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fatigue #281973
11/07/18 03:53 AM
11/07/18 03:53 AM
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sdot Offline OP
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The fatigue is killing me and it's just hard to get anything done. I need a solution, but I really dont know if there are any real solutions. I was thinking cocaine and energy drinks, but I am sure there may be a better idea out there.

Re: fatigue [Re: sdot] #281974
11/07/18 06:20 AM
11/07/18 06:20 AM
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Fennel&celery cream on chicken broth


diagnosed with AS April 2018, starting with cervical pain/stiffness; Aug 2018 enthesitis/bursitis left Achilles
diagnosed with iridociclitis Nov 2017 (4 flares so far) - bilteral, DES
Eosinophilic Gastritis
No signs of inflammations on MRI`s for axial. Visible inflammation/erosion of Achilles/calcaneus + bursitis
Naproxen (occasionally), Sulfasalazine 3000 mg per day
Supplements: vit A&D, reishi mushrooms, fish oil/probiotic/ Mediterranean NSD
plenty of swimming
Re: fatigue [Re: sdot] #281990
11/07/18 06:56 PM
11/07/18 06:56 PM
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When I took tramadol I noticed I couldn’t sleep on it. Didn’t help my pain much but did help with fatigue, so this is my current routine - I now set my alarm an hour early and take 2 tramadol and some vitamins (b 12, folate, d). Then I go back to bed and sleep an hour. Then it is much easier to wake up and get going. I have been doing this for a few months. I checked with my dr last month as I generally take half a norco at bedtime and he said it was fine. I crash around 3pm and haven’t figured that out yet since I don’t want to risk tramadol messing with my sleep. I am experimenting with a noon dose but haven’t figured it out. I can walk around a lot at work to stay awake but the commute home is rough. Antidepressants are also very helpful with fatigue but have more side effects. I have taken lexapro and cymbalta in the past for fatigue and they worked great. I don’t want to go there right now since this is my first year being diagnosed and am on Humira and still taking some nsaids. If you haven’t tried them before maybe give it a shot. Either one with an added Wellbutrin is a huge help.

Re: fatigue [Re: sdot] #281995
11/07/18 10:32 PM
11/07/18 10:32 PM
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SouthernMoss Online
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Sdot, what meds are you currently taking?


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: fatigue [Re: SouthernMoss] #281996
11/07/18 11:50 PM
11/07/18 11:50 PM
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Originally Posted by SouthernMoss
Sdot, what meds are you currently taking?


I am on Simponi, and MTX. I have been taking Celebrex lately as well which tosses my stomach for a loop. The day after my MTX I take folate, and every day I take vitamin d,c ,b12 and a multivitamin.

I usually wake up at about 4am every morning but try to stay in bed until about 6:30. I need a coffee when I wake up and one a few hours later. Usually by noon I am pretty beat but will keep going until 3 or so. By 5 I am ready for bed.

Before AS, I would be up at 6 and would easily work and do stuff till 11. I used to be happy and proud to be doing a number of projects all day and night long. Now, if I had the choice I wouldn't even get out of bed.

I am sure everyone can relate to wanting to popping some pills and getting on to their old lives.

Re: fatigue [Re: sdot] #281998
11/08/18 02:07 AM
11/08/18 02:07 AM
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Iowa City, IA USA
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Originally Posted by sdot
I usually wake up at about 4am every morning but try to stay in bed until about 6:30. I need a coffee when I wake up and one a few hours later. Usually by noon I am pretty beat but will keep going until 3 or so. By 5 I am ready for bed.


You just described my routine exactly except I tend to fall asleep on the sofa at 7 pm until I actually go to bed at 9 pm. I try to get at least 30 minutes on an exercise bike during the day but that makes me so tired I need to nap for an hour afterwards. I used to enjoy exercise and my wife used to say I was too fervent. Now, when we are walking at a slow pace I have trouble keeping up with her. It's very sad but fortunately, I'm retired.



Re: fatigue [Re: sdot] #282001
11/08/18 02:59 AM
11/08/18 02:59 AM
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Sdot, forgive me for losing track, but weren't you considering a change in biologics at one point?

Do you think the MTX is contributing to the fatigue? My rheumy recommended I take a Mucinex DM along with my MTX and another one 12 hours later. The dextromethorphan in the Mucinex DM helps with fatigue or "the blahs" that can come from MTX.


Ginny - 57 year old female
Dx with USpA in March 2013; changed to AS in July 2015
Iritis and Scleritis
unicompartmental knee replacements: right-June 2014, left-Aug 2018
MTX, Humira, Cyclobenzaprine, plus Celebrex as needed
Supplements: Folic Acid, Vitamin A, Vitamin D, Calcium, Fish Oil, Culturelle probiotic, Melatonin (as needed)
Re: fatigue [Re: SouthernMoss] #282005
11/08/18 12:05 PM
11/08/18 12:05 PM
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Originally Posted by SouthernMoss
Sdot, forgive me for losing track, but weren't you considering a change in biologics at one point?

Do you think the MTX is contributing to the fatigue? My rheumy recommended I take a Mucinex DM along with my MTX and another one 12 hours later. The dextromethorphan in the Mucinex DM helps with fatigue or "the blahs" that can come from MTX.


I was considering a new biologics, but it will be put of pocket if I do, so that is oit of the question at this moment. I was feeling like crap before the MTX so I find nothing really helps and if I did find something it would have to be super string. In the winter it is worse. The darkness and cold really hits me hard as well.

Re: fatigue [Re: sdot] #282010
11/08/18 10:01 PM
11/08/18 10:01 PM
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Why would your new biologic be out of pocket? You can't get it covered by government healthcare? It seems like you have active inflammation. When I had a lot of inflammation I was like you, beat up by 1pm and at bed very early. Turned out I had inflammatory anemia which caused the fatigue. When I started Enbrel everything went back to normal and my energy spiked.

I highly suggest you push your rheumy to put you on Enbrel or Humira. You shouldn't have to suffer like you do.

You can also apply for a patient program like this one if you don't have the funds: https://www.amgen.ca/products/patient-assistance/

They provide free Enbrel for those that can't afford it. The program is called Enliven.

Take care buddy

Re: fatigue [Re: seymour] #282013
11/09/18 05:08 AM
11/09/18 05:08 AM
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Originally Posted by seymour
Why would your new biologic be out of pocket? You can't get it covered by government healthcare? It seems like you have active inflammation. When I had a lot of inflammation I was like you, beat up by 1pm and at bed very early. Turned out I had inflammatory anemia which caused the fatigue. When I started Enbrel everything went back to normal and my energy spiked.

I highly suggest you push your rheumy to put you on Enbrel or Humira. You shouldn't have to suffer like you do.

You can also apply for a patient program like this one if you don't have the funds: https://www.amgen.ca/products/patient-assistance/

They provide free Enbrel for those that can't afford it. The program is called Enliven.

Take care buddy



In Ontario it is very hard to get covered. I have spoken to my rheumatologist about this previously. Here they will try to avoid it by making you take nsaids and then after failing 3 of them will consider the cheapest biologic if you prove that you have damage with an xray, and you will still need to cover 20% apparently you have to jump through hoops because they dont want to cover you and will fight not to have to.

The only reason I am in bad shape now is because I really have no cash to stay on top of meds, just a series of bad luck.

I will check out that link though and see what they say. My shoulder has been messed up since august and everything else is slowly going. Seems that I wake up every morning and regret it. Just holding on until I finally get around to building a cyborg body or something.

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