Shug and Lindy, I hope things turn out okay for both of you.  I'll be keeping you in my thoughts and prayers. Beginning the second week of my new combination therapy of 50 mg Enbrel/weekly, 20 mg Arava/day, and a reduction course of prednisone (80 to 60 to 40 and then to 20 this month and next).

I am hoping that my current malaise, melancholy, RA-flu are simply a result of the pace of the past couple of weeks and the overload of good news/bad news that has taken place and that at least some of my emotional rawness is related to the prednisone coursing through my body and playing with my brain.

This afternoon is another hæmodialysis session: I find the experience exhausting, but am told that is normal at the beginning and that the feeling does lift.

Cheers to everyone! Hi Shug, am glad to read your post.  Was wondering how you were doing.  I think the malaise and RA flu like symptoms are part of the dialysis and part Prednisone.  You're on huge doses and granted it's short term it still plays with our emotions.  I'd be exhausted and emotionally traumatized from just the phsyical impact of being hit with such a load of medical issues in such a short space of time.  You've hardly had time to take a breath between episodes and treatments.   Any idea of how long you'll have to be on dialysis?  I've slept through my MRIs so I'd probably sleep through dialysis.  Take care, you're in our thoughts.  Lindy [QUOTE=LinB]   Any idea of how long you'll have to be on dialysis?  I've slept through my MRIs so I'd probably sleep through dialysis. [/QUOTE]

Thanks Lindy. WHEN (not if!) the Enbrel slows the progress of renal amyloidosis the game plan is to reduce HD to twice weekly and then once a week. However, I have been told at this point in time with the accrued damage it will "most likely" be lifelong and that 3Xwk will be in effect until labs are WNL.
[QUOTE=LinB] I thought that once the meds kicked in you could stop. [/QUOTE]
Nope: the Enbrel is to keep the abnormal protein deposits in the tubular membranous basement (TBM) from become more pronounced.

In renal amyloidsis the kidneys tend to become "tough", shrunken in size, and renal function rapidly decreases. I have borderline kidney failure by ultrasound and biospy, but my BUN and creatinine clearance and ^ cholesterol are indicative of full-blown kidney failure. However, I prefer the early version to the latter.

The "team" was concerned about the "profuse and abnormal appearance of intrarenal amyloid deposits" that occured over a relatively short period of time.

IF, big if, I fully grasped and understood all that I was being told, amyloidosis is, at this time, non-reversible. However, Lev's Wows postings give me hope!

ETA: sleeping during dialysis is ALWAYS an option for me, but the first time I did I required more than a modicum of assistance to rise from the couch and had ye olde 'morning stiffness' for about 2.5 hours afterward. Once the Enbrel kicks in that aspect of sleeping through the session may change! Until then I have audio books and music to occupy myself.

Spelunker2009-06-15 23:33:16

Shug....  Hugs

Thanks! I am appreciate of your thoughts and your prayers.

Hi Babs. You question should be easy to answer, but… … a few months ago my serum creatinine was flagged and my BUN was elevated and the BUN/Cr ration was just slightly above normal. I have two 24-hour urine tests that were skewed. At that time, I saw the nephrologists who did a renal ultrasound that was unremarkable. I was having weekly blood and urine tests who results fluctuated, but not widely nor wildly.
 
In the last few days I was in Mexico and the week after returning I began to have pitting edema in my lower legs, by blood pressure was alarming, and I felt unwell. Within that couple of weeks my BUN/Cr ration dropped (a sign of kidney disease), my total cholesterol went from 160-680 (a red flag for renal amyloidosis) and I was scheduled for renal biopsies. So the lab values changed over a few months time, but the biggest changes came within two weeks.

Now, there is an example of how the answer to a straightforward question becomes a novella! Spelunker2009-06-16 08:32:44I vaguely remember the RD saying that Plaquenil (HCG) was “her drug” of choice for treating secondary Sjogren's syndrome.  Although HCG was not specifically prescribed for SS, it must have been at least partially effect in reducing the signs and symptoms without me being fully aware of it. Since it was discontinued early this month, my dry eyes have become a real torment and my dry mouth a nuisance (especially my total liquid intake is limited), and my nasal passages are so dry they burns clear down to my throat.

Has anyone noticed an exacerbation of Sjogren's syndrome signs and symptoms (gotta love those alliterations) with the discontinuation of HCG prescribed for another autoimmune disorder?

