SIDE EFFECTS OF RA MEDS

Well, hun, I promise you that RA doesn't care what type of support you have...it still beats our a**es! Like you, I am so uncomfortable with the "mommy doesn't feel good" stuff. I get so tired of being sick and tired. But RA doesn't give a hoot if I'm sick of it. I've been sick, literally, for 10 straight months. Not two days in a row have I felt "unsick." It is taking many ups and downs to come to grips that I have a disease and that it is not letting me live my life the way I did or imagine that I would. Local support would rock, huh?! I sometimes dream of starting something local, but for now I rely on the internet for that kind of support.

 

I do know that my family is learning a lot about life, compassion, frustration, and the good-to-know fact that life doesn't make anyone any promises. My guess about you is that you are like me...never WAS a slacker, but sometimes I feel that is exactly what I am. But what has helped me is this: I observe myself, and I know that when I AM able, I do. Plain and simple. I imagine your family, like mine, knows that as well. I feel trapped in this body most days...wake up with all sorts of 'mind energy' to do this or that or whatever, but the body is boss these days. We would never choose to NOT participate in our family life and responsibilities. And we have not chosen this, hun.

 

As for your surgery...OMG. How frightening for you! Did the liver problems come up all at once? I'm so sorry. Really sorry. And I understand about not wanting to share your fear with your family. But may I suggest that by not sharing it with your hubby, you may be depriving him of learning and richness and the opportunity to GIVE courage to you? Just sayin'...

 

So. Come here, let us listen. When is your surgery??

tess

Hello, I also have RA for 1,5 year now. I'm 42 and I had methotrexate and delagil for a therapy. (sorry if there are any mistakes as English is not my first language). I had problems with both medications but mostly with my eyes, headaches and sickness, so I've stopped using them after 1/2 year. Now, I'm on the homeopathy treatment and I feel much, much better. I know you must have an operation, but, maybe, after the operation, you should check and read a little bit about the alternative ways of therapies.I must admit I was scared of side effects of methotrexate and delagil and that made me try something else. At the beginning it was painful, but now there are only few things I can't do and I'm not getting tired easily. Also, I have heard, but not tried, about the biological medications like Mabthera, Enbel or something similar, that are good therapies. Maybe, you should consult your doctor about it, but first read the side effects!

 

I live alone so I don't feel like anyone's "burden", but still there was noone to help me when I was sick. But thankfully, I have mother and  sister and her family who are the best support ever!

 

I'm not sure I've helped you a lot, but I think any info is good to now!

 

Take care of yourself!

You are definately at the right place for support.   I understand not wanting to let on about your fear, but I would not keep that from your husband.  He needs to know so he can be there for you.  If you keep it from him, he might feel that you aren't trusting him.  I would probably not share it with my kids, but you need your family (hubby, mom, sister etc.)

I sometimes want to just talk to someone about my pain, my fears, hope etc. with this disease and then I find I get sympathy and even fear from others, so I understand not wanting to share too much.

Will you be switching from Meth to something else?

God Bless

I too felt like I was a burden to my wife, she certainly does not act like I am, but I have taken care of her for many years and all of a sudden it seems like she needs to take care of me. We had a long talk about it, got it all out on the table. She needed to know how I felt, scared, alone, a burden. She would have none of it, she wants to help and be my strength. By reading your post, I think your spouse is cut from the same cloth. Talk to him! I will tell you that this site has helped me out immensly, it helps to talk to people that are traveling the same path with you. I am very new to this whole disease, and not having the same issues you are, but you still feel sort of like you fit in here. I am truly sorry about your liver issues and wish you the very best. Please include your husband in your care plan. He needs you as much as you need him.

 

God bless.

Brad

Since there is not an established RA support group where you live, why don't you start one? I'm sure there are others in your community that want a support group too! Please, don't let RA rule your life.

I was "blessed" with RA and Osteoarthritis. Thinking back, I first started noticing the effects of the two forms of arthritis I was "blessed" with at 25. At that time in my life alcohol was more important than my own health and well being. I am now a grateful recovering alcoholic 7-1/2 years now and taking care of my RA and osteoarthritis. I go to an RA specialist who prescribes Diclofenac and Methotrexate injections. I don't know why Doctors prescribe Methotrexate, knowing the effects and that the drug has been on the market since 1955! I, for myself, have been trying to go the natural route. In addition to the 1 Diclofenac pill I take 4 Devils Claw (natural root) and 3 Hyaluronic Acid (supplemental enzyme the body makes, but not enough with osteoarthritis). As well as other vitamins.

Your husband looks and sounds like a very good man-your'e blessed. Talk to him and tell him everything honestly, including your pending liver surgery. Men are fixers! Once he knows everything that is going on he will go to any length to make things right. If the news of the surgery is sprung upon him at the last minute, he may get a resentment towards you and a definite strain will be put on your marriage. He has been a major support for you and I'm sure you are to him as well, so please don't put your marriage in jeopardy. I hope this has helped. Take care, stay strong and believe!!

Yes I know what you mean.  I am single these days and 59 had RA since 30 yrs.

