Really need help here-please give me your opinions. I am desperate!

As some of you who know me well already know, I was diagnosed about 10 years ago with rheumatoid arthritis, which unlike other forms can at its worst debilitate a sufferer of the disease. It is an autoimmune disease that causes my immune system to mistake my joints for invaders and attack them (this now includes my inner eyes, hence my eye issues this summer). I take an injection (Enbrel), but I am still having flare ups (one major one that is still kinda pending at press time). My hands swell to the point that I can't open things, squeeze bottles, turn knobs, etc. I have been having back spasms, and the doctor said since it is not running down my leg (which would be sciatica), they cannot say it is unrelated, and if anything, they are inclined to say that this is connected (RA patients usually get a bunch of lovely related conditions). I also have fibromyalgia and I am researching another drug Lyrica.

So my quandry. Right now, DH and I have no desire for children. Probably at least not for the next two and a half years at least. But I am a realist and things change. The doctor wants me to seriously consider adding to my injection a drug called methotrexate. It is very commonly used with the injections to help stabilize patients and keep the RA in remission. However, you CANNOT get preggo on it. It is in essence, low dose chemotherapy. I was told that it is recommended that if I were to go on it, I would have to stop it about 9 months before TTC. If I were to get preggo during, there is no way that the baby would be healthy (Major birth defects so bad that they recommend aborting a child).

We are seriously talking about our options right now and I am trying to be realistic. I am miserable and I know I need something to get better. I am so afraid of what this disease can do (it runs on my dad's side and my cousin has it), but I don't want to have the situation where I am on this and find myself accidentally pregnant (I am on Nuvaring and I am so careful with anything I take). We wouldn't consider TTC until late 09 at the earliest. Most likely, we are talking 2010 or '11.

I need opinions. DH is not thrilled with this stuff, but I heard that people do well with the combo. My bloodwork has not been good the last few times and we might switch to Humira. But, would you take this chance? They said if I take it and get off of it about 9 months prior to TTC, I should be fine.

I am so confused. Any guidance would be appreciated.

My opinion is if you are going to wait to begin TTC then why not do this. If it will help you in your regular daily life then go for it. CHildren will come in time.

Have you heard of Remicade

They use that for RA & Crohn's Disease, which I have.

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Posted by ruzi777

Have you heard of Remicade

They use that for RA & Crohn's Disease, which I have.

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We were discussing Remicade. Do you find it helps? My only problem are my veins, which are tiny. They said it might be difficult to give me an IV. They were talking about Humira instead, which is every other week. I am just not feeling that it is doing what it should.

Not sure how the dosages go for RA
but I have pretty su cky veins too, & I was ok.
Or they could out in a Mediport in your chest, if your veins are that bad, & you need frequent infusions.

However, I am not able to receive the infusions. MY MD wants to keep that until I despartely need it. It will keep me out of having further surgeries. I already had 1.

But it is a Wonder Drug.
My good friend at work recieves it

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Posted by ruzi777

Not sure how the dosages go for RA
but I have pretty su cky veins too, & I was ok.
Or they could out in a Mediport in your chest, if your veins are that bad, & you need frequent infusions.

However, I am not able to receive the infusions. MY MD wants to keep that until I despartely need it. It will keep me out of having further surgeries. I already had 1.

But it is a Wonder Drug.
My good friend at work recieves it

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thanks Geraldine I will definitely talk to them again after we get my bloodwork back because they are looking to see if i also have some sort of rheumatic condition in my back.

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Posted by Mich0621

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Posted by ruzi777

Not sure how the dosages go for RA
but I have pretty su cky veins too, & I was ok.
Or they could out in a Mediport in your chest, if your veins are that bad, & you need frequent infusions.

However, I am not able to receive the infusions. MY MD wants to keep that until I despartely need it. It will keep me out of having further surgeries. I already had 1.

But it is a Wonder Drug.
My good friend at work recieves it

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thanks Geraldine I will definitely talk to them again after we get my bloodwork back because they are looking to see if i also have some sort of rheumatic condition in my back.

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Please keep me updated
You will be in my prayers.

if you are planning on possibly TTCing in late 2009 that i would definately try it ~ if it will make you comfortable now why suffer for the next year make your self as comfortable as possible! good luck!

If this medication will make you feel better, I would definitely try it. There's always a small chance that you decide you don't like it anyway and decide to get off it - I say nor harm no foul in trying it out.

