I started this and finished one paragraph and it's lost in outer space. This will be short, but you know my short isn't always short. We left at 9:30 am and got home at 8 pm. I could not sleep in the car coming home. I had so much info running around in my head. I'll write what I can remember and what I have in front of me. These results may not be the final on anything as I have to go back in 5 more weeks. May 13, I go back for another pft test and an ultra sound of something.
Finally someone took the time and effort to check me out. I am being ordered OXYGEN. I don't have it yet, but if my ins will pay for it, I am to use it at night and if I am "out and about." That means to the mall or walking or the like. Just what I want when I go out. But I am going to have to get past that. Maybe having it at night will make a big difference in how I feel during the day. I don't want to put a bunch of "tags" on what I have yet because we are not sure. I have intersistal lung disease. We know I have emphysema and have known that but there is more going on than that.
I did some breathing tests and some were not very good while some were actually ok. It's the ones that are not very good that are causing me trouble. Drs believe Sjogrens is the culprit for my lung problems beyond what I had "prior to Sjs." I do not want pulmonary hypertension or pulmonary fibrosis--and i am not for certain I have them. I am being put on "eek----" Prednisone and Imuran. Will talk about amounts later. That's if my ins will pay for Imuran. These docs at U of M are in Pulmonary. The senior doc was very sweetly trying to get me to move my patient status to U of M instead of with my wonderful rheumy. His assoc also mentioned a "lung biopsy." That means in the hospital and a cut in the ribs, blood.
My rheumy is also almost far from me as U of M. U of M diagnosed me originally then I found her and stayed. The drs at the hosp seemed awful anxious for me to choose their facility so I could have all my stuff, labs in one place. I could have their rheumys and Pulms. I will need a pulm if I am going to be on oxygen. I see my BEST RHEUMY DR. B. on Wednesday--so I have to talk to her. I know I am going to need more care with the change in meds. The U of M drs were going to consult with BEST RHEUMY ABOUT THE CHANGES.
I am afraid of taking the new med and I hate prednisone. I'll be on pred for about 6 weeks until we know how the Imuran is working. I just can't see why they wanted me "so bad" to be their patient. A guinea pig of advanced age? I'm waiting to see BEST RHEUMY to even think about a biopsy. I do know that the hospital doesn't get too many Sjogrens patients especially one who grows fibrous tissue in their lungs. I am going to end this now and will talk more when you all have anything to say to me. It feels strange to have all this stuff--but when I think back on the last year and especially 6 months, I've cancelled or ruined 2 vacations, done nothing but lay around. I want to see what I can do. Lucy
Lucy, I am glad that if you do better with oxygen that you will have it. My husband is on it, and he wouldn't be without it. His mom use to suffer so much, and once when she was visiting us, she tried his out, and when they went back home, it wasn't long until my father in law had her oxygen ordered by her doctor. It was such a blessing to her.
susanep :)
Lucy,
While all of that may be mind boggling to you, it is progress. You do have decisions to make. A biopsy,huh? Could that definitively tell them what kind of disease it is? Could it help with treatment or change the treatment plan? As for the steroids and Imuran , its not so bad. I took Imuran for 5 years and may take it again soon, you will gradually work up on the dose to minimize side effects. Now the prednisone can be a beast but just grin and realize it should be short term. I hate it too but it is a part of my life anymore. :o
You deserve to live your life. Fight for it. I hope all of these things the docs do for you help you so much. Use the oxygen and don't worry about what anyone else thinks. Shame on them, they don't know you.
I cant help you with the doctor dilemma. Use your gut instincts on that. You are the patient, do what is right for you. CK
Hi Lucy:) I am so glad you had a good appointment. Not happy about the issues or meds though. I would guess that U of M wants you to stay with them only, because it gets very confusing for them when we go to other docs too.
I find when I do that to them, they get a little frustrated because they cannot keep track of meds etc as well.
I am just so glad they are taking everything seriously!
Designer. ps. I am really sorry about the oxygen:(
I am being monitored by a pulmonologist yearly. I have some spots on my lungs that he thinks are being caused by Sjogrens. They come and go, get bigger and smaller but a bronchoscopy didn't show anything. Other than having a lung biopsy (which he doesn't think I need at this time), he doesn't really know what it is and thinks it is cause by Sjogrens.
