Rheumatoid Arthritis Support Group

Rheumatoid arthritis is a chronic, inflammatory, multisystem, autoimmune disorder. It is a disabling and painful condition which can lead to substantial loss of mobility due to pain and joint destruction. The disease is also systemic in that it often also affects many extra-articular tissues throughout the body including the skin, blood vessels, heart, lungs, and...

2,179 Members
16,355 Posts
0 Online
Muscles & Bones
/ Rheumatoid Arthritis Support Group

Please help! All my improvements are gone.

gryd1963
gryd1963

Hi Guys,


I don't write much here and even less with this new format but I am so depressed right now I could cry. I was doing so well with my RA. My pain was at an alll time low and my morning stiffness went from bad to virtually non-existant. I still had work to do such as get to a lower dose of prednisone and hopefully off it completely but I was doing great on the Humira, the low dose prednisone, my natural supplements and daily physical activity (gardening). 


To make a long story short I went away for a week. It was not my idea and I preferred to wait but the family wanted to take a cruise to the Bahamas from NYC and I kind of had to try and go. There was no flying involved and the waters were smooth but by the 3rd day I began flaring and by day five I was barely walking and I'm now home and I'm doing very poorly with widespread joint pain, muscle pain and even bone pain. I don't recall ever having this much trouble getting around and I had to make myself a cane from an old golf club to use in the morning when my balance is at it's worse. I will admit that stress played a role in triggering this flare so I can't rule out future travel though I will never suggest travelling in the future and I will be more than content to never leave Connecticut again.


So for now I feel totally defeated. I was feeling hopeful with the improvements I had made these past ew month but now I have no idea if I can ever get them back. I had no choice but to bump my prednisone dose which I did not want to have to do but I'm fairly positive I'd be in a wheelchair 24/7 without the prednisone bump. I suppose I should call my rheumatologist and see if he wants me to come in to see him this week. He has mentioned using Arava in conjunction with the Humira so maybe now is a good time for that though we were gonna wait as I was steadily improving even though I was lowering the prednisone. MTX is out for me due to breathing issues.


If anyone has gone through something similar after travelling for a week I'd love your feedback. Actually I'd love anyone's feedback. The big question for me is 'Am I back to the drawing board and do I face another 2 years of battling this disease before I improve again?". Is there anything I can do to get back on track?


Thank you my friends. I am feeling so poorly, so out out of it and so depressed right now but I'm glad I remembered that you RA warriors were here to help.  


MarleneJ
MarleneJ
Biologics always work better with a DMARD. I am on Arava and I have been very lucky in that there are no side effects. However, it does not work as well as mthx in combo, so I am hoping to start the mthx in September when I see my rheumatologist.

I certainly understand how scary it is when a med starts to fail. But if you have only tried a few, I would not start to worry yet. I would definitely say you should start Arava. I think it takes 6 - 8 weeks to start working, Then panic if it doesn't work!

