Meltdown pt. 2 | Arthritis Information

 

Well, I am home now from 7 hours of being in the ER. My RD was called and she requested several tests EKG, Ultrasound for blood clots, chest X-ray, blood work of course.  Everything came back with normal results. They only thing I noticed today was a notation that said "There is a mild prominance of central pulminary vasculature without pulmonary edema. No focal infiltrate, pneumothorax, or pleural effusion evident."  Can anyone tell me what the mild prominance of central pulminary vasculature means or where to find info about that.

So ER docs main feeling was the swelling was caused by the Enbrel an to do a  follow up with RD on Mon. and to discontinue the Enbrel because of a possible allergic reaction to it. If that is the case what am I going to to? start all over with another med? I was  hopeful it would work for me.

Thanks everyone for listening and sharing your thoughts and wisdom in the realm of RA.
Gee I don't know what any of that means but how disappointing to have had an allergic reaction. How common is that? I guess you will try Humira?
Best of luck to you. Hope the swelling goes down quickly and you start feeling better.
 Doing a quick Google search  about mild prominance of central pulminary vasculature

indicates a mild heart eanlargement. It isnt all that serious  but go to your dr.Someone here recenty told me there were allergic to Humira.  I think it was Lynn.  Maybe you can ask here what her symptoms were?Yep, it means you will have to try something else. Unfortunately this is the way it works. Chronic illness is not black and white and you just take medicine and get better. You will need to keep trying things and this takes time until you find the best medication for you.

I was dxed 4 years ago and they are still trying to stabilize my RA. This is common.

Thinking you are just going to try one medication and it's just going to make you better is not realistic, I'm afraid.

I said in an earlier post that this disease teaches you patience whether you want it to or not.

I am glad you RD did all those tests and was involved in what went on at the ER. I think they are probably right and this is an allergic reaction to the Enbrel but they will probably find out by taking you off it.

Hang in there. This is not an easy or simple journey. This disease is challenging in every way possible.
Sorry, I didn't mean to sound harsh in my last post. I have just learnt from experience that it is unwise to have great expectations of any of the anti rheumatics because if they don't work the way you think they should or have been told they will, then you will be terribly disappointed.

I try to face each new drug now with a 'light' attitude of 'well, I will give this a try but meanwhile I will get on with what I can do now'.
Hang in there!   Hopefully you will find some meds that will get you at least being able to have a little quality of life. [QUOTE=Cordelia]Sorry, I didn't mean to sound harsh in my last post.
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I didn't take it that way. I am trying to take it one day at a time with RA. Some days are much better than others as I am finding out on the new journey with RA. Tomorrow I should get in to see the RD and hopefully get a more better picture of everything and what the next step will be until then I will try not to worry.
[QUOTE=Nettie]  I find that you have to be on top of your symptoms but learn how to not let the disease have ultimate control.  I know it is really hard.  i will pray for you. [QUOTE=mom2threeinaz] [QUOTE=Cordelia]Sorry, I didn't mean to sound harsh in my last post.
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I didn't take it that way. I am trying to take it one day at a time with RA. Some days are much better than others as I am finding out on the new journey with RA. Tomorrow I should get in to see the RD and hopefully get a more better picture of everything and what the next step will be until then I will try not to worry.
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Good, I didn't think you would take it that way but I wanted to be clear. I never talk about anything that I have not experienced first hand or watched others experience.

The reality is that if this is an Enbrel allergic reaction then yes, you have to come off and try something else. The next one may not work either or the next but the one after that may be the one for you.

That is what it's like.

The first five years of this disease are the toughest. You have to go through the whole drug trials, you face a lot of grief and loss about how this illness is changing your life. You may not be able to work anymore or you may have to change how you work. Family and friends may understand or they may not and be completely unable to cope with what is going on for you. There is so much change and adjustment that has to happen. You can feel like you lose yourself to this crazy thing called RA. That somehow it has moved in and taken control. Mentally and emotionally as well as physically this can be a tough time.

As Nettie says, you need to try and maintain some control over your symptoms, you can do that in several ways. Firstly, be really proactive in your approach to your RA management. If you don't have a PCP and RD who work with you as a team...find ones who will. With this illness the patient needs to be in partnership with their medical team.

I have a GP and RD who consider my opinion about my illness to be even more important than blood work or other factual stuff.

Secondly, when you have a good team, talk to them all the time. I often see my GP once a week or once a fortnight but I may be on the phone to her several other times that week. If anything at all is different, like the swelling you experienced this week, straight on the phone you get to your GP. Drive them nuts, it doesn't matter but be proactive about your RA situation.

I also have direct email contact to my RD. This has also been a godsend.

Thirdly, have a serious look at your health stuff right now and be honest with yourself about where it is at. In doing that then you need to think carefully and realistically about how you can manage it better. This is not easy because it means some things will change.

Do you need to negotiate with your employer and reduce your hours?
Do you need to delegate more chores at home to other family members?

What else do you need to get real about?

Often what happens in the beginning is we are being floored by this illness but we still keep attempting to continue on as we were before we were symptomatic. This is very true of women who are constantly multi tasking whether they should be or not.

Guess what???

This disease means now that you can't 'do it all'.

And you are probably getting overwhelmed because you still think you can and you have not yet adjusted your life circumstances to a realistic place.

You will need to slow down or you will not be able to deal with the challenges this illness will confront you with.

Your family may not be happy about that. Some families are very understanding and others are not, often because they are also frightened about what this disease will bring into their lives. Mum won't be the way she always has. Things will change and that is often terrifying to husbands and children.

Rearrange your life so you can take time to smell the roses and gaze at the sunset. That stuff has a major impact in your ability to manage the challenges that will come your way.

Hi Momto3,

 

I'm so sorry to hear about the reaction to Enbrel.  Hopefully your doctor can give you something else to give you relief.  Good Luck at the appointment and keep us posted.  Hiking_gal

[QUOTE=mom2threeinaz]Cordelia,
Wow thank for sharing you have such a wealth of knowledge into life with RA. I truly appreciate all of the things you have shared.  However, if I ever do need a slap in the face to bring me back to reality feel free to give it to me.
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No problem. I am great at slapping. I am glad some of the information is useful to you, that is always my hope when I share, that something I say will be useful and comforting.
OK everyone here's the scoop.  After Rd looked over ER reports and looked carefully at my legs we decided that we were going to discontinue Enbrel and try Humera. She didn't feel that I had had a allergic reaction because I didn't have any of the other common signs of alergic reaction apart from the edema, however she fears that the swelling is so bad that the blood flow in the veins will be comprimised if we continue with the enbrel and that will bring greater problems. My legs were still so numb all day to the point of being painful. We are going to work at getting rid of the swelling first and then try the humera once it's approved. fingers x'ed that it will be approved and that it won't cause the swelling like the enbrel did.
We also discussed intermitant FMLA and getting started with that.
Well as hard as it is to start again with a new med I am hopeful that this one will work. Thanks all for your advice and concern.
Thanks for letting us know what happened. You just got to do the process. That's the way it is. Hang in there, woman.  good luck w/ the next med, mom2....... Good luck Mom2 hope all works out for the best, keep posting, its nice to hear from new people too.  Regards Janie. janiefx2009-03-03 05:42:10Good luck with the new treatment plan.  Hiking_galHmmm... I never thought about my legs swelling as being the Enbrel I was on at the time.  I am sorry you are having this trouble and I hope you can get approved soon and the Humira works for you.

Take care and legs up!

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