My only 'concern' is - what if it's a wonder drug and exactly what you need. Sounds great, but then you have to be off it for 9 months prior to TTC then all 9 months+ that you are pregnant, etc. Would your condition get worse during this time? I can see why it's such a hard decision for you - it's almost a double edged sword. But to be honest, you guys are not planning on kids for at least 2 years, that's 2 years that you could have a potential ease of your pain or discomfort - I would take the new drug if that's what's recommended.

aww Michelle I feel so bad. We live with my MIL and she suffers so bad the same as you and I give her, her shots same as you! (she can't do it herself)

I see how bad she is, and I would never consider feeling that uncomfortable for a year or 2 just because of the pregancy thing. At least there are no other HUGE risks, if that's the worst it is, then I say go for it. You need relief. You can't suffer that long. ANd if something God Forbid was to happen then you handle it then, don't suffer. Do it! At least you can try something else, MIL sometimes has to go off the shots cause she also has lupis and she gets sick very easy and that drug tends to help that, but they don't recommend anything else for her. GL! I hope you feel better soon!

Wow michelle, what a tough dilemma. First hugs for you
I agree with the other ladies, I think it makes sense (since the TTC phase is a ways off) to TRY and see if this med works for you? Yesi is right though, find out what the possibilities are while you're off the meds pre-TTC, during pregnancy AND afterwards if breastfeeding is in the plan...

I wonder if you've posted on LIF or the TTC board, there maybe another mommy/mommy to be on there whose got some experience you can benefit from?

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Posted by ruzi777

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Posted by Mich0621

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Posted by ruzi777

Not sure how the dosages go for RA
but I have pretty su cky veins too, & I was ok.
Or they could out in a Mediport in your chest, if your veins are that bad, & you need frequent infusions.

However, I am not able to receive the infusions. MY MD wants to keep that until I despartely need it. It will keep me out of having further surgeries. I already had 1.

But it is a Wonder Drug.
My good friend at work recieves it

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thanks Geraldine I will definitely talk to them again after we get my bloodwork back because they are looking to see if i also have some sort of rheumatic condition in my back.

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Please keep me updated
You will be in my prayers.

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Thank you so much!!! I left a message with my GYN to get his opinion. For now, we might try Humira. I will keep you and everyone else updated!

I just wanted to thank everyone for your concern and advice and prayers.

I am going for more bloodwork on Monday. On Wednesday, I will talk to my OB/GYN about his opinion (I also want to know if it would have fertility effects) and my rheumatologist to go over my bloodwork. We might try another biologic (instead of enbrel, humira)-if that does not work, I think methotrexate, if I get thumbs up, is what I will try.

I will keep everyone posted. I am fearful about my eyes (my pressure is up, but the condition is chronic) and my back, which could be related.

But, I did hear that RA and its lovely effects go into remission during pregnancy!!! Post pregnancy, we will worry about that then...hey, maybe they will come closer to a cure! I decided that next year I want to definitely become more active with the RA groups and foundations

Love you all....Michelle

I would try it and be extra carful that you do not get pregnant. Maybe use condoms in addition to the BC you are already taking. This medication sounds very scary, but if you are absolutely miserable, i would try it. I would also give your body more time thank they suggest to get ride of the meds if you do plan to TTC. Is there no other medication that you could try first before going on this one? I wish you luck and keep us posted, Michelle.

Michelle first I hope you feel better soon

Second, talk to your OB and see what they say, go get relief now while you can. You have a pan and stick to it. I hope the meds work wonders for you

i am so sorry to hear about everything you are going through!

unfortunately i am learning what its like to live with pain, and i wouldn't wish it on anyone.

i agree with the other ladies, if ttc is not in your plans for a while, then i would try anything that could help me live a more normal life. and thats great news that the ra goes into a remission of sorts during pregnancy ... at least you would be able to enjoy that experience w/o that awful pain!

in my search for answers to my own situation i came across this website that has a chat board with lots of information. i haven't posted on it yet, just lurking for now
http://www.healthboards.com/

if you need to talk, you know where to find me

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Posted by PreshusSmurf

i am so sorry to hear about everything you are going through!

unfortunately i am learning what its like to live with pain, and i wouldn't wish it on anyone.

i agree with the other ladies, if ttc is not in your plans for a while, then i would try anything that could help me live a more normal life. and thats great news that the ra goes into a remission of sorts during pregnancy ... at least you would be able to enjoy that experience w/o that awful pain!

in my search for answers to my own situation i came across this website that has a chat board with lots of information. i haven't posted on it yet, just lurking for now
http://www.healthboards.com/

if you need to talk, you know where to find me

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Aww, Jess...we can start comiserating like two old ladies. I have been dealing with chronic pain for awhile and I am so sorry you have to as well. We should definitely talk about it. I will keep you posted and get you a name for neurology. Did you also try pain management? FM me and we will chat