that it's no good?  

    My dad had RA, my grandma, my cousin has it too... and - ironically - my nutricianist doc!  She believes Humira CURED her and she's a naturopath!  She believes it will be discovered in years to come that these (or similar biologics) can actually re-train the immune response to this devil-protein that is huring us.  Although her MD doesn't know it (as she's supposed to be taking Humira 2x per per month), she weaned herself nearly off of it, taking it only once ever 6 to 8 weeks.  And she had RA BAD... as in deformed fingers and toes bad.  So, I am really optimistic about Humira.

    I did Google Daniela's advice, which is good advice so you should too.  In my case, I am quite sure my diagnosis is correct because of my specific symptoms, family history and Anti-CCP test, which can only be RA.  Did you have an Anti-CCP test?

    As for the MTX, my doctor told me MTX stops the "Human Anti-Human Antibody" (not a typo) that can cause biologics not to work.  Apparently, biologics can stop working or not work because, like getting an organ transplant, biologics are from humans so the body can reject them.  MTX stops the body from rejecting the biologic.  

    I also know from my dad and cousin that sometimes different cocktails of drugs are needed... and what works today may not work in a few months or years.

    It sucks the big one for sure.  But I think there is hope.  I am near your age (48) and had to really mourn the loss of my old self.  I still get escited to do things and plan them in my mind, only to try and get so exhausted, I literally cry from it... from the sheer exhaustion and the depression from the sheer exhaustion.

    I hope you allow yourself to grieve this diagnosis and come out the other side feeling determined to find the right drug for you and, ultimately, remission and relief... for however long it lasts.

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    • Posted

      It is not true that methotrexate keeps the body from rejecting the biologics. Methotrexate is used to try to enhance the biologics. You can resist one or both. I failed both, with each actually causing more pain and lowering my immunities, causing underlying infections and dental bacteria to enter my bloodstream, causing tremendous joint and fibromyalga pain.
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    • Posted

      Cheria, I meant to say "CAN" help "enhance" the biologics and that's one of the ways it CAN help.  My doctor just told me this Tuesday and I wrote it down.  I'm sorry both failed you.  But Human Anit-Human Antibody is a real thing and MTX CAN help block it.  Google it if you don't believe me.
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    • Posted

      Hi Kim

      Thanks so much for your response. Yes, I too have very elevated rheumatoid factor as well as extremely high CCP levels so we're quite certain it is RA. I know all the meds will react differently for each person and I'm trying to stay positive, but it gets hard sometimes.

      I'm not on the Enbrel because the only way I can afford it is through the clinical trials where everything is paid for. I was supposed to get on a trial next mmonth, but they ended up closing it early.

      I know there's probably something out there to work eventually, I'm just so tired of being tired. I wish you all the best!!

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  • Posted

    Hi, im wondering if your rheumy is as qualified as she presents herself to be...she is contradicting herself as well as stating untruths based on myself and others multiple experiences..everyone responds completely different to these RA drugs..the methotrexate and biologics did nothing at all for me, and actually caused tremendous pain in my joints as well as very painful fibromyalga pain.. the sulfa drugs caused terrible digestive problems, stomach problems, diarhea, and eventually breathing or asthma type problems..these are all allergic side effects.. A prescribed daily anti inflammatory is extremely vital..i take mobic (melaxicam). My RA drug is plaquinil and i have no side effects. What took care of my fibro pain for about 4 years is magnesium glycinate, calcium with D, a good multi vitamin and being careful not to consume high inflammation foods like gluten, milk,sugars etc. At least 10 hrs of sleep nightly with naps or rest as needed..stress reduction etc. Also dental problems contibute to much fibro pain.
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    • Posted

      Hi Cheria

      I know what you mean about the Methotrexate. I did not like it at all. It actually increased my pain. And my hair loss was massive. My Rheumy said it's what everyone is on, but I saw no benefit from it. I'm not against trying a biologic, but I hear a lot of people, like yourself, get nothing out of it. Or it's short-lived. I just wish there was a magic cure. I have no insurance so it makes it tough. Guess I just have to keep thinking positive and hope for something that actually helps. smile

