RA, fatigue and medications.

Im just going to ask that you forgive me right now for this novel I am about to write. I am so frustrated and worn out I just need to get this off my chest and I know that there are many of you here that will understand.

So I have been having really bad bouts of fatigue the last 4 weeks or so. So bad in fact that I get dizzy, short of breath and feel like I might pass out when it hits. I also have not been anywhere near having my RA under control for most of the year. I have been on several different meds this year and all of them the side effects have been severe enough that the Doctor suggests another medication after 3-4 months. I have had a lot of pain. Lots of nights where I have felt like I just wanted to die. Depression and anxiety have been a pretty constant companion and were it not for my family I don't know that I would have the strength to keep putting one foot in front of the other each day. It has been horrible.

I have not been to work in about 3 weeks now. My employer has allowed me to work from home but some days I can't even do that with any real effectiveness. I have been doing what I can though and they have been very supportive which I of course appreciate but I feel guilty at the same time because of my illness and have alot of stress and fear over the future for my family and their well being. Also because they take care of me and I know it is hard on them seeing me this sick.

I am currently taking MX, sulfasalazine, and Prednizone. Of the 3 I have been on Pred for the better part of the year but for the last few months have been at about 15mg a day. I only started the MX and Sulfa about 3 weeks ago. I have gotten off of the Pred twice but each time I flare up and my Doctor puts me right back on it.

So a few weeks back while going through one of these fatigue spells I called my Rheumy and explained to them what I was going through and asked them what I should do. They instructed me to go to an urgent care facility and ask them to run blood tests to see if I am suffering a secondary infection or something that could be making me so fatigued. I went and they did just that. Pulled 6 vials of blood from me and ran a whole slew of tests.

They called me a few days later to tell me that I was anemic and also had low cortisol levels. They then told me that these symptoms have nothing to do with my RA or medications and that I need to see my general physician. I figured ok and made an appointment with him. In the meantime I started reading online about cortisol levels and of course it turns out that cortisol is made and released by the adrenals and that cortiosteroids can have a direct affect on low levels of cortisol as well as the hypothalamus and pituitary glands. The symptoms described are exactly what I experience but the only thing I can add is that they are simply crippling. I can literally do nothing when I am going through them I am so exhausted and the symptoms last and do not go away by getting rest. I have been living in my recliner and some days I only leave it to struggle to use the restroom. It is a miserable time all around.

At any rate I started weening myself off of Pred last week. I have gotten down to 10mg/day at this point. I have been feeling a little better but still have these episodes and overall feel tired much of the time. I know that this will ease up as my body begins getting used to the lack of Prednizone and starts making its own stuff once again. My RA has been actually getting better and I think that the MX is starting to kick in finally. I have rough mornings but my pain and stiffness has decreased dramatically. For the first time in the last couple months I have had more good days this week than bad. :)

I saw my GP today and he told me that the Pred is certainly the cause of this issue and that I need to ween myself from it and give my body a rest. he is concerned however that the RA flares will come back and that I will need something else to combat it. I will have to work that out I suppose with my RA Doc.

I am really disappointed that my Rheumy was not able to tell me that this was related. I know that Pred carries a massive list of side effects with it and maybe I am the first person that their office has seen with this particular side effect from it (I doubt this) but it literally took me 20 minutes of reading to come back with that information. I don't know why but it just bugs the hell out of me that they rely so heavily on this drug for their patients yet didn't do a little research before telling me in no uncertain terms that is was not related to my disease. I guess that the one thing I can take away from all of this is that I am my own best advocate and need to be proactive about my disease and treatments.

I have been looking into cognitive behavioral therapy and meditation. I have been so worried and stressed out by all of this I know that it can not be any good. I need to find a way to be at peace with this even when it is at its worst. I have missed going to church and that has been really hard as well. I always feel better when I can make it to church and not going has been really hard. My pastor has been to visit me but it just isn't the same. I have hardly seen any of my friends or people I know in the community and that too has had an affect.