Just joking you! I am sure you will do well! It is always such an emotional struggle with the devastating effects of this disease, and never knowing when the meds are going to fail, and how long it will take for a new med to work, if it works.......
californialynn
californialynn
Call the rheumatologist. I wonder why you weren't given a DMARD to use with the Humira. It has a synergistic effect. Also, you could be experiencing some Pred rebound [which is one of the reasons I would never take Pred pills].
gryd1963
gryd1963
Hi Guys, I was given MTX with the Humira. Methotrexate made it very hard for me to breathe. It got to the point where I chose breathing over the MTX.
I guess we are looking at this from different perspectives. I don't think my medication failed. In fact the Humira was probably just starting to work it's best over the past month or so. Even then I attribute much of the success I had with working on daily gardening projects. The tougher the project the stronger and better I felt. Of course I may never know how I came so close to being pain free and it may be a combination of treatments. As for my decline I'm very much convinced that travel, being away from home, and some stressful related events that happened while away caused this super flare. I don't blame it on a medication failure at all. Maybe my question should be "How do we stop or slow down a super flare especially when it seems to be snowballing out of control?" Please let me know what has worked for you in the past. Thanks!
happychat
happychat
Well I am new to this just forewarning. I hate steroids but that is the only thing at this point that has helped to take the edge off while the methotrexate kicks in I guess. But I did go to my rheumatologist this past wk and shared my frustration and pain. He gave me a shot of depomedrol IM 60mg and it took about 3 days for it's fullest affect from what I feel and it seems to be doing me a better job than what I was prior to. I understand your mental state as I am there most days than not and the frustration is so overwhelming. I actually don't like leaving the house bc of my pain. It's a terrible place to be mentally. So maybe you could ask about that for the time being if your interested. Best wishes to you. Hope you feel better soon.
gryd1963
gryd1963
Thanks for the replies. While I have defended the use of low dose prednisone (5 mg or less) as a form of treatment for some RA patients I prefer not to take it personally, especally a high dose like I have been on for a few days. My rheumy once said that during a flare to take a daily dose of prednisone strong enough to alleviate the symptoms. That used to be 10 mg daily but due to the stressful nature of this flare I'm not even getting good control at 30 mg a day. The dose from this morning has worn off and I'm feeling horrendous. I will be calling my rheumatologist first thing tomorrow. I doubt there's much he can do. The pain is everywhere now and tramadol isn't helping much either. If I find relief I'll let everyone know.
coaltrain
coaltrain
I think you already identified the issue - stress! I know for myself, any time I get out of my regular daily routine I will really suffer for the next few days.

We've talked about taking a small vacation - we've never been on one after being married for 23 years. But just doing our bi-monthly grocery run just tears me up. I now only leave the homestead twice a month for the grocery runs and for quarterly doctor appointments.

I have learned over the years, at least for myself, is to NOT do anything out of the norm - learned the hard way as you seem to be doing now.

This is just one more of those nasty little things about living with RA.

I think it's just going to take time to get yourself back to where you were.
gryd1963
gryd1963
I agree with you coal train. I think a major upheaval of my routine played a role but the stress issue (which also happens to be a relationship issue) is still weighing me down and spiraling out of control. First thing I need to do is drop these negative, stressful thoughts. Second thing I am doing is going to see my rheumatologist today. He can get me in though I'm not sure what he can do. I obviously need to start somewhere. Thanks for chiming in. You know my case personally and you usually hit the nail on the head.

I'll update everyone this evening after my visit.
nonightshades2
nonightshades2
gryd, MTX may be what's causing my breathing issues, been wondering about that. Isn't there a supposed replacement now for MTX? Anyone heard anything of it?
gryd1963
gryd1963
Nonightshades. MTX generated a lot pf phlegm. It did so from the start. I wheezed the entire time I was on it. I don't know of an exact substitute but my rheumy thinks Arava (leflunomide) is the next best thing.
nonightshades2
nonightshades2
that's exactly what I'm having gryd. Arava, i"ll look into it. Thanks!
happychat
happychat
I am not sure if you guys see a pulmonologist lung doctor but I went to one before starting my methotrexate and she said you have to be on it for a while before the pulmonary side affect to actually happen I believe it's pulmonary fibrosis. An allergic reaction causes hives, or at worst anaphylactic shock. I am just thinking maybe you may have under lying lung issues possibly asthma or the pleurisy that can be caused by RA. I know since my diagnosis I have also been diagnosed with asthma but I know it's not from the methotrexate. Or it is possible since are immune system doesn't work right that maybe you have a virus or bacteria and when you took the methotrexate the symptoms somehow revealed themselves. It's just a thought. I am not a doctor I only play one on TV. JK. I hope you feel better soon!!!!!!
gryd1963
gryd1963
Happychat I do have underlying lung issues and see a pulmonologist. I didn't get pulmonary fibrosis from the MTX but coughing and wheezing can be a side effect of that med and when combined with my underlying respiratory problems it was decided to try something else. I am being treated now for ashtmatic bronchitis and doing so much better with my breathing while using Dulera twice daily. I'm fearful that the MTX may still cause breathing issues even while using the Dulera so I'll give Arava a try very soon. Thanks!
gryd1963
gryd1963
Medical Update: I did see the rheumy yesterday. I need to hit the lab for some blood work and he drained the fluid in my knees which do build up from time to time. He was concerned about the massive flare I am having and I got the impression he didn't think it was a run of the mill flare. I know in my mind that stress has caused me illness all my life and that stress is going to affect my RA a lot. It already has in the past. For now the issues causing the stress are being forgotten. I have no choice. That helped already along with the prednisone taper the rheumy prescribed. He is hoping I won't need this much but he prescribed 30 mgs for 5 days, 20 mgs for 5 days, then 10 mg for 5 days and then back to my regular dose of 7.5 daily which still is going to be reduced. I was able to get up the stairs last night but that improvement may have come anyway. I couldn't tell you if a prednisone taper like this actually works or how it would work. I am curious but for now I will follow his instructions regarding prednisone, taking my tramadol, getting more bloodwork, relaxing my mind and looking into adding Arava to the Humira treatment. He did not want to start anything new yesterday due to my current condition but I see him in a couple weeks and I will request the Arava and kiss my drinking days goodbye! Thank you all once again for your help and support!
californialynn
californialynn
OK, rather than applying band-aids all the time, why not get to the root of the issue: manage your stress. A cognitive behavior psychologist can help you learn the tools to do this. If that isn't feasible, then there are a number of self-help books on the market written by psychologists that include interactive assignments to help you learn the tools and how to use them.

