Kickas.org Forums Ankylosing Spondylitis General Discussion #1 AS Web Support Group "Fatigue"

So, I've consulted doctors and am waiting for blood test results... but I'm having a bit of trouble.
I'm following:
- low-starch diet since July 2013
- weekly Enbrel injections since end Sept. 2013
but since the beginning of Dec. I'm SO SO SO SO TIRED.
I had finally started sleeping the whole night in Oct. and I'm pretty pain free now, except:
- permanent kink in my neck
- "reduced lung capacity", wheezing and asthma attacks from time to time in early morning hours
- anxiety attacks? Noises wake me at night (and I live in student housing!) and I have trouble falling back asleep because my heart goes to the races
- I've been sleeping 16 hours a day and then I'm still tired, weak and feverish.
Everyday I 'hit a wall' in the afternoon, with fever, dizziness and cloudy thinking, which seems worse in the days just after the Enbrel injections.
I talked to my physiotherapist who reviewed my case after 2 months on Enbrel and she wasn't aware of such tiredness but she will discuss with the doctors to switch me to a medication with fortnightly injections. I'm on an early trial of anti-TNFs (because I don't have 'damage' yet) so if the Enbrel is letting me sleep, I NEED IT, but if it's making me so tired...
I have lost some weight but not drastically and I do have increased stiffness in the morning after a day when I ate too much starch, which is a granola bar.
Is it Enbrel that's making me tired? Could Enbrel not be working but it's the low-starch that's working? Could I have a developing cancer as a side-effect to Enbrel?!! Is the 'fatigue' a temporary passing phenomenon of AS?
Any experience or advice?

I'm no expert on drugs and so on but am an expert on lassitude. If you have AS it is likely that which is causing fatigue. I have had fatigue for 50 years. Work though it. It can be done and after all, you don't have much choice.

Hello from Nottingham

Before starting on my biologic I was like you I had insomnia but when I did fall asleep it was for a long time. Now I'm doing much better I sleep like 10 or 11 to 9 or 10.

I'm sorry your having issues I can't remember if you said you talked to your Dr but I would if you haven't I hope you get some relief or something worked out

Lisa

Agreed with others... fatigue can be part of AS if inflammation is active in my experience.

Another thing that caused me sleepiness, especially in early afternoons were a lot of carbs with lunch. But if you are Low Starch, that probably is not the case.

Best to you,

Tim

Before I started getting some relief (from treatments, now Humira), I was so tired all the time, I thought it was "normal" and didn't realize how fatigued I was. Now, that I'm better, I can feel a flare coming on because the first thing that happens is I get so tired, start sleeping 9-12 hours a day, and still very tired, kind of like when you're coming down with the flu tired. So for me, its definitely the inflammatory arthritis causing the fatigue.

But, its never good to just assume things. Have the doctor make sure the enbrel isn't lowering your white blood cell count too much.

Have the doctor do some other really simple blood work:

things that can cause fatigue and should be checked out:

diabetes (like what Tim describes, but when diabetic, even a little carb makes one sooo tired, but you can tell usually because its more noticeable after meals, if its type II, but if its type I, then fatigue is a common symptom, but you'd be hungry and thirsty and going to the bathroom a lot too, still, a simple fasting blood glucose is a really simple test)

B12 levels

Iron levels

that's not inclusive, but you get the idea. Don't assume the most obvious without also checking the simple things to test, but also don't assume the most drastic like cancer either. Actually, just don't assume. Test what can be tested, but if all those tests come back OK, it probably is the inflammatory arthritis; still amazes me how zonked out it can make me….on days like those I just kind of go through life like a zombie….

Fatigue kicks my booty with this disease. I sleep at least 12 hours a day and hit the wall everyday at about 2:30 and then no inertia to do a darn thing especially if there is a low barometric pressure system lurking which is usually the case living where I do.

You might ask your Dr. if you can take Nuvigil. It works really well. It was originally used for shift workers but is also used off label for other things like fatigue. I took it for several years and then it stopped working. I now take SAM-e over the counter to give me energy to get up.

If anything, I had increased energy on Enbrel. It was the only biologic that worked for me. If there's a chance that it's working for you, then I would not mess with it. I went off it due to illness and it never worked the same after. Are you taking any other medications? I was on a ton of others along with Enbrel. I noticed a huge difference when I went off them as far as the brain fog goes. It might be safer to try adjusting your diet and see what happens. Are you taking vitamins and supplements? I'm pretty sure you are supposed to with the Low Starch Diet though I could be wrong. I'm just researching myself. I am battling extreme fatigue now with NO medication. I do have a 1 year old to chase around and I get up a few times a night so that could be my problem. I previously battled insomnia. If I take a muscle relaxer now, I could sleep for a few days if I was not interrupted. They kick my butt. I can't believe I went to work and everything the next day after taking those stacked on whatever else I was taking. I couldn't do it now.

Thank you all. I thought Enbrel was my miracle and I'm so confused now.

In 2 weeks I see a doctor to review blood test results, to eliminate thyroid, diabetes, vitamins, and lupus! It turns out that Enbrel may cause drug-induced lupus, so I was fishing for information from you guys to guide the doctor(s).

I'm new to the UK's NHS so my General Practitioner is whoever is available at the clinic, which means that in 1.5 years I've seen 8 different GPs and during the 20 minutes a patient has with a GP I spend all the time explaining AS. I see a Rheumy specialist once a year and a physio who reports to the Rheumy twice a year, so many of my 'symptoms' have to be treated by a GP who usually knows nothing about AS.

I'm not hurting now and I don't feel like a flare-up is coming on (cross fingers, knock on wood, spit spit, etc.) and I experienced fever when taking NSAIs, that I stopped a couple weeks after starting Enbrel because they caused swelling in my head and I was suffering from ear aches and labyrinthitis. But now my fevers are worse - over 38 Celsius = 100 F almost all the time, higher in the evenings. And I have no muscles anymore, at least it feels like that. I can't do yoga, I can't walk for 10 min. without having to lean against something to rest for a few moments. But at least I'm sleeping without pain. I couldn't go through the 4-months of insomnia that my last flare-up brought with it...

When I started the low-starch diet I got really bad cramps in my legs so I have a vitamin regime of alternating days of immune boosters, prenatal and multivitamin. (Does anyone have experience with brazil nuts versus selenium pills?)

I just ordered SAM-e on Amazon and will try that. The cafeine and B12 pills I've been taken give me the shakes - I'm not a coffee/tea drinker.

Plan - Prioritize - Pace !

Hum I know what you mean about GPs, I've known a lot more about AS than most of the GPs i've been to (put together :-)...) and yet I'M giving THEM money... Hum, strange...
Anyway, can't you try and get reffered to your rheumy even if you have seen him less than a year ago ? Anti-TNF are serious business and having severe symptoms at the same time as taking them should require seeing a specialist !

My daughter is always fatigued just from the AS. She was on Enbrel for a whopping two weeks, and the "flu like symptoms" they talk about in the pamphlets hit her so hard the rheumy was checking her for drug induced lupus. He said he'd never seen anyone develop it so quickly on Enbrel, but she was pretty much curled up in a ball for three days the day after her injection.

Needless to say, we took her off it. It was a hard decision, because it's well tolerated by so many people, and everything I read about it said some people improve with time. But it was too extreme for her. It took several weeks for her to get totally back to "normal" after that. I recall reading what the different half lives were of the various biologics somewhere, and I think Enbrel was 8 days.

So yes, definitely get the bloodwork done to rule out any nasty side effects. It would be very hard to give up a med that's working for you, but there are others out there if it turns out the Enbrel is causing some issues.