Advice…good advice. Unsolicited, well intentioned, good advice. When you’re chronically ill, you get a lot of good advice. Most people mean well, and want to help. But sometimes people just cannot accept that some diseases are, in fact, incurable. And sometimes people get sick, even if they’ve done everything ‘right’.
GUEST POST!!! Sarah, a long term reader of my blog, who has become a wonderful friend wrote this post. I think many of us can relate, so I’ve published it here with her permission.
I have always made to- do list for myself, since I was a first time mum, and as time went on and life happened I relied more and more on my to- do list. Every day before I went to bed I would sit down quietly with my to-do list and count each marked off item. Each completed item gave me a great deal of satisfaction, a feeling of success and told me what a great mother, wife ,daughter I was. After all look how organised and together I am. And then I would make my to-do list for the next day, tidy my desk, and sit my list on the top of my empty desk ready for my next successful and all that I would achieve. My to-do list became my best friend, she was my personal complimentary soul sister, we thought alike, we achieved great success, we needed each other, the perfect fit.
I haven’t really written about humira. Just that I was about to start taking it. Depression and other aspects of my life took over, and I didn’t blog for a while. But I think I should fill in the gaps some.
I started taking it on the 13th November 2013. I have now taken 5 shots. Humira is a tnf blocker, similar to Enbrel, but it is a fortnightly injection, rather than weekly, like Enbrel.
As always, I didn’t read up on the side effects – I don’t want to curse myself. I feel reading about the worst case scenarios can become a self-fulfilling prophecy. I know the general risks with TNF blockers from my experience with Enbrel.
I took the first shot in the afternoon.
Within two hours I had a stomach ache, bloating, and nausea. Not severe, but unpleasant. Kinda like PMS, when the bloating and cramping is really bad. My stomach looked almost pregnant, couldn’t do up my pants. Ok, interesting…
The next morning I felt different. Looser. There was still pain. But I could move easier. It’s really hard to explain. I’d never really separated ‘stiffness’ from ‘pain’ before…but I guess I wasn’t as stiff. I was still in a lot of pain, however.
By the afternoon the pain was receding. Now this IS odd. Usually the pain is ramping up in the afternoon. Instead, I was feeling relief. Ok, that happens sometimes. Some days things just get better for no reason. Don’t get too excited yet.
By Friday morning I felt amazing. Mild pain when I got out of bed. No hobbling out of bed. Just some soreness and aches. Nothing sharp. Nothing sharp *anywhere*.
And I had energy! I have never really considered my fatigue anywhere near as big a problem as my pain. But that morning I realised how bad the fatigue had become. Because now it was cut in half! I didn’t feel like I had lead weights on my shoulders anymore. I didn’t feel like a tyre was tied around my waist and I had to drag it around all day. I didn’t feel that deep down exhaustion, and ache in my muscles.
I felt OK.
Wow. Starting to get a little excited here.
And then the anxiety kicked in. As my energy levels increased, it turned to anxiety. And then to mania. Over the next two weeks I went on a roller coaster ride of emotional turmoil that was unbelieveable. I would swing from ridiculously happy (mania) to deep depression over the course of a few hours. Fast cycling bi-polar. Then I would swing up to hyper anxiety. I was unable to leave the house. I had feelings of impending doom. I didn’t want to let my children out of my sight because I was convinced something awful would happen to them. It was awful.
And the pain and fatigue returned after 4 days.
Wow. What a ride.
I called rheumy. She said that sounded very unusual (doesn’t it always???). Considering methotrexate provoked a psychotic reaction that caused me to be hospitalised, she didn’t argue. She agreed that Humira can cause psychiatric effects and ‘mood changes’. Mood changes was putting it mildly.
I agreed to continue. After all, after one shot, it could have been a co-incidence. I’m loathe to blame a drug for a reaction until I am really, really sure.
Next shot, 4 days of feeling good pain and fatigue-wise (and when I say ‘good’ I mean about 50% less pain and 50% less fatigue). Which is pretty awesome. Not even close to a ‘normal’ person tho. We are NOT talking pain free, remission status. Even for a day or two.
And the anxiety returned. I called it the bi-polar express. That Friday (after my Wednesday shot) I sat in my living room alone. My kids had gone to school. I was convinced that someone was coming to ‘get’ me. Do me harm. Something. I was terrified. Genuinely terrified. I knew it wasn’t real, and so I could logic through it, to an extent. But the feeling was very real. And it was not a nice feeling.
I kept checking the house, the doors, windows, making sure they were locked. I had to check all the cupboards to make sure no one was hiding in there. I checked the man hole periodically because someone could be in the ceiling and climb down into the house that way.
It was crazy.