So it is possible.
Pisces--I am a former smoker, quit in 1989 and had some damage done via emphysema. But this is something more going on besides the emphysema. A CT scan on my lungs showed up things I can't even remember=ground glass-like opacity and other different names of conditions.
I am not even luke warm on the biopsy but will ask my rheumy and GP what they think of a biopsy. This is a through the rib they are talking about which is apparently quite a procedure. Not sure if I care what's causing it, or even if it makes a difference. Lucy
Lucy, I would guess that the U thinks it is easier to have you doctoring all in one place. It really is easier, but sometimes a person has to give up those doctors that we love.
It sounds like you had a good appt and that they are delving into the issues that are plaguing you. I think it is prudent to consider the necessity of a lung biopsy, however, if it was me I would ask them their reason for wanting it done and what they hope to gain with the information.
I think they are also being prudent with the prednisone and the imuran. You have been on the methotrexate for all those years and it sounds like your autoimmune disease has escalated and needs to be treated with a stronger medication. My docs are also considering imuran for me and my doc visit this next week may find me with a script for it. I have been on the prednisone for a couple months now. Normally on 10 mgm every other day but had such a "flare" this winter that my neuro put me on 20 mgm a day in January and I am down to 15 mom a day now. I am so much better on this, but I can't stay on it forever.
Don't be afraid of the prednisone. It has side effects, but when we get really sick sick it really does help us. Imuran has its side effects like all drugs, but I have questioned my 2 immunologists and they say that the problems usually affect about 10% of those taking it. They do the blood work to see how we are getting along. People who have been on it without problems are usually very pleased with the results. Being sick and taking these meds is always a crapshoot, but when the time comes I guess we just have to bite the bullet and pray for the best.
Hope you improve on the prednisone and can get things going in a positive direction. By the way, sometimes being on oxygen at night makes a world of difference for people. It helps to get the blood oxygen elevated and with a better oxygenated sleep the days can be much better. My sjoggie girlfriend has done that for several years with good results. She hauls her concentrator on her vacations. Good luck. IRish
Oh lucy..you poor thing..Glad your seeing our Doc B today. Hope all goes well. She put me on Imuran years ago, and actually felt so much better overnight on it..I couldnt believe it..Then, I got a yeast infection in my esophagus and had to stop it..well, when I tried to start it again
about 2 months later...(same dose) my body just flipped out. I got so sick to my stomach..vomiting all night, etc??? I tried several attempts
after that and still got super sick? very strange. Maybe you can try this, and small amount of prednisone to start and see how your feeling?
Let me know how it goes.....good luck
Gursie
Lucy - sounds like you make some significant progress at your drs visit. Changing drs is a difficult decision, not one to be taken lightly, bu I see their point of view in that they want everything in one place (paperwork and documentation wise)...I would use my gut instinct as another member stated. Leaving a rheumy you really like is very hard. I LOVE my rheumy, he has been great to me, but his facility is quite a ways away so I am contemplating leaving and trying to find another one closer - not sure if I want to do this, but when I am feeling really sick, the last thing I want to do is get in the car and have to drive a long distance, but then again, I want the best care...so some things are worth it I guess!
Medications are a scary thing, especially the prednisone. I was on it for almost three months and for the most part, while I was on it, I felt great - I had some difficulty in the beginning with my body adjusting to it and having more anxiety, heart palpitations and a sense of needing to be on the move all the time, and when I started tapering each week I went down 5 mg my body had some adjustments for the two days following the new dose, but I must admit, I could breathe better, sleep better at night (which I guess is a rarity for folks on prednisone, most have difficulty sleeping - I did not!), but once I went off it I got a horrible cold/bronchitis that required two rounds of antibiotics. Now that I am off of it I must admit I am not breathing as great as I was! So all medications have upsides and downsides, but we all deserve to feel better so if you do not try the medications you will not know if you will feel better and be able to lead a more "normal", fulfilling life or not.
I have a sister who had a lung biospy who said it was not a big deal at all - but everything is relative to the person who is having the procedure(s) done. If they think it will provide much needed answers and work toward treating you, then you should definitely consider it.
