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Other Platelet Disorders

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Here we go again 7 years 2 months ago #45018

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Dan:

Do you have any edema? Are your skin or eyes yellow? If not, 1 and 2 probably aren't too bad at this point, IF you have them. I sort of doubt it too because those doctors are moving awfully slow with this. It's been months and they aren't much closer to an answer. This is what is wrong with the 'specialty doctor' gig. You get passed around and no one wants to make the actual diagnosis commitment. When you have eight or nine different doctors, it takes forever!

I know, guys, I know. I really should do it too before my deductible starts over in January.
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Here we go again 7 years 2 months ago #45025

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I do have a little edema in my feet but no yellowing or jaundice. My Urologist told his staff to get me in right after the CT but they couldn't because he was overbooked already. Then he went to a conference in D.C. for a few days. At least his P.A. has called to check up on me because she's very concerned.
You're right about specialists, I think that they are afraid to make a DX especially when you have Lupus because of the goofy things Lupus does(or even PD). It's almost like they play the "blame game" then pass the buck to a different ologist. Like the last one to leave gets stuck with the check!

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Here we go again 7 years 2 months ago #45033

  • Sandi
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Well I hope they can get you in soon. You'd think if the doctor said to fit you in, the staff would figure out a way to do it. Frustrating!

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Here we go again 7 years 2 months ago #45053

  • Melinda
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I found this at the NIH site and then accidently deleted the page and this page so it's from memory:
GFR below 60 may mean kidney disease - may
Don't know how old you are, and I am not asking! - but as one gets older their kidney values aren't as good.

Know with the GFR my lab gives results for non-African American and African American - and my lab has the range for both as: >=60.0 mL/min/1.73m2 - I do not understand why the range is the same for both BUT my results under AA and non-AA are different for me who is non-AA.

Ok, had to cry for a bit as the protein electrophoresis, serum test was ordered by my fantastic hematologist & I only had him for just shy of 3 years. He had cut back his schedule & patients recently, that is how he retired - he died the beginning of the month, no known health problems so his death at age 65 was unexpected [I'm speculating a stroke or heart attack] - this man lived for his patients and you knew he lived for you and you knew he loved you [know that part sounds crazy but you felt his love]. 5 days after his death his patients received a letter from the HMO and inside that was also a letter from his wife telling us how much we meant to him. I'm thankful when I talked with him shortly before he died I told him how much he meant to me.

So my last protein electrophoresis, serum test had a total of 8 results - and my gamma globulin, electrophoresis is the only one off, low - we do know my IgG is low.

This breaks down the results
www.nlm.nih.gov/medlineplus/ency/article/003540.htm

Keep us posted Dan - hope you can get in soon to see the urologist!!

That is one reason I really do like my HMO - all records are available to any doctor or nurse or PA I see - they don't hesitate to send you to the specialist. Recently I had an appt with a urologist and I felt I needed to be seen sooner so I called up and got in sooner. Sometimes I know that can't happen but this time it worked.

Sandi - would you like to hear about the neobladder my late brother-in-law received thanks to bladder cancer? Get in to see the doctor for heavens sake - and no excuses given, you have the time!

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Here we go again 7 years 2 months ago #45094

  • Sandi
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Okay, so I called my GP today to get an appointment. I've been feeling like crap and think I might be sick (I can never tell). So anyway, they only have 'sick' appointments and 'well' checkups. The checkups take months to get into. They can't give me a 'sick' appointment unless I call at 8:30 tomorrow morning. Calling today could not schedule me for tomorrow. How ridiculous is that!

I will bring up the other issues as well.

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Here we go again 7 years 2 months ago #45097

  • Melinda
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That is crazy Sandi - now I see why you didn't want to try to make an appt ;)

So for a "sick" appt you have to call in that morning. That is kind of nuts that you couldn't do it today.

Hope you feel better quick!