 

Methotrexate - I lost half a lung to it.   It took away my immune system completely after 8 yrs.  and this let in a fungus (Aspergillus) which ate my lung.

 

Your op will go OK you will survive and survive well.

 

Just don't use potting mix without a mask on face if you are in garden after gall bladder out.

 

Make sure your levels of VD are good.  I felt much better when my levels of VD were up.   I am going to try  Progesic Forte the practicioners one which has 12,000 of the tumeric in it.

 

I have written to our Health Miister here in Australia asking if a trial can be done for Naltrexone in low doses.  Not an immuno suppressant and moderates the RA rather than supressing it.   www.ldn.org  and www.mercola.com    talk about it.

 

I thought I may also try Devils Claw herb too.

 

I could never go back to Methotrexate nor use the Enbrel Remicade etc. as they too are immuno suppressants.

 

Keep us up to date with how you go.

 

Heather

I am dealing better now with my RA, now that i have found the "yellow rasin and Gin" recipe....i have been eatting 10 a day, and now i am not wearing my copper braclet any more....it is really helping....you soak a box of yellow rasins in Gin and leave them covered with cheesecloth for a week to two weeks...then just eat ten a day...it does really help!!!!

I am dealing better now with my RA, now that i have found the "yellow rasin and Gin" recipe....i have been eatting 10 a day, and now i am not wearing my copper braclet any more....it is really helping....you soak a box of yellow rasins in Gin and leave them covered with cheesecloth for a week to two weeks...then just eat ten a day...it does really help!!!!

Long-term used methotrexate can cause damaged liver,stomach bleeding...You had better consult your Doctor or if there are none where you live ,instead of methotrexate you should taken DMARDs,getting regular exercise,which enhance the outcome of RA treatment Please remember that when you get methotrexate you must take folic acid simultaneously. Good luck to you.I want to share your boreboms.Don't hesitate,send me more please.

Dear J Gray

I was diagnosed with RA in 2000.  The pain was unbelievable the doctor's did an x-ray because they thought I had broke my right hand, and the results were RA. No one in my family had it. It was so unbelievably painful my thumb was locked in a backward position I was scheduled for surgery and at the same time my Dr. put me on ARAVA I was on it for exactly 15 weeks the day before my surgery I was finally able to move my thumb it was a miracle.  I lived with RA remission for 8 years and now I am having an unbelievable flare up it was constant pain, I felt like I was 80 when I would wake up in the morning, barely able to walk, I had to balance both hands to pour water in my coffee pot and the pain.........wow!  I started Orencia infusion treatments in November once again hoping for a miracle.......well so far the Orencia has stopped the pain... the stiffness is still there, last week my Dr. decided to put me back on ARAVA along with the Orencia so we will see how it goes.  But the most important thing for you is to remain positive through all your pain you have to be positive. Go to the video store and rent "The Secret", it has helped me more than any medicine ever has.

Email me if you like dover217@bex.net, we can be positive supporters to each other!

Lynn

I have been living with RA for 6 years.I am 44 yrs old married with three children my youngest is 6 and half years old.RA run in my family my mother had it my aunt has it an I have a couple of cousin that has it too.I just had knee surgery and I just can't get it back to where I can just deal with my RA.So I understand first hand how you get tried of saying I don't feel good today.I like to talk to RA people so I know I'm not just going thorough it alone.So hang in there,there are always somebody listen. My name is Marvette and I have RA

Hello

I  have been taking methotrexate since May 08'.

I am very scared to take it...

 

I think I will be calling my Dr. 

 

I hope you are doing ok , Takecare...

 

J Gray,

 

Hi, I'm so sorry to hear of your difficulties.  Sounds like some things have been simmering for you (trying to figure out how to be the best mom that you can while dealing with a chronic illness) and now an unexpected surgery from an unexpected complication.  That's a lot to suddenly deal with.

 

Do you have friends, neighbors, extended family, or a church family that can pitch in and help during your time of crisis?  While many people have a hard time understanding the challenges of RA, many more have undergone surgeries and understand that extra help is needed both before, during, and after.  Especially with young children who need daily care and supervision.  Check with the hospital where your surgery is scheduled, and find out if they have support systems to help patients prepare and plan for upcoming hospitalizations and at home discharge planning and help.

 

Most people are glad to help if we let them know of our needs.  Tell people specifically what you will need:  help with meals, help with child care, a hand to hold, transportation.  I know its hard to ask, but its really true that we are strongest together and that many can do what is too much for one. 

 

Also, it sometimes helps to ask ourselves when we get all tied up in knots, what am I feeling here?  Scared?  Mad?  Overwhelmed?  And then address the specific feeling.  Afraid of the upcoming surgery?  Then research and get info so will will feel prepared and more in control.  Angry?  RA Central is the place to vent!  Overwhelmed?  Reach out to others for support.  In pain?  Tell your doctor and get the pain under control.  Break it all down into little manageable pieces.

 

Hope this helps.  I know that a post can't solve your problems and make them all go away, but I hope that this helps give you some useful ideas.  And please know that I am sending healing and hopeful thoughts your way.

 

Josephine