[raggedyann1]

Hi all,

Last week I posted about flaring without an increase in joint pain well I am flaring and after our drive down and back I have the joint pain now too.
My doctor didn't even do the customary take my list when he came in the exam room. He came in an immediately wanted to double check what medications I was on. Asked about the prednisone, I guess not all his patients follow his directions, and became even more concerned.

He looked at me and asked about the ct scan of the lungs as he didn't have the report, I tried to remember but couldn't explain it right. He put me on 40mg of prednisone for 5 days starting today and then I am to call him next Monday. So I will have been back off of it 2 days at that point. After he downloaded the report on the ct scan he found that there is no auto-immune problem with my lungs. At that point he had the woman taking my blood add a "full" lupus panel to my lab work being done.

My Rheumy doesn't normally run a lupus panel. I have been with him almost 5 years now and this is the 3rd time he has run it. Because of the lack of positive results (other than ana and the igm cardiolipin) they give him no feedback on disease process. One of the concerns with Enbrel is the development of "lupus like" disease with a positive dsdna being the biggest concern. Fortunately I will be able to find out next Monday the results to the labs , that is not too long of a wait compared to many others here. From what I could find earlier today the dsdna will return to normal after the problem medication (like Enbrel) is ceased. However I also found some other notes where there are starting to be some renal issues with patients who developed dsdna after taking a TNF Inhibitor.

I really don't want the Enbrel to be the cause of the problems. It is the one medication that has given me the most consistent stability and the only one that has truly reduced my pain levels and increased my energy levels. On the other hand something is causing my increasing edema and I don't accept the answer that it is my medications. My fatigue has gotten considerably worse in the last few days. By tomorrow I should be bouncing off the walls from the prednisone and if so I will use the time to accomplish some tasks that really need to get taken care of.

I have always had a rocky road with the diseases and was hoping the Enbrel was going to give me a good long period of feeling pretty good. Praying what ever this is that it is shortterm and will be solved quickly.

Karen

 

[sam101360]

Karen:

I am sorry that you are struggling, I hope they sort you out very soon.

My rhumy is talking about introducing embrel into my concoction as the cellcept is good but might just not be enough. I have had some kidney problems, but it seems that the cellcept stopped them from being damaged, so now we just do 6 week peepee testing.

I am on 5 mg prendisone as well at the plaquenil and cellcept(1000mg)...I dont want to give up the cellcept but dont think you take both embrel and cellcept....

I hope that this works out for you. Please let us know how you do.

Love - Stephanie

 

[LoopyLoo]

Hi Karen,

It sounds like you have a really good doc there! I'm sorry you are flaring right now - I know how that feels and it's driving me insane. :wall:

You've been through a heck of a lot and come out the other side so hopefully the pred will get you through it. It does suck having to take it though

I'm hopeful that your bloods come back good and you can stay on the Enbrel. In the meantime take good care and rest up.

Hugz, :hug:

Pam xxx

 

[macfamily53]

Dear Karen

I am so sorry you are having to go on prednisone again but i sure pray it does help you to feel better for sure((((hugs))).You have been through way to much but glad you have a positive attitude and we are here to help you keep that good attitude.Please keep us posted on how you are doing and how you are feeling.Sending you lots of (((((((((((hugs))))))))))to help you through your rough patch((((hugs))))).

Tammy

 

[keebler]

((((Karen))))

I hope the increase in the pred helps you. Please don't over do with the increase of pred, with the extra chores you want to do.:tuttut: Get plenty of rest.

Once we find a good med that works we don't want to give it up. I don't blame you for wanting to check out everything to make absolutely sure the enbrel is the cause of your edmena.

Sending lots of hugs and prayers.
Love,
Lyn

 

[Lily]

(((((((Karen)))))))) I have everything crossed that you don't have DsDNA antibodies and that you can stay on Enbrel, I know how much it has helped your pain :hug:

Good luck with the Pred Karen, 40mgs would have me shooting through the roof and strapped into a white coat being led away :wink2: but I'm glad that you can take it and hope it helps sort this out for you.

Do let us know what he says next week. Meantime cherry ripes coming your way :eat:

love
Lily

 

[Sage Hen]

Hi Karen,

I hope your increase in Prednisone, helps you feel much better. I hope you don't have those nasty antibodies in your blood, either.