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Here we go again 7 years 2 months ago #45125

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Just got in from the Urologist and he says everything is OK, he did say that they found "nothing too serious" and just need to be monitored for future issues. He did say that I do have BPH, he said that I'm a little too young for that but he wasn't too concerned. He said that it usually doesn't hit until mid to late 50's. (I'm only 46)He did say that my kidney issues may be from the BPH blocking things up or possibly a dyskinesia from my PD.

I also went to my Rheumatologist as well, he says that most of my blood work except my GFR(still at 55) creatinine( high) BUN(high)and my glucose(high), he said that this "might" be something but he doubts it. All the usual kidney/Lupus blood work was almost perfect. He also thinks it might be a PD issue or BPH issue and not a Lupus issue.

He also said that he wants me to try at least going down to 10mg of Medrol(he said 8mg would be better). He said that most people can't sustain 12mg without doing more harm than good and 8mg is the standard for Lupus patients and lessens the long term effects of steroids. He said that the effects are still there they just are much farther down the road. He also want's me to try Cymbalta, when I was in his office it was only 12 degrees and my hands, feet, lips and ear lobes were blue and very painful to touch. He said that the Reynaud's, neuropathy and arthritis were getting pretty bad. He said he could up the dose of Norco but I don't like opiates(he doesn't either) so he wants a trial of this.

Sandi, that's kind of strange that if you call in sick they can get you in that day but if it's a check up it takes weeks? I do hope you get to feeling better.

Melinda, finding a doctor like that is rare. And HMO's can be good because all your records stay in house, my PCP is going nuts trying to get all the other doctors to fax her my records.

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Here we go again 7 years 2 months ago #45127

  • Sandi
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Well, all in all, it seems like good news. It could have been much worse. If they are telling you they're not concerned after all that, that's great!

I tried Cymbalta years ago. I'll tell you Dan, I woke up the next day and felt nearly comatose. Good thing I always took new meds on Friday night because there was no way I'd have been able to work that next day. I literally sat on the couch and stared all day. Having tried so many of those meds which failed, I ended up falling back on Norco. Even an opiate is preferable to those serotonin-norepinephrine reuptake inhibitors as far as I'm concerned. I take 4 a day, 10/325 and still function better than I did on Cymbalta or Lyrica, etc. Everyone is different though, so you might do better than I did. At least with Norco I still have feelings...Cymbalta made me feel like I didn't care about anything or anyone. Nothing stops the pain, although Lyrica was the closest thing to that that I ever tried. Prednisone does a pretty good job too on high enough doses, but that's just not feasible as you know.

One thing I've learned over the years is that you have to tell your doctors what you want. What helps you to feel the best and function the best, because you also have to try to live your life in the midst of it all. The thing that makes me nuts is how they push those other serious drugs and try to minimize Prednisone doses, but the side effects of the others can be just as bad if not worse. You just keep going down the drug line up and piling them on. It gets depressing because there just isn't anything out there.

Good luck with Cymbalta. Let me know how you do.

The HMO sounds good, but at this stage I couldn't possibly start over with all new doctors. It would be too overwhelming. I have five doctors in my town all on the same street, so that is super convenient. The others aren't very far away either.
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Here we go again 7 years 2 months ago #45168

  • Melinda
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Yeah Dan, if they aren't concerned then that's good.

Are you going to try to go down to the 10mg of Medrol? Hope Cymbalta treats you well!

Sandi I didn't want to change all doctors either [had less of them at the time] - but had to and it turned out to be for the best really! My new PCP actually listened to me [this wasn't the one I fired, had to switch when my original HMO PCP was diagnosed with breast cancer to the other PCP who I ended up firing], and it hit me that my "old" PCP wasn't really listening to me I think because I had been seeing him for 22 years and was like an old shoe so to speak. So for me it worked out for the better.

Did you get in to see your PCP?

Dan you are right, finding a doctor like my hematologist was a rare find and I was blessed to have known him.

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Here we go again 7 years 2 months ago #45171

  • Sandi
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Melinda:

In a few months, I'll be on Medicare so I won't have much choice. Hopefully, I can see the same doctors.

