View Full Version : Rick's new adventure

01-07-2013, 11:58 AM
Well, it appears to be time to add more meds to my diet, and possibly another doc to my regular visit schedule. I went to the rheumy today, and had to give 7 vials of blood. I feel better after the letting... tic - Anyway, we'll see what the counts are later on the tests they had to send out, go get me an orange "pitcher" for another pee test oh boy, and decide on a starting dose of imuran. Doc wants to do cellcept, but my insurance won't pay for it until after going through imuran, because of the cost of cellcept. Strange. Patient care, or saving money? But that's a different discussion. I go to the neurologist next month, and we'll "share" the results between those two docs and the hematologist I see every month, and go from there. The complicating factor for me is the CVID I have, which is where I don't make enough immunoglobulins for my system to fight off infection, so my immune system is "naturally compromised" aka: birth defect. I got pneumonia and chronic bronchitis quite frequently because of that. So I do IVIG infusions monthly, to bring the immune system up. It works great for that. However, now that my immune system is "up", my lupus is almost constantly "flaring". So this will be a balancing act, first with the imuran, then with the cellcept, as we attempt to get things under control, or as doc says "put the lupus in a box, and not let it out"... I'm already armed with knowledge from doc and here, concerning doseage & side effects to expect. I'm currently doing 15 pred and 400 plaq for the lupus, along with 1/2 a pharmacist's shelf of other stuff for sundry diseases & ailments...

What makes this site great (besides namaste, the mods, and all the great members) is that I can do a "search", and bring up all 104 "hits" results, read all the current and former members' posts, and learn all kinds of stuff. I've found advice from Niall on Cellcept from just this past Dec 2012, and went all the way back to Feb of 2004. It rivals what you can find with a "full" internet search, but is much more concise in the "hits" found, which eliminates a lot of the chaffe you find on the internet...

Oooh!!! I'm a "Tiger" now... lol

01-07-2013, 10:57 PM
sorry you have to add yet another med to your dietry list.

but tell me do you roar, growl or just purr quietly in the corner?

01-08-2013, 04:23 PM
The last few weeks, I've just been over in the corner whimpering, licking my wounds, and correcting my typos on here... lol

01-08-2013, 06:54 PM
I am so sorry about the new meds and also sorry I have not been as helpful as I once was. With the intensity of the GI problems now I can't pick up the laptop often and it is harder to get y'all the info from the phone. Hopefully that will be taken care of in a few weeks and I will be back to myself but until then know that my love and support are with you always

01-09-2013, 08:00 PM
Hey Jmail; I'm sorry that you are having to add new meds and are now licking your wounds in the corner. You have so many issues to deal with and, as you said, it is going to be a hell of a balancing act for you. I hope that, armed with your knowledge, a willing doctor and support, you will eventually get it balanced.
I am glad that our site is helping you to increase your knowledge..keep learning as much as you can and I am sure that you know that we are here to help you as much as we can. Hang In There!

Peace and Blessings

01-09-2013, 09:15 PM
Thanks guys. I was hoping for the results of some of the other tests today, but they're probably going to save them all for one phone call next week. I *think* I'm armed with the info I need, from my rheumy and from here, so long as I don't misplace things. OK, where'd I put my reading specs?...

01-21-2013, 06:11 PM
Just wondering......Why are you going to a neuro?

01-21-2013, 11:56 PM
I was on Imuran for a time and didn't see an appreciable improvement so it was terminated.

Sorry you have to play the health insurance game and exhaust all other remedies before trying the one med that your doctor prefers.

This AI stuff is such a balancing act. Take one med and it's side effects make you have to take another. It's no wonder why the dx of an AI disease prematurely causes us to be fond of the mambo pill organizers like our parents/grandparents use.

Hope your neuro appt goes well.

01-22-2013, 11:29 AM
I was on Imuran also but had a different experience than BonusMom.I really did get great results from it until about week 8 when I went to 75mg and began to hurl like a drunken frat boy.

I did it so long that I was having to drink water to not just wear out every muscle I had by providing something to bring up.I did it for 8 hrs straight and thought *maybe* it was the ick going thru my kids.went off it for a few days then slowly started to dip back in at 25mg and there I went again.

So I got pulled from it and was really really bummed as I was really starting to feel better and have more energy.

I am currently on MTX and dont notice as much improvement but I dont know if that it because I am now almost 6yrs in to diagnosis and just older and creakier and generally more "elderly" feeling or If its taken so long to kind of try to rein things back in.

I wish you luck on it and I think the insurance is stupid too.All these meds are off label for our illness so why does it matter which one the dr wants to try?I can understand not wanting to go from nothing to the most expensive but that doesnt usually happen anyway as we are usually started on the least punishing-well except for prednisone and what can you say about that one?It just is the nasty that it is unfortunately.

Be well.

