Has anyone with AS or on Humira, Methotrexate had problems with their vision??????

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peggy baggins
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Date Joined Jul 2009
Total Posts : 153
   Posted 8/14/2009 7:19 AM (GMT -7)   
What would I do without this site?  This is the only place that you can ask these kinds of questions. Quick run through, Suffer from AS and have been taken methotrexate and humira since last November. What with everything else that's going on today I had an appointment with an eye specialist as I'm having trouble with my vision, especially the right eye.  Turns out that I have a wrinkled retina in the right eye which is causing my sight problems.  The specialist said it had nothing to do with the meds or AS and just one of those things?  Has anyone else had problems with sight as I'm sure that there are problems that can occur with AS and eyes?  Or could it be all the medications I take for AS, Heart, high Chlor,blood pressure, insulin rest etc?
 
Anyone with any information out there?  At my wits end today with all these medical problems I'm having.  My shoulders are beginning to buckle under the weight of it all.  Not a good day today and told the specialist to just add it to the list......
 
Here's to a better day tomorrow?

golitho
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Date Joined Sep 2008
Total Posts : 1670
   Posted 8/14/2009 9:15 PM (GMT -7)   
Sorry Peggy, can't help. On both mtx and humira and have perfect vision. Though I do get them checked every 6 months because of being on prednisone for so long. I think that causes more harm. But vent away, we all have those days or weeks when the world seems to throw everything at us at once and we buckle under the pressure!
Big cyber hugs and just hang in there. Here's to that brighter day tomorrow, golitho

peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 8/14/2009 10:36 PM (GMT -7)   

Thank you so much for the cyber hugs golitho, much needed. I'm feeling more positive today which is more my usual self. Yesterday was just one of those days!!!  That's why this site is so special you don't feel so alone.  Family and friends are such wonderful supporters but unless your going through it yourself it's difficult for them to fully understand sometimes I think.  My poor husband feels useless, but he so isn't because he allows me to be myself and show the other side of me.... which is hidden from very one else when I put on a big smile and say everything is fine..  Im seeing my specialist on Monday at 8am so will have a long chat with him about the eye sight thing just to make sure.  I'm sure it's just bad luck that this problem has come along at this time.  Off on a long holiday overseas in a week so will rest up then and forget about everything while lying in the hot sunny skies of Spain....

Once again thank you for your support and kind words golitho.

Peggy...


SydneyJo
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Date Joined Mar 2006
Total Posts : 1354
   Posted 8/15/2009 8:16 PM (GMT -7)   
Wow Spain - lucky you :).
I have eye troubles with my AS, but not retina troubles - uveitis and I use a pred based drops for that. Between the disease itself, and the meds we take for it, who really knows which one is causing all the damage. Good luck on Monday and have a wonderful rest in Spain (Im jealous lol)
Jo

peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 8/16/2009 10:39 PM (GMT -7)   

Your right about not knowing what the medication does to us other than make our conditions better. I spoke to my specialist today and he agrees that he is not aware of this problem in AS although won't rule out there being a link. He's made a note of it and was glad I told him. I'm starting Remicade on my return from overseas and will be going into the hospital for those for the morning (over a period of 4 hours) all indications look like this might help the pain in my right foot as this is the only area that is still causing problems. The spine is so much better now thanks to humira and mthx.

The holiday in spain will do me good its been a fair few years since I went last.  It's a shame I can't drink (because of the meds) as the wine is to die for over there and the sangria!  But bring on the sunshine and heat is what I say. Who knows I just might have the odd one here or there, lifes to short not to enjoy it.

Jo I noticed that your Sydneyjo so therefore it wont be long before it gets better and spring will be here, although the weather of late has been brilliant!!