No, I never did make it to the doctors yet. My old job is swamped and called me in for a few hours a day, a few days a week. I worked last Friday, today and will tomorrow, so I can't quite fit the Dr. in just yet. Probably after Thanksgiving at this point. I don't expect the job to last (and do not want it to).

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Here we go again 7 years 2 months ago #45172

  • Melinda
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You had said you feel like crap so thought you might have gotten in. Feeling better?

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Here we go again 7 years 2 months ago #45173

  • Sandi
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No, not really feeling better but hanging in. Sadly, I always think of my days as just another to get through, so it doesn't really matter. What an outlook, huh? I'm just so used to feeling miserable....it's been that way for years.

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Here we go again 7 years 1 month ago #45194

  • Melinda
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There is however a difference between feeling like crap because of an illness [strep, sinus infection, stomach bug, bronchitis etc] and feeling like crap because of lupus etc. I guess I assumed you meant you felt like crap because you were sick-sick, not lupus-sick. :)

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Here we go again 7 years 1 month ago #45201

  • Sandi
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  • Sandi Forum Moderator Diagnosed in 1998, currently in remission. Diagnosed with Lupus in 2006. Last Count - 344k - 6-9-18
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Both. The problem is that I'm never sure whether I am sick or if Lupus is kicking up. It feels the same unless I'm really coughing or sneezing my head off. I honestly never know the difference. My sinuses are always stuffed (nasal problems) so I can't tell if I have a sinus infection or not. I also have the bladder problems and feel like I have to go a lot and that can last weeks. Most of the time, it is probably Lupus inflammation so getting an antibiotic won't help. I used to go and get a urinalysis done every time I felt like that and had it come back normal so many times, so I stopped going and just use Azo. It's common to feel fevery, achy, chills, muscle pain, weakness, nausea, etc. most of the time, so it's hard to know. Usually if it gets worse than normal and lasts more than a few weeks, I will try an antibiotic to see if I get any better. By that time, it's so bad that it takes 3 months and two antibiotics to clear it up. If I did run to the GP every time something like that starts, I'd be on antibiotics way too often so I hold back until I can't take it any more.

It's a weird phenomenon and other Lupus patients tell me they have the same problem, so it's not just me. Only one time I knew I was sick....I woke up in the middle of the night with a temp of 103 and it turned out that I had pneumonia. No coughing...but that fever was too high for my normal fevers so I knew something was wrong that time.

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Here we go again 7 years 1 month ago #45259

  • Melinda
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Hope you are doing better Sandi! Must be hard if you can't tell if getting sick or it's lupus. So the Azo works for UTIs? It would just scare me if I get them [so far I've never had one - knocking on wood] and not know if it is one, because I know someone who ended up in the hospital due to sepsis from an undetected UTI.

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Here we go again 7 years 1 month ago #45260

  • Sandi
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Azo doesn't cure UTI's but it takes the symptoms away. I can't go to the Dr. every time it happens....I'd be there all the time! Like I said, I used to go whenever it happened but most of the time the urinalysis would be negative, so I stopped doing that. 85% of the time it's not a UTI. It is Interstitial Cystitis. Audi and I used to talk about this all the time. This is one of many reasons why I cannot tell if I am 'sick' or not.

"Interstitial cystitis (IC) is an inflammation of the bladder which can occur by itself or in conjunction with other autoimmune diseases, such as fibromyalgia, scleroderma, lupus, or Sjögren's Syndrome.

Symptoms of interstitial cystitis (IC) include bladder spasms (which can be very painful), bladder frequency, bladder pain, low bladder capacity, and incontinence. Very often, Interstitial Cystitis patients are wrongly treated for what their doctors assume must be bladder infections, urethritis, or "emotional" problems.
Repeated symptoms of urinary tract infections which do not show actual infection on testing is a hallmark symptom of interstitial cystitis. The frequency and urgency which IC can cause is not the same as that brought on by drinking a lot of fluids, or from the use of diuretics, although the symptoms do worsen for some people with coffee consumption, etc."

www.sclero.org/medical/symptoms/associated/interstitial-cystitis/a-to-z.html

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Here we go again 7 years 1 month ago #45338

  • Sandi
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Hey Dan....check in time!