I hope also, that the Enbrel is not the cause of your Edema...so you can continue taking it.

It is hard to stop a med, that we know is helping us..

Try not to do too much, while taking the higher dose of Pred. You will pay for it once your dose is reduced again..I know, it feels so good, to feel better..It is hard.

I will have you in my thoughts..Karen.

Love,
Sandy

 

[Joandublin]

Dear Karen

What a worrying time for you :hugbetter: Im glad you are getting your results so quickly and Im keeping everything crossed that the Embrel is okay for you to continue, although it must be so frustrating trying to get to the bottom of your recent problems:sad:

Interesingly Im also getting a full Lupus panel done for my next appointment in May. As far as I know this is the first time since my diagnosis that an ENA is being run - at least it is the first time since I started getting copies of my blood results and being more proactive about my disease. I have the dsdna antibodies and anti-ro as well so there will be no surprises there. I'm just curious to know if there are any others.

Please try and not do TOO much during your pred burst (easier said than done). I would be climbing the walls on that dose of pred :worried:.

Gentle hugs
Joan:rose:

 

[acard]

Karen,:hug:
I sure hope you find relief. Let me know how your joint pain is on the pred. Please do't over do it-I know I used to. What nsaid are you on again that has not helped you? I f you don't mind my ???? mind.

I have been rubbing myself down with joint ritis or icy hot because I can't get my pain under control.


Take care and keep us posted. You have been through enough-NO more suffering!!!!!


Love,
Becca

 

[Maia]

What a rough time of it you've had lately - I really hope that you haven't developed the dsDNA antibodies from the Enbrel because it has been helping you so much. While it would be nice to have a clear cut answer to your edema, that's certainly not an answer you wnat.

Prayers going out for you - and please do NOT over do it whilst on 40 mg prednisone! Maybe half-do it

Take care....

 

[raggedyann1]

Thank you all for your kind replies. I am not over-doing it yet !! Well just a tad this evening. Even with the prednisone I am still pretty wiped out. I did lose 4lbs of fluid by this morning, hoping even more will come off in the next few days. My pain levels have started to drop back down, of course hard to tell for sure since I am being so much more quiet.

I am trying not to worry too much but something is going on. This is my 3rd boost of prednisone. Of course I would like answers about the edema that has been ongoing since last summer in addition to why am I flaring so badly now.

Didn't sleep too well last night and here I am up late again. Hoping I can get a good nights sleep tonight.

Thanks,
Karen

 

[cuteynblue72]

I hope you feel better soon. I am not familiar with Enbrel but I hope you can continue to take it if it is such a help for you. Please don't over do it and feel better. You will be in my prayers. Laurie:wink2:

 

[Lily]

Hi Karen,

I hope that you are able to get some sleep tonight :hug:

It's hard to push it to the back of your mind about the antibodies and the Enbrel......... but try :wink2: ............remember one day at a time! Remind me to do that too won't you :hehe:

love
Lily

 

[Clare.T]

Hi Karen I hope you will be able to get it sorted out soon and start feeling better after such a long run. It would be too bad if the Enbrel turned out to be the culprit so I hope with all my heart that it isn't.
I must research the TNF meds again as last time I looked they hadn't identified any serious illness resulting from them and the appearance of the ds DNA antibodies alone was the only concern.

Many Hugs
Clare

 

[mysharonna]

Karen,
Just wanted to send some ((healing vibes)) your way. Hopefully you will not have to stop the Enbrel, since it sounds like it has been quite a help.

Rest up as best you can and hope you are back to your old self soon!
Sharon

 

[Pollyanna]

Hi Karen,

Just a quick "get well" :getwell: for you and hugs to :hugbetter: help you on your way. Do take care of yourself, especially while on the prednisone. You're in my prayers.

Love, Pollyanna :love2:

 

[BigSis]

Hey karen,
Just a gentle hug and a get well wish from me too.
Take the very best care of yourself

 

[karen.w.]

:hug: Dear karen

I also want to send you get well wishes :flower2:

I hope your health improves in every way very soon :fingers:

sending you a really big healing hug & I hope you sleep well tonight!
:hugbetter: take care
karen x

 

[cath]

Hi Karen,

Sending you hugs and flowers while you wait for the lab results, and for the pred to do it's job:hug: :rose3: :flower2: :flowery: :rose: ansy: :give_rose: :foryou:

X C X