Having RA is stressful and the sooner you learn how to manage all stress, the better it will be,.
MarleneJ
MarleneJ
I agree that stress can cause our RA to flare. In Oct 2014 we sold our house. By December I was packing, and I was starting to get small break through flares on Simponi. January 2015 we moved provinces, and the flares were getting worse.

By Feb. last year, Simponi failed completely. I was bed ridden! I couldn't feed or dress myself, let alone walk. I have to believe that the stress of moving resulted in this total failure of Simponi. It was too well timed to be coincidence.

But regardless of the reason for the med failure, the fact is, Simponi no longer worked. I did have to go on high doses of prednisone, and I have been struggling to find meds that work ever since - 18 months later.

So my thought is that if you are taking 30 mg of prednisone daily, that is simply not a flare brought on by stress. That is a sign of Humira failing totally. It doesn't matter that stress brought it on. It doesn't matter what put you into this state. The fact is, you need to find a new biologic if adding Arava doesn't work! I hope it does work, but be prepared to demand a new biologic, if it does not. Your body is simply not working well with what is going on in your life.

As for stress, why don't you figure out some ways to cope with stress? I think we all have stress in our lives, that affects us negatively. But it is possible to take negative stress and turn it into a positive - this can include using meditation, relaxation techniques or in my case - prayer and contemplating the Bible help me alleviate stress.

I find it interesting that mthx gave you breathing problems. Did they investigate methotrexate lung? I have severe asthma, prior to RA, and mthx did not affect it at all. But Rituxan - that was the worst thing for my lungs that has ever happened!
Posts You May Be Interested In
  • MarleneJ

    Prednisone Hypomania

    Posted by: MarleneJ
    Last Reply: SunCloudJD
    4
    I've been on high dose prednisone for pneumonia, and now I am slowly weaning. But lots of symptoms I don't like having, plus overeating has put at least 10 lbs on me. The food is "loud" as the GLP-1 users refer to it.Also pressured speech. Which comes out in my posts. Sorry I posted so much. I just need an outlet for my agitated and irritable brain. Just scroll on by my posts, if they are too...
  • MarleneJ

    Upgrading someone to admin in a private group!

    Posted by: MarleneJ
    Last Reply: MarleneJ
    3
    I haven't been around in a long time. I am admin in a private group, and I would like to upgrade someone else to that position. I thought I knew how to do that, but the prompt has gone missing. Or is it not allowed to upgrade someone else to admin? I just find "ban and demote" under "Edit." I don't get notifications to DS anymore, but I wil come back in a few days to find out the answer. There...