Had a high RA factor and because of my lung problems my pulmonologist says I have RA. Waiting on appt for Rheumotologist.
In some ways I am relieved because I will finially get help.
Sometimes the pain in unbearable.
Anyway what do I ask the new Dr? What do I say to get the proper care?
I also have COPD and fibrosis on my lungs as well as a small benign tumor. I quit smoking in August.
I am 44 years old and the Mom of 9 year old twin girls.
I can hardly move my arms today and am so tired of all of this.
Any advice as I get ready for an appt with a Rheumotologist?
I already take Tramadol for pain with my lungs.
Hi Twins and welcome to the forum. I think the most important thing you can do is make sure your RD has copies of all of your previous labs, xrays, and office notes from your internist. This will give him/her a baseline. Just be honest and tell them how you feel. How the pain and inflammation are impacting your life. How it effects child rearing, work, etc. Don't hide anything because you don't want to sound like you're whining. Lay it all out for him/her to see. Others will have some ideas and remember each RD is different and there are even different ways of treating the same disease and it's all based on how you respond to the disease. Take care and keep us updated. LindyAppreciate your advice. What do you mean about whining?
You've got to be kidding me that they would think this?
God.
I already had to get a new Pulmonologist. Glad I did. The other one didn't think to check for RA factor.
Already went part time.
I think attitude has alot to do with this? I have to learn to accept this instead of fighting it right?
Accept it and make the necessary adjustments to my life.
Today the pain is unbearable.
You are going to need a lot of patience. From what I have noticed RD's have a schedule(I think partly because of insurance) and sometimes it takes forever. When you get an appt. If you will have all of the records faxed to the RD, that will save you time and energy...also he may have more tests. Your lungs and COPD is going to be an issue with your treatment of RA. A lot of the meds are very harsh, and cannot be administered if you have even the slightest cold.
Hang in there, and be sure to keep us posted. There is a wealth of knowledge and friendship here.
I didn't realize meds were harsh. That makes no sense as RA can affect the lungs so you would think they would have some that you can take regardless of the lungs.
Anyway appreciate the reply.
One day at a time. One minute at a time.
I feel so old.
The doctors will evaluate whether you can use the new biologics or not. They are better qualified. Just take it easy and try to get some relief from the pain. If tramadol is not enough than try to use something stronger. The pain in and of itself can wear on a persons feeling of well being.
Take care of yourself and try to make your appt. so treatment will not be delayed.
Besides the good advice you've already gotten, I just want to welcome you even though I'm sure you'd rather not be in this particluar "club." But you'll find the members here helpful and very knowledgeable. We really understand how you're feeling and I'm not surprised you're feeling old right now, because you hurt so much. Yes, patience is key but if you're like the vast majority, you will improve and feel better, maybe even like your old self one day. You're heading in the right direction for the help you need. Please let us know how you're doing.|
Hidden in the bowels of this website is a very informative page: |
Twins -
There is acceptance...and there is acceptance. I say fight like hell to get your life back! You've got two very good reasons to fight. :-)
With COPD and fibrosis...you might think about AP (antibiotic protocol) especially if you can't have the biologics. You can run a search here for more info. Minocin/Minocycline is an approved DMARD (Disease Modifying Anti-Rheumatic Drug) by the ACR (American College of Rheumatologists).
Hugs,
Pip
[QUOTE=twinspeak]Appreciate your advice. What do you mean about whining?
You've got to be kidding me that they would think this?
God.
I already had to get a new Pulmonologist. Glad I did. The other one didn't think to check for RA factor.
Already went part time.
I think attitude has alot to do with this? I have to learn to accept this instead of fighting it right?
Accept it and make the necessary adjustments to my life.
Today the pain is unbearable.
Twins, I didn't mean that you would whine, but yes, sometimes RDs think you're whining. Don't let that stop you from letting them know exactly how you feel and how you're responding to the disease. Remember they get paid to listen to you and treat you accordingly. Each person responds and relates to RA differently and sometimes RDs forget that. It's not cookie cutter medicine. Like Pip said, AP therapy may be a better option for you since you have lung involvement. I'd talk to your RD about it. Lindy
[/QUOTE]
Oh no I didn't take it as you thought I might whine. I just can't believe any Dr would think that. Then again I suppose they would.
I am so tired of Dr's.
Could you explain the treatment again?
Low dose antibiotics to manage these diseases.
You might run a Google search on 'COPD' fibrosis and/or mycoplasma. Those are the buggers APer's believe are responsible for these diseases.
Lurk on www.roadback.org - but don't leave here. We're pretty nice.
LOL
Pip
Ah ok. Low dose antibiotics? I won't do it.
It took me a year to be diagnosed with the COPD and fibrosis. I was on antibiotics every month. Still am when I get bronchitis which is every month. So I have had my share of antibiotics.
It sounds to me like this is alot like COPD. No one knows how to treat it exactly.
I will try to be positive. I don't want to be a negative person you know?
I need to manage this pain you know?
Of course you know.
I am so glad I found this website.
What is an Ap'er???I have read that weight loss is a symtom of RA?
Is this true?
I haven't lost weight.
I also took my share of steroids and don't want to go back to that again.
I am beginnign to feel high maintanance here...
When ever I go to see my Dr I have a list of questions. I write everything down so as not to forget anythying. No question is too small when it comes to your health care or too big.You have a right to know everything there is to know about your RA . And on these forums you will learn alot but also do more research on other web sites so you go to the Dr's office a bit informed . When I first had RA there was so much pain I could not believe it . But my Dr got it under control in no time . Good luck to you !!Hi Twins and welcome. Boy you have your work cut out for you with just having twins.
