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poppyred
New Member


Date Joined Oct 2009
Total Posts : 7
   Posted 10/17/2009 2:10 PM (GMT -7)   
 
 Just joined, hello.
 Have had SS since late twenties (primary) and gradually from mid thirties secondary.Have
 had one jab of Humira and fatigue much worse, my get up and go went along time ago 
 but this is crazy. also OA and god knows what else is lurking you all seem to be burdened
 with many things.
 I am now 61 and spent alot of time at my surgery and only got SS diagnosed at 59 . I even asked 8yrs ago if I had SS Dr said no your mouth would be much worse, Just one Blood test would have done. I have read it is hard to diagnose has everyone else had
this problem? Poppy

poppyred
New Member


Date Joined Oct 2009
Total Posts : 7
   Posted 10/20/2009 1:39 PM (GMT -7)   
Hello can anyone see me?

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 10/20/2009 1:50 PM (GMT -7)   
Sorry, I missed your post somehow. The Sjogren's forum is kinda' new here and I don't think many people are checking in everyday like they do on some of our other forums.

I think their are 2 main ways drs usually dx -- the eye dr by testing how much fluid is in your eye (mine registered at so dry they couldn't peel the test strips out of my eye) -- other drs by doing a skin biopsy from inside the mouth. Even so, the 'cure' was simply OTC eye drops..

SS is usually dx by a dermatologist, an ophthalmologist, or a rheumatologist . If some other kind of dr (GP?) says no, I would be awfully tempted to get a second opinion....and make sure the second opinion is from a dr such as rheumy who deals mostly with auto-immune diseases.

Cheers,
Lynnwood, Lupus & Sjogren's Moderator
Life is far too important to be taken seriously. - Oscar Wilde, 1882


poppyred
New Member


Date Joined Oct 2009
Total Posts : 7
   Posted 10/20/2009 2:13 PM (GMT -7)   
Thanks,
I have been diagnosed by Rheumy sorry i did'nt make it clear.
I am in the UK it seems our or some DR.s dont want to refer you on . I had been so many times over the years,At 28 i first saw my DR for my very sore eyes and he gave me drops.
I might as well have put bleach in so painful. Lots of other visits for paln etc.
Had my second Humira jab this week any idea's on making less painful?

Lynnwood
Forum Moderator


Date Joined May 2005
Total Posts : 7019
   Posted 10/20/2009 2:17 PM (GMT -7)   
No, sorry, I haven't done the Humira thing -- let me see if I can get some other people to help you out.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde


poppyred
New Member


Date Joined Oct 2009
Total Posts : 7
   Posted 10/20/2009 2:19 PM (GMT -7)   
Thank so much.

ivy6
Elite Member


Date Joined Sep 2005
Total Posts : 10404
   Posted 10/20/2009 2:32 PM (GMT -7)   
Hi Poppy. I'm one of the Crohn's mods, and I take Humira.

You might find that the fatigue is temporary and wears off after a few more jabs.

Another thing that might be worth investigating is whether you're having a minor allergic reaction to the medication. In this case, you might benefit from taking a mild antihistamine about half an hour before you inject. Your doctor or nurse will be able to give you more specific advice on this, but you may find that it helps reduce some of the after-effects of injection.

All the best,

Ivy.
Co-Moderator Crohn's Forum.

Medications for Crohn's ~~ Diet and Nutritional Therapy for Crohn's ~~ Dealing with Abscesses and Fistulae ~~


poppyred
New Member


Date Joined Oct 2009
Total Posts : 7
   Posted 10/20/2009 2:52 PM (GMT -7)   
Thanks.
Its the actual jab, it stings so much just those ten seconds its fine after no redness or pain..
I can usually put up with things perhaps its another pain too far lol.

Barbara Lee
Veteran Member


Date Joined Sep 2003
Total Posts : 2889
   Posted 10/20/2009 3:55 PM (GMT -7)   
Hi Poppy:

I was on humira for 1 year to treat my RA. I'm afraid there's no relief on the jab. There's something in the mixture that makes it burn like heck. I gave myself the shots and it was hard to do cause it hurt so bad. I'm sorry to be the bearer of bad news, maybe someone else will have a suggestion for you. I made sure I iced the area where I planned on putting the shot into.

Hope you can get used to the jab. Take care and best of luck to you.

Hugs,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


redrose77
Veteran Member


Date Joined Sep 2005
Total Posts : 2573
   Posted 10/20/2009 4:31 PM (GMT -7)   
I tried some cream with lidocaine in it and even that didn't help with the injections. Sorry, it will just hurt like heck.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sj√∂gren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, cozar
"Those who dream by night in the dusty recesses of their minds wake in the day to find that it was vanity: but the dreamers of the day are dangerous men, for they may act their dreams with open eyes, to make it possible." T. E. Lawrence


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 10/21/2009 4:32 AM (GMT -7)   

I took humira for about 3-4 months for my RA.  Unfortunately, it hadn't kicked in at 3-4 months, and I, too, felt the heavy fatigue.  I also attributed it to the medication (although rheumy may have disagreed).  When I switched to enbrel, I had no fatigue side effects; in fact, I had an energy boost.

No help for the injections, I'm afraid.  Enbrel injections kind of hurt too, and sometimes leave big bruises on my thighs.  I try not to complain too much, though, as I know there are hundreds of people that should be taking a drug like enbrel, but cannot afford to and/or don't have insurance that will cover it.  I simply to have to put up with a little painful stick once a week.  Still, I do dread that weekly injection.

I wish you the best,

El


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Lupus
Current Meds: Enbrel, Methotrexate, nexium, tramadol, nasonex, Nifedipine, Folic Acid, Tylenol PM


poppyred
New Member


Date Joined Oct 2009
Total Posts : 7
   Posted 10/21/2009 4:58 AM (GMT -7)   
Thanks everyone so much I will grin and bare it abit longer.
Take care.
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