Feeling somewhat down tonight

[Wiped Out]

After work today I had a follow up appointment. with my doctor. The blood tests he ran at the end of December came back. They found some Rheumatoid Arthritis antibodies (which I wasn't surprised by). They also found some antibodies that might indicate Lupus. Turns out I also might have Celiac's.

None of this is horrible in and of itself. If I do have Celiac's I know I won't have an easy time with giving up certain foods. Plus, I have no symptoms so it would be hard for me to follow through. Apparently you can have Celiac's with no symptoms but should still follow the diet.

My dr. did say if I do have the Rheumatoid Arthritis they sometimes use Prednisone (sp). If that happens it will really mess with my medications for my Addison's Disease. I see the RA dr. on Friday.

On top of that I'm in a ton of pain tonight with my wrist, fingers and my shoulder (I think the shoulder is due to my morning workout). In addition, my knees and ankles are hurting as well.

O.k. enough whining for tonight. In the end I'm sure things will be fine but, of course, I find myself looking at worse case scenarios which is really not the way to go about things!

 

[TeDo]

Sharon, you have a lot going on in that pretty little mind of yours. More now than before. You are allowed to whine!!! I can only imagine what these things may bring, IF you really do have them. But, I also know that you will do what you have to do to stay healthy.

Sending strength and supportive {{{HUGS}}} your way. Pretzeling that it is only planning for the worst and hoping for the best.....and that it turns out to be the "best" .....and that you worried for nothing.

 

[svengandhi]

I've had RA for over 30 years and have really only been in active disease for @ 8 years on and off, not in a row. Most of the time I am on nothing.

Good luck.

 

[flutterby]

Sharon, steroids are used for immediate reduction in inflammation. I know there are a lot of new drugs out there for RA - the biologics, other immune suppressants, etc. They also use Plaquenil - or used to, anyway. It's an anti-malarial drug that is FDA approved for lupus and RA. It works as a long term anti-inflammatory. In a typical patient they would start with steroids and Plaquenil, taper the steroids, then use Plaquenil as a maintenance medication.

There is a new Lupus medication, but I don't know anything about it. (FDA Approves Benlysta, the First New Drug in 50 Years to Treat Lupus | Healthland | TIME.com )You don't have to do steroids. Especially if it's going to mess with your Addison's. My bff has lupus and she refuses to do anymore steroids. I refuse steroids until I am desperate, and then do an 18 day taper (start at 60mg for 3 days, then 50mg for 3 days, etc). However, I don't have Addison's to deal with. Plaquenil and the other drugs for RA will work without steroids. Steroids just give more immediate relief, but they aren't necessary and are quite dangerous for some people. They often prescribe naproxen (NSAID), but it does nothing for me. I like Celebrex much better.

I'm sorry to hear this news. I wish you relief soon.

 

[flutterby]

Also, you should know that both RA and Lupus significantly increase your risk of coronary artery disease, with early onset and atypical symptoms. A work-up by a cardiologist would probably be a good idea.

 

[buddy]

OH sorry, I know that icky feeling when the tests come back and on the one hand you want an explanation but on the other you really dont want it to be anything....then you hear yup, it is something. I am hoping it is all on the milder end of thing for you and you do not need to do the most intrusive medications first. Sounds crazy to say milder end of things with such serious issues, but I too have had years of relatively mild symptoms of a potentially serious disease, so hang in there and find out more specifics. For now worry will only hurt your system more so step by step here.... and of course hold on to our arms around you......

 

[KTMom91]

Sending supportive hugs your way.

 

[tiredmommy]

{{{Hugs}}}

 

[hearts and roses]

I'm sorry, Sharon. That is a lot to digest all in one day. I hope you're able to work with your dr to find a solution that fits into your lifestyle.

FYI on the celiac test: you need to have a sampling of the villi in your intestines for a definitive diagnosis, as the blood test is usually not enough to go on. Celiac runs in my family. Once you get the hang of which foods to enjoy and which to avoid, its not too tough. Plus, with so many people switching to gluten free diets, there are a lot more options out there than there used to be.

Sending hugs and support. Please excuse typos.

 

[Hound dog]

(((hugs)))

 

[DammitJanet]

Oh Sharon I am so sorry about your news. I do know what all the chronic pain is about. One thing that might help your hands, wrists, fingers, knees and ankles almost immediately is volteran gel. Now it wont be a miracle cure and make you superwoman but it does give quite a bit of daily help. You can rub it on 3 times a day like a Bengay type product but without all the smell. I love the stuff and shhhh...I rub it on Tony's bad back and it helps him too. Your doctor should be able to give you a few sample tubes to see if it helps.

With Addisons, I wouldnt go for the prednisone at all. You can get gold shots or the dmards. I cant take steroids either. The only time I take a steroid is in extra small doses and they are injected into my joints. I have to even watch those and do two at a time and separate the other two by two weeks or they send me somewhat hypomanic. However with what I am on right now, I could probably handle it...lol. If you have lupus and RA, I would really have a second opinion because those can show some of the same markers. But if you do, some of the treatments are the same. The newer treatments for RA are done only every 6 months now. RA can actually be treated more effectively than OA.

 

[InsaneCdn]

RA can actually be treated more effectively than OA.