But I knew it wasn’t real.
Persevere. I wanted to stop Humira. I hated it. But this time it only lasted a week. The anxiety abated. It was getting better. And the relief I felt (pain and fatigue wise) was amazing. I hoped that the improvement in pain and fatigue would continue, and would last longer. And the anxiety and depression would improve and get shorter.
That was the trend. It was sound logic.
But the last shot I took, a week and a half ago, gave me NO benefits whatsoever. It DID give me four days of bipolar madness. Not only did my pain and fatigue not improve, I went into one of the worst full body mega flares I’ve EVER had.
It really knocked me down. Physically my world stopped. Luckily I had some friends to help. Emotionally it hit me hard.
With every drug, there is a moment when you realise it doesn’t work. Its not going to work. Another treatment option failed. Gone.
I had that moment with Humira last week. The chances of it helping now are very slim. I will ofcourse continue. My three month appointment with Rheumy is in four weeks. So I will have two more shots between now and then. Two more chances for Humira to do something wonderful.
Humira is particularly hard to let go, because those first four days is the best I have felt in many years. By far the best reaction I’ve had to any drug or treatment. It gave me hope on a level that I haven’t felt before.
So when I crashed, I crashed hard. There were many tears. It was ugly.
But it was beautiful, because a friend came over and held my hand and listened to my cry and stayed with me. Also a new experience for me. She helped me through. And now I am accepting that humira probably won’t work and it is time to move on.
Unfortunately, rheumy will want me to do the full six months. I don’t see the point. I really can’t see that once a drug has given you some improvement, and then that improvement stops or ceases to happen, that its going to suddenly start working again.
I have read about humira not helping for up to six months, and maybe that’s worth waiting for. But I don’t think it’s a ‘start/stop’ thing. I think once the ride is over, its over.
So I will have to ‘fight’ with rheumy. Fight to move onto the next treatment option. My last treatment option.
Possibly the scariest idea of all.
Four more weeks to think it through. Still hoping for a miracle. Can’t hurt to hope…
I’m sorry, I have been MIA lately. Truth? The last few months have really taken their toll – liver problems, kidney problems, staph infections, bizarre skin rashes, eyes sight problems (the very real possibility that I could go blind), tapering prednisone yet again and of course the unrelenting, severe pain in every joint.
I know you all understand…but depression got the better of me for a while. I have missed you all – and posting here is something I should not have stopped doing. Writing soothes my soul and helps me deal with all of the above. I guess I was loathe to write about depression…but now I realise its kinda dishonest to skip that part of this delightful disease. Like hiding part of me. As if I am ashamed.
Well, I am not ashamed. Depression is no more anything to be ashamed of than having Rheumatoid Arthritis itself. But it’s not easy to express yourself when your brain is confused and you’ve lost your way. I will write more about it, because I believe it’s an important part of my story, and it’s time I had the guts to tackle it. But briefly, what have I been doing to get back on top of things?
I have been spending more time with my psychologist and I have adjusted my medications. Tapering prednisone causes mood problems for me. And methotrexate causes severe depression. The kind that creeps up on you…slowly, insidiously. And one day you realise that you are not yourself at all, that you are having crazy thoughts and you are no longer driving the bus.
I stopped all my medications for a few weeks, except prednisone. Physically it was fairly horrendous. The pain was as you would expect. Which didn’t help my mood. But I was depressed because of pain and disability…a very different thing.
Medication induced depression feels different to me. And I recognise it now, having been down that road a few times already, if not always which medication is causing it. It takes trial and error. But the main culprit is methotrexate and now, for real this time, I will never take that drug again. I stopped it three weeks ago, and now I am getting back to ‘myself’. I am feeling more normal, more in control of my disease, in fact I’m feeling downright defiant!
Much more like me J
I have even booked an impulsive and rather irresponsible holiday with my kids. Just me, and the kids. I live in Canberra. We are flying to Brisbane (2 hour flight) then I am picking up a car and driving a further hour north to the Sunshine Coast. It will be much warmer there than here. There will be a beach. And there will be a pool with a huge spa. All I need to do is get through that flight, and car trip.
I admit I am nervous. I have never done this without the support of an able bodied adult. Someone to take the wheel if I have a full body mega flare. I am anxious…and last night I felt absolute panic about whether I can, in fact, physically do this. What if I DO have a full body mega flare? Several of my joints ‘flare’ every day. I am always in pain somewhere…but which individual joints are flaring makes a radical difference to my capabilities. I can adapt, find a way. If ALL my joints are flaring (hands, elbows, shoulders, hips, spine, neck, knees, ankles, ribs, jaw) I can’t ‘save’ one joint by putting more pressure on a ‘good’ joint. I can’t do much of anything at all.
