Searching for my smile

I haz the sad.

I haz the sad.

I’ve now taken two doses of Humira—a month’s worth—but my rheuma-dragon continues to bite and gnaw the joints of my hands, ankles, and feet with undiminished enthusiasm, like a dog with a well-loved bone. If I hadn’t actually injected the stuff myself, I’d never believe I’d even taken it.

Yes, I’m disappointed that I don’t feel better. Yes, I know this stuff can take quite some time to show results—if it’s going to. I’ve studied up on Humira and the other biologics, and I’ve read what many other bloggers who’ve taken it or are taking it have written about it. I know that biologic DMARDs, like their cousins, the chemical DMARDs, are fey and fickle. Some people get immediate results. Some get results only after a longish “waiting period” has passed. And for some people, these drugs never work at all—in which case, they have to try another one, going through the whole waiting process again. And maybe again … and again …

I’ve told myself to be realistic and not expect anything. But you know how it is. Deep down inside, I was hoping I might be one of those lucky souls who sees quick and dramatic results.

Seems I’m not. Still … maybe soon. In the meantime, I’m sucking it up.

And now, a new health challenge. About a month ago, just before my lady-parts exam, the nurse took my vitals. Blood pressure, weight, temperature, the usual. My blood pressure was sky-high, even after waiting for a while and taking it a second, then a third time. After my exam, they sent me straight to my primary care doctor.

At the primary care clinic, my blood pressure remained so high my doctor stuck a monitor on me, made me sit in a wheelchair, and had me trotted right over to the emergency room. And there I stayed for the next three hours, following the ER doc’s instructions—“Be calm. Think happy thoughts. Take a nap.”—and hooked up to monitors. Eventually, my BP came down. It was still higher than it was supposed to be, but I wasn’t in imminent danger of a stroke anymore. (Wow. I felt just fine, too!) They sent me back to my primary care doctor.

She gave me an injection to bring my BP down further—she felt it was still uncomfortably high and wasn’t very happy with the ER doc. She had me wait in her clinic for another hour and a half while the medicine made my BP drop. Finally, she felt it was low enough that I could safely leave. Before I did, though, she prescribed a daily blood pressure medication.

I saw her again today for another follow-up. She adjusted the BP med dose for the second time. Seems my blood pressure is still higher than it should be. In the meantime, I’m slowly cutting back on coffee (which I’ve already done over the last couple of years—this is even more). I’m down to just a couple of cups a day, but as my doctor reminded me, the goal is no coffee at all. That’s not going to be easy for me. I get horrible caffeine withdrawal headaches every time I decrease how much I drink. That’s ugly enough, but you know what? I don’t want to give my coffee up entirely. I’ve been drinking it since I was 16 years old. I love coffee.

Why is it we always have to nix the good stuff? Why can’t I give up Brussels sprouts instead?

Other changes I’ve got to make because of blood pressure: cut even more salt out of my diet, and go on a diet. Again. I guess I might as well. Without any salt, my food’s going to taste like kaka, anyway. And of course, I must exercise. Which, I remind myself, is also good for the RA. Sigh.

I’m feeling sort of low these days, but I’m searching for my smile. It’s out there somewhere.

11 thoughts on “Searching for my smile

  1. I am so very sorry about these (non-) development!.
    You realise, the BP thing may also be related to the stress you have (had) with moving and caring for your mothe? Never underestimate stress, even positive stress.
    You are doing all the right things and I am with you: no coffee is not the answer. Less coffee, yes. Maybe check out low/no caffeine varieties or replace some of it with tea? Decent black tea with a touch of milk is my alternative staple.
    As for salt, try herbs, get some mediterranean recipes online and avoid ready meals, esp. Asian. I suppose your doctor also told you about no alcohol for a while?
    Exercise of course, but also relaxation. As in regular, morning and evening 10 mins or thereabouts, something silly and easy, check out autogenic relaxation on youtube.
    And: if you haven’t done so, get yourself a BP monitor and record your readings for a while to find out why and when it’s high. Maybe this way you can introduce some easy changes?
    As for humira, time will tell.
    Look after yourself, Wren!


  2. Wren, I am so sorry. I know that moving to a biologic was a major decision for you and when you make that big of a leap, it is doubly disappointing when results aren’t forthcoming. I know that it took a while for Humira to “kick in” for me. I didn’t notice a major difference but when I had to go off of it for shoulder surgery, I could really tell I was off the drug. Patience is not one of my attributes so it’s a bit hypocritical of me to suggest that you try to be, but please do try not to get discouraged.
    As for the BP issues, I haven’t used salt in year. There are some great salt substitutes (I use one called “No Salt”). I can’t tell the difference and none of my guests have ever mentioned anything.
    Obviously, you need to do what your doctor says, but once your BP gets stabilized, you should be able to add back in coffee in moderation. There are many benefits to coffee including being a mild diuretic — which helps with BP.
    I know you’re discouraged, but you’re a strong woman and you’ve been through so much worse than this. In a couple of months, this will seem a small blip on the radar and you’ll be feeling much better on the new medication.
    In the meantime, I’m sending hugs and warm thoughts. Chin up!