... as long as you look after yourself.
Not that you don't... but... be especially aware of:
- sleep, especially quality;
- impact exercise (running is worse than walking or cycling, for example)

 

[witzend]

Sharon, I'm sorry to hear that you are having all of these health problems coming down on you at once. The stress of each of these only adds to the other. Lately I have been having a lot of joint pain, and I actually went out and bought a tube of Ben-Gay. I feel so old! But darn it if it didn't really help! And it comes in a "disappearing scent" now, so at least I don't have to go around smelling like my grandma!

I remember my mom struggling with a possible Lupus diagnosis. As I recall it was one of those things where they have to find a certain number of things wrong rather than just one thing. I don't know that she ever officially got the diagnosis, I just remember it seeming to take forever. I hope that they will be able to help you soon, and to get a proper diagnosis.

 

[gcvmom]

Sharon, what FB said about pred is true. It's not usually a long-term medication, just something that's used initially to knock down a major inflammatory flare-up, with the goal of weaning you off and onto a more long-term medication. There are LOTS of different options available today for people with autoimmune disorders. When difficult child 1 was diagnosis'd with Crohn's, he took pred for about 8 weeks to get things under control (he was really sick) but then we got him on an immune suppressant (actually more of an immuno-modulator because he doesn't get any more colds or illnesses than other kids his age now) for maintenance. He's been in remission for over 5 years now on this medication -- so it's possible to live a normal life on these medications. It's key to find a doctor who is well-versed in these types of disorders and who stays current on the latest treatments. For those who don't find success with the immune suppressing medications, biologics are also another option.

The best news is that the medical and scientific communities have learned in recent years to share research data and as a result they are finding genetic similarities in these disorders and they are also making much faster progress in developing treatments and hopefully finding a cure one day.

I hope the diagnosis brings you closer to symptom relief and feeling better soon!

 

[southermama3]

You and I are medical twins. I've had RA since 17. Steroids has been my life line for many years but my last bloodwork showed very high liver enzymes so they Difficult Child it. I'm on humira now but some of the treatment is some cancer drugs. pain relief I'm on ultram. I too hurt almost everyday. I'm hurting now and it's 2:30.

I wish u the best and pray u don't have this disease.

Lots of love doll

 

[timer lady]

Oh, sweetie.....very gentle (((hugs))). It's okay to be down about this...you should have time to process this information then put a thoughtful treatment plan into place with the help of your rheumatologist (sp?).

You're, as always, in my prayers.

 

[Wiped Out]

Ladies,
Thank you! You are the
The reason the Prednisone would mess with my Addison's is that I take cortisone (for the Addison's) which is a steroid. It's the preferred medication. at least here in the U.S. Some doctors do treat it with Prednisone. I haven't read a lot of good about that. My doctor said if I need the Prednisone they would take me off the cortisone. I definitely do not want that to happen. Thanks for letting me know there are other options!!

My sister (a nurse) was researching some stuff last night texted me that: Some of the lesser known symptoms of celiac disease: anemia (forgot that doctor also said yesterday I am somewhat anemic), osteoporosis (I have osteopenia), bone fractures, rheumatoid arthritis and lupus symptoms. Maybe it really is the Celiac's?

I so appreciate all of the good thoughts and good advice as well. It helps more than you know. I need to remember to focus on the fact that I've lived with auto-immune diseases all of my life with my polyglandular failures (Addison's, Hypothyroid, and Primary Ovarian Failure)and have been fine.

Love you all!

 

[hearts and roses]

My sister (a nurse) was researching some stuff last night texted me that: Some of the lesser known symptoms of celiac disease: anemia (forgot that doctor also said yesterday I am somewhat anemic), osteoporosis (I have osteopenia), bone fractures, rheumatoid arthritis and lupus symptoms. Maybe it really is the Celiac's? Love you all!

It is very common for people with one auto immune disease to have other overlapping diagnosis related to other auto immune diseases. My niece, who is celiac, was later diagnosis with lupus and that is what they told my sister. My sister, also celiac, has osteoporosis (they think) and s being treated for degenerative bone of her spine (can't recall the actual name). My other sister, also celiac, has RA, which her doctors said overlaps as an AID-similar (dr lingo).

Anyway, I will keep you in my thoughts, it's not say contending with the chronic pain and worry. Big hugs~

 

[busywend]

Sending hugs and good vibes for the best possible outcome!

 

[Josie]

You never know about the celiac disease. I would get all the proper testing if you want to, but try the diet either way. No one in my family, except my grandmother, tested positive conventionally, and we all feel better by following the girlfriend diet. My mother, my children, my husband, and I all eat girlfriend.

The girlfriend community believes if the blood test comes back positive, it is celiac. Maybe the intestine hasn't been damaged yet or they don't test a damaged spot. Whether it is true celiac or just gluten intolerance, probably more than half the people I have met who are girlfriend, did not get a traditional diagnosis with the biopsy.

My husband has Grave's Disease and thinks going girlfriend keeps his thyroid in check. I had foot pain that went away when I went girlfriend. I was planning surgery for the summer but didn't need it, after changing my diet. I still have the bunion, but it doesn't hurt any more. Many other symptoms of mine cleared up that I didn't even know I had, until they went away. Irritability, anxiety, sleepiness, brain fog, not being able to listen to the radio and have a conversation at the same time, swollen fingers, bloated stomach, and more.

I was one who ate the entire bread basket when I went out to eat. I thought I wouldn't be able to give it up. Honestly, I thought I would eat it when my kids weren't around. I feel so much better that I am not even tempted by any of that any more. As a bonus, I have lost 25 needed lbs.

It could make a huge difference for you and it isn't as hard as it used to be. Good luck.