If you made it through all of this I want to thank you. RA has really been kicking my butt this year and all of you have been a mighty big support when I have been struggling. I owe you all a big thanks. I want you to know that I am grateful for this forum but especially grateful for the people here who make it what it is.

I hope that all of you are feeling well and if not know that you are not alone. I always feel better knowing that there are people here that I can share my struggles with who understand.

-Don

Hi Chartreux, I have an appointment this week with my RA Doc. I am actually doing better since I started methotrexate injections 4 weeks ago so far as my RA goes and I have not been flared up nearly as bad. Not good enough that I went into the office but I did actually make it out of the house to go to the store which was the first time I had gone anywhere in about 3 weeks. Last week I actually had more good days than bad for a change with the exception of the fatigue. I do have pain meds and I take them when I need to.

I also take D as well as B12 on a daily basis so i know that it is not that. It is the Prednizone no doubt about it. Since I have gotten down to 10mg from 15 and started taking an Iron supplement I have begun to notice a difference. I still get the fatigue but it is nothing like it was. I just hope that I can get off of the Prednizone without having a massive flare up and stay off it. It must not have this effect on others or someone would have chimed in about it. It seems that adrenal exhaustion is a pretty uncommon diagnosis and in talking with my GP about it he didn't think that was a very good term for what I am going through. He told me that adrenal exhaustion is something that people get who are in ICU.

This is a pretty good article on it and what got me to thinking about the fatigue and stress factors in my case;

www.endfatigue.com/articles/Article_the_adrenal_gland.html

I hope that you are able to find a medication that will help soon. It has been a really tough year for me in that regard as well.

Don_D,

Thank you for posting. I, too, have been going through similar symptoms as you. I feel as though I am going to lose my mind! I feel so alone in this battle. I have no family support an no one that understands what is going on with me. The fatigue, depression, stiffness and pain can be overwhelming for me.

I just had blood work again and rheumatologist said everything looked great. If everything looks great then why do I feel like crap!? Every time I taper prednisone down to 15mg (I started at 30mg) I get swelling, stiffness and pain. I don't even want to mention the fatigue I get!

I take MTX 25mg, 15mg prednisone, 1mg folic acid, 10 mg Lipitor and 200mg verapamil. (I refuse pain meds and will refuse prednisone once weaned off!)

I hope you are feeling better Don_D

Hi Don, one of the hardest things I did was to get off prednisone. I did it because the side effects were horrendous, I lost a tooth from masked pain, I got high cholesterol and blood pressure, I was rapidly losing bone density, I was having trouble sleeping... any way to drop from 10 to 5mg was the hardest. My GP reccomended dropping .5mg every 3 weeks as trying to drop 1 mg per week I kept flaring and my pain was out of control.
I upped my pain killers initially until my body reconfigured itself and adjusted to being in more pain, now after a year off prednisone I feel back in control. I lost over a stone in weight (without dieting), I feel so much better physically. I think its an evil med. I will take it for 3 day impacts on flares but I would hate to go back on it again. I think it was affecting my thinking too. I feel much more myself again off it.
So goodluck, persevere and you will acheive life without pred! My rheumy said 5mg is an ok dose, it doesn't harm you long term but I wanted off completely.
Best wshes, golitho

I am hanging in there I am down to 10 mg and my flare is subsiding. I am starting to feel better, I am going to taper very slowly and hopefully I won't upset the apple cart :)

I am back to work and that is a huge thing. I am grateful for it.

Thank you so much wearyRasufferer you made my day :)

Don, my heart goes out to you, I hope you are starting to feel better too. I have been feeling the same here. Unless I NEED to go to work I have been in bed. Pain, fatigue, shortness of breath and feels like someone is sitting on me. Its really getting old. Dont want to hijack this thread, but wanted to let you know I am thinking of you. XOXO