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    • Posted

      Hi sue, it is not true what your rheumy said about everyone with RA being on the methotrexate drug.. There are over 200 kinds of arthritis and methotrexate helps approx 30 percent of those with certain kinds of RA my research has shown..it makes most people hurt more as it lowers their immune system even further which triggers underlying infections (such as dental and others) which spread into the bloodstream causing more pain (joint as well as fibromyalga pain). The way i have gotten control if much of my pain is through supplements. Magnesium ( glycinate) is responsible for over 300 muscle bone and protein reactions in the body, and if this is out of sync (needs a 1 to 1 ratio or 2 to 1 ) with calcium with D, this causes fibromyalga pain which can trigger other pain. I researched which things cause or contribute to inflammation rates in the body in RA conditions (gluten, dairy, sugars, grains, etc, nutrients out of balance with each other or lacking and not being properly absorbed, less than 10 to 12 hrs night sleep, stress etc) and have had no fibromyalga pain in 4 yrs. I take plaquinil and mobic (anti inflam) and at times a low 5 mg dose of prednisone to keep my RA in remission. I usually get a flair once yrly and that is brought on by getting off track with one of the above. Be very proactive and find a rheumy who will on occasion when needed help you when in a flair and works with you when the sulfa drugs, methotrexate or biologics are causing more pain or not helping. Be sure to take a prescribed anti inflammatory daily for the inflammation given off by the disease itself.
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    • Posted

      Interesting this Cheria!

      I have read a lot about methotrexate - and once read that it increases intestinal permeability (as gliadin does).

      Given recent stuff about the role of gut immune responses to specific bacteria in RA - I am conjuring an image of King Canute holding back the tide of stuff flooding in to our bodies - perhaps the reason why Biologics work at first but eventually are unable to address the sheer load and variation of immune responses.

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  • Posted

    Please don't stop the MTX. I have sometimes thought it doesn't help, butwhat you don't know is that it could be so much worse with out ir. This didease is awful No one who doesn't have it understands. But don't go aoff meds without talking to your doctor.Mtx is still the best there is, and does help control the desease, .

    Please talk to your doctor.

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    • Posted

      Hi Barbara,

      I didn't go off drugs completely. I just went back to my other RA drug that I was taking before the MTX, which was helping MORE than the MTX. The MTX brought on more pain for me. More fatigue. I am tired of being tired and I'd rather get back on the Leflunomide than stay on the MTX. My doc was on vacation this week so I changed without telling her, but I did call her staff and tell them to let her know.

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    • Posted

      Many do not respond to methotrexate, the immune supressing drug often tried ny RA doctors and have toxic reactions actually causing more unmanaged pain, and triggering other infections.(hugely including dental).all causing health to digress.. Advocate for yourself..was confined to bed, wheel chair and cane for 2 1/2 yrs, failing methotrexate, biologics, and sulfa drugs until i became proactuve in my health researching the many causes contributing to inflammation and poor absorption of nutrients in the body..magnesium glycinate is responsible for over 300 enzyme reactions in the bodt that involve protein, muscle, bone health and needs to be balanced with a 1 to 1 or 2 to 1 ratio with calcium and vitamin D.
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    • Posted

      I guess I am specking of my own experience. When I started MTX it was so hard. I was so tired from it, and it was really awful. Mow, many years later and after a milliion other drufs, and bad reations to biologics, I am used to it, it doesn't fatigue me anymore, and when i did go of it once, I flared like cdrazy-- and I thought it wasn't doing anything.

      So it's just my experience. You need to do what's best for you.

      I now have a cray toe, I'm adding fish oils, lots of Voltaren gel, and it may. . . get better. Very frustrating disease. You just don't know what's going to work.

      Best of luck to all!!!

