Ok...I'm in a quandry. So after having a bad virus/bronchitis in early June that lasted until early September I was sent to a pulmonary doc who determined that Sjogrens is effecting my lungs and that they have become smaller than usual and scarred from years of bronchitis (breathing at 70 per cent). At the beginning of this summers virus I decided that the Cellcept that I was on was too dangerous and asked my rhumy if I could go back on Plaquenil. The pulmonary doctor agreed with this and said that I can't leave myself open to more lung infections but need to be agressive on my Sjogrens treatments.
I asked my rhumy if the 400 mg's of Plaquenil was agressive enough and she said NO. I need to either go on Cellcept or Rituxan. So one doc is telling me that Cellcept is too dangerous for me and the other is telling me to take it. Its just frustrating because its darn if you do or darn if you don't. Any thoughts?
Billy dude,
I wish I could comment on the Plaquenil, but I'm not there yet. I haven't taken it.
I do have a question though regarding the lung issues. How long have you had this? I'd appreciate knowing a bit more about whether you had bouts of bronchitis or it was more constant and symptoms that you had.
I have bronchitis about once a year and pneumonia every once and awhile. I have noticed that my breathing has changed-- i am often short of breath, have a constant dry cough. when I lie down, it's worse. I recently had surgery and my oxygen levels were really low and the anestesia nurse cautioned me that "was not not normal" as far as recovery. However, when my doctor listens to my chest, he says that it sounds clear.
Did this develop slowly for you? Have you felt symptoms or was this more immediate? Did your doctor notice the bronchitis from listening to your chest? I know that I don't have bronchitis, but I feel like every year, My lung issues get worse. My gastro doc thinks a good bit of mine may be from extreme GERD issues and just general dryness.
I'd like to know what exactly the Plaquenil is effective for. My doctor will not prescribe Plaquenil or any immune-suppressing drug for Sjogrens; however, I know that many people on this forum are on it. Did you find Plaquenil was helpful from your previous experience?
When it comes to autoimmune, I'd go with the rheumy over the pulmonary; but it wouldn't hurt to get a second (or third??) opinion if you can afford it or your insurance would pay.
It is my understanding that plaquenil is the first line treatment for Sjogrens but if there is systemic organ involvement. Such as lungs, nerves,etc stronger immunosuppressants are needed. I started out on plaque nil but eventually went on cytoxan for gastroparesis, have been on other immunosuppressants for neuro symptoms and will be starting IVIG next week.
Usually when organ involvement is included, more agressive treatment is needed.I would go with the Rheumy's advice but if you're not sure then you can always get a few more opinions.Your health is more important than anything else, so you have to be 100% sure that it will make you better and not worse.
Be dam sure about the lung problems before even considering Rituxin,, its harsh,, dangerous, and will wipe out a lot of your immune system,, if you have lunng problems,, rituxin will make things worse,,, I had that stuff,, but wont do it again,,, its just to invasive for me,,,
I agree Navydad. I don't plan on taking Rituxan.
Kwolf...I've had bronchitis a couple of times a year since I was a kid. My pulmonary doctor (who I think is the brightest doctor I've ever met) said that it is not normal to be getting bronchitis that often since a kid and that is an indicator of an underlying problem. I think that the lung infections I get now as I'm older get worse and worse. So, to answer your question I think it started as a kid. I can look back and see small Sjogrens signals even as a kid. Like going to the dentist as a kid and having 27 cavaties. Or, having joint neck pain so back I'd miss school.
But the big question is with systemic problems like this the supposed cure is possibly doing more hard than good.
I know from misguided thinking and misguided advice that the more heavy duty meds are soemthing to be thought about a long time unless your at deaths door,, Pulse steroids almost killed me,, Rituxin,, well I will only say I was never so sick as I was after taking that,, IVIG seemed to be doing me some good,, but since Mayo says I dont have SS,, and advised no more immunos,, or IVIG,, then its no more IVIG,,, so I sit and waste away,, SFN,, chronic infections,, and after looking voer the test results from Mayo,, I guesss Ilm just a superbly healthy sick man,, go figure
I'm so sorry Navydad that you still don't have all the answers. I'm frustrated enough with this one med dilimma so I can't imagine them not knowing all the answers. You should be a case for the tv program Mystery Diagnosis.
Quote from: Billydude on September 17, 2010, 09:05:45 AM
I agree Navydad. I don't plan on taking Rituxan.
Kwolf...I've had bronchitis a couple of times a year since I was a kid. My pulmonary doctor (who I think is the brightest doctor I've ever met) said that it is not normal to be getting bronchitis that often since a kid and that is an indicator of an underlying problem. I think that the lung infections I get now as I'm older get worse and worse. So, to answer your question I think it started as a kid. I can look back and see small Sjogrens signals even as a kid. Like going to the dentist as a kid and having 27 cavaties. Or, having joint neck pain so back I'd miss school.
But the big question is with systemic problems like this the supposed cure is possibly doing more hard than good.
Thank you. That's helps my concern. I also have been chronically sick-- all the way from childhood. I get bronchitis once a year but I haven't had a single general doc until recently. In looking back over my records, I see the same complaints over and over.
I'll keep an eye and for your posts and hope that you find something. Pnemonia is a dangerous thing. Have you taken the pneumonia vaccine? I had to have one before my surgery, but it hasn't helped my lung issues-- especially with the change of weather (and the fact that I teach and pick up every germ available).
Kwolf, one point about Plaquenil: it's not actually an immune suppressant. It's a DMARD (disease-modifying antirheumatic drug) and those of us who take it do so because it slows down the progression of this disease.
Prairie gal
Prairiegirl... I expected my rhumy to just increase the dosage on Plaquenil but she said back to Cellcept or Rituxan. Why wouldn't a stronger dose of Plaquenil be effective? I only take 400 mg a day and thats not very agressive.
I don't think Plaquenil is an aggressive treatment at all.
I was unaware that 400 mg is NOT an aggressive dose. What size dose would be "high"?
Does anyone out there take a higher dose? Do you notice a difference?
I think most of us take 400 mg/day. Some who are just starting up do lesser doses to start, also some who may be a little too sensitive may take lesser amounts. See what others say. Lucy
Hi
I always thought of Plaquenil as a kind of 'holding' mechanism. I perceived prednisone and methotrexate to be aggressive treatments.
Just my perception. Maybe its because I can tolerate Plaquenil so well that I perceive it like that.
Take care - Scottie
Plaquenil lowered my platelets...couldnt take it...Took rituxan 2 weeks apart every 6 months..for 3 treatments....Cured my lung disease...I also get IVIG for 4 years now...will get another Pet scan in November to see if everything is still clear..My DR. Swartz pulmonary doc is at univ. of Penn. I think of him as a miracle worker....no more oxygen for me,,Sp please...dont be afraid & try it...every one is different...Good Luck..
400mg is the standard maintainence dose of Plaquenil, I've been on it for 4 years now. There really isn't anything aggressive about Plaquenil, it only works in the background. I've been taking Methotrexate since last March and it is agrressisve and has made a big difference especially in the general fatigue area. However, when I was exposed to strep at the same time I was in the middle of of a big flare there was little they could do other then bombard me with antibiotics. I couldn't go off the MTX because my SJS would probably go out of control and who knows what it would do since I was already fighting a huge flare, so I was stuck battleing a systememic Strep infection for 7 weeks. It's a tough situation no matter how you look at it. This is the dangererous point of our illness, the complications that are mentioned only in brief on so many websites. I'm so sorry you're having such a hard time. I wish you the best of luck and hope you feel better soon. Jenn