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Here we go again 7 years 1 month ago #45348

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Been very busy the last few days. My wife had to have surgery on her shoulder to fix multiple bone spurs and the scar tissue that goes with it. So she's down for a few weeks meaning that I have to try and do most everything.

The insurance is fighting the Cymbalta so I haven't started that yet. And my new Neurologist went to a major university back east somewhere, so I get to try and find a new one again. My Rheumatologist is still trying to lower my Medrol dosage, I've tried a few times and ended with me either with platelets down the tubes or a major Lupus flare. So I'm not sure what to do. As long as I stay at 12mg my blood work is almost normal.
I've also started with a new type of PT/OT. It's just for people with multiple neurologic/autoimmune issues. I've only had the initial testing done so far but it sounds promising. They put you through a whole bunch of tests and then rate you on a scale of 1-50. I only scored an 8. They want people at a minimum of 20 to be considered "non home bound" so I get to have my rear handed to me over the next 12 weeks. They do what's called forced exercise to build up the legs and core area.
And I'm still dealing with the UTI's/IC that refuses to go away!!! :angry: My Urologist says that Lupus patients get a lifetime of these issues. So I feel your pain Sandi.

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Here we go again 7 years 1 month ago #45352

  • Sandi
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The PT/OT sounds good! Can't hurt! I've had PT a few times over the years but can't get very far because my insurance only covers 20 sessions and it's never enough to make a difference. If you can go long-term, that would be great!

Sorry to hear about your wife. That would definitely be tough. How old are your kids - can they do some things?

Good luck with Cymbalta. I had trouble getting it approved too but once I did, they approved it until 2099....long after I'd be dead. I didn't even take it more than a month.

As for the steroids, you do what you have to do. Being in the same boat, I can't lower it either no matter how many times I've been told. I've tried it and it's not possible. Yes, the long term side effects are showing up after 10 years of it, but there's nothing I can do about that.
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Here we go again 7 years 1 month ago #45354

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My kids are 16 & 18, right now they're both buried in finals and semester term papers, so they almost can't see straight. But they both try to help as much as they can. Plus my son(18) works almost FT hours.

After what I've read about Cymbalta on patients like me, I'm not sure if I even want that. It sounds worse than the high dose Neurontin (3600mg) I'm on. I don't like the comatose/walking dead feeling.

My Rheumatologist mentioned a few other meds to me. The only ones I remember are Enbrel, Imuran and of course MTX. He mentioned a few others but I don't remember what they were(thanks brain fog). But after reading about the affects of these drugs I'm not sure if any of these are any better for long term. He said that if I can get down to 8mg of Medrol, according to the latest research the long term affects are cut in half.

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Here we go again 7 years 1 month ago #45355

  • Sandi
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My Rheumatologist has been doing the same thing for years. She keeps trying the DMARD's and serotonin-norepinephrine reuptake inhibitors to get my Prednisone dose down. I've tried everything she wanted me to but the side effects were not tolerable. I guess they think those immunosuppressants will take down inflammation so Prednisone doses can be lowered. They don't quite work that way and that thinking has not worked for me.

Hey, what do you do with your old meds? I have piles in a drawer and I don't know how to dispose of them. Some are quite toxic so I don't just want to throw them in the garbage or down the toilet.

At least your kids can take care of themselves. I thought they were little and you had to help them get dressed and all of that. That's good. This must be a tough time for your family.

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Here we go again 7 years 1 month ago #45357

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To get rid of old drugs most of the big pharmacies will take them and have them destroyed. And some towns have disposal sites as well. They really shouldn't be flushed because they can get into the water supply.