I wish you the best of luck, it sounds like you are on your way to starting to feel better and that my sjoggie friend is something to cheer about!
I had an appointment with my rheumatologist who is NOT with U of MI. She is in private practice and has been my rheum since I was diagnosed in 2007ish. The diagnosis was by U of MI and then I found my FAVE RHEUMY right away and have stayed with her even though she is a three hour round trip.
My appointment went well and she helped me make some decisions that are subject to change. I am female. She agreed with the treatment plan of o2 and Imuran and Prednisone. (Not thrilled but will see where this goes.) At this time I am not thinking of a lung biopsy. Someone said it "was no big deal" but the kind of biopsy they are talking about means you will be in the hospital for a number of days. Then there will be a chest tube. Then the risk of MRSA and all the other killers. All so they can have a piece of tissue. So unless something changes, I will not be doing that.
My dr thinks I should wear the oxygen while out walking, just as I was about to dismiss this in my mind. I'd save the o2 times for when I'm at home doing things and at night. I will need to see how much this stuff helps me and when I need it most.
I am going to keep my rheumy for those duties. I will talk with the drs at U of MI about staying with them or getting one closer (once my treatment is settled down.) Doing things with a hose attached to my nose is somewhat of a dilemms. Fortunately, we have a small house and I can go in any room with a 50' hose. Will have to hook up something for the basement so I can do laundry and exercise on my treadmill.
I will post on my progress (or lack thereof) with all this new stuff. First of all I must make it to the drug store to get the prednisone and Imuran.
You probably know this, but supplemental oxygen can be extremely drying. I know for inpatients they can attach a humidifier to the line so the air is moister. You may want to ask if something similar is available for portable oxygen.
I hope things improve for you!
I have not gone through all the materials, instructions yet, but it seems like I saw something about a "water bottle" humidifier. I'll be checking it out soon. Right now, my nose wants to run, No stuffiness or sinus problem, just watery wants to run. I'll have to get used to all this.
I for one am happy the gave you Imuran assuming you tolerate it well. I hope it provides some relief. Give it a lot of time (6-12 months), keep an eye on CBC & CMP, and make sure they don't under/overdose you.
Styx
Thoughts are with you sweetie..just hoping/praying the Imuran works good for you. Like I mentioned..it really helped me overnight..I couldnt believe it..how much pred are they giving you?
Gursie
The dr from U of M called me today. Really! Asked how I was doing--but, also she had forgotten that I will need to add an antibiotic to my new regimen of Imuran and Prednisone. Otherwise
I might get pneumonia.
Actually, I haven't even gone to the drug store to pick up the Imuran etc. It is a good thing, just saved me another trip. I will pick up the whole bundle of drugs tomorrow. I've worn the oxygen two nights now and parts of the evening. I must say it's different dragging around a 50' hose. My hubby will be able to do a little work around the house and maybe put up some hooks that will hold the hose up off the floor.
I am getting a feel of how my new situation is relating to my relatives. (Not my hubby). I know that one has contacted another and another. Not in a gossipy way, just saying. I am not getting any phone calls or emails about my new hose nose. I'm guessing they don't know whether to offer sympathy or congratulations. I must say I am having a hard time envisioning the future with my o2.
@Gurs-Not sure on the % of Prednisone. I haven't picked up the meds yet.
A giant (and careful) hug to you! I'm glad the UofM doctors took all your issues seriously and immediately launched into a plan to get you feeling better. Yes, it is scary to try new medicines and I can only imagine how awkward an O2 tank would be. But hang in there and keep the hope that in a few weeks you will feel like a whole new person!
I go to the rheummy's at the UofM and have always been very pleased with them. But can't blame you for wanting to keep the doctor you've made a connection with too. Maybe just give it some time and see how it works out.
Good luck with all these life-changes and be kind to yourself. It will take awhile to adjust. Give yourself that time.
Deb
I would start the pred, then the Imuran, then add the antibiotics a day or two later. See how you tolerate the Imuran first..adding the antibiotics same time, you might not be able to tell whats bothering you, if anything is? just my thoughts...Im no doc.
Sure you will do well with it though. good luck...PM me whenever ok?
Gursie