  3. Oh Wren, this post made me so sad for you. I hope you find your smile soon, but more importantly, I hope you start to feel better. Sending warm healing hugs your way (and a smile, hoping to invoke one in you 🙂


  4. I hope you start to feel better. When I started on Humira I had campaigned for “something better” because of the life-limiting fatigue. My Dr was not totally convinced I needed more (and that’s another story). It took 6 months before I actually realized it was working and I was able to tell because I noticed my limited ability to exercise improved. I think for me it took an unusually long time.

    Stress always raises my blood pressure. It’s worst at the rheumatologist because I am always happy to see him, but also excited and hopeful. You’d think after 30 years I would be more realistic.

    I hope yours calms down. Don’t let them give you diuretics – I had a terrible time with those and Sjogren’s too


  5. It’s no wonder your BP is high. You’ve been under too much stress lately. You need someone to take care of you! But most importantly, you need to rest and let your body recoup. Also, pain increases your blood pressure. I hope they took that into consideration. My BP was sky-high when I presented with shingles. I hope that with your follow-ups they can adjust your dose accordingly and you’ll be able to keep your cup of coffee. It would be a perfect world if we only had to give up the things we don’t like. Wish I could come over and give you some TLC. Sending you good thoughts!


  6. Oh Wren, such a tough month. Just a thought, if you are on arava be sure to mention your bp to your rheumatologist. My bp became dangerously high while taking it and I had to stop. Thank goodness they caught the bp before anything happened.
    Hang in there. If the humira doesn’t work another will. I took humira and got no relief but when I started enbrel I saw great improvement. As you well know, RA is a disease that requires such patience. I hope you find your golden ticket soon.


  7. I’m sorry to hear your BP is high and also that Humira hasn’t worked yet. I’ve been on HUmira for a few months now and it is not working for me either. I started this year on abatacept and got my hopes up as I thought it was going to be the one that really worked after trying humira and embrel last year. Unfortunately I had an allergic reaction and had to come off it. I understand your low feelings. I feel that way too. I try not to get my hopes up but it’s hard. My knees, feet, ankles hands and wrists are awful. I hope Humira helps you and you get some relief. Hugs, Fay.


  8. Sorry to hear your woeful tale Wren – but I have one little bit of hopefulness to offer. When I got my first microwave it said you should salt food AFTER cooking – so I obeyed the instruction and then discovered I never remember ed to add salt! For over 30 years I have not added salt to food, not even at the table! Not even in the water for cooking rice or pasta. It now poses problems when we are on holiday and we are eating out every day – far too much salt! David often leaves food because it is too salty for him.

    However, the bit of hopefulness is that if you are good your taste buds will adjust. Our taste buds are renewed every 6 weeks or so so once you get to past 6 weeks you have a set of taste buds that have never known salted food. If you can’t cold-turkey it, then reduce the amount you use every week until you get to none (applies for all the things you have to reduce) and after a couple of months you will be using much less salt anyway and going to zero won’t be as hard.

    When I was diagnosed with raised BP and atrial fibrillation not one doctor here suggested giving up wine, just told to drink it in moderation. This is Italy of course! A bit of fiddling about with medication has me very happy on moderate doses of 2 different substances with a BP of 110/70 for a lot of the time, sometimes less, and with no side effects (and no less wine…)

    It is actually not good practice to reduce a patient’s blood pressure too fast – medication should be titrated to reduce it slowly to an acceptable level. Vascular experts often say that older patients should really be left with a higher level than usually acceptable because if it is taken down too low and there is already hardening of blood vessels the brain will get a reduced supply of blood – and therefore oxygen and nutrients. This in turn can lead to dizziness and falls as well as confusion.

    There is evidence that cutting carbs has a good effect not only on weight (losing weight itself reduces BP) but also on BP and cholesterol.

    And finally – they have checked for all the other things that can cause raised BP I hope? There is more than one cause and treating the symptom and just reducing the BP doesn’t answer why. It may not be possible to identify a cause and then it is classed as idiopathic but you can’t do that without considering the options.


  9. Hi Wren, really sorry you’re having such a low. I’m thinking there’s still plenty of time for the Humira to work though, and I really, really hope it does. The blood pressure thing is a real bummer! I find my taste buds do adjust when I diet – things that seemed tasteless before suddenly are delicious and if I’ve been avoiding sugar and then have some again it’s just sickly. Only thing is of course, it’s not sickly for very long – I’m soon in love with it all over again But on the bright side, yes, the taste definitely DOES adjust – so you can look forward to some great new taste sensations! 🙂


  10. So sorry Wren. When I got my high blood glucose test I went very drastic and now I feel great. I lost almost 20 lbs, I no longer get migraines and I feel great. The scare of diabeties made it easier than it thought it would be. I stopped thinking of it as giving things up but as gaining years on my life. Sounds corny but I can live without cookies if it means I will live long enough to …. For me it is travel to Australia. Good luck!


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