SydneyJo
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Date Joined Mar 2006
Total Posts : 1354
   Posted 8/17/2009 11:51 PM (GMT -7)   
Peggy, yeh Im from Sydney and the weather is already heated up these lasr few days, I actually dread summer because I take Methotrexate and am now so sun sentitve I burn just driving in my car UGH.
Are you from Australia too?
Jo

peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 8/18/2009 4:01 AM (GMT -7)   

Jo,

Yes I'm from Sydney area although along way down south.  You said something interesting about being sensitive from taking Methotrexate!! I was on it last winter and off during the summer months but back on again this winter and told yesterday that I have to stay on it now as well as my new treatment happening in Sept on my return.  Is the sun something I should be extra careful with as I already have a large scar on my back from having something cut out years ago and have to be very careful and cover up during the hottest part of the day!!  Obviously I need to add this to the already growing list of side affects I get - feeling sick, being sick, stomach pains, lose of appetite and hair thinning. Aint life just grand. smilewinkgrin

 

Have a great day.


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 8/18/2009 10:01 PM (GMT -7)   
Peggy,
Yes MTX is a sunsensitive drug, in the sun I wear sunblock, a sombrero and long sleeved shirt - I look like a freak really lol. I had a cancer removed from my chin(last year) and now have a scar from just under my mouth to halfway down my neck, all from a tiny sore that wouldnt heal (not sure if the MTX made this happen, as prior to that there was nothing there).
Also, has any Dr.s mentioned taking folic acid while taking MTX (I take 5mg of folic acid a day) as this is 'supposed' to help with hair loss (in my case I cant tell any different, it wont be long before I need a wig). Oh the joys of this drug :)
Down south is very beautiful - lucky you - Im closer to the Blue Mountains.
Jo

peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 8/19/2009 12:56 AM (GMT -7)   

Jo,

Thanks for that, sorry to hear about the neck op though. I do take folic acid as it happens the day after mthx is taken, not every day. I too use huge amounts of sunscreen, hat and a long sleeved top, such a pretty sight!!  We live on a mountain near Kangaroo Valley which is beautiful, the only problem this week has been bush fires!! 5 going at the moment, two uncontained due to being unable to get to them, my husband is a RFS volunteer and they warn that this summer it's going to be going off very soon.  I hear their bringing the need for permits to the 1st Sept, not sure if its true.  I still wouldn't live anywhere else in the world though.

Have a great day. sad


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 8/19/2009 8:46 PM (GMT -7)   
EEK bushfires already - summer is looking scary this year :(
How did you go with your Dr.s visit Monday - any good results, did he help with your eye problem?
Jo

peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 8/20/2009 1:01 PM (GMT -7)   

Hi I saw him Monday and he was very interested and pleased I mentioned it, there are some eye conditions that occur with AS but he's not know Mucular Puckering to be one of them. This doesn't mean it isn't.  We sat and did the paper work for my next treatment within the hospital for IV Remicade, on listening to him record his letter to the hospital, to be honest I was shocked to hear all the things wrong with me.

 


SydneyJo
Veteran Member


Date Joined Mar 2006
Total Posts : 1354
   Posted 8/20/2009 4:32 PM (GMT -7)   
Do you start the Remicade before your trip to Spain?
I understand what you mean about adding to the list of the things wrong with us.
I started out with Crohn's Disease and then added the AS and Cushings Syndrome to it - hopefully thats the end of the list, but with the meds and the diseases themselves, I highly doubt it.
Jo

peggy baggins
Regular Member


Date Joined Jul 2009
Total Posts : 153
   Posted 9/30/2009 12:08 AM (GMT -7)   

Hi back from overseas trip, which nearly killed me with pain.  I realised that at home I have become used to what i can and can't do and live accordingly.  Going overseas meant that visiting family and friends I wasn't getting the rest I should have had, therefore, swollen joints and extreme pain the whole 4 weeks! Having come off Humira during the holiday in readiness for Remicade (should be having first one next week)I'm in even more pain now and in desperate need of medication in some shape or form.  So to answer the last question no didnt start  before the trip waiting for next week!!

Hope you've been keeping well while I've been gone? lol.

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