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General Support
1

So I’m still relatively inexperienced. I’m struggling badly at the moment, but an interesting thing is that I appear to have the capacity for three types of flares; joint, bowel, and systemic.

So this couple of weeks is systemic. My joints hurt and are stiff, but not so I can’t ignore them, as long as there’s not a 5k hike in my near future. My tummy’s a bit dodgy but I’m not losing weight.

But I am exhausted every hour I’m awake, I’m asleep at least 12 hours per day, and my brain is literally not working the way it should. To exacerbate things, my work Is requiring a very high level of thought and decision making at the moment.

So anyone with any recommendations?

I’m taking humira every two weeks. Have a couple spare, so could add one or two in as a more frequent dose.

Have steroids as a backup (stacks - I need them for the bowel thing) but very definitely do not want to take them for any length of time - but do acknowledge that in desperation there are times to consider them.

Caffeine and V - worked well before my bowel problems, so could be an option if taken in combination with medication to minimise tummy effects.

BTW, I already eat incredibly healthy, with a very serious focus on anti inflammatory food (in the context of my bowel disease). I’m happy to hear of those sorts of remedies, but I already use peppermint, ginger, turmeric, lemon, pepper, as well as making strawberries, blueberries, watermelon, mango, avocado,… (And the list goes on - I am so fortunate to ave such great accessibility :slight_smile:

2

Jen,

I am sorry that you are struggling so at the moment. I take Humira and eventually moved to weelky dosing because of prolonged 'systemic' flares. It never occurred to me to dynamically change the dosing interval in response to major flares. That is certainly a more incremental and adaptive approach. I applaud your creative problem solving abilities. If this is your thought process with a brain fog, you must be amazing on your good days! Well, I can say that my experience is that shorter interval dosing better managed my symptoms. Have you talked to your rheumy yet? I would definitely recommend exploring the Humira dosing option with your doctor.

3

If you need a short term fix to keep you alert for work, go with the steroids. At the same time talk to your doc about longer term treatment changes.
when I hit a patch where the fatigue is terrible, no amount of caffeine helps.
Interestingly, though I’m still having flares, the Cimzia I’ve been taking for the last few months has cut my fatigue by 80%. It’s very odd to consistently need so much less sleep and be so clear headed.
Best wishes.

4

I wish I could help you with some good advice but all I can give is my support. The inability to use your cognitive functioning will get better. In the mean time do as much as you can daily in the thought department to keep the functioning you have. I've been told its an inflammation around the brain stem area that causes this as I suffered the same thing last year. My family thought I had Early On-Set Alzheimer's or M.S. and so did the docs. Got trough it, just hang in there and use a lot of comic relief. Try a catch phrase when you forget something or do something silly or unusual for you. I say Pickle and everyone around me now knows what is happening. All you can do is keep your sense of humor and wise choice on the steroids. Try good funny movie or show every day if you can. Laugh, it stimulates your brain!!

5

The caffeine as much as I hate to say it could be the problem in regards to both the bowels and exhaustion......... Its easy to figure out go 4 -6 hours someday with out and see if you get a headache. If you do decaf works fine IF you fresh grind the beans.

You may want to ask about a tricyclic. As little as 25mg of amitriptyline at bed time can give both the rest AND reset in terms of pain control for the next day.

6

Hi Jen,

I'm sorry, I know that's really rough. From my experience, I only get that tired from medications. I've never taken Humira, but I've had others that make me want to sleep all the time. I agree sometimes lower doses more frequent may help. It worth a try if you can.

My son has Ulcerative colitis...so I can understand that also. He struggled a long time before getting it under control. One of the things that helped him was probiotics. Not just eating them in yogurt etc...but doses specific to what he believed he needed after doing a lot of research on his own. If you're interested message me and I will give you the specifics. Also, there are certain foods, even healthy foods that affect him that he stays away from. I'd be happy to give you any info I can get out of him. He's doing really well now so maybe it can help you too. Hang in there. I know the pain is so bad.

7

Hi guys, thanks very much for all your answers. (Not so) crazylady I’m definitely going to follow up on the laughter method in the short term - works been crazy so I’ve been far too serious!

I’m sure it’s not the caffeine (ever since the tummy stuff I only have one cup of coffee equivalent a day, only if my tummy is fine - not even tea if its complaining), or the Humira. I went through a rough patch like this with Enbrel and it just turned out to be an underlying flare that lessened off itself.

I’ll give it a few more weeks ( I’ve got holidays soon so hopefully I will get better rest then). If it hasn’t started to ease by then, I’ll try talking to the doc about the tricyclics. Thanks so much for listening :slight_smile:

8

Good advice already given, so just wanted to say hang in there. I’ve often noticed when work is extra busy and stressful my brain fog gets worse to the point colleagues say something to me and although I can hear what they say it doesn’t compute! Makes no sense to me at all! extremely embarrassing and frustrating to all. Hope you really try to get some good quality R&R on your holidays. X

9

Thanks Louise, reading back on this I wonder if its partly the increased demands from this very intense period at work, on both brain and body that is causing it (or at least creating a feedback loop). Lamb warned me about pacing a few weeks ago and I knew the advice was timely, but didn’t seem to manage to implement it…

I think I’ll be back here in 2.5 weeks glowing from my holidays! (Only 2 days of work to go, then two weeks sailing the reef on a catamaran :slight_smile:

10

Wow, sounds great Jen, have a wonderful time x

11

Enjoy your time off, Jen! If sleep doesn't get better, a sleep study may be in order..or you may want to look at your pain management at night. Often it's difficult for us to get good quality sleep due to pain, and tend not to take pain meds during the night when they've worn off. For me, I take pain meds, melatonin, and magnesium and it makes a world of difference in my exhaustion levels and my ability to think. For me B and D vitamins help with mental clarity as well.