Good luck at your appt when you do see an RA doc. I hope they can get you on the right meds and such right off the bat.
P.S. weight loss? Shoot not here.
I think that the reason no one really knows how to treat RA "exactly" is that people respond to treament in different ways. What works for me might not work for you. I think you've gotten some good advice here about making sure your RD has your current labs and xrays and all that. While you're waiting for you appointment date, research. Write down what you don't understand and be ready to ask when you get there.
I think you kind of have a leg up as far as being diagnosed and beginning treatment because you already have one doctor that's calling it RA. It only took a few months for me to be diagnsed and when I began treatment it worked very well and very quickly. I truely hope it goes the same way for you. Hang in there. I'm glad you found the board
Yes I am going to rwad up a bunch tonight. I wonder how many of us also have fibromylagia too?
For years I attributed my pain to endometriosis. Then I had a full hysterectomy. It came and went.
Then I gained weight. Thought it was that.
Then the lung problems started. Thought is was that.
Now I see what I deal with is not normal. It should not hurt when my kids jump on my lap.
Actually to be honest twins are easy if they are your 1st. You don't know any different. Everyone told me it would get easier though. I disagree. It is harder the older they get.
But I am blessed.
Welcome Twins,
I just wanted to say hi and hope you continue to post. There are lots of good people here and we even manage to have a few laughs now and then. How old are you twins? One of my co-workers has identical trip girls (at least I can't tell them apart).
My only addition is one you may already know. Everything takes forever!
Jay
If they don't let you have other options, antibiotics may be your only choice. It's not just a Zithpak here or there. It's a lifestyle. Please at least lurk at the Roadback.
Here are some Google searches on COPD/fibrosis and mycoplasma.
http://www.drmirkin.com/morehealth/G212.htm
http://err.ersjournals.com/cgi/content/full/14/95/62
http://www.ncbi.nlm.nih.gov/sites/entrez?db=pubmed&uid=1 2376023&cmd=showdetailview&indexed=google
http://www.ingentaconnect.com/content/ben/aiamc/2007/0000000 6/00000004/art00001?crawler=true
The human body is a wondrous thing. It tries to encapsulate these things to stop them from spreading. They've found them in gallstones, in kidney stones, in fibrosis, in tumors.
And seriously, I'm not trying to be pushy. I think this is probably going to be one of your only options.
Pip
I have ILD/pulmonary fibrosis and my only options were dmards and biologics. It's been over 3 years and so far I've shown no signs of increasing lung disease. I'm on MXT and Humira and have no side effects from either. It doesn't mean that I won't develop them but so far so good. If for some reason you can't use AP therapy there are options. It just takes a little more time/effort by you and your doctor to start dmards and bio. There are several of us posting with lung involvement who are taking dmards and bio. I have to run to the doctor with the most minor cold or infection but that's ok. I'm in clinical remission after 10 years of meds failing. There is another person posting, forgot her name but she too has ILD/pulmonary fibrosis and is pondering the start of RA meds. Search this site for ILD and you'll find her postings. Lindy
Hi Twins,
I believe I am the person to whom Lindy is referring. I have RA-ILD, Dx'd 01/07. However, my ILD is specific to RA and not a result of any other pulmonary condition, i.e. COPD, Chronic Bronchitis, etc.).
You state that your doc tells you you have RA based on a high titre RF and your lung fibrosis (?). You mention that your arms ache. I'm curious to know what other symptoms you have that would indicate a Dx of RA or RA-ILD and how long you've had these symptoms.
Everyone here is friendly, supportive and knowledgeable. I hope you continue to post.
K.
Lin -
Cool! I thought she was limited with options.
Pip
Just make sure you have an appointment soon, you do not want to waitFirst and foremost thank you for being here.
I am kinda confused at some of the terminology. Dmards? Biologics?
Anyway I have an appt Feb 6th. On cancellation list if they get one.
This is what bothers me so much. I had to wait a year to finially get diagnosed with the COPD and fibrosis. Not that I am happy about it. But you know what I mean. At least I have a name I can give it.
I have had body aches off and on for over 10 years. I always blamed it on something else.
RA also runs in my family which I just recently found out.
The Pulmonologist does not think the RA is causing the fibrosis. He thinks the RA is preventing me from getting better. He did not come out and say I have RA but said, "Your levels are high and judging by your symptoms you probably have RA so we will send you to a Rheumotologist.
I guess I am assuming here but judging by everything I have read I believe it to be true. I also think I am having a flare up as the pain has come and gone for years. It is pretty intense and the weather changed here from Winter to almost Spring like weather and that madeit far worse.
My legs ache and feel heavy. My elbows hurt and my shoulders. There are times when my girls have jumped on my lap the the pain was/is unbearable.
My COPD is emphysema related as opposed to chronic bronchitis. My ILD is moderate and I also have a small tumor/granuloma/shadow (why do they all all it something different??)
I feel old. Like I am at a coffee klatch discussing my ailments. But I also feel good to be here too because you all have been so helpful.
My girls are identical twins but also mirror image which means the egg split later than normal. Their hair parts are on opposite sides, one is left handed the other right, their teeth came in on opposite sides when they were babies and at times ear infections were on opposite sides. One is good at things dealing with the right side of the brain and vice versa.
Pretty amazing when you think about it.
The Dr. I will be seeing will spend an hour with me. He will be able to access my records with the Pulmonologist via a network the Dr's are on. I will bring my sleep study with me and my reports he can see online.
I am hoping for relief. Thanks for being here.
Thanks Pip for the links.
I pray I won't have to do steroids. I can't afford to gain any weight.
Oh Twin. Stick with Pip. She is THE link to links. And just so ya know, I mean that in a very good way. Her capacity for research is boundless.