Since I have tapered below 12mg of prednisone, I have been needing to take round the clock slow release oxycodone (Targin) and short release oxycodone (endone) for break-through pain. There is always break-through pain. I am at 9mgs of prednisone now, and I need to taper off. Slowly. There is no choice. Prednisone has caused cataracts and glaucoma and I don’t want to go blind. So the only option is stronger-than-morphine opioid medications.
I can’t take these drugs when I need to drive a car for 100kms on unfamiliar roads.
I can take all of them as soon as I get there.
So I need to have a mild to moderate day on the two days that we are travelling to and from. I am trusting the gods to sort out this out for me, because I am an optimist by nature. And if the gods let me down, I am trusting myself to figure something out, because I am capable, and resourceful and I fervently believe there is always a way.
And I plan to document it. Show the world all the things that need to be taken account for a person with a chronic illness, for just for a few days away. Like making sure there is a microwave for heat packs. That there is a fridge for Enbrel. That the beds are comfortable…no camping or two star ‘roughing it’ for me. The 7 or 8 daily medications, plus the 2 or 3 others incase of incidentals, like nausea or severe indigestion caused by meds, or the eyedrops that I need to take daily to protect my vision. All the little ‘extras’ things I need to pack…incase.
The sheer courage that it takes to leave the comforts of home where you are ‘safe’ and take a chance because sometimes the soul needs to travel, to find warmth, to find sun. To try to give my kids something a little more normal. To give them some good memories. To give ourselves a challenge and prove we can do it, even if it’s not the way we used to do it.
Wish me luck. Pain free is too much to hope for…but pain control is possible 🙂 I wish the same to all of you!
I’ve been very quiet of late because I have been struggling. I haven’t wanted to write a really ‘negative’ post, but it’s not really negative. Its reality. Its truth. I suppose it wouldn’t be honest for me to not admit that over the last few weeks/months the hits have kept coming. And they have knocked me down. And I have been experiencing bouts of depression and loneliness that I can’t just ‘mind of matter’ and wish away. No amount of positive thinking or optimism is enough right now. In all seriousness, the surprising thing is not that I am now experiencing this depression, but much more that I have gotten through the last few years largely escaping it.
I hate to admit that I am not coping. But I am not. I don’t know if the pain is worse now, or if my pain tolerance has fallen. Does it matter? The end result is the same.
One thing I am very sure about is that my depression is secondary to pain. When the pain is under control, there is no depression. In the beginning I remember doctor after doctor, person after person, telling me I was just depressed. Doctors, because my bloodwork was clear. People, because I looked just fine.
All. Wrong. In my case.
I know there are people who suffer aches and pains as a result of depression. It’s a physical manifestation of their depression, and the pain is very real. But this is not so in my case. I log my moods and I log my pain. If I overlay one over the other, surprise, surprise. When the pain has been bad for many days, depression starts to set in.
Now depression has made itself a little home here next to me on the couch…not that I invited it. Because I have received the blow that all my doctors have been warning me was coming.
I have to get off prednisone.
I know that everyone has a love/hate relationship with prednisone. But I have loved more than hated, because it’s the only thing drug that really helps, the only thing that keeps me moving. While I am in daily pain still, when I am taking 15mg of prednisone daily, usually the pain is manageable. I can walk. I can take care of my kids. I can go to the gym sometimes. I can look normal.
I still have the mega flares, where I spend a few days in agony and unable to move. But they aren’t every day. Life is far from ideal…but it’s comparatively liveable.
My doctors have been telling me for years that I need to get off prednisone, because it will cause me more trouble in the long run. The usual worry is bone density, but for me it’s my eyes. I have uveitis again, plus cataracts and increased eye pressure from the prednisone. My opthamologist told me I have to get my dose down to about 7.5mg, or risk losing my eyesight.
So my time is up!
I live on my couch now, and am taking oxycodone and ms contin (morphine) around the clock to deal with the pain. This is not living.
I have steroid eye drops for my eyes (irony). They are improving. I go back in a few weeks to get another check. Perhaps if they are OK, I can go back on prednisone. I doubt it.
I am still taking Enbrel, methotrexate, Naprosyn and plaquenil. Not helping. I am switching to a new NSAID – arcoxia. It is expensive. But worth every cent if it works.
Last visit my rheumy said she will switch me to Humira in 8 weeks if there is no improvement on Enbrel. She doesn’t think there will be.
So I wait. And wonder. Has anyone else had eye inflammation, uveitis, iritis? Or complications from prednisone use, like cataracts and/or glaucoma? Let me know how you’re dealing with it, or how it all turned out.