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    • Posted

      I wonder if you flared terribly when going off from this temporarily was because stored toxins from this medication were being released..kind of like withdrawl of a toxic substance..
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    • Posted

      Thanks cheria! I added tumeric with curcumin along with fish oil supplements (and of course the folic acid of 1mg that the doctor prescribed) to my regimine and I stopped eating wheat/gluten over a year ago. I have to say, the diet of being gluten free did nothing for the inflammation or fatigue; however, it did help me lose 25 lbs so I stick with it. wink 

      It is frustrating dealing with the Rhuematologist as she says one thing, but then changes and defends MTX on other occasions. At first she told me that none of the DMARDS would help me because my numbers are so high that the RA is in full mode. But then when I complained about the MTX not working as well as the Leflunomide, she told me it was due to changing drugs, and then it was because I needed to wait 3 months...when I had already been on it just 2 weeks short of 3 months. I find it hard to believe that 2 more weeks would make a difference.

      I know she won't be happy with me changing the med on my own, but I know my body better than anyone else and I know that the MTX was definitely not helping me. I'll check out Magnesium supplements. Thanks again.

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    • Posted

      Yes Barbara, if I've learned one thing on these forums it's that everyone seems to react to different drugs differently. Some have great luck with one drug, while others get no relief at all. It's going to be a long road of finding what works for me, but I refuse to settle just because my Rheumy thinks MTX is the RA drug because 'most people are on it'. I'm glad it finally ended up working for you!
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    • Posted

      Actually, the MTX only works so well, but it waswhen I was off it that I realsized it does SOMETHING. I also take sulfasalazie, 3,000 ,g a day and a little prednisone, but Orensia and MTX was the BEST! I just got too sick all the time. But my RA as so controlled I didn

      t even need the eye drops for my dry eye. Too bad.

      Good luck.

      I found magnesisum does nothing but help me sleep a little better, and too much will give diareah.

      Good luck!

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    • Posted

      Methotrexate did the same for me. I got the feeling that my Dr thought I was crazy. It really did make me worse. Within a couple weeks of going off it, my pain decreased immensely. I'm waiting now to find out if my insurance will approve Enbrel.
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    • Posted

      Wow Sue, is this truly a real RA specialist!! What is she trying to do to you!? Lol..this truly is no laughing matter though! It sounds like a language barier kund of thing, in which she is miscommunicating and leaving things out! So inferior of this doctor to infer MTX because "most people are on it for RA" which is also not true at all. The truth is that most are tried in thus as the first drug to see how they do on this.. As this cancer drug greatly compromises their immune systems, inducing so much pain, and other conditions including fibromyalga as well as tentative lupus, just as biologics can do, they are told to stay on it..or stay on it longer...while the pharmacy literature clearly says to stop this medication, if these painful or inflammatory induced conditions or new infections (including induced dental injections!!!!) present themselves!! What is going on do you think!? Anyhow, i am so glad to hear that you are listening to your body, and doing as I had to do to finally get the right management of this very often poorly managed painful disease!!!!! We need much more research for management of this disease, but for now, we must be proactive, very self invested, help each other!!!!!! The magnesium glycinate helps with multiple RA and fibromyalga conditions, but is only absorbed if taken with calcium and D3!!! This is the only way calcium is properly absorbed as well! Without this magnesium, the body actually depletes our calcium!!! D3 is needed in the mix as well for either of them to be absorbed. Research absorption ability of magnesium and calcium! The imbalances create conditions you would need to research to believe!!!!!!! Please let me know how you do..♥
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    • Posted

      My personal experience and resesrch shows that MTX as well as Biologics trigger not only all over fibromyalga pain (as magnesium is hugely depleted), but also induces a Lupus condition, induced by the medicine, but goes away when stopped! Magnesium glycinate should be talen with calcium and d3 if you have RA or RA symptoms regardless if you are on the further possible depleting RA medication trials.. I take plaquinil, mobic (anti inflammatory which is critical) and 5 mg of prednisone.. If i do happen to go into a flare, which is not to often now ( 4 yrs out of 7), a prednisone or medtro pack is prescribed starting at 20 mg, then 10mg, then 5mg over about 10 days. continuing at 5mg). Some doctors prescribe 20 mg straight for 10 days, than drop it right off!! Insane!! Should be gradual as this is messing hugely with the master adrenal gland and systemic hormones and this much without tapering is extremely hard on us physically and mentally!!!! Which then triggers fatigue and an emotional roller coaster like you wouldnt believe, and HUGE depletions of magnesium and the b comples stress vitamins in our body for functioning!!!!!!!
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