I have a vaporizing running in each room, am using nighttime moisture gel, replacement tears (too bad we cannot by Systane by the quart), moisture sparing eyewear at night and when I am outdoors for more than just a few minutes. Yesterday I even resorted to the ages-old remedy of cucumber slices.  Any other suggestions?

I suppose I should have posted this whine in an established Sjogren's syndrome thread, but as I have already taken this thread so far off topic... ... Lynn recently posted another good news article re: combination therapy that can be found >>HERE<<. Thanks for posting the link Shug Snow, honestly, I get so much of my strength from here.  I hear how others are dealing with life and I am inspired... I know I can come here for support, understanding, knowledge and suggestions and I am grateful.  I look to others and they help me see the path.

Thank-you Snow, for your encouragement and inspiration.  To better days! 
[QUOTE=waddie]but the dry eye is getting to me!  I can't wait to get the plugs...I hope they help![quote]
I will add my hope to yours: do you think that will double your chances? [quote] The Idoc said it could take up to 3 months for the Restasis to work,  [/QUOTE]
I wish you good luck with this as well! Have you signed up for the "Restasis rewards" program? They offer some assistance with co-pays.

Bonne chance!
Thanks for this info Shug, I didn't know they offered assistance with co-pays!  I will most certainly check this out! 

And surely your hopes and mine together will double my chances!  At the very least, it might keep me sane!

Thanks Shug.

Back attcha!  With apologies for having usurped this topic and turning it into a private moan and whine session.

In the middle of my 3rd week of 50Mg Enbrel/week and 20 mg of Arava/day plus an increase back to 80 mg pred/day, I have not made much progress in equalizing my BUN/Creat ration, my blood pressure continues to be worrisome, and my cholesterol have taken another increase. However, I –think- my joints are doing better behind all that pred, or at least some of them are although my sed rate remains elevated and a recently xray and ultrasound of my left jaw indicates synovitis.

I am going to be doing four hours of hæmodialysis Monday-Saturday and my physician is contacting the insurance with “an appeal for need” to obtain a home dialysis unit.  We had a plumber and an electrician come today to advice us on what needs to be done to manage a home unit. Will we have to have a generator installed that will immediately take over in case of a power failure and will have to have a specially designed septic system installed.

Once the unit is in place we will receive training in how to manage and maintain the port, as well as how to manage and maintain the machine. Once we are proficient in doing that, I will be doing hæmodialysis at night for 6-8 hours six nights a week. The game plan is based on my doctors’ experience that more frequent and sustained hæmodialysis will restore balance and thus blood pressure is improved and cholesterol will be descreased.

OK, now how about some nice aged cheese and water crackers to go with that whine?! Shug, did your doctor expect results this soon after starting dialysis?  I'm not familiar with the disease.  Doing dialysis nightly sounds like a good approach, now if you can get the renovation done.  A good approach but daunting.  Your support system must be phenomenal.  You can whine anytime you want to, you have every right and I'll always listen to you and help out if possible.  Lindy  [QUOTE=LinB]Shug, did your doctor expect results this soon after starting dialysis? [/quote]
Thirty hours of dialysis is a hallmark: at that point, according to what I have been told, there should be a recognizable improvement in lab values and in turn blood pressure should begin to normalize. I had had 45 hours total, so an alteration of plans was discussed.
[quote] Doing dialysis nightly sounds like a good approach, now if you can get the renovation done.  A good approach but daunting.[/quote]
Bob will be calling the electricians at 8 to tell them to order the generator and he has already spoken with the plumber who will be obtaining all the permits for the septic system. He projects a ten day completion time once the permits are in hand. The electrician told us yesterday that this was a "pretty straightforward" job, made easier as everything will be done on and outside wall and the dedicated electrical line for the unit can be routed directly from the main power box through the attic. The water already runs through the attic, so establishing a dedicated water line will be a matter of cutting in a new line and running it to where the unit will be.
[quote]  Your support system must be phenomenal.[/quote]
Yes! They take very good care of me.
[quote]  You can whine anytime you want to, you have every right and I'll always listen to you and help out if possible.  Lindy [/QUOTE]
Thanks Lindy: I will try not to take advantage. [/QUOTE]

 

refrigerate the Restasis.......

it feels so much better going in...... also..

dose w/ drops of the systane or other approved lube about 15 minutes before you dose w/ restasis.

 

Makes a big difference....and the refrigeration feels awesome going in......  still may burn afterwhile... but not initially.

 

good luck, waddie!!

Shug!  What an undertaking... I am glad it is an option for you.. this will ease some of the troubles w/ having to go to the hospital for dialysis....

 

I hope the nightly ones will make the difference needed.

 

*hugs*

I am not looking forward to the noise, the dust, the disruption, but yes! this plan of action will make things easier, in the long run, for both me and Bob.

I admit that getting myself ready to go to the dialysis center everyday is repellent. Being able to do this in the comfort of my own home, surrounded by my own _things_ and in the good company of my small family will make the whole "thing" less onerous.

Lynn, Shug, this sounds like the ideal situation, surrounded by your own "stuff" and having loved ones close by. 

 

It also will keep you isolated from other's germs.  I had to go for my labs the other morning and everyone in the waiting room was coughing.  I stayed long enough to tell them I would be waiting outside.  It's harvest time and we're in an area where most of the fields are hay or Sudan grass so I guess allergies are acting up, mine included.  Lindy 

{{{{{Shug}}}}}  I am so happy you will be able to do this and soon!  You will be better off doing it at home, I have no doubt.  It would be so important to have the mental (all things are 'mental' to me lately!) comfort such an advantage would bring, IMHO. 

I think, for me, its the doing of a thing as well that helps and I know you are a proactive person!  Way to take the bull by the horns!   Towards the end of last week we received notice that the request for construction permits had been received and duly registered. Then we were told that the Commission would be sending notifications to everyone with a one mile distance that "medically necessitated improvements" were being proposed. The kicker was that from the date of receipt neighbours had 30 calendar days to respond. The estimated date of deliver of the notification was July 29...

We are attempting to circumvent this long wait for action by personally visiting each house within the radius delineated by the Commissioners.

Meanwhile, due to another spike in blood pressure I am now spending 6 hours X 6 days a week at the dialysis center.

I don't remember signing up for this!!
Shug, I so hate to hear this news!  I was in hopes things would move as fast as construction could!  What a big fat drag! 

6 hrs x 6 days a week???  I feel pitifully inadequate in my ability to give you comfort in some small way.  I add my energy to yours to get you through this time and wish you to know, I am thinking of you!

Bumping for newbies.

And while I am at it, I will update.  I am doing pretty well, all things considered.  The combination of Enbrel, minocycline and fish oil (thanks for that jewel of information, Jasmine!) I am keeping inflammation at bay.  I occasionally have a sore knee or my right shoulder hurts when I over do things, and I have on going chest pain ( not [QUOTE=waddie]Bumping for newbies.

And while I am at it, I will update.  I am doing pretty well, all things considered.  The combination of Enbrel, minocycline and fish oil (thanks for that jewel of information, Jasmine!) I am keeping inflammation at bay.  I occasionally have a sore knee or my right shoulder hurts when I over do things, and I have on going chest pain ( not [/QUOTE]

 

Glad things have gotten so much better Bumping for the info Waddie, I am so heartened to know that even with all the additional stress and worry of the last weeks your combo continues to work for you. Good news! ttt This has such good information... If you are new here, spend some time looking!

Shug, I hope the construction goes well? 

Ditto [QUOTE=waddie]Shug, I hope the construction goes well?  [/QUOTE]

Who says you can't fight City Hall? or in this case the county planning commission? I ended up not being able to finish the door-to-door canvassing, but dear Bob took up the task and got signatures from all but one house in the prescribed distance. He then took the petition to the attorney I had used to draw up my end-of-life plan, who in turn requested letters of necessity from my physicians and hand delivered them to each of the commissioners in turn. The construction permits were authorized at the next Thursday lunch session.

The instant-on generator is, according to this mornings email update from home, installed, tested, and the inspector will be coming today. The septic system is installed, the contained leech lines in place, and awaiting inspection before the final layer of concrete are poured and the tank is sealed.

It will be, if the predictions of the contractors are faithful, finished by noon tomorrow.

Yes!
What a guy Bob is!  That is a lot to accomplish!  I am glad you didn't have to stress with the construction and angst of the permit, you have been through enough!

Awaiting your arrival, how nice is that!  I hope you are there soon, back in your nest where things just feel right and complete!

bump A quick update on my combination therapy: or maybe it is simply a restating instead of an update, as I have resumed the combo of Arava, MTX, and Enbrel. Still restricted to not supplements, including fish oil.

I trust everyone is as well as possible and celebrating the potentials of life---even with RA.

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