Stressed and having a bad flare

By luvsummer Monday, May 18, 2009

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Hello everyone,

I'm 41 and was diagnosed in my late 20's with RA. I've been on prednisone and its starting to affect my eyes. The Dr. I was seeing wants me to apply for Enbrel or Humria, but I just couldn't do it they both affect your eyes as well. The good news is I will have insurance again June 1st so I'm going to see a different Dr, I was frustrated with the one I was seeing. My son is 16 and was diagnosed with Crohn's at 13 which is also an auto-immune disease. He is having a really bad flare up right now as well. I think from all the stress the last few weeks of worrying about him has caused mine to flare up. My wrists and fingers are huge with knots on my wrists. I've never had knots and my elbows are huge and my knees hurt so bad I can hardly walk.

I've been on other drugs not just the prednisone, celebrex, methotrexate, but in the past few years just the prednisone, and now they are treating my son with it. I can't wait to see the new dr. to see what suggestions she has for a new med.

Comments (5) | Add comment

Susan Coughlin

5/19/09 7:05am

Hi, I have R/A dignosed in 1999 I take all the meds that you do plus the Humria shots none of theses meds. effect my eyes although I do not like the story I just read on Humria I 'll print and ask my doc. I've been on prednisone for a very log time but, a very low dose which seems to do quite well. I still have bad flare ups but nothing to what it's like not taking theses meds. I stopped them to see if they really worked and trust me they do if you think you feel bad now try going without them thats pain. The real trick to R/A is a damn good DOCOTOR, and you'll know when you find one they will watch you close and they will do blood work every 3 months and check everything they can check at each return and they are there anytime you call or need them ,That IS YOU MAIN SUCCESS TO R/A.(A DOCTOR WHO CARES).Have your eyes checked every six months and your blood work every 3 months,and if you R/A doc. does not do this for you then find one who knows what they are doing it is very inportant to have this done. Good luck and I wish you and your son the best.

luvsummer

5/19/09 7:49pm

If you don't mind me asking, howlong have you been taking the humria shots? I'm so worried about my son right now, they are doing a colonoscopy on Friday. We wil know then at least whats going on in that area. I'm afraid to say just how long its been that I've had my blood drawn. Its been years but I had no insurance so he just didn't treat me how he should have.I have skipped my prednisone its not good, I agree. Thats why I want off the prednisone.

Angela53510

5/21/09 12:26pm

Ask for Kineret. It has no side effects and clears through the kidneys, and won't even affect your liver esp. if you are on Methx. I have been on it for 4 years, and it is wonderful. It is a hassle, because it is a daily injection, and I had some site injection reactions (bad itching) the first year, which is normal, but literally I have had no problems, and it doesn't affect the eyes either.

It is not prescribed very often, because it was classed as not effective. However, this is because they gave it mostly to med resistant people, who had tried everything else, and nothing worked for them. (So why they thought this didn't work, I don't know!)

The only drawback for me, is travelling. If I go anywhere, I have to pack a small portable fridge, with all my needles. I have a DC adaptor, so it isn't bad with a car, but it is quite a pain on a plane. (punny!) None-the-less, this year I have travelled 4 times across North America to see my kids and holiday, and just carried the thing with me.

The other draw back is expense. I have two really good drug plans, and although it is $1500 a month, I only pay $8.00 between the two plans. So that works well for me. It is worth it not to be in pain, and the deformities getting worse.

Talk to your rheumatologist about this - be prepared for pain at first from injections - I don't even feel it any more - The pain of the injection is so much less than any flare!

Angie

Lene Andersen, Health Guide

5/26/09 11:09am

A new doctor may also suggest one of the Biologics. Although they do have side effects, not all people get all the side effects, so it's possible that they wouldn't affect your eyes. Biologics can give you your life back I started taking Enbrel four years ago (switched to Humira two years ago) and they have been a godsend for me. I switched medications due to Enbrel aggravating my fibromyalgia, but other than that, I've had manageable side effects. We all do the cost-benefit analysis when thinking about taking a new drug, but I would encourage you to ask more questions of your doctor about these drugs and their side effects. You may also wish to have a conversation with an ophthalmologist, to get the opinion of the person who is in charge of taking care of your eyes. It's possible that with close monitoring, you would be able to safely take the drugs.

Melinda Winner

6/16/09 4:34pm

Hi, I also got dx in my 20's with RA. I was also on prednisone for years, it made me become a diabetic, When I stopped, it went away, I am on Embrel now and it has caused dry eye very badly. However, it has been working for me. I hope you find something you can take to get relief. I did remicade for about two years also it worked very well at first. Did you gain weight or bloat up on the prednisone ? That was another problem I had with it as well as rashes. I will pray for you. I hope things get better.

Stressed and having a bad flare

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