12

Good to hear your sense of humor is in good working order Jen!:) Have an awesome holiday and rest up even if you don't sleep. You can cram a lot of fun stuff in a sleepless night with a little imagination!!! LOL After all... when in Rome as the saying goes.

The brain fog is awful, as I know, but look at it this way- at least you didn't do this to yourself on purpose like some people do(addicts) so you are not responsible if you forget or say something that makes people go, huh? !!!:):)

13

*smacks forehead*

And here I thought my (ahem) nasty gastrointestinal issues were just a result of the meds/getting old/gall bladder going bad. Had no idea bowel flares even existed. That, my friend, explains SO MUCH. Now that I'm armed with this new information, my next appointment we are going to have "the conversation..."

Won't it be nice to NOT have to take up residence in our single bathroom for hours at a time every night! My poor husband/kid. They get tired of doing the dance, waiting for my system to quit purging itself after every meal. (Not to mention my poor behind is getting rather sore as well!)

Never even correlated the fact that the...uh...issue seemed to resolve itself whenever I take prednisone for my other flare symptoms. The doc doesn't want me on long term steroids, so I have to wait until everything peaks at the apex of horribleness, then I take a 5 day heavy run. Then I stop. And, of course, everything starts back up again. sigh. His next plan is for me to take a massive dose of steroids every Sunday when I take my dose of MTX. I think he is going to up that dose from 7 pills to 8 as well. I can hardly wait! (sarcasm intended).

THANK YOU!

14

Hi Kelly,

It sounds like you are having a very tough run indeed. If you can find any alternative to that steroid cycling I’d strongly encourage you - I took them long term earlier in the disease and now they are far less effective - hence my reluctance to use them again.

With regard to the bowel flares, your GP or Rheumy may not have quite the lightbulb moment you just had - not all of them have much focus on the connection. Though I must say that if the prednisone is improving it, then the connection (and its inflammatory nature) are pretty clear! Have you tried Humira, and if so did it help? What about remicade? Enbrel was great on my joints but did nothing on my tummy, Humira keeps me on an even keel much of the time.

15

Started with Humira for my psoriasis, then MTX, then a combination of both...but they failed (miserably). They worked great for awhile, then....not. So my Rheumy switched me to and Ebrel/MTX combo....which also worked for a while then all of a sudden didn't any more. So then I switched to Remicaide/MTX. Because of financial reasons I had to quit the Remicaide (which is a shame since it worked better than anything else so far for me). The meds were provided to me by the patient assistance program, but in OKC docs charge between ■■■■■■■■ to infuse. Yep. To stick an iv in my arm and walk away. Its terrible! I've finally found a place I can get the Remicaide infused for free....but now I have to get my Rheumy to represcribe. His office is 700 miles away, so I'll be waiting to talk with him until Thanksgiving when I'm headed back to the deep south for a visit.

16

Oh yes, I’ve discovered the same connection, Kelly. For years I told my GP about the daily issue (which in my family is referred to as “PE” – “E” being Emergency). Their answer was always that I had an irritable bowel. I went for a colonoscopy. I discussed it with the gastroenterologist, who said he saw nothing “up there” but a healthy bowel. OK then …
In retrospect,the PEs got worse as my PsA did. But of course, I didn’t know I had PsA until fairly recently. And then I went on Enbrel. And presto! No more PEs. Situation now normal, day after day.
Pretty amazing.



tmbrwolf329 said:

*smacks forehead*

And here I thought my (ahem) nasty gastrointestinal issues were just a result of the meds/getting old/gall bladder going bad. Had no idea bowel flares even existed. That, my friend, explains SO MUCH. Now that I'm armed with this new information, my next appointment we are going to have "the conversation..."

Won't it be nice to NOT have to take up residence in our single bathroom for hours at a time every night! My poor husband/kid. They get tired of doing the dance, waiting for my system to quit purging itself after every meal. (Not to mention my poor behind is getting rather sore as well!)

Never even correlated the fact that the...uh...issue seemed to resolve itself whenever I take prednisone for my other flare symptoms. The doc doesn't want me on long term steroids, so I have to wait until everything peaks at the apex of horribleness, then I take a 5 day heavy run. Then I stop. And, of course, everything starts back up again. sigh. His next plan is for me to take a massive dose of steroids every Sunday when I take my dose of MTX. I think he is going to up that dose from 7 pills to 8 as well. I can hardly wait! (sarcasm intended).

THANK YOU!