As far as I can tell, the only one of the other drugs that says they can reduce the amount of steroids is Imuran. But it looks just as bad long term as Medrol.

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Here we go again 7 years 1 month ago #45358

  • Sandi
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I've tried Imuran. As far as I could tell, it didn't do anything and the side effects were bad. My Rheumtologist has claimed that a few drugs would do the same thing, most recently that Arava that I refuse to try. And CellCept which she keeps pushing also. They don't have the anti-inflammatory affect that Prednisone does, at least not that I can physically feel.

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Here we go again 7 years 1 month ago #45359

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I was on Cellcept for a long time and it seemed to be working OK and if I remember correctly I was on 8mg of Medrol back then. Then for some reason I was taken off of it. So maybe it might work for me but your right about it not having the anti-inflammatory properties of Prednisone. Fortunately my Rheumatologist isn't wanting me off the Medrol completely, in fact he said that I'll be on it for life he's just OCD about me getting down to 8mg.

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Here we go again 7 years 1 month ago #45362

  • Sandi
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I tried CellCept (twice) in the past too. Couldn't tolerate it. To me, it's the same as Imuran. Neither one did any good and I had the same side effects. Those drugs scare me too....I don't like them.

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Here we go again 7 years 1 month ago #45530

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I just got some weird news. I no longer have hearing problems, so no more hearing aids! Come to find out it was more than likely a side effect of the Cellcept. It's one of the more rare side effects when taken along with Allopurinol which I was last year. So one less thing to deal with. :cheer:

Also we just had a new Rheumatologist come into the area, so I have a referral to go see her. If I can get in(and if she's any good) it will save me over 100 miles of driving.

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Here we go again 7 years 1 month ago #45531

  • Sandi
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Dan - that's great news! You're right, one less thing.

As for the Rheumatologist, it's good one two counts. One, you save the drive and two, it's a fresh set of eyes looking at the situation.

I used to have to travel an hour to see a Rheumatologist, then a new office opened in my area with 4 Rheumatologists. It was a God send.
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Here we go again 7 years 1 month ago #45533

  • Melinda
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Dan who would have thought those 2 meds at the same time would do that - guess that's why it is a rare side effect. How great to be rid of the hearing aids - you must be ecstatic!

Fingers crossed the new rheumatologist is a keeper!

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Here we go again 7 years 1 week ago #45790

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Well the new Rheumatologist is already so overbooked that she can't see straight. So I get to keep the one I have, he's good just a long drive to see.

Also my insurance flatly refused the Cymbalta so I never got on that. My Rheumatologist did get Imuran through without a fight. So I start that tomorrow, so here's hoping it works. I've now tried and failed 4 times to lower my Medrol dose. He's hoping that with the Imuran I can do that.

I've also signed up for an Accounting/ Booking class from an online school. It's not a degree program, just a certification class. If I pass it, I'm hoping I can try to go back to work of some kind. I'm bored stiff staying home. But I don't think my doctors will release me.

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Here we go again 7 years 1 week ago #45791

  • Sandi
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Dan:

Taking classes is a great idea if you can handle it! As far as work, that is a field where you can even do part-time work from home, so maybe that could work. Most doctors encourage working when possible if the patient is up to it, so maybe they would go for it. Just make sure that you don't blow the disability by working too much. It's hard to get it back once you lose it.

You seem to be following exactly in my past path with the meds. I tried and failed a few times too trying to lower the steroids. I gave up. I tried going down 1 mg every 6 to 8 weeks and failed that. It just wasn't worth the pain that went with it.

Sorry about the Cymbalta. I know you would have liked to try it, but I felt emotionally dead on it. When added to all of the other meds, it just made me feel too out of it. I didn't like living that way. Try not to consider it a big loss. Some of these drugs can be heinous.

As far as Imuran, I thought it was pretty much exactly like CellCept. Neither did anything positive that I ever noticed. Hopefully you'll have better luck.
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