01-24-2013, 07:30 PM
Koilover512, I'm experiencing various CNS & peripheral symptoms, that haven't subsided any further after getting my B12 levels back up last year. Headaches and short-term memory issues are getting bothersome. Might just be permanent damage from the B12 having gone so low for so long. The neuro guy is somewhat "secretive", almost like he's afraid he'll scare me with his ideas of what might be the issue, or scare me with the fact that he doesn't have a clue... lol - either way, Feb 8 is the day for the needle frenzy, with single-strand nerve conduction, etc. oh boy.

My med addition of imuran (or cellcept) has not occurred yet. There are other issues being checked-out now, from the last go-round of blood work. I had blood drawn 10 days ago at the rheumy, and 3 days ago at the hematologists, had to do a follow-up yesterday for that, and now I have to go do some more next Monday... I hate it when they find something other than what they're looking for, ya know? Still no pee bucket, but I'm expecting that... lol - ie: med changes are on hold for now. Status quo for an "elderly feeling" lupus patient, I guess... |;^)

04-11-2013, 04:32 AM
I was just curious about the neuro because I see one for my myasthenia gravis.

How did the needle frenzy back in Feb.?

04-11-2013, 04:16 PM
I forgotten about starting this thread...

Leg, arm & face again, and "inconclusive" on all 3 of 'em... lol - I'm used to that. There is nerve conduction damage or interference of some sort. I'm inclined to think it's the brain itself - lol - The neuro scratches his head and goes "hmmmm" a lot. I'm almost a "classic" MG, except none of my blood tests show it, and I'll have the physical symtoms at all hours of the day, including upon waking, not just in the evening when "tired". They wanna do another MRI of the brain. I'm almost certain nothing will show-up in that either. The evidence is irrefutably conclusive in that regard, in that the cranial cavity is empty... lol One idea he had was "migraine aura".

I just had another go-round of "disease activity", and am feeling a bit better finally. I made the mistake of doing a 7 hour drive straight through, back a few weeks ago when I went to visit my dad in the hospital. I did the drive down in two parts, but got in a hurry to get back, and ended up paying for it. Had to do hi-dose pred again and missed more time at work. Got a letter from the boss telling me I was in "possible violation of the company's sick policy"... Ya don't say?!?

As to the other stuff, my blood counts were all over the chart until the one in March, in which the kidneys appeared to be stabilizing, along with my electrolytes and blood parts, so we're standing pat on the meds for the most part, doing the plaq, 7.5 pred, and supplementing with higher dose when necessary, along with a prescribed nightly zanaflax (sic), and see if I keep "stable". We'll save the imuran or cellcept for when we have to. Tootsies and fingers crossed again...

04-11-2013, 04:43 PM
MG is a hard AI to diagnose because it is so rare. I was diagnosed with it November of 2008. One of the reason it was so easy with me was well...because I waited until I was almost in a full blown out crisis. To start treatment I received IVIG in the hospital. But I have been symptom free for around three years now. I see a neuro every six months just for a regular check up. The blood work is tricky. It is not the most accurate test. Let me explain. The antibodies that they look for in your blood work has to be in the range of <.4 to be normal. Anything that is out of range doesn't really show how severe the disease is. My recent test showed my count was at 150 and I am symptom free. My neuro says he has had patients with a score of 7 and had every symptom in the book. Have they checked your thymus yet. There is a good amount of people with MG that had a tumor on their thymus. It is also believed that you must have your thymus removed to help with the MG symptoms. I still have mine and haven't had a problem for a while now. I really hope they figure out what is wrong with you. The prednisone should help.

04-13-2013, 07:48 PM
A big issue with any diagnosis with me is that I've got CVID, which is being treated with monthly IVIG infusions. Along with CVID, I've got "B" cell and "T" cell defects (they're "lazy" and don't do the job like they're supposed to). I've had several CaT scans over the years, and as far as I know, no issues with the thymus, though it is slightly suspect, due to the lazy "T" cell issue. My blood work has been generally inconclusive for MG, with the anti-MuSK at zero. But the IVIG influences those counts, the neuro says (there's also a possible IgG component to MG being researched). He was temtped a couple times to call me seronegative, and might still send me to another neuro for another opinion. Like inflammation in the joints, there's just a lot of things that can cause issues with nerve messaging... and here I am, 4 days after lowering the pred from 15, and I feel even more like ka-kah. lol

04-15-2013, 05:16 PM
Sorry you feel so bad. When I started pred. for MG i started at 100mg. It really helped but the side effects are horrible. I only did the IVIG once. I ended up getting viral meningitis from it. Probably just from the type of ivig but i think for now if anything severe happens i will just go with plasmapheresis. I am sorry you are having a tough time getting diagnosed. MG is a hard one to pin point. I hope they figure it out soon.

04-18-2013, 02:25 PM
Thanks Koilover512. Neuro stuff is definitely strange, and if you focus on it too much, gets rather worrisome. If I've got MG, it's early stage, and the IVIG is helping. I just had another session Monday, and I'm feeling much better now, thank you very much. IVIG is done differently now than it was just a few